There is Someone in There

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There is Someone in There

techniques series

There is Someone in There

Confidence and conscience in the care of an individual with an acquired brain injury

By Susanna Carolusson

ALOM EDITORES S.A. DE C.V.

Title in original from the Swedish language: Det finns någon därinne. Om vård, värde och värderingar vid förvärvad hjärnskada First edition in the English language, Mexico, 2010 © Studentlitteratur, 2002 © Alom Editores, S.A. de C.V., 2008 © Susanna Carolusson, 2010 Studentlitteratur, Box 141, SE-221 00 LUND, Sweden, transferred the rights of the Swedish version to Susanna Carolusson, the author, in June 2010. Susanna Carolusson, the author, owns the right of translated versions. Translation: Annie Sarnblad, Sarnblad Communications, Telephone: +65 6468-6980, E-mail: [email protected] Re illustrations: In this book, the author has made the illustrations from pictures and paintings made by herself (photos) or by Tobias Carolusson (paintings and the front picture) Cover: Acrylic “The Earth” by Tobias Carolusson Design: Carmen Ramírez Hernández Edition: Malú de Dios [email protected] Alom Editores, S.A. de C.V. José Ma. Velasco 72-402 Telephones: 8500-6161, 8500-6262, 8500-6363, 5593-5875 [email protected] www.hipnosis.com.mx ISBN 978-607-95269-8-6 Printed and made in Mexico

The logo of Centro Ericksoniano de Mexico is a glyph, or engraving, from the Sacred Mayan Calendar, the Tzolkin. It is called CIMI and it means “The One Who Connects Different Worlds,” representing a bridge, a link. It is also the symbol for change. The vision and the mission of Centro Ericksoniano de Mexico is to connect Science and Spirituality; Research and Clinical Work; Medicine and Healing; Knowledge and Service; Reason, Body and Emotions, the 'Inner' and the 'Outer'; being the bridge connecting past, present, and future of those consulting us, linking people, families and groups coming to us. While adopting this sacred symbol as a logo, we, at the Centro Ericksoniano de Mexico, formally offer ourselves as a link to build this connection, as far is it is possible to do it from here—embracing the connection—working as a team which collaborates, participates and grows together.

Table of Contents

Foreword

13

Introduction

15

Part I: Intensive Care and Hospitalization

19

A Dream of Silence

21

“Young men and women in the Staff Room” Discussion Questions

22

What Happened?

25

Life Threatening Brain Swelling Discussion Questions

27

Silence is the Only Answer Discussion Questions

29

Support from Those Around Us Discussion Questions

32

Some People Pray

34

Professional and Next of Kin – A Conflict of Roles? Discussion Questions

35

“This is a Very Severe Injury”

38

“There is Someone in There” Discussion Questions

39

On the Seventh Day I Knew or Thank You God, Thank You

41

Out of the Anesthesia Discussion Questions

42

A Blink Means Yes!

45

9

I Take Care of Myself

46

An Arm Up to the Ceiling

47

Trading the Drip for the Feeding Tube

48

He Can’t Urinate on His Own Discussion Questions

49

“This Little Man Doesn’t Want to Eat” Discussion Questions

52

“I'll Put the Newspaper Here” Discussion Questions

54

A Beer! Discussion Questions

56

“How do you do it?”

59

Love Discussion Questions

61

Hypnosis Discussion Questions

62

Hospital staff – the Fantastic and the Fearful Discussion Questions

66

Part II: Rehabilitation

10

69

“You’ll Have to Wait with this Hypnosis Thing” Discussion Questions

71

“Everything We Do Focuses on the Patient”

74

Family Members Should Know their Place

76

On the Way Back, or Towards Something Else Discussion Questions

80

Longing for the Operation

85

Relapse

86

Part III: Daily Life and Disabilities Small Practical Things and Long Term Goals Psychological Perspective and Issues Visions and Alternative Views Discussion Questions

87 89 94 96

Progress, Hope and Meaning

100

But What a String! Discussion Questions

104

“Difficulty Yes – Aphasia No”

107

Time Passes Discussion Questions

110

Dalheimer’s House – An Activity Center for the Mentally and Physically Challenged

112

LASS and the Swedish Social Insurance Office Discussion Questions

116

2 Years and 6 Months After the Accident Discussion Questions

121

Complicated Grief

123

A New Friend

127

More Setbacks

131

2 Years and 9 Months After the Accident

133

2 Years and 10 Months After the Accident Discussion Questions

136

11

What’s Happening – Two Years Back! Discussion Questions

140

And What about Deodorant? Discussion Questions

145

To Have a Handicap or to be Handicapped

150

Social Surveillance Discussion Questions

153

Self Examination Discussion Questions

154

Yet Another Setback – Who is Going to Have the Energy to Read This? Discussion Questions

160

Are You in There?

170

Four Years Gone Discussion Questions

172

A Best Man of Few Words

178

Accepting the Unknown Discussion Questions

180

Last Word

185

Appendix By Bertil Rydenhag, senior doctor and associate professor in Neurosurgery at Sahlgrenska University Hospital

186

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FOREWORD By Peter Währborg, Senior Physician and Associate Professor at Sahlgrenska University Hospital, licensed psychologist, licensed psychotherapist

Susanna Carolusson begins her book with the words, “This is a book about a perfectly healthy 23 year old who acquires a lifelong disability.” In reality, however, her book is not only about her son, Tobias, the person who has suffered a nearly fatal accident, but also about Susanna and the rest of her family. In an instant, not only Tobias’ life, but the lives of his entire family are ripped to shreds. This is a book about struggle, joy, sorrow and desperation. It is written by a woman who suddenly finds herself simultaneously in the role of both mother and professional, and both are put to the test. I have worked with brain damaged individuals, both young and old, for almost 20 years. One of the most important things I have learned is that the kind of injury that happened to Tobias affects the entire family and the entire network of which s/he is a part. Neither the changes in the injured person's immediate world nor the situation in which s/he finds him or herself can be described in strictly medical terms. But Susanna shares these with us in a personal, intimate way. It takes courage to do this. Susanna has an unusual, and at times, almost brutal passion for justice. No feelings or situations come up without her reviewing them critically. It is exactly this confrontational expression of her integrity that makes her story so gripping. She gives us a story about a terrible tragedy and makes it possible for us to begin to understand something so painful that it is almost impossible to comprehend. At the same time, her story helps give us the courage to try to act effectively in similarly difficult situations. This book is also a book about a search for meaning. The search for meaning is typical of both the brain damaged individual himself and of the family members who are trying to come to terms with the effect of that injury on their own lives. Sometimes this search is akin to groping in the dark, but sometimes it is crowned with the kind of success that ultimately manifests itself in faith, hope and love. Some factors are especially meaningful for the rehabilitation of brain damaged individuals. These include the location and extent of the brain injury, the injured person’s previous personality, and his or

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her family members’ understanding of the injury and their attitude towards it. There is clear scientific evidence that the injured person’s attitude affects both the quality of life and his or her level of functioning. A positive attitude on the part of his family members also makes a difference in the degree of recovery. It is not possible to do much about the location and extent of the injury or about the personality of the injured person, but attitudes are subject to change. A good silent prayer in such a situation is the one that says, “Grant me the serenity to accept the things I cannot change and the courage to change the things I can...” Patience and change are the central themes of Susanna’s book. The challenges described in the book lie in the possibilities and impossibilities of change. And who really knows what is possible? Sometimes it is enormously liberating to meet the kind of strength that never lets itself be repressed, that never gives up, and that is always emotionally present in the face of a tragedy. And that is the kind of resolve and determination that are demonstrated by Susanna, and that she is able to turn into successes, even if those successes are small and slow to develop.

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INTRODUCTION

This is a book about a perfectly healthy 23 year old who acquires a lifelong disability. It is about the greatest fear parents have concerning their children, that their child will be the victim of an accident and will be deprived of their ability to think, move, speak or do anything we associate with the ability to live a full life. I am the author, as well as the mother of this book’s main character. Sometimes I appear to be the main character myself, since this account is told from my perspective and influenced by my own personal feelings. In spite of this and with the distance that comes from time, I have come to realize that my feelings should be left uncensored, partly because they accurately represent the reactions of family members, and partly because, looking back, I can see that these feelings gave me the strength to act in the interest of my son. I also feel my reactions were in touch with reality. This goes against most crisis theories that teach that denial and being out of touch with reality are the normal reactions to be expected in a crisis. I have described separate happenings and reflections which took place during a long and significantly more complicated process than I am able to do justice to on paper. Instead of simply reading a detailed story, the reader is invited to consider his or her own reactions to a series of events which make up an endless chain of events. The book stretches over a time period starting with the accident and reaching up to a little more than four years later. The process began with a tragedy; a bicycle accident which took my son Tobias’ life -- or at least the life which he led up to that moment in time. I’d like the reader to get a glimpse of how complicated such a process can be, in its desperation, sorrow, hope, and in its spiritual impact. I’d also hope to convey a sense of the meaning and significance of these events and of the power of love in dealing with them on a daily basis. I am writing from the perspective of both a mother and psychologist, simply because I am both. My identity as a psychologist is so much a part of my personality that I can never remove myself from this perspective. I found that this was appreciated by many of the health care workers who helped our family, but it was appreciated most by Tobias. Unfortunately, my combined roll as a mother and psychologist was, to my great chagrin, perceived by some health care professionals as problematic. I was sometimes met with the attitude 15

that I should have left my profession at the door and simply acted like any other family member. This book is meant for family members and loved ones, hospital and rehabilitation professionals and caretakers, as well as for former patients who have lost physical and/or mental abilities. I hope to inspire family members and friends to participate in the care of their loved ones and to pay attention to their own feelings, with the confidence that it is their innate right to do so. I also hope to inspire neurologists and other health care professionals who work in emergency rooms, as well as in rehabilitation and daily care facilities, to see how much more can be given, without necessarily taking more time or costing more money. This book is also written for patients who have come far enough in their own process of rehabilitation that they have the strength to hear a story which reminds them of their own. The reader should know, however, that this is a story which does not avoid that which is difficult and that which I believe must be suffered through by all those who wish to continue their journey of personal maturation. Perhaps I can help one of these former patients find the strength to share with others how it really feels to have lost abilities others take for granted. During the period this book is written, there were many people who contributed important and even crucial input to my son's rehabilitation. I am aware that I have left out numerous such contributions and I hope that those people I have not mentioned still feel proud about their role in helping Tobias. There will also be those who will recognize themselves as being criticized. These readers are welcome to contact me if they wish to turn my criticism into an opportunity to discuss our different perspectives. It is not, in any case, my intention to make anyone feel like a failure. I believe that everyone intended to do his or her best for Tobias, so I hope that those who feel that I have been critical of them will ponder alternative ways of approaching similar situations and think about how they would want other people to act if they found themselves in a situation similar to ours. I also want to thank Tobias and the other brave people whose stories are told in this book for letting me publish intimate details, especially since I know that this type of detail is experienced by many as extremely private, too much so to “air in public”. The question of where one should draw the line between that which is personal, but can be shared, and that which is so intimate that its knowledge should stay inside the circle of family and close friends, is a subjective one. Tobias will be happy if he, with all of his social limitations, can still

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contribute to others by letting his uneven existence be described and read about. He will also be happy if he has the opportunity to inspire and influence others. That will strengthen his confidence and give his life more meaning. I also hope and believe that the book’s intimate examples will inspire its readers to open themselves for the written and unwritten questions which are raised by this story and which demand their own answers. I have added discussion questions for those readers who use this book in their studies or continuing education. I do not provide answers, nor do I wish to give the impression that there are any easy solutions in some of these difficult situations. Instead, the purpose of these discussion questions is to invite you to reflect upon and recognize yourself and your own role in the process of caring for individuals in situations like my son’s. It is also my hope to contribute to your own professional growth by sharing the perspective that has come from my intimate involvement in the story I have told. Professional growth is a developmental process that every professional must undergo, using their own personal experiences, ideals and values both as a starting point and as a foundation. Solutions, as well as answers to general questions on health care issues, can of course be found in research literature whose main intent is to communicate facts. This book, however, is dedicated to the emotional and practical significance of facing day-to-day reality in the kind of difficult situation I have described. The competencies explored here are more of the sort that express themselves in personal reflections and in emotional responses and personal values -- in interest, honesty, tact, compassion, clarity and the ability to set limits. On one hand, these are qualities that can be cultivated and developed, but in all practical terms, they vary from one relationship to another. In achieving what I would like to call “psychological resonance”, general evidence can never be the guide in specific, concrete situations. It is for this reason that I repeatedly use an inquiry based teaching technique based on questions which I hope will encourage reflection and critical thinking. This book can be used in study groups as well as in professional work groups. I recommend that the questions be discussed under the leadership of a psychologist or counselor who has experience leading discussions focusing on large and small questions surrounding existential questions such as the meaning of life and the nature of professional treatment relationships. Those close to me who have read the manuscript, including Bertil Rydenhag, the author of the appendix, have said that the book “stands

17

alone”, even without the discussion questions. In other words, the book not only lends itself to those uses noted above, but should also appeal to anyone who is interested in life’s surprises and the effects a physical and psychological trauma can have on a family.

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PART I Intensive Care and Hospitalization

A Dream of Silence It’s Monday morning, July 29, 1996. I wake up and remember a peculiar dream about the significance of silence. The feeling fills me long after I have woken, it is strong and completely new. Let me recapitulate the dream: The telephone rings in the middle of the night and wakes me up. I answer. One of my colleagues, with the same name as I have, needs my help. I make my way across town and arrive at a large building which looks like a hospital and is next to a big park. I go in and start searching the building finally finding my colleague in a big room. She is sitting on an old fashioned hospital bed and needs help. I know nothing of what has happened and don’t know what she wants. There is only one thing I do know, immediately. I can put my arms around her silently and only through the silence can I reach her. I am deeply convinced that words are impossible now. They would alienate in a way that would interfere with the intuitive communication we are able to reach in total silence. She doesn’t need words. She doesn’t want them. Words get in the way. I leave the dream, somewhat in awe. I find no associations to anything that has happened to me recently. Nothing of recent events, thoughts or discussions, which most dreams relate to. It leaves me wondering, and the instinct about the significance of silence touches me and like a compelling film leaves an echo of questions, questions which must not be discarded.

21

“The young men and women are in the Staff Room” It’s Friday night August 2, 1996. I am unusually tired and go to bed early, around nine o'clock. At midnight I am awoken from a deep sleep by the sound of the telephone ringing. Half awake I hear my husband, Tore, answer. I go back to sleep, but wake up again, irreversibly, at the sound of his words, “Fell off his bicycle?” Our oldest son, Tobias, has fallen off his bicycle and we are on our way to the emergency room. One thing hits us immediately - you don’t call the parents of a 23 year old and ask them to come right away unless the situation is critical. I think about the way they say on the news that someone is in “critical condition” when they can’t foretell the outcome of an accident. I remember a teacher in school explaining to us that the difference between a situation being serious or critical depends on whether the patient’s life is threatened. Our cat watches us, her green eyes filled with wonder. We fly about, dressing, finding the boat schedule, where is it? We can’t miss the last boat. The boat to the mainland leaves in ten minutes! We grab a cell phone and throw ourselves on our bicycles only to arrive at an empty pier. In our haste we had, of course, misread the boat schedule, so now we have twenty terrible minutes ahead of us as we wait for the boat to dock and let us on board. We then sit in worried silence during the never ending sixteen minutes of the boat journey. The taxi ride feels just as long. The driver tries to be sociable, as is often the case, but we make no attempt to accommodate him. In the emergency room, we are met by a kind nurse who informs us that “Tobias has had a head injury, maybe more. He is being X-rayed now and will go directly into the operating room. You will be informed as soon as the operation is over. You can sit and wait in the staff room.” My mind is clear and rational. I understand what she tells me and what it means. That Tobias has hit his head so badly that they have to operate and he might die. It's the next sentence I can’t understand. “The other young men and women are waiting in the staff room.” What does she mean, “The other young men and women?” We’re his family. We’re his next of kin! What do they think this is, a coffee date? And who do I see first, if it isn’t the mother of Tobias’ girlfriend. What is she doing here? She walks over to me offering small talk as if this were just any other social event. I don’t want these words! Later, I am told that in this horrific situation Tobias’ girlfriend called her parents and asked them to come, which is completely understandable. 22

We react so differently! Tobias’ girlfriend’s father watches hockey on the TV in the staff room, as does Tobias’ friend, when he isn’t jotting down something on a piece of paper, or falling asleep on the sofa. The girlfriend goes out and smokes, and so does Tore. Most of them move restlessly back and forth, pacing up and down or distracting themselves, which is a normal reaction, seeing how helpless we are. Mårten, Tobias’ two year younger brother hugs me hard and cries, cries and cries. “It’s not true”, he says, “this is a movie”. He wears a white, bloody towel wrapped around his right hand. He isn’t hurt. It’s Tobias’ blood. I sit almost completely silent during the five hours of waiting. I don’t want to talk. I just want to concentrate my thoughts and send hope to Tobias, I focus my calming thoughts directly on him. Prayer, maybe it’s called. Or healing. A magical attempt to affect that which I could have just as easily reacted to in total helplessness. Now I don’t have to. Just after five o’clock in the morning, the emergency room nurse comes out and informs us that we can come up to the ward Tobias is being transferred to. The operation is over. I like this nurse. She is kind and straightforward and naturally thoughtful. No memorized phrases, no clichés. On the other hand, I do not like the neurosurgeon who updates us on Tobias’s situation while we sit outside the transfer ward, waiting for Tobias to come out of his operation. She radiates insecurity. And no wonder! We are not right now the typical small Swedish family that she surely is accustomed to. There are so many of us to address and manage, in a situation that she may never have experienced before. The neurosurgeon doesn’t say anything wrong exactly, but she wraps her words in what I would term learned kindness. Or could it just be that my intuition is telling me she wishes she were somewhere else where she didn’t have to perform this terrible task. She isn’t genuinely present in the moment, and I can feel my anger bubbling up. I feel like a mother who has just given birth, a lioness who will defend her helpless cubs at any cost but with no other weapon other than raw feeling and intuition. The neurosurgeon is soon replaced with the anesthesiologist who put Tobias under for his operation. She gives us clear and simple information, and there is no trace of empathy in her voice. She is right to inform us this way, and yet still I feel furious with her. At the same time I realize I should not let this feeling show. Only a few days later I come to love her, for her straightforward honesty, her natural

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thoughtfulness and her humble attitude towards our feeling of inadequacy. But in this moment the only person I would be able to love would be the one who would promise me Tobias’ life and health. And I know no one can do that. At six o’clock on Saturday morning Tore and I go home to try to sleep. We sit at the boat terminal on the mainland and wait for our boat. A man passes with his adult son. The son seems in some way mentally handicapped. I cry and glance at Tore. Is this our future? Discussion Questions • How do you feel about my tendency to immediately like or dislike members of the hospital staff? • What do you feel about the situation of the family and loved ones as they face a serious accident? • How do you feel about your own reactions which appear when you read my description? • What kind of family members do you feel are easiest to deal with in a situation like this? • What kind of family members do you feel are most difficult to deal with?

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What Happened? A miracle. Tobias has always been wild and time after time has escaped with only small scrapes from situations which could have ended badly. In the past, I eagerly drew the conclusion that Tobias was blessed with a guardian angel. This time maybe the guardian angel had someone else to save at the same time, or maybe the angel was just worn out after all the other interventions in Tobias’ wild life. This time Tobias’ younger brother Mårten was the angel that intervened. With the help of bits and pieces of memory that Tobias was able to communicate to me at a later point in time, along with the help of Mårten’s memory, we have pieced together the following conclusions about this puzzle: Tobias, his girlfriend, Mårten and two other friends all went out for dinner and a drink. When they were finished, they decided to go to a pub in the town center. At ten o’clock they left on their bicycles, with the friends taking up the lead, Tobias’ girlfriend at the ATM and Tobias bringing up the rear. Since Tobias is unsure whether or not he is last, he peddles faster, and with the help of Stigbergsliden, a steep bike path, he swishes down the hill, over the street crossing and back onto the bike path again, where he for some reason twists his head to the right, maybe to see where Mårten is. At this high speed, he is unable to keep the bike on course, the turn of his head causes him to crash into the curb of the sidewalk. His bike stops dead and Tobias flies head first over the bike. His foot catches in the handlebars and his body is thrown to the ground. There, next to the bike path is a cement barrier shaped like a concrete block and his head bangs directly into the edge. Like the chop of an axe. Here you might wonder if a helmet would have helped. Maybe, maybe not. With such a strong blow, even if the helmet had protected the head, he most likely would have broken his neck. We will never know the answer to that question. Back to the accident. His skull cracks like an eggshell, pieces of skull, brain matter and blood pour out. How can I write this? I am his mother! Horrifying details!!! Yes, they are grim, almost unthinkable details, but this is exactly what Mårten sees when he reaches the scene a couple of minutes later. Mårten’s first response is to ask the only man standing on the sidewalk to call an ambulance from the restaurant 50 meters down the street. The man is drunk and reacts with well intending comments, which are meaningless for Mårten. Mårten acts instinctively, telling some curious bystanders not to touch Tobias. He runs to the restaurant

25

and yells to the waiters to call an ambulance. They ask if Mårten is hurt. Every inefficient comment, every lost second, is more than irritating, so Mårten yells, “Not me, my brother and its fucking urgent!” He runs back to Tobias and leans over him to look for signs of life. Tobias head is lying in a big, thick pool of blood, which is growing in diameter. His breathing has been replaced with a strange gurgling sound. His eyes don’t see. Someone from the restaurant extends a towel to Mårten. Mårten presses it against the broken area on the left side of the brain to stop the flow of blood. Someone comes over and wants to roll Tobias over on to his side. Mårten says, with an authority that surpasses his twenty one years and without knowing why, that this is wrong. He stops every attempt to move Tobias from the now growing number of bystanders. Even the owner of the restaurant sees the misery. It is a terrible sight. Much later I find out that he went in to his employees and confirmed that the young man out there presumably didn’t have many minutes left to live. Why Mårten, with the CPR knowledge that every Swede has today, still refrained from trying to use it on Tobias, I will never know. Maybe it was simply that Tobias body seemed too fragile for such rough handling. Instead, Mårten bent down and pleaded in Tobias ear, “You have to breathe Tobias!” Nothing. Mårten leaned in and breathed into Tobias ear, carefully, choosing a rhythm that felt right. And Tobias began to breathe again. Mårten keeps the bloody towel around his hand for six hours, the six hours it takes until Tobias is transported from the operation to intensive care, where we again see his fragile body somewhere between life and death. But this time with the possibility of beginning to hope.

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Life Threatening Brain Swelling Machines, machines. They are probably what I will most remember from NICU, neurological intensive care unit. That is where Tobias is lying, asleep, but not dead. He is sleeping with the help of the strongest of drugs available and who knows if his injuries have also put him into a coma. No one knows and the only thing that matters is that his brain rests and engages in as little activity as possible. An EEG machine shows his brain activity and we can see that it hardly ever indicates that he is in a waking state. He is not supposed to be either. Even his blood pressure is measured and controlled by a machine and projected onto a screen. On the same screen, we can see the pressure of the liquid in the cavity in the brain which is usually set in motion and renewal by the body’s own drainage system. But now the brain reacts just like any other area of the body that has been hit hard, it swells. The swelling competes with the veins for space and, if the pressure on these veins becomes too great, there is a risk that the blood won’t arrive with oxygen where it’s needed. If areas of the brain are starved for oxygen, new injuries occur. So what do we do? What can we do? We watch the changes in liquid and blood pressure anxiously and stare dumbly at the screen without cease. They tell us what indicates normal values and what indicates critical values. The machine indicates that Tobias' situation is critical a couple of times when he has a fever. Not everything can be explained, and I appreciate the anesthesiologist, Eva, and her clear and honest explanations as to what she does and doesn’t know. The fact that no one from NIC tries to calm us down, no one tries to hide their inability to provide us with a prognosis, gives us the feeling we can trust them. We feel even better knowing they are watching Tobias carefully and are in control of everything they can possibly be in control of. If he dies, I will know that they have done everything they could to save him. Once when we are standing and anxiously watching the balance between Tobias blood pressure and brain pressure, Eva tells us to try to do something else. “You are making yourselves miserable by constantly watching the screen.” On the other hand, maybe she’s wrong. It feels that way to me, and I am supported in this train of thought by research in the area of stress, something I have spent a lot of time on professionally. I know that our situation is characterized by the feeling of total helplessness and that feeling helpless in the face of danger is itself one of the most stressful 27

situations there is. The ability to fix the stressful situation and escape the threat entirely is, of course, one of the best stress reducers, but that isn’t possible in our situation. Lacking this option, it still helps some, to at least stay informed about what is happening. This is just what we are doing when we stare at the screen. Research shows that when given the “choice” between worry and anxiety, worry is the less stressful alternative. What differentiates worry from anxiety is that when you worry you have something concrete to focus your thoughts on. We actively focus on the blood pressure and brain pressure machines, and that feels better than just passively waiting. Discussion Questions At the time, I believed it would be the machines I would remember most from NIC. Now, several years later, looking back, I realize that it is not the machines, but instead the stark feeling of hope, of love for Tobias as well as the staff’s professional attitude and calm which remains. The professional attitude is hard to define – it is an attitude that is expressed through their smooth cooperation with each other and the fact that everything they did had the clear goal of ensuring that the patient survived. They didn’t falter in their concentration or attention for a single second. • What did all the machines signify to me, in my role as next of kin? • Do you believe that hospital staff can facilitate and/or get in the way of the feeling of hope and love between family and patient? If so; how? • Cooperation, concentration and attention: how can this kind of professional environment be created with the resources that are available today?

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Silence is the Only Answer “One must talk about that which is difficult, put your feelings into words”, is a cliché I have heard over and over. Of course, that is just what I would do after the accident for weeks, months and years. But when it was all fresh and it had just happened, there were no words and whatever words could have been, would only have succeeded in shutting off my feelings. In the beginning, silence was necessary and healthy for me. Classical crisis psychology, as described by Johan Cullberg, separates a crisis into consecutive phases: shock, reaction, processing and reorientation. During the first phase, “shock,” the person denies the seriousness of the situation, feels emotionally distraught, but is unaware of the intensity of the feelings. The event feels unreal, “as if it were a movie”. The shock phase enables the body to save energy by delaying an emotional reaction, so that energy can instead be spent on the things that are most necessary for practical survival. In Swedish, we use such expressions as, “keep your head cool” and “keep ice in your stomach” for the same phenomena. After Tobias’ accident, I do not react with the typical symptoms of shock. Why do I react immediately with both feeling and insight, without denying the seriousness of the situation? There are two answers to this. One is that I am Tobias’ mother and I have watched him grow up. He was an extremely curious and confident baby who was totally fearless. He wasn’t even afraid of heights, he just crawled right out into the air where I often caught him, though sometimes he fell and scraped himself or covered his body in bruises. As soon as he could walk, he did. Just trotted away. Happy and bubbly, he could walk for ages. In reality this meant that he walked until I got tired of sneaking after him and waiting for him to start wondering where mamma was. Later, when we started to set boundaries with words like, “You can’t...” he did anyway. He would upset his teacher by striking matches in his desk, on a sports vacation he climbed several stories up the outside of the skiing lodge to sneak beer off the tour leader's balcony. First try, then learn, could have been the mantra of his childhood and adolescence. Sometimes I wondered if he suffered from mild brain damage. Today there are so many diagnoses which point towards that. But he didn’t have any learning disabilities or speech impediments nor did he have concentration difficulties, and he certainly didn’t show any signs of being a loner. He was open and well liked by his friends and read fluently by the time he was four years old. He was good at expressing

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himself, had an advanced vocabulary, loved to talk and he was both charming and a good listener. On the other hand, even if there was a diagnosis that would have applied to him, I don’t know what I would have done with it. But maybe it would have been easier to understand how Tobias always wanted to learn things his way, not somebody else’s. Maybe he wouldn’t have lost confidence in the grown up world the way he eventually did at school. And maybe without that loss of trust, he would have been more careful and had better judgment. But nobody knows. Our other son, Mårten, is the exact opposite. Thinks first, then acts. So I knew, and often considered that if ever one of our sons were to end up in an accident, it would be Tobias. In sum, I wasn’t totally unprepared. The other reason I immediately reacted without losing touch with my feelings or insight into the situation, was because of my profession as a psychologist and psychotherapist. Over and over, I have watched with sympathy as clients go through sorrow, devastation, and other “unbearable” feelings. And over and over, I have seen that it is not the feelings themselves that are dangerous – rather, it is the fear of the feelings that causes problems. My own life experience has only served to strengthen this perspective. Now back to the beginning of the chapter. I learned something that the psychology books don’t tell you. That just when your feelings are the strongest and rawest, every word becomes an intellectualization, alienating and separating from the actual experience of the feeling. I believe that this is what my dream of silence told me four days before the night of the accident. Don’t ask how this is possible. Discussion Questions Silence is undeniably crucial for me. Maybe silence needs to be a more accepted form of being together in a critical situation. The ability to stand silence depends on to what degree people are in touch with their feelings. This is true of both staff and patients. A brain damaged patient cannot always reflect upon his or her feelings and his or her loved ones have more or less experience in expressing their feelings. Whether attitudes facilitate or impede partly depends on unspoken norms, and partly on one’s own personal experiences of accepting and dealing with different emotions. The same is true of silence – how much people around you accept it, and how well they are able to interpret it, can either validate you, make you uncomfortable, give you space or suffocate you. 30

With the help of the questions below, the discussion group can clarify their opinions about the emotional climate of their working environment. Allow yourself to brainstorm: your answers don’t need to lead anywhere now, just try to become more aware of your own thoughts and feelings and those of the people you confide in. • How do you think your colleagues interpret your silence? • How do you interpret the needs and feelings of patients who are silent? Are there different kinds of silence? How do you react to silence? • What kinds of feelings do you absolutely not want to experience at work? • What kinds of feelings can you accept that you sometimes feel at work and which of these feelings can you share with your colleagues? • Which of these feelings would you most likely try to hide from your colleagues? • What kinds of feelings do you think that your colleagues would have a hard time accepting? • What feelings do you have the most difficulty seeing or accepting from patients? • What feelings are most difficult to deal with when it comes to the patient’s loved ones.

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Support from Those Around Us I get no sleep on Saturday, the day after the accident, even though sleep had been my goal when I left for the island in the early morning. Tore goes back to the hospital after a couple of hours rest. Instead, I head out for the island’s preschool, which is in the process of being renovated. There I receive the best help I can imagine, help that few in the health care industry can provide or even know enough about to recommend. As I leave, I intend to help out with the renovation work. This would be normal, since I am financially involved and part owner of the house. The carpenter and I have already established a working relationship. Today, the house is full of workers: carpenters, painters, electricians and a few teenagers helping out. Let me explain why I go there. The catastrophe has caused my body so much stress that I have to do something, must somehow use my body so that I don't become crazy from hopelessness and worry. The preschool as a work place is a context where there is a normal, everyday work environment with people carrying on with their work, despite my telling them about the accident. They work and chat in a lively way during their coffee breaks, without particularly minding that tears run down my cheeks every five minutes. They sympathize with my pain, but their work doesn’t cease nor do they stop joking with each other. Here is a place where I can just be, participate, without paralyzing the world with my presence and my state of crisis. I tell everyone I meet about the events of the night, neighbors, colleagues and acquaintances, just so that I can be myself, cry openly, whenever, wherever. Otherwise, I would have had to go hide somewhere or keep a stiff upper lip. And I don’t want to. Who would it benefit if I were to keep a stiff upper lip? Right now I am worried and sad all the time. Just having someone who doesn’t know what has happened ask me how I am, is enough to turn on the faucet and let the tears stream out. On Saturday night I do sleep, but it takes time to fall asleep. Every time I am about to doze off, I am woken up by my body twitching. As if I don’t dare to sleep for fear of being surprised by a catastrophe. I tell myself I need sleep, if not for myself, then for Tobias’ sake. And it helps. I sleep and I sleep deeply. My maternal responsibilities are my sleeping pills. On Sunday, when I get back from visiting Tobias, I go down to the beach. Now everyone knows what has happened, rumors spread 32

quickly on the island and this is a good thing. I walk out in the water to swim. It is the long summer of 1996, the summer that wouldn’t come to an end. Little Lisa, the carpenter’s daughter, walks up to me and says: “Where did Tobias hurt himself?” I point to the left side of my head and answer rather shortly. Lisa looks me straight in the eye and asks interested and without sympathy in her voice, “Is he dead?” To my “No” she reacts with a little hop in the water and a “Good!”, whereby she promptly turns to her friends to continue playing. This is healing for my soul. The children are innocent, spontaneous and heavenly, the sun is shining and I can swim. All the while, another reality is becoming a part of my life, a reality with consequences I cannot imagine. Those around me also give me support in the form of letters. “We are thinking of you.” A friend whose husband has had a virus that has affected his brain calls regularly to check on us. Even friends that we have thought of only as acquaintances, contact us to ask if there is anything they can do to help. It feels like a great, great comfort that they care. It is so easy for friends to feel inadequate when someone they care about is in a crisis, but a simple question, a postcard or a telephone call, to show you care can mean so much! Discussion Questions Those around us clearly react in the “right” way. This chapter shows a variety of reactions, carpenters who show sympathy, but continue to work and talk as usual, neighbors who show openly that they know what happened, the little girl who asks straight out about the worst possible outcome and acquaintances who send kind words. What do you think about the different styles of reactions people have when someone they care about is a victim of an accident of illness? I joined a group which wasn’t affected by the accident. Tore went back to the hospital after a couple of hours. Mårten stayed at the hospital the whole night and the next day too, without any sleep. Loved ones react differently. • How do you think you would react? • How would you want others to act towards you if you were in a similar situation?

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Some People Pray As a child, Tore’s father frightened him with his own image of God and Tore came to see God as guilt personified. As a grown man, Tore chose not to continue with an institutionalized belief in God and the ceremonies that go along with this. Despite this, one night in his desperation and hopelessness, Tore asked me to call our good friend who is a priest to ask him to hold prayers during the service at his church. It feels presumptuous, even arrogant, for us to ask a congregation that doesn’t even know us to pray for Tobias. I feel like I am acting shamelessly towards God to need him now. I, who have not often communicated with him since the bedtime prayers of childhood. Even his very existence is not something I have dared take for granted. So what happens? Well, Sunday after Sunday, they begin services by praying for our son in two or three congregations. In other words, a whole lot of people who do not even know Tobias, spend their time and energy wishing life into him. It is wonderful beyond my comprehension, and I find myself talking to God, just as I did when I was eight years old and had my own natural and personal relationship to God. “It’s a little shameless, needing God now....”, I wrote. It seems I am still affected by that kind of preaching from the altar which demands loyalty to God. But on the inside, this isn’t how I see God. Even worse, I know several priests who would meet my need for God with the attitude, “Right, you unfaithful sinner, then it is time to come now? Yes, now it is time to ask for help, but when everything was fine, you forgot all the prayers you were taught”. If this were the way God saw things, I would say to him, “I never took anything for granted, I have always been grateful and in awe that our children were healthy and strong. The only thing I have neglected is to thank you by your name. But if you in your secret existence have heard my thankfulness, then you must have known to take the credit for it”. The God I can imagine does not demand to be personally thanked and given attention. So I feel completely secure in my childish relationship to God. Who else would be the only parental figure I dare to act spoiled in front of – come when it suits me, turning otherwise towards the material world. For what is the meaning of life if not also material? And in that I mean that the mild light of the sinking sun is as material as love, smells and hope.

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Professional and Next of Kin – A Conflict of Roles? In the midst of the tragedy, I find I can use my professional knowledge. As a psychologist and psychotherapist, I work with hypnosis and visualization. I often lecture about the connection between body and mind, about how psychological states such as optimism or pessimism generate a corresponding attitude in the body. In my practice, I have witnessed the mind’s power over the body. Naturally, I make use of this knowledge now. It would be impossible for me to artificially split myself into a professional Susanna and a private Susanna and then decide to keep my professional side away from my relationship to my son. The reason I am writing this down is because, in Sweden in health care professions, the opposite opinion is considered legitimate. In the Swedish Psychologist Society's code of ethics there is a passage that discusses the danger of treating someone whose problems are too close to you. The thought is that such a degree of personal interest can cause the psychologist to unconsciously guide the patient’s experiences in a direction desired by the psychologist but to the detriment of the patient. According to this idea, which is considered both natural and a sign of professionalism among health care workers, I should act in the capacity of a mother, and only in the capacity of a mother, and refrain completely from acting in my professional capacity. If you are educated as a medical professional and your child is bleeding to death, would you refrain from using your knowledge because some rule says that you shouldn’t treat family members? Yes, according to the rules, if there are other professionals available who aren’t family members, they would do a better and more objective job. But I didn’t see any psychologists or psychotherapists in the intensive care ward, with knowledge about how to communicate with the unconscious, or with a genuine understanding of Tobias’ mind, nor did they know which words would touch his inner being and awaken his desire to live. The boundaries between professional psychological knowledge and parental intuition are difficult to define. My professional knowledge and experience have strengthened my ability to listen keenly and communicate on several levels, with my body, tone and choice of words. In an emergency, this all happens automatically. I ignite all my resources, because my son is floating between life and death. What else could I do other than help him in every way possible? And please don’t think that they made it difficult for me to help Tobias. Because the opposite is true. Here at NIC, neurological intensive care, family members are greeted with empathy and humility. 35

I make use of my knowledge of how to communicate with “the unconscious”, which when he is under anesthesia means just about all communication which could possibly affect Tobias. Before every painful procedure, I speak to him, in the way I think I can reach him best. Wait, maybe you are wondering why I use the word “painful” for someone who is under anesthesia. The answer is that there are studies and clinical tests that indicate that, despite the use of anesthesia and other drugs, a part of the mind registers the things that are happening around us, i.e. some kind of sensory perception is taking place and affecting the patient on a subcortical level. This either facilitates or impedes healing, depending on how the input is experienced, unconsciously. For example, when the medical staff is about to suction the mucus from Tobias’ lungs, they force a tub down his windpipe. We can tell Tobias is under stress because we see the stress reaction in his pupils. This is simple proof that the body is affected by the pain of the procedure. And that the drugs do not in fact stop the brain from perceiving and reacting to threats. My psychological training tells me that this can cause phobias – if Tobias survives, he may very well be forever afraid of hospitals, associating them with the smells, sounds and all the sensory perceptions associated with these painful procedures. And this would not be a good thing, especially since he will need hospitals for a long time. So I lean over his bed and speak softly into his ear, “Tobias, they are going to suction the mucus out of your lungs. This is a good thing. It will keep you lungs clean and healthy. And at the same time, you can relax completely.” (I nod to the nurse that she can begin). “You don't need to do anything, just relax. If it hurts, pretend you are somewhere else... a bathtub maybe? Or a shower... wherever you are comfortable... just feel how it feels to be there...” I continue speaking in the same way to help Tobias mentally imagine himself somewhere else, without trying to trick him. I know from experience that tricking Tobias is a very difficult thing to do. That is why I stress the word ”pretend” when I tell him to think about being somewhere else. It is only much later that I realize that this was unnecessary. The truth is that Tobias is in an imaginary world and this imaginary world is the only reality he knows for the time being. The nurse is amazed. She sees for the first time how a patient under anesthesia fails to react with stress in his pupils as she suctions the mucus from his lungs. Tobias is completely relaxed. Maybe it seems strange and unusual that hypnotic communication is possible under the effects of anesthesia, but the above description indicates exactly this. 36

For anyone who doesn’t know much about clinical hypnosis, you might be familiar with the fact that all of us find ourselves at different levels of mental awareness at different times. Sometimes we’re “lost in thought” in a daydream; sometimes we focus all our concentration on a particularly demanding task; sometimes we are open and aware of everything going on around us and ready to pay attention to each and every sensory perception we experience. When we are most open to impressions from those around us, we are also easily stressed and can become restless and have a hard time concentrating, unless we can manage to change our state of mind to one which to some extent screens out some of the sensory stimulus. Hypnosis is usually very sectioned off from our every day world and if we are guided carefully by the good intentions of a professional helper, this state can be extremely beneficial and can contribute to healing, if healing is at all possible. In a hypnotic state, critical thinking is replaced with room for the experience itself. That means that you are more susceptible to being influenced. It is also why it is extremely important that the person treating the patient is careful with his/her choice of words, so that the words fit well with the patient’s needs, motivation and values. Trying to influence the patient with anything that is contrary to his or her own values can cause them to feel conflicted and anxious. One can assume that a patient who is under anesthesia, or who for some other reason doesn’t have access to the normal process of critical thinking, finds him or herself in a state similar to hypnosis all the time. It is for this reason that patients in such a state are unable to defend themselves against statements or suggestions that are in conflict with their needs, values or sense of security. It would make sense then that “wrong” suggestions create anxiety, which, even though it cannot be expressed, should at least be noticed and treated with respect by staff. Discussion Questions • What experience do you have with patients or clients with neurological or medical impediments to critical thinking? • Do you recognize the state of hypnosis, either in patients or in yourself? • Do you recognize the hypnotic communication I had with Tobias from your own experience (even if you called it something else)? • What conclusions can you draw for your own life/work from this chapter? 37

“This is a Very Severe Injury” We gratefully make use of the doctors offer to let us come to them whenever we have questions. When our anxiety and worry feels unbearable, that is just what we do – stop someone to ask more about Tobias’ status. Why? Do we really need to hear about all the small details that we can’t do anything about? It seems unnecessary for us to be informed about all the medicines and chemical preparations given to Tobias with chemical combinations we can neither understand nor discuss. But yes! This is all we have at the moment of our beloved Tobias. In his present state, he is, at most, our perceived memories of his personality and soul. But in the hospital room, he is merely, only just a living body. We repeat our questions to patient doctors. They answer, “Status is critical... the injury is to the left side of the brain. This usually means paralysis, we don’t know how much... it could be a hand, it could be the whole left side... speech could be impaired, we just don’t know... The brain is so complex...” The only consistent answer we get, no matter who or what we ask is, “we can’t make any promises, this is a very serious injury”. And when we dare to ask if this may mean that he won’t survive, the answer is always, “we don’t know”.

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“There is Someone in There” I do what I can do and for that reason don’t feel totally helpless. I am more and more convinced that Tobias is, on some level, registering what is happening, either physically, unconsciously or in some other way. Most healthcare professionals who deal with people who are under anesthesia know that as long as we are alive, we can hear. Knowing this, of course I can’t just stand idly by. So I speak to Tobias in a way which I hope gives him strength and calms him. “When the nurses bathe you, we have to go out of the room so that it won’t be too crowded.” Actually, it’s not a question of space, rather one of the hospital rules that patients are to be treated with respect and not have to lie naked in front of visitors. Before it occurs to me that rules can be questioned, I break our contact and go out when Tobias is to be bathed. I say in Tobias ear, “They are going to bathe you. And you can just relax. They will wash you and you don’t need to do anything at all. Don’t need to try to do anything, just be calm. It will feel good to be washed, all clean, just relax. I’m going out and will be back soon. Bye.” And just as I say “bye” his EEG makes a big jump up, which never happens otherwise. This happens three of the following five times when I do the same thing. It really looks like he is reacting to my goodbye. Maybe with a goodbye of his own? And since rules are made to be broken, or at least questioned, it is soon agreed that I stay put while Tobias is washed, if there is space, that is. I am grateful that the hospital staff is free from the attitude that says, “rules are rules” and that we can adjust the rules according to the situation. I continue in the evening before I go home to sleep. “Sleep well tonight and let the swelling go down, with the help of providence. Can I go to Budapest? I am meeting with colleagues there in two weeks. It feels like you are saying yes, but I’ll ask again next week. Take care of yourself. And live!!!” That night I dream that one of the nurses says, “We need to be positive about his temperature...” Then I wake up. The next day, Tobias has a temperature which doesn’t look good. Every additional strain is life threatening. Our worry grows, a physical restlessness, a desire to act to take away the fever which no one can explain. It feels like food for my soul, when one of the nurses who takes care of Tobias says, “It feels like there's someone in there.” It strengthens our hope.

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Discussion Questions Maybe the idea that as long as you are alive, you can hear, isn’t accepted by everyone. But most people who have worked with the elderly, or in some other way been in contact with people at the ends of their lives, have experienced that the dying lose one sense after the other. Hearing is the last to leave, unless of course the dying person is hearing impaired. • How is this knowledge used in caring for: seriously ill, seriously injured and terminally ill people? • What does this knowledge mean to you?

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On the Seventh Day I Knew Or Thank You God, Thank You How do you handle all of this? I answer myself, over and over “follow the current, don’t resist”. Every attempt to steer my feelings or “get a grip” takes energy and I need all of my energy. I cry whenever and wherever. It can come all of the sudden, because I can’t and won't steer it. I want to stay strong and in good shape, because nobody knows how long this crisis will last. So I am driven by the thought that I have to keep myself strong and resilient. This is why I jog six kilometers at least every other day. And it’s the same every time, the tears come after 3 kilometers. Tears of sorrow and despair. I soon realize though, that maybe it is mostly fear that causes my tears. I don't want to lose Tobias. It strikes me that my crying is selfish. I don’t judge myself on this, but rather feel that it is healing to recognize that the tears and fear are not synonymous with my maternal love. It is a developmental process that I don’t want to be without, to, deep in my soul, realize the difference between selfish love and unselfish (maternal) love. Seven days after the accident I leave for my jog, ready for the same routine. But instead of the pain that usually comes, I hear my own voice saying, “Thank you God, thank you” and I am happy, because I take this as a sign that Tobias will live. There are no physical signs to attribute this to, but during the afternoon, the whole family feels like we achieve some sort of contact with Tobias. We can’t explain why. And you, as usual, seem like our optimistic Tobias. Do you know how loved you are? Eight days after the accident, I can’t get a melody out of my head while I am cycling to the hospital. I think about it and remember the text: “Baby, it’s all right now.” Comforting words.

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Out of the Anesthesia WHEN?! When will they cut back on all these drugs that keep him asleep? Drugs which turn him into an addict and impede all his vital signs keeping us in the dark as to whether he is lying in an helpless coma or just sleeping? Now it’s Sunday August 11. They are going to stop giving him one of the sleeping medicines today and the thought re-energizes all of us. No one doubts that these drugs are addictive, and the anesthesiologist confirms this. Also, we think that now we will have the possibility of finding out if Tobias soul is still there, if we can communicate with him, if he recognizes us, if he remembers who he is... Since Tobias has had an allergic reaction to one of the sleeping medicines, thiopentalnatrium, which has caused red splotches and rashes all over his upper body, this is the drug they take away first. The next day another drug is reduced. Now the only sleeping medicine he takes is midazolam and fentanyl, as well as medicine to make him sleep and medicine to reduce stress. Tobias is also taking albumin, which if I remember correctly, indirectly keeps his blood pressure up. In addition, there is the ulcer medicine he is given as a preventative measure and through the respirator, acetylcystein. Penicillin too, as a preventative measure. In other words a whole pharmacy of drugs. Though I understand that all this can save his life, I know that no medicine is without side effects. Our family longs for a sign that he can communicate. And yes! Tobias squeezes my hand with his left hand and I notice a touch of movement even in his right hand. He moves his left leg and manages several centimeters in a way that suggests he is uncomfortable. I put his left leg over his right with a pillow between his knees and he seems calmed. Tomorrow, Tobias will finally be free of the air tube that passes through his mouth down into his wind pipe. Unfortunately, he still needs his respirator and we are informed that his swallowing mechanism may be damaged, due to scarring and loss of elasticity. They are going to make an opening in his throat, so that the tube can be directly connected to his windpipe. Tobias actually succeeds in

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breathing without a respirator for all of four hours, but then he begins to feel stressed and starts hyperventilating. Imagine that something that every newborn baby can do without practice can be so difficult after a head injury. Or is this always the case after waking up after being in a deep narcotic induced sleep? No, I’ve never heard that to be the case. I sing all the songs I can remember that I used to sing to Tobias when he was little. I don’t know if he remembers anything, but I do know that the positive memories of the first years of life are stored somewhere and give emotional associations even in the absence of conscious memory. And right now I want to give him whatever happiness and peace I can. To do what I can to help him relax his body and reduce his stress, which will facilitate the healing process. Tobias eyes usually move back and forth since we cut back on the narcotics, but when I sing to him, his eyes stay completely still. The next day we are disappointed to find that they have put Tobias back to sleep –he’s not supposed to wake up too quickly. If I understand correctly, they want him to wake up slowly from the narcotics, so that his body is not caused undue stress from abstinence. The following day, Tobias is a little less out of it. He uses his eyes – he looks, but doesn’t seem to see. Even though he doesn’t have the energy to focus his eyes, it is clear to me that he looks away to the side when I speak to him. Thoughts come to me of when he was a child. The more he wanted to concentrate on something someone was saying, the less likely he was to make eye contact. He listened better when he could concentrate on his own images and associations. This is also the explanation Tobias himself gave to me once when his teacher complained at a parent - teacher conference and asked me to get him to stop looking out the window. I don’t know, but maybe this is what is happening now. Today he succeeds in breathing by himself for half a minute. I sit next to Tobias’ ear and describe skiing: how it feels when to ski downhill, which he loves to do. I describe in detail every single sensory experience, the feeling in his body when his knees work and tensing of the thighs, how it feels to keep his balance and how to turn. Everything that stimulates the senses, the white snow, the shadows on the bumpy slopes. I speak of his little brother Mårten at his side, sometimes in front, sometimes behind. And the sounds, the sound of the skis at every bend. The feeling of the cold wind, the sun and the powdery snow against his face.

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Tobias becomes very calm and still. His eyes move back and forth in rhythm as I describe the turns. Afterwards, I record a tape with similar descriptions, where I also make connections to the physical treatment and encourage Tobias to be where he wants to in his mind, with all of his senses, while at the same time letting the hospital doctors and nurses take care of his body. As I described earlier, this way of working is called hypnosis, but of course an intuitive parent or caregiver can find similar methods, without giving it a name. I’ll get back to that later. Discussion Questions Parental roles vary. Tobias is a grown man who has lived away from his parents for several years, has had a serious relationship with a woman for three years and has generally strove to be independent from his parents. Yet, I sing children’s songs and believe myself to be just as important to him as when he was a baby. • How do you feel about my motherly involvement? • Sometimes loved ones get involved in an exaggerated way, driven by their own anxiety and inability to handle the situation. • At what point do you feel that a parent becomes too involved, in the sense that it interferes with the patient’s need for quiet and rest. • How do you handle a situation like this?

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A Blink Means Yes! Are you there? Can you think? What do you feel? Waiting and not knowing, waiting and not knowing. So far we have only been able to talk to Tobias and hope that our words reach him, our voices and our presence. Now we ask questions and Tobias blinks to say yes! A blink means yes! We are walking on clouds.

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I Take Care of Myself I travel for a week. What kind of a mother would do that? Many people would ask that, so I want to explain why this can be a good thing for all parties. A mother who does this is, in this case, someone who has an interesting profession and wants to continue to learn. A little over six months ago, I accepted an invitation to give an “invited address” at a hypnosis conference in Budapest, which means that I was invited to present my own research findings and clinical experience. I have been preparing for six months, planning how I will lecture on the subject. And I will hold a workshop. This situation also means that I will get a break, that I will be able to concentrate on something completely different, experience another culture and meet colleagues. I am going to need strength to help Tobias, and not just in the coming weeks or months. I already understand that I am going to be needed by him for a long, long time. This is why it is so important to conserve my energy. Right now I know that Tobias will survive and that he is being well taken care of. In addition he has the rest of the family, his girlfriend and other friends at his bedside daily. I appreciate that Tobias has his girlfriend, but I can’t help but wonder what kind of spirits he will be in when he wakes up and begins to take in the world around him again. What will be left of their relationship? But that’s a question not worth mulling over yet. Before I leave I am given a wonderful gift. Tobias can breathe on his own!

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An Arm Up to the Ceiling It is August 22, twenty days after the accident and I am back at the hospital after my trip to the conference. Tobias has been moved from NIC to a hospital room with additional supervision. It is wonderful to see him again. Now he is no longer a body, whose functions are steered only through tubes and machines. Now he is only using an IV, a tube for food which passes through his nose down into his stomach and a catheter for urinating. He has a diaper for bowel movements. This may sound sad if you compare to the body’s normal functions, but for our family these steps forward are a gift from God. After a whole week without Tobias, I am extremely curious about his ability to communicate. I wonder about his level of awareness of his environment and himself. When I come into the room and talk to Tobias, his eyes search in my direction, but the look in his eyes is like that of a drunk, and refuse to focus. It doesn’t worry me too much since I understand the drugs take time to leave his body. It is a good thing that I have never been one to worry unnecessarily. I talk small talk to Tobias, ask questions and describe how happy I am to see him again. After talking this way for a while, Tobias raises his left arm straight up in the air and leaves it there. I look questioningly at Tore, who smiles and says that he and Mårten understood the meaning of this the other day. Tore says the miraculous words “Tobias wants to hug you”. I lean my head on Tobias’ shoulder and feel how his arm wraps around my back. He is hugging me! It isn’t possible for me to leave until he has fallen asleep that evening since the gesture repeats itself every five minutes and must be answered! Such a warm welcome has never before been seen.

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Trading the Drip for the Feeding Tube Yet another tube is taken away. Tobias has been fed through an IV and now his body is faced with the exciting challenge of receiving food only through a tube that passes through his nose down to his stomach. If his stomach can handle the food, he will have yet another working bodily function, and will be one step closer to having his own life. After an eternity of not being used, Tobias’ stomach and intestines are tested. They hang up a plastic bag from the ceiling with a vitamin fortified milk and wheat fluid mixture. It runs slowly down the tube through his nose, down his throat. Now it will be exciting to see if Tobias can keep the food down and – yes, he can! The next day he has even pooped. Our family rejoices. His intestines work! You see, it is just like having a new, delicate and fragile infant, except that you have already had the joy of loving him for 23 years.

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He Can’t Urinate on His Own Now we begin the intensive work of teaching Tobias to urinate, poop, suck, eat and communicate. Now when he needs to go to the bathroom, two people lift him into a wheelchair, drive him to the bathroom and help him on to the toilet. But on getting there, nothing happens. Nothing. I try everything, turning on the faucet, encouraging Tobias to push and relax and asking him to imagine the doors of a dam opening. Nothing happens. Now the question is whether the barrier that is stopping him from urinating is physical or mental. I ask Tobias: “Can you imagine the floodgates?” I close my eyes as if illustrating a closed gate and then open them again. Tobias closes his eyes. “Yes.” “Can you imagine them opening?” No, apparently not. Tobias vocabulary is impaired to the extent that he doesn’t understand the concept of the doors on a dam. So I shift to simple words like water and I use my hands to show how a dam holds back water and how my hands slide apart and release the water. Tobias seems to understand exactly what I mean, except for the last part which he doesn’t get. So clearly, the obstacle seems to be of a psychological nature since I am now sure that he understands the meaning of my words. It must fill some psychological need to keep the water from running out, in other words not to urinate. Some kind of defense. Suddenly it hits me that the last time Tobias urinated by himself, without a catheter, simply by relaxing the muscles in his bladder must have been just when he hit his head and lost consciousness. When people find themselves in a life threatening situation, everything that happens in that moment is registered as directly related to the threat. I see this in my work as psychotherapist again and again, how people unconsciously translate cause and effect relationships between the perceived threat and those sensory perceptions that existed in the moment of fear. Sight, sound, touch and smell register as a sort of physical memory of the dangerous event, and are associated with the life threatening event. This is a primitive survival strategy. If one survives the life threatening event, the trauma itself, one automatically and without having to relive the feeling of fear, forever avoids a similar situation. The logic in this survival strategy is that everything that happened in this life threatening situation can have been part of the danger and thus must be avoided! This reasoning means that Tobias could have a chain of associations such as:

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“Urinating means losing control and maybe death and must therefore be avoided.” So I begin to talk to his “unconscious”. I use this expression as a metaphor because this lets the ”conscious” relax and not worry about instructions – in other words, I don’t try to communicate with the conscious part of his brain and I don’t try to address his will power. I describe the accident, stress that he survived, and that he can urinate again. And if he now urinates, he will live and survive... Then it comes! Communication is a chapter in and of itself. Let us say that I come into the room and Tobias seems enough awake so that we can socialize. Do I sit on the edge of the bed or do I ask for help from the staff so that I can take Tobias out into the lounge? Or do we take the wheelchair and go out for a walk? How easy it would be to decide: fresh air is good, let’s go out, or exercise is good, so let’s move into the wheelchair, etc? Examples of different choices are endless, the choice between the alternative menus for tomorrow’s lunch, getting water, cool-aid or juice when Tobias is thirsty, putting on an extra sweater on the balcony or not because the wind seems cool? It feels important that we let Tobias use his own judgment, even if his extensive injury means that he can’t actually use it yet. We, those closest to him, still believe that he does have judgment, that he can choose if we find a way to communicate so that he understands he has a choice. Maybe it’s an illusion, but as an illusion, it fills the function of keeping our hope up, giving us strength everyday to try to reach Tobias’ most intimate feelings, will and judgment. It is these kinds of attributes which give him his personality and dignity, in contrast to just existing as a package. Sometimes illusions turn into reality, simply because somebody stubbornly held on to them, despite “better judgement”. So, back to the examples: Tobias will choose between a couple of alternatives. I have realized that he only has the energy to choose between two alternatives and that he can only remember one alternative at a time. This is why comparisons are hard to handle mentally. But if we attach the alternatives to our fingers, it works. This is how we do it. I say, “Tobias, do you want to stay in bed or get up?” Then I repeat the first alternative while holding up my right thumb and show that this thumb stands for staying in bed. Then I say, “Or do you want to get up out of bed?” and I hold up my left thumb. Then I repeat the alternatives slowly while I hold up each respective thumb. Then Tobias points to the thumb he prefers. Then we continue to use the same 50

method with the available alternatives after Tobias is out of bed. Total contact is necessary if this is going to work. Tobias can easily seem to participate in this type of dialogue without actually being present mentally. Then he gets confused when he has to choose because he didn’t understand what the thumbs meant, or he didn't understand the alternatives or he simply didn’t have the energy to listen. We can tell when this happens because Tobias gets a look which is a little introverted, like he is looking without seeing. Being able to tell the difference is a specific kind of competence. It is called “tacit knowledge” and indicates a kind of knowing that takes place even though it is difficult to describe or measure objectively. Discussion Questions Several years after the accident, Tobias still does this. The look in his eyes becomes introverted and he becomes confused in situations where we talk too fast for him to be able to follow what we are saying. When words are not enough, eye contact becomes very important. Often it is frustrating to try to communicate with people who have an empty look in their eyes or who seem to avoid eye contact. In this example, Tobias seems to protect himself by distancing himself, seemingly to avoid accepting his inability to understand. At the same time it isn’t an intentional absence, and you certainly can’t encourage him to concentrate. Or can you? • What experience do you have with patients who go back and forth between focusing their attention and seemingly looking absent and confused? • How do you feel when this change takes place? • Do you feel motivated to get the patient to concentrate more? Can you?

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“This Little Man Does Not Want to Eat” The days pass and now Tobias can sit up in a wheelchair for a little while every day. He has pulled his feeding tube out of his nose twice, so now he has to eat regular food, whether he likes it or not. It pains me when they have to force the tube down time after time. When I am there it is bearable because I can help him remain calm and cooperative when they put it in, but I can’t always be there. So now we have to push his development ahead a step. I go to feed Tobias every day. We have to get a couple of teaspoons of food and a couple of cups of liquid into him, which is a test of wills that takes an hour. He can hardly open his mouth, much less chew or work with his tongue. I do just what you do with infants – open my mouth wide, which makes my son, who now seems very little, open his mouth a couple more quarters of an inch, just enough so I can get the spoon in. Then it’s all about helping him focus and inspiring him to use his tongue to move the food and swallow. His tongue doesn’t really cooperate, but the process seems to works. I refuse to make him go back to eating through a tube! After his meals, Tobias is exhausted and his head falls down to the side. The wheelchair has a neck support which Tobias could use to help hold his head up. Everyone tries to get him to use the neck support. But he won’t! Rather than accept help, he lets his head hang down, and then tries to look up and with great effort manages to lift his head up. I think and communicate with and without words: You are always so silly in your stubbornness, and it is just that, which makes you endearing. Just like when you were a newborn, only a few days old, you lift your neck of your own strength. You want to do it by yourself. One day I am delayed by my work and arrive late. Tobias has already received his lunch tray. A nurse I haven't met is sitting and trying to feed him. Tobias can’t open his mouth at all. Mårten and Tobias’ girlfriend is sitting out in the lounge. I walk into the room and ask the nurse if she wants me to take over. She sighs loudly and says with irritation, “It’s not worth it, you're the third to try! This little man does not want to eat.” It doesn’t occur to her that I am Tobias mother. I have fed him before and I am therefore equipped for the job and have more patience and motivation than just about anyone else. So, yes, he does want to eat; it’s just about finding out how to motivate him. I get the feeling it’s a question of pride. Of course he doesn’t want his girlfriend to feed him, it is below him. They have never had that kind of relationship and it 52

probably feels foreign and strange to find himself in a helpless role with her. The same is true of his brother. A little brother is a little brother and is there to look down upon. He can’t be the stronger of the two, that’s just not right. Probably Tobias doesn’t understand at all what is going on, but with me, he can go back in time, for being fed by me is something he has experienced before and he can accept it without being disturbed by a conflicting inner perception of who he is. Discussion Questions Do you identify with the irritation the nurse feels when she sighs and says, “This little man does not want to eat!” • Could that have been you, or do you choose your words differently when you express your irritation? • What kind of behavior in a patient or colleague irritates you? It is common for staff members to complain about an irritating patient to each other, which increases the risk that people will begin to distance themselves from the patient and feel less empathetic. There is also a risk that this situation will lead people to forget to look for new resources in the irritating patient. • How can staff support each other in this kind of irritating work situation, without designating certain patients as “problem children”?

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“I’ll Put the Newspaper Here” Tobias can now chew and use his tongue. He can both nod and shake his head. He burps and hiccups most of the time and grabs nurse Catharina’s shoulder by tucking his arm through hers, without embarrassment. He stands supported by others. Now that Tobias can sit up every day, he can join us out on the terrace. It is August 28, and still a record hot summer. On the hospital terrace, we have a nice community of family and friends. I am back at work three days a week and it is good for me to have something else than Tobias to concentrate on. Now, once our strong desire to see our son alive has been fulfilled, life begins again. Life which is not yet life, but which must still be lived. I am beginning to get an idea of how Tobias is doing on the inside. I am guessing of course, but this is always true when we think we can understand people who can’'t express themselves. My empathy tells me the following: Tobias doesn’t understand his situation. Two things happen as soon as he comes across an obstacle: 1) He tires quickly, has difficulty concentrating and becomes distant. This has an explanation. An injured brain which has recently been sedated is fatigued. 2) He knows himself as he was, not as he is. Tobias probably becomes totally confused in situations he doesn’t understand. Being fed, for example, means he can’t feed himself, being carried to the toilet means he can’t go there himself, being washed means he can’t wash himself!!! In these situations, I see that Tobias become totally distant. This seems to be a way of denying that which he can’t stand to come to terms with. While this makes the process of development difficult, I can understand that the truth is unbearable and incomprehensible. I’ll give you an example: Tobias has a friend who always has an evening newspaper with her when she drops by. When she leaves she asks if she should leave it with him. He nods. In private, I inform her that there is no point in leaving him the newspaper. She answers with conviction, “Yes there is, Tobias can read!” Of course it isn’t all easy to understand. If you ask Tobias if he can read, he answers that of course he can! He has been able to read since he was four years old. That Tobias right now doesn’t have the energy to read the paper or understand the subtitles on TV, is something he won’t think about. Instead he finds himself in a protective fog and becomes distant. I do a test. We watch “text TV” in the lounge. At the top of the screen it says Wednesday. I point to it and ask Tobias if he can see what it says. 54

“Yes”, he says. And since he can’t talk, I ask, “Does it say Monday?” “No.” “Does it say Tuesday?” Tobias nods. And not only that. Somehow Tobias is able to convince an energetic and helpful assistant nurse to borrow a computer from the speech therapist so he can communicate in writing. For a whole week she thinks Tobias is using it. And I must admit that we as a family are hoping for a miracle, so we don’t take away the computer either. Tobias recognizes patterns and in that way entire words, but he couldn’t tell you how to spell a new word. He can’t tell the difference between the letters and numbers in the elevator. If I ask him to press “G” for ground floor, or the “2” for the second floor, he responds by guessing. Discussion Questions Every patient has his or her own suffering and his or her own defense mechanisms and survival strategies. Just staying at a hospital for a long time is insulting to one’s pride and sense of self worth: other people decide when it is time to wake up, when it is time to eat, who stays in the same room, which clothes you wear, which sheets to put on “your bed,” which isn’t really your own bed anyway, etc. In addition, it would be confusing for anyone to have his or her own daily routines traded for someone else’s routines (the hospital’s), without taking into account personal needs or habits. Do you agree with the above interpretation of the situation? • How much motivation do you have to try to understand patients as individuals who might have different values from your own? • Do you have any examples of how the staff’s methods and patients’ integrity and personal boundaries come into conflict? • How can we better satisfy patients’ need for integrity and private territory, without creating additional costs? (Here, I assume that state, community and/or county, as well as private healthcare will continue to pressure staff with demands to cut costs and respond to difficult economic constraints.)

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A Beer! Tobias can now chew and use his tongue. He can both nod and shake his head. He burps and hiccups most of the time and grabs nurse Catharina’s shoulder by tucking his arm through hers, without embarrassment. He stands supported by others. If we remember that in his mind he still sees himself as he was before the accident, we can find inspiration for short cuts. This is exemplified by a clever nurse who comes up with the idea of giving Tobias a bottle of beer without a glass to accompany his meal. I move his left hand, the one he can use, with the beer bottle in it to his mouth, and look he drinks! I go with Tobias to the toilet and for the first time he can poop there. Still, it takes all of 20 minutes. I tell him calmly that it is both possible and not dangerous to push. After a while he lets himself be convinced and succeeds. I take Sunday off from my hospital visits and stay home to catch up on housework. When I arrive on Monday, Tobias is sitting on the toilet. It’s the second unsuccessful try today. With a nod he gives me permission to help him, which I do by explaining the intestines and ring muscle clearly as a picture for him to visualize. We succeed again! I am happy. Tobias looks happy too. Back in bed he stretches up his left arm over and over and I get loads of hugs. Imagination, the ability to empathize, patience. Who has time for that today, when hospital resources are in short supply? It’s not just about time and money, though. It’s about the staff’s own anxiety, insecurity and lack of knowledge and training. If the staff received continuous psychological counseling on how to approach patients in extremely difficult situations, then many of the small nuances in their communication could be turned around. And maybe instead of making things more difficult, things could improve. They know this in intensive care. There is nowhere to run there. Those who retreat in anxiety when faced with the really hard questions of life and death presumably can’t work in intensive care for a very long time. Anxiety can express itself in many ways. Existential anxiety, which seems to be second nature to us humans and which manifests itself in all of us when we are confronted with life and death, is an every day event in hospitals. People who work in hospitals need continuous training and enough time to have meetings where, without pointing figures, they are allowed to talk about their own reactions, fears, hopes, deep faith or lack of faith concerning suffering and death. 56

I think that one of the things in health care that shows how these difficult questions are avoided is the fake cheerfulness that characterizes some staff groups. If these professionals are allowed to freely express their uncomfortable feelings in a “safe” environment, they will feel a sense of relief – and realize that it’s ok to discuss them. They will encounter understanding and realize that they are not as alone in their thoughts, as they had feared. They will also find that no one sees them as not fitting in to a work group as a result of expressing these feelings. When the workplace offers space for handling difficult emotions, caregivers are spared much anxiety. They can take care of their own positive and negative reactions in a safe way. This openness is contagious; it improves the work climate and will return to reward the caregivers. When the work group develops a sense of security, where each staff member is allowed to be his or herself, a natural sense of happiness and spontaneous lust for life appears. But where there is no room for expressing feelings about difficult issues, a forced and false cheerfulness seems to be the norm. This false cheerfulness can be found everywhere in care giving professions. However, as I wrote earlier, it was totally absent in intensive care. Nowhere could you find chipper monologues that deny pain and block out the ability to listen. Now I admit, this is an exaggerated generalization and judgmental. However, I hope that my generalizations will serve to inspire more nuanced discussions in work and study groups. Discussion Questions The importance of being able to express and discuss our reactions, hopes, fears, our deepest faith or lack of faith surrounding suffering is emphasized in this section. For example, when confiding in colleagues that you are uncomfortable about something, it can be unnerving or even insulting to be met with good advice and comforting words on how to fix the situation, when advice was not asked for. • What experience do you have with sharing your feelings in a study or work group? Was the experience good or bad? How would you want people to react if/when you talk about your feelings concerning suffering, illness and death? • How would you not want people to react in this kind of conversation?

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• What does it mean to you in a work group to be yourself? • Where should the line be drawn between being yourself while showing concern for others and being yourself without showing concern for others? • How can you be yourself and at the same time show respect and concern for others? Elisabeth Kübler-Ross is a psychiatrist who really succeeded in expressing her humility towards the difficult questions of life and death. I highly recommend her books3 .

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“How do you do it?” Fever and increased intracranial pressure. I think Tobias has an infection, because I saw him dig a big green booger out of his nose. Yes, just as unashamedly as I am writing about it. He doesn’t have the same sense of what is socially accepted as he did before. His urinary problems are becoming a real problem. He receives help to go to the toilet or to use a plastic bottle and after a couple of very intensive attempts, he gives up. Then he relaxes and the urine comes by itself. Tobias seems to suffer from this. He also suffers because the right side of his body is paralyzed, which you can see even more clearly when he sits up because he sinks down like a bag of hay. When I try to see the world from Tobias’ perspective, I get the feeling that his difficulties performing bowel movements and urinating along with his speech difficulties are what bothers him the most. No, maybe bothers is the wrong word since it’s clear that he can’t think clearly; the confusion often comes as a form of rescue and his reaction to this scary and incomprehensible state is that he becomes distant and empty. Distance, confusion, emptiness Tobias sitting on the hospital balcony seem to appear when he faces challenges. It must feel impossible for Tobias to endure all of these incomprehensible limitations. With emptiness as his shield, he will be able to keep himself blissfully ignorant of his handicaps for a long time, maybe for too long a time, if he doesn’t get both gentle and capable help. My most important role is to communicate nonverbally and just let him know that I am here and won’t turn away. By doing this, I can help Tobias persevere. And open himself up to the world again. The same question repeats itself with every activity, both with those he used to be able to do instinctively and those that his own childhood curiosity inspired him to learn, a long time ago. Simply, the question is “How do you do it? As soon as Tobias is able to master a simple activity, like blinking for yes, he continues on to learn something else. And he can now use the help of more and more individuals. I am already somewhat less 59

important than I was only a week ago. But Tore doesn’t agree with this reasoning, he exaggerates my ability to the sky and wants me to do more. It doesn’t just feel encouraging, I also see it as a way for him to deal with his own fear of the future and his own feelings of inadequacy towards Tobias. This unexpected situation has thrown us back into separate roles, in the same way as when Tobias was an infant: I could communicate on a level without words, while Tore stood by as an observer and felt superfluous to our close communication. In reality, of course, Tore was indispensable. He took responsibility for providing for our material needs and made it possible for me to concentrate all of my energy and maternal intuition on the children. Because of him, I was able to enjoy the happiness that comes with living with a little person and seeing him develop from a nutrition and snuggle consumer to a curious personality who challenged me. I know my pleasure mirrored itself in my body language, allowing my children to see their own images reflected in me so that, by watching my reactions to them they could experience their own importance to the bottoms of their souls. And now, just as back then, Tore and I react differently and feel different kinds of responsibility. Tore becomes more motivated to work and satisfy our material needs. He asks the long term questions, “How are we going to support Tobias?” “Are we going to re-do our house so that it is adapted to a handicapped person?” “Are we going to need a specially constructed car?” My own reaction is to become especially sensitive to Tobias’ wordless communication, much as I was during that time we worked together through a long and difficult birth 23 years ago.

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Love We sit alone for a while, Tobias and I. I can see God in your eyes. You have such a clear, clean and wholesome look in your eyes, that I feel myself overflowing with love for you. Tobias pats us a lot, sometimes I think, without getting anything out of it himself. I get the feeling he wants to give us something he can see that we appreciate, almost as if he is consoling us. It is as if the response he is able to create awakens such happiness in us that he repeats it just for the sake of the effect. Tobias doesn’t just affect us, people around us show much more involvement than I had expected. Why is everyone so interested in you, Tobias? People who have never met you still show that they care for you. My 25 students from all over Sweden, the editorial staff I am part of, colleagues from all over the world who participated in the Budapest conference, neighbors from Brännö Island... Discussion questions • Parents, siblings and other family members think they understand the patients’ needs better than anyone else. • When is this an asset and when does it become a liability? • Do you ever feel that family members react more as a result of their own needs than as in response to the patient’s needs? • How do you know when that is the case?

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Hypnosis Tobias has a problem with intracranial pressure. That means that the brain’s natural drainage system is blocked, probably by a blood clot. Based on my education and professional experience, I am convinced that you can activate healing mechanisms with the help of hypnosis, in other words by using ideas about the healing process and the desired result. In literature, this is usually called suggestion and visualization. However, when this takes place in a state of relaxed and focused attention, which is not limited by logical – critical thought, in psychology, we call the state hypnosis. In other words, hypnosis is no stranger than so, but in order to do it you need a license as well as competence, intuition and a fine tuned ability to listen and observe. It may sound exciting that I can help my son in this way, but I want to stress that it is not excitement, curiosity, or anxiety that drives me. Rather, I am guided by the feeling that it would be unforgivable to not do it. The only private space to which we can escape in the hospital is the bathroom for the handicapped. Tobias lies on the special bed in the shower and tries to follow my instructions, which I give in the hope that I can guide him into a relaxed, hypnotic state. After a while, he shows all the signs of being in an altered state of consciousness and strangely, his eyes are looking to the right, something which up until now has been impossible for him. Until now, Tobias hasn’t been able to move his eyes to the right, only to the left or straight ahead. This is what one would expect in Tobias’ situation since he has a visual impairment which neurologists call “neglect”. This means that the patient avoids looking to the side which is paralyzed, unconsciously denying that it even exists. This is what a neurologist explains to me, but it remains unclear how much of the reduction in sight is a result of an organic brain injury and how much is a symptom of the psychological denial of the paralyzed half of the body. Now however, Tobias “looks” constantly to the right, and I give him suggestions on cleansing activities in his brain. His right leg shakes. Then, he bends his knee slightly and his right ankle. He also moves his right hand by bending his wrist. After 20 minutes, Tobias wakes up spontaneously and seems calm and relaxed. Later in the day, after Tobias is back from his physical therapy, I try again. But this time, he doesn’t go into an altered state of consciousness; instead he looks like he is actively trying to stay awake. I try to guess what could be wrong and wonder aloud if he needs to 62

urinate. But at my guesses, he only agrees that the room we are in feels wrong. It is a narrow room without windows, which we have never been in before, so I can only assume that this is what he means. The next day, they let us borrow one of the ward’s single rooms, which is unoccupied for an hour. My psychological train of thought combined with Tobias’ pattern of refusing to let go of his urine and refusing to push, leads me to think that he might still be afraid to loose control. Relaxing one’s bladder is a voluntary form of losing control. He has recently been in a situation where he has lost all form of control and was knocked unconscious, as if by the chop of an ax. The body, or actually the brain, always remembers a life threatening situation so it can avoid everything associated with it, thereby avoiding the risk of death. This is done with or without awareness, so that the defense works despite loss of memory. If situations that reminds the person of the trauma present themselves, they are often experienced as a desperate and incomprehensible need to escape. The problem is that the person can experience this phobic feeling without being clear on what exactly should be avoided. In the long term, the need to “get away” can turn into panic. I help Tobias on to a bed and sit down beside him. He hasn’t urinated all day, so my main goal is to help him dare to loose control. If my hypothesis is right, he is terrified of urinating. Of course, he isn’t conscious of the reason behind his fear since part of his brain injury involves memory loss. So this apparent life threatening psychological trauma lurks in the darkness of his unconscious. I suggest a relaxation technique to Tobias, which involves counting backwards. He cooperates, but remains stressed and somewhat worried. I ask if he is afraid of experiencing something upsetting. Tobias nods. I promise not to press him and make sure that he will be ok, no matter what happens. Tobias gives a thumbs up – his latest sign for OK, and he looks trusting. I continue the relaxation technique instructions and count backwards. Then I tell Tobias about a detective who is inside his head searching and finding areas of stress. I ask the detective to show Tobias what he finds. Tobias moves uncomfortably and I ask if his bladder is full. Yes, he agrees. I get the bottle for urinating in, Tobias tries, but nothing happens. He tires, but after a few minutes gestures that he doesn’t need to urinate, which can’t be true. I say that something is stopping Tobias from peeing so I try something called a theater visualization method. That’s the name of the method, but of course one can just as easily imagine a TV or movie

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screen. The technique works by helping the unconscious project pictures on an imaginary scene or screen, so they become visible to the inner eye. I have Tobias imagine a movie theater. He sits in the audience and squeezes my hand when he is there. “Yes”, he is there. Tobias gets to decide if he is alone in the audience or if there are more people. He prefers to be alone. I ask him to imagine the curtain and its color. Suddenly he looks up, lifts his head, searches with his eyes, sees me, looks calm and lies his head down and closes his eyes again. I continue, “When the curtain is drawn back, you will see on the screen what you need to know, what you need to see, so that you will be able to continue to heal as well as possible. The curtain opens now and you see clearly...” Tobias opens his eyes looks straight into the air, looks extremely surprised, looks at me and tries to say something, that sounds like “i e.” He repeats “ii ee.” “Did you see something?” “Yes.” “Yourself?” “Yes.” “I e, does that mean: is dead?” “Yes!” “So that’s what you needed to know, you thought that you would die, maybe you even were dead for a minute.” Tobias looks very interested. “Then maybe you want to know what happened then?”, I ask and get a yes. I tell him how Mårten came afterwards on his bike, and found Tobias lying on the sidewalk appearing dead, not breathing, not seeing, with blood running out the crushed side of his head, how Mårten lay his hand over the wound to stop the flow of blood and then whispered in his ear, “You have to breathe Tobias, you have to breathe!” How Mårten breathed in his ear in the rhythm he thought was right and how Tobias then began to breathe. As I tell this, Tobias starts to cry and hugs me. He cries for a long time and hugs me tightly the whole time. Relieved in all ways, so now he pees too. A whole liter. Really. 64

Discussion questions Without having to know much about hypnosis or having to be a psychotherapist, many healthcare workers can become excellent communicators. • What do you do to understand what a patient can’t express in words? • It can be difficult to answer how to do something that takes place intuitively, but maybe you can put into words which senses you use, what kind of body language you use, if you need to be close to the patient, if you use eye contact, etc. • How can you become better at listening and understanding nonverbal communication?

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Hospital staff – the Fantastic and the Fearful In health care, we’re constantly seeing more and more cutbacks, which, of course, stresses the staff and increases their workloads. But one thing I am certain of, if staff had one hour a week where they, together with a supervisor, preferably a psychologist, were able to talk about difficult feelings, difficult patients, insecurity and fear, surely the result would be more relaxed and more intuitive listening communication between patients and caregivers. I would like to see all categories of hospital staff in such groups. Doctors, specialists and hospital janitors all meet the same patients, see the same questioning eyes, gestures and attempts for contact, empty eyes or eyes that look away. They see worried bodies, they hear worried words. Some staff deal with this anxiety and worry in a straight forward manner, some with warmth. Some try to comfort, more or less convinced as to what they are saying. The most difficult attitude for an anxious patient to deal with is probably the one characterized by pretended cheerfulness. Suddenly from Tobias’ door, in his four bed room I hear the following words, just as I am sitting quietly thinking about how I can reach Tobias... “Good morning, good morning Tobias! (laughter) Today you are energetic (and without looking for any response in Tobias’ eyes or body language). Yup, here’s breakfast for you!” What I as a sensitive mother hear in this communication is: “Let’s be happy, I refuse to see anyone who is not happy. I really don’t have time to check how you are and I really don't want to know if you or anyone else is depressed. I can’t/don’t have time for that, but, of course, I can’t say this straight out.” (And maybe she hasn’t even thought about how it could possibly be wrong to be cheerful and friendly). What I also hear in this “cheeriness”, if I use my body to understand why I distance myself from this is “Instead of having to listen to my patients’ anxiety, I adapt an irreproachable cheeriness, raise my voice to an energetic and glad pitch and hope that in this way I can create a positive atmosphere.” Even worse, I notice that this cheerful attitude screams loudly enough to drown out every silent prayer of contact. As a psychologist, I also hear an inability to put oneself in an empathetic position towards the patient. I know from my own, as well as colleagues’ experience, that in all contact with patients, a personal attitude does wonders for the patient's healing process, without 66

having to take more time. But it does take more concentration, compassion, empathy and courage. All of this was present at NIC. I have already mentioned that I wondered why the people working there seemed to have a psychological way about them and a very professional and humane competency. I really believe that those who work there, and who have the stamina to continue working there, have been inspired to develop a humility towards life and death. They can’t possibly defend themselves against all of the family members and loved ones who fill their halls with feelings of hope and desperation. They cannot in the long run, deny sorrow and the reality of their own, as well as family members’ and loved ones’ inadequacies. They have to develop an open mind towards all of these strong feelings -- feelings, which despite everything can create strength and life for whatever happens next. Discussion Questions Sooner or later, in most healthcare professions, you come across an atmosphere or feeling that you instinctively want to avoid. This may be the result of your own unprocessed experiences or just simply the natural discomfort we all feel when we stand powerless before those who are suffering and disappointed, especially if these feelings are expressed as hopelessness or aggressiveness. It is difficult to endure our inability to help others whom we watch going through a tragedy. If our ambition is to comfort or protect, we are forced to see our own inadequacies and may wonder what we are doing wrong. The training we received in dealing with difficult emotions, whether they be others’ emotions or our own, might not have taught us how just to be there in difficult times. Just to be there, without doing anything at all. • What feelings do you have difficulty dealing with or listening to from other people, without trying to help change? • What kinds of crises have you yourself gone through and what help did you feel you received? • What kind of help would you have liked to receive? If you are a group: do you each have similar needs or do you differ in the how you would like to be helped in times of trouble?

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PART II Rehabilitation

“You'll Have to Wait with this Hypnosis Thing” Tomorrow, Thursday, September 19th, Tobias is being moved to the rehabilitation clinic. Hurray! The senior doctor has come and our family has longed for this moment. Now the focus will be turned from health care for survival to goal focused training with a professional team who will make a personalized rehabilitation program for Tobias. Everyone on the staff in our ward has talked about how good it will be there. We are happy and optimistic. After work on Thursday, I bike over to the rehabilitation ward at another hospital to visit Tobias in his new environment. I hope to meet some of the staff members even though it is late in the afternoon. They don’t know Tobias and we need to exchange information as soon as possible. I assume they are as anxious as I am to begin cooperating, to personalize his rehabilitation plan according to his injury, needs and personality. It seems deserted inside, so I begin to look around for Tobias. Finally, I find a nurse in the reception who tells me Tobias has his own room all the way down the hall to the right. I go there, open the door and find him lying on the floor next to the bed with his head against the leg of a chair. He doesn’t make a sound, just stares out into space. He has tried to get out of bed himself, stuck in his old perception that he can still stand and walk. Now he is confused about the change, about what is going on, about where he is and why. I don’t have the strength to lift Tobias by myself, so I call the hospital staff to help. They are very upset. It turns out they don’t know anything about Tobias’ needs and current state at all. They apologize and complain about the staff on the ward that sent him. I am informed that Tobias wet his bed today and that they weren’t prepared for that. I am guessing he did this because he wasn’t able to call for help. His memory is so injured that he can’t remember that there is such a thing as a call button even if he was informed about it. I help Tobias into the bathroom, which is new and strange to him, and try to encourage him to urinate. He tries, but can’t. Tobias is nervous and tense; maybe the change of environment frightens him. We must be patient. It’s a good thing I have a unique knowledge of who Tobias is and how to reach him. I am not helpless. The staff here have their own knowledge and skills and I still look forward to a fruitful cooperation. 71

The next day, I find the team who will be working with Tobias and let them know how eager our family is to help and about the cooperation we had with the staff at the hospital. I also tell them that I can communicate with Tobias when he is partially unconscious, using methods which come from my knowledge of hypnosis. I explain that in this way, I have been able to complement the skills of the hospital staff. It is still September 20 and we have not yet seen any sign of welcome; no one has spontaneously introduced themselves and every contact with the staff has been at my initiative. This is a huge contrast to the caring atmosphere of the other hospital. There, despite my having some criticism as to the way the patient is treated on a detailed level, there was always some manager or head nurse who welcomed us and made sure that we “made ourselves at home” as much as was possible. On the other hand, I think, it’s only been two days since Tobias was admitted to rehabilitation. On that very night, I receive my welcome. The telephone rings at home. It is the staff team’s twenty two year old nurse with a message from the senior doctor. I haven’t yet met the doctor, so I am happy that they take the time to call at this hour, since we missed each other in the ward. But the nurse’s reason for calling isn’t to welcome us, but instead to inform us that “the senior doctor wants you to know that you’ll have to wait with that hypnosis thing.” I ask why and he doesn’t know. I ask if the doctor is knowledgeable about the subject and the nurse answers that he probably isn’t. I feel more down and depressed than I have since the day of the accident, August 2. To feel despair and worry over the state of your son’s health is a feeling which in all of its pain still has space for an infinity of love, but to be denied the use of abilities and skills which have clearly helped Tobias move forward is terrible. And for this to be done by an anonymous authority with power over Tobias’ life feels demoralizing. The whole of the weekend is marked by anxiety. How am I to react to this? Discussion Questions According to Swedish law, the “senior doctor” has the overall legal responsibility for the care of the individual patient. Seen from this perspective, it is understandable he doesn’t want to concern himself with a treatment like hypnosis since he lacks expertise in that area. At

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the same time, one wonders if he could have handled the situation differently. It is also worth noting that I was designated as Tobias’ legal guardian and therefore am responsible for expressing and defending Tobias’ point of view, in so much as he is unable to defend it himself. On the other hand, in Sweden, there exists something called “the patient’s right” which means that the patient always has the right to agree or disagree on the suggested treatment as well as receive expert advice from somewhere other than from the senior doctor. • How do you see my expectations concerning cooperation? Are they unreasonably demanding? Are they positive or are they something else? • How would you react if you found yourself in the role of the young head nurse required to call a family member with information of the kind described above. • Whose situation is easier for you to see yourself in or empathize with: Tobias, mine, the “senior doctor’s” or the staff team’s? • All parties are acting in what they believe to be Tobias’ best interest. And yet we end up with a conflict of interests. • How is this possible?

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“Everything We Do Focuses on the Patient” The welcome I was expecting doesn’t remain as absent as I thought it would. There is in fact a formal welcome. It takes place in such a way that all family members and patients join together at one time in a big room. We drink coffee and listen to a neurologist and a psychologist present the special way of working they have developed here. The presentation isn’t particularly concrete, but is instead given to us as a series of visions. Phrases such as “everything we do focuses on the patient” and “you family members are very important” come up again and again. We are also informed about the different kinds of behavioral changes that occur after brain injuries. Depression is mentioned as a commonly occurring problem that results from head and brain injuries, “but we have medicine for that”, says the psychologist and smiles at the doctor, who in turn praises the psychologist’s skills in interpreting patients’ brain injuries and supporting patients and staff in their treatment plans. Words, words, words, I think cynically, since I hear nothing in which I can believe without seeing it put into practice. That is where the individual meeting with the quality of care is tested and proven. I still haven’t seen any such “focus on the patient” but then again you can focus on the patient in more than one way. To be fair, I must say that many patients seem satisfied. Above all, I see how the elderly people around us with respect for authority are thankful to let themselves be patted on the shoulder by friendly experts. Presumably, these patients and family members have always had great respect for people with degrees, whether they be doctors, psychologists, teachers or priests. It is my understanding that the people who show the most faith in authorities, don’t even acknowledge or believe in the possibility of becoming an expert about their own illnesses or the illnesses of family members. But what about the rest of us? Those of us who feel the need to consult our own judgment before making a decision that affects our lives or the lives of our loved ones, if they are unable to speak for themselves? How do we manage in a health care culture that turns us into objects and takes away our human dignity? Those of us who want to take responsibility for our own lives become difficult because we question: we question routines, we question existing professional roles, we question power and we question decisions. And all the while, we wonder if there is any point to this, if indeed, when we reach the end of the tunnel, there will be an 74

opening? Maybe we just succeed in provoking insecurity and defensiveness. Twelve days after Tobias’ transfer to the rehabilitation ward, I am called into a meeting with the neuropsychologist. She has investigated Tobias’ cognitive capacity and I am interested to hear the results. 14 years ago, I worked with similar diagnostic tests in pediatric healthcare. This means I can understand the results even though the current tests she used are of a more modern version than the ones I used to employ. The principles are the same. Without a doubt, this colleague of mine is a very competent diagnostician. Soon she approaches the subject of hypnosis. I have avoided the subject myself since the rejection I received on the phone. Hypnosis is not suitable, she explains and at my request for a more specific explanation she says it is risky to give Tobias’ insight into his accident too soon because he probably lacks the mental capacity to handle, process and express his feelings. She explains that Tobias, in his present state needs help to “put the lid on” and instead focus on stimulating more positive resources. Without taking an interest in what I hope to achieve with hypnosis, the neuropsychologist continues to explain that it might be possible for him to process the crisis at the earliest 6 months to a year from now, in which case they have a psychotherapist in town that they hire when and if needed… Not for a second does she bring up or consider the question of my own competence and knowledge of hypnosis and brain injury, how I have used hypnosis with Tobias, how I see Tobias’ possibility of gaining insight into his situation, which reactions I myself have seen in Tobias, and how Tobias currently expresses his feelings. Because, of course, she knows all this: she’s met him. Once. I was cynical. Now I am angry.

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Family Members Should Know their Place Visiting hours are in effect here at rehab. We are allowed in after 4pm when the exercise program is finished for the day. And yes, of course, we are also allowed in during the day when the rehabilitation program is in session, but first we have to request permission from the person in charge of the program that day. And as a rule one day in advance. You can’t just pop in! One day Tore is with Tobias at the physical therapist’s. Tobias is practicing standing up and walking one step at a time with the help of a walker. After a little while, he looks tired and as if he is about to give up. The physiotherapist asks if he wants to finish the session for the day. The answer, of course, is “yes.” Those of us who know Tobias well know he tends to choose the easy way out and that this is his natural reaction to all forms of exercise. As long as he isn’t motivated to do something through his own curiosity, not much gets done. The physiotherapist, on the other hand, would probably expect a 23 year old man to use every ounce of energy and then some. She is most likely used to having to encourage young men to rest rather than to continue a little longer, especially when they have a serious brain injury. So, she is ready to pack up for the day. Tore suggests that Tobias take a short rest and after a couple of minutes he encourages him to continue. No problem whatsoever. Tore then explains to the physiotherapist how we were able to get Tobias to bend his right knee. She doesn’t appreciate his acting like an equal and nicely explains that she is the physiotherapist and he is a family member and that the family member’s role is to take the patient out in his wheelchair – “You can take him out for pizza or something.” The more I listen to the staff, the clearer it becomes that they all believe that their roles are so important that they should automatically have a monopoly on the rehabilitation of the patient. In all practicality, what this means is that the patients’ exercise program, development and future lie in their hands. They are all familiar with the words in the vision “you family members are very important”. But hard as I might try, I cannot see that this vision is actually implemented anywhere at all. Maybe what they really mean is that we are important in the sense that we may inform the staff of our plans so they can let us know what we can and cannot do. They all seem to assume, probably with good intentions, that we are in crisis and lack realistic judgment when it comes to having a loved one in a difficult situation.

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And indeed, sometimes this may be the case. Tobias has what they call a “contact book” next to his bed. Probably the occupational therapist’s idea. It’s a good idea, since it is a way for everyone involved with Tobias to write what he does, what he is working on, progress he is making, etc. The notes can be used to get his memory to improve. Tobias can listen to what he does and what has happened to him so that he hopefully can begin to get some form of continuity in his life. Otherwise, his failing memory capacity limits his existence to a string of “nows” without context. I am disturbed by the fact that staff’s attitude towards family members doesn’t live up to their vision’s pretty words. Instead, I see one example after another of them trying to put us in our place. For example, when I write down our plans for the weekend in the contact book, I write that on Saturday night Tobias will sleep at his girlfriend’s house and that the next day we will visit grandma and celebrate her birthday and that for the rest of the weekend the whole family will be gathered at our home on Brännö Island. My thought in writing all of this down is that the staff will be able to talk to Tobias on Monday about the weekend and by doing so help him exercise his memory. Because I assume that’s what the book is intended for? Before the weekend comes however, I receive a call and am asked to come to the consulting room. There, I meet the ward physician with her intern. Unfortunately, by this time I am convinced that I have succeeded in making her nervous. I have strongly questioned the use of a powerful epilepsy medicine, which was given to Tobias immediately after a single and very short epileptic seizure. We were not at all in agreement. After a moment, I come to the conclusion that the only reason the senior doctor has asked her intern to accompany her is for emotional support. I am guessing she doesn’t want to be alone with me. It may sound like I am being too suspicious, but it turns out that the intern doesn’t play any other role than to agree with his boss’ reprimand: Tobias will not be pressured with three different changes of environment in the same weekend, it will be too tiring for him. She has consulted the contact book and assures me that we must eliminate some of the plans we had for the weekend. They look at each other and then at me; they are immovably unified in their view. The staff’s authoritative attitude doesn’t make me feel as downtrodden as it did earlier. I have become accustomed to having them treat our family’s respect for and understanding of Tobias’ needs as totally uninteresting. Maybe, given that these doctors only seem interested in a medical view which values the body and not the soul, it is impossible for them to understand our insight into his situation. 77

Instead of feeling despair this time, I ask them if they have an opinion on which of the weekend’s activities they feel Tobias should cancel. They look at each other with uncertainty and the ward physician says that Tobias’ girlfriend should be satisfied with seeing Tobias at our home. In the same breath that I defend Tobias interest in his girlfriend, the intern says that he should instead refrain from the visit with his grandmother and that his grandmother should be able to manage without him, despite her birthday. I answer that maybe this would be a good idea. Since I don’t feel any sense of cooperation, I have no desire to tell them the truth. And the truth is that we are going to do exactly what we have planned and let Tobias get all the rest he needs. What would happen if we stopped listening to the signals our son gives us, and instead started letting ourselves be governed by experts who have opinions on things they are not competent to have opinions on? That’s what most family members do – they feel lost and unsure, stop using their own common sense and trust the authority of the white smocks. “Oh, you brave, new world” I call out, but only to myself, because I realize that the staff here does not want to be evaluated. How would I, the bothersome mother, wish to be treated? Yes, I will answer to those who have the energy to read this: I wish that the staff could differentiate between problem and problem solving. I wish that they would describe the problems they see instead of suggesting their own solutions to problems that haven’t been articulated. Then the doctor in the above example, who is the person who perceives a problem, would have contacted us and said something like, “I am concerned that, if Tobias is going to be at several different places during the weekend, he won’t get the rest he needs. What are your thoughts on this?” Or another honest articulation of the problem could sound like this, “I read in the contact book that Tobias will be at three different places this weekend. This worries me, since our experience tells us that family members often don’t understand how much rest a person with a brain injury needs after a hard week in rehabilitation. Have you thought about how you can meet his need for rest in such a full weekend?” I believe this could be said in a way that shows that the doctor is prepared to at least listen to the answer. Our answer would demonstrate whether or not our plans for the weekend were unrealistic or if we were prepared to accommodate them according to Tobias’ need of rest.

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Of course Tobias gets to sleep at his girlfriend’s on Friday night and for the first time in a long time he sleeps twelve whole hours without waking. On Saturday, we celebrate Grandma’s birthday, and, after the birthday lunch, Tobias sleeps in their bed a few hours. On Sunday, the family is gathered at our house and we come up with the idea of playing Monopoly. No one expects Tobias to understand Monopoly, since he seems to have forgotten most of the skills demanded for understanding of basic reading and math. We expect to play for Tobias when it is his turn. Tobias’ injury means, and we know this, that he has lost all the numbers from his memory. However, to our joy, he moves his piece exactly the correct number of spaces on the board. Immediately and without counting. He sees and registers the number of dots as a whole, a pattern and also an amount. I shouldn’t be so surprised by this since the understanding of quantity is independent of the left brain’s numerical and digital thinking. The right side of his brain is less injured; there he has “only” suffered from internal bleeding. No nerves were cut off, as opposed to the left hemisphere, which is now missing a big part of its brain matter. The right side of the brain puts its energy into analogical or holistic thinking, for instance images and other patterns. When Tobias tries to name the number of dots on the dice, he is just as often incorrect as correct. He looks at the total number of 8 dots, says “nine”, and moves eight spaces. Each time, the correct number of spaces.

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On the Way Back, or Towards Something Else We are called in to a planning meeting. This means that Tobias, the team that works with him, and his family members are to meet to plan his treatment here at rehab. I am aware that according to the current healthcare law, there must always to be a treatment plan which is documented and kept in the hospital file of every patient. In other words, treatment must be planned. I guess the aim of the team’s planning meeting is to coordinate its efforts on behalf of every patient so that everyone agrees on working towards the same goals. I hope this is the case, but I don’t want to ask too many questions. The atmosphere doesn’t seem to invite questions, and for Tobias sake, I don’t want to be perceived as more of a pain than absolutely necessary. Knowing that I risk sounding like a nag, again I find myself writing that my professional experience has made me fastidious about the value of professionalism. In the past, I have taught leadership training and have come to expect that professional staff groups practice effective meeting techniques. An absolute minimum demand for the person calling the meeting is that s/he, in advance, informs the participants about the purpose of the meeting as well as about which questions will be discussed. Everyone participating in a meeting should be able to answer questions at the beginning of the meeting such as: Why are we holding this meeting? What are we (myself and the other people who are invited) hoping to get out of the meeting? How can each participant prepare for the meeting? How am I expected to contribute? Is the purpose of the meeting to inform, be informed or make some kind of decision and, if this is the case, about what? Right now, I know nothing about the planning meeting in which I am expected to participate. If the whole point of it is to create or improve upon a treatment plan, then I do realize how difficult it must be to agree on such a plan for a patient who changes daily in terms of how accessible he is. Someone who one day needs to be left alone without demands and exercise, just to take in all the new impressions around him, and who another day is easily motivated for one kind of training, but absolutely impossible to motivate for another kind. I believe that we need to realize that we must be humble and ready for whatever openings Tobias is well enough to present us with – and that this aspect of treatment cannot be planned. On the other hand, I have written down something which with good will still could be called a treatment plan. 80

The treatment plan, according to my knowledge of Tobias could be formulated as follows: “To assess Tobias’ ability to concentrate and pay attention moment by moment and day by day and adjust the efforts of the staff accordingly. This might mean in one instance giving him attention and keeping him company while trying to communicate empathy, in another, practicing personal hygiene routines, and in a third showing him how to tell time and explaining what telling time is used for. In summary, in every moment strive to seek and use the ‘channel’ which is most open to Tobias ability to concentrate.” This way of working places huge demands on the flexibility of the team and must allow for improvisation in his daily schedule. Can one ask this of the staff? Surely there exist thousands of practical obstacles and problems, but yes, they could be solved. I say nothing of these thoughts to the staff. When I just asked a member of the staff team about the possibility of family members taking part in the discussion about treatment in the planning meeting, I received the answer “There is not so much discussion during the planning meetings, rather it's mostly information from the senior doctor.” Does it have to be this way? Or is this just an illustration of what is called “pluralistic ignorance” (an old sociology term, which means that many are aware of how wrong things are, but no one dares to state their opinion since they are afraid of risking rejection)? I decide to give the meeting a chance to positively surprise me and not question the meeting’s protocol until I really find a reason to intercede. The senior doctor begins to speak. In a friendly tone, he talks and talks. He says that Tobias will not be here forever, that eventually, maybe in a couple of months, he will be discharged. He talks about what Tobias won’t be able to do and that it can be problematic for Tobias to live in an apartment with stairs. After a while, I have the feeling that the senior doctor is expressing opinions on things he is not competent to have an opinion on. I assume that he demands this of himself, as if he believes he must live up to the expectations of colleagues and family members who want to know everything about their loved one, including the ability to foresee the future. At the same time, I realize that he is trying to accommodate the vision that family members are important, so he stresses that “you must start thinking about where Tobias will eventually live...” In his next breath the senior doctor states that going back to his old apartment is out of the question... “We have a group home being set up nearby...” 81

His monologue irritates me. I experience it more as a sermon than as professional information. From a staff manager, you would at least expect a little feeling for what it means to use the combined resources of a group meeting. “Wait”, I say and look at the senior doctor. “I think that you’re starting at the wrong end. The problem of where Tobias will live in two months needs to be solved. You’re already sitting here and suggesting a solution. There are probably many solutions, but in the meantime, we can wait with that. Couldn’t you briefly just describe in simple terms how you as a doctor perceive what Tobias is able to manage and what, according to your experience, you think he might be able to manage or not manage when he is discharged in two months. When you are done, everyone sitting here can explain from their area of expertise, what they see Tobias accomplishing. When we have heard everyone’s thoughts, then maybe we can put our clever heads together and suggest solutions.” “Well yes, of course”, says the senior doctor kindly and gives a fantastic and short summary of what his experience with Tobias leads him to believe will be possible. In a natural way he doesn’t use very many words at all and states almost no prognosis, since he is the person at the meeting who sees Tobias the least. The others in the team become involved and contribute and inform us of what they have seen of Tobias’ ability and limitations and the picture now becomes just as complicated as it, in reality, should be. A brain injury is so individual that a prognosis is almost impossible to make. “Oh,” I think, “it was this easy to get some substance into this meeting”. Why then did it take so much energy for me to jump in? Because it really took a lot of effort - I'm sure my whole body was blushing. Probably because this is not my territory and these are not my colleagues. I am the outsider looking in. And I am a family member with a clear and limited role on the team. My role as an outsider puts me in an inferior position, and I don’t have a mandate to act in my professional capacity here. In addition, I don’t know how much the senior doctor feels a personal need to conduct his monologues. It could easily be so that I threaten his sense of self confidence by breaking the normal pattern and questioning his behavior in front of his colleagues. It demands all of my strength to jump in and change the course of the meeting, despite knowing that I must do so if I am to help Tobias into a future with possibilities. In order to get myself out of this feeling of inferiority which 82

threatened to hinder me and make me quiet and helpless, I had to realize that I am not dependent on them. It took no less than the well known Maj-Britt Bergström-Walan, who sat next to me at a psychology congress and participated in my agony by listening to my story, to remind me of this. “You can take him out. Remove him. Surely there are other rehabilitation clinics?” she said as if this was obvious. Without thinking, I had taken for granted that I was dependent on the staff, the clinic and the healthcare system. I had felt helpless in the conflict between my conscience and the staff’s need of compliance from family members. My colleague’s comments gave me the freedom to nurture my feeling of justice. Something happens to us when we enter the doors of a hospital. I see so many patients and family members who are so grateful for whatever help they get, so well brought up in their thankfulness, that critical thinking, the right to make demands and to use basic common sense disappear the moment their bodies pass through the main doors. Inside of these walls, the air I breathe says “comply and be grateful”. I draw the conclusion that the staff members who maintain this spirit are unsure of their own professional identities and competence. When it is the role and the title that confers authority, you can't afford to be humble and flexible, because your ignorance might be revealed. However some amount of incompetence or ignorance is always unavoidable as long as we are human. As I choose to write this, my goal is not to accuse but to bring issues to light. And not in the least for myself, do I want to increase the understanding that neurological rehabilitation is a young science. It is still fighting for its economic funding as well as for its very existence. It works with difficult cases which are extremely difficult to assess and the discipline lack exact measurements. Maybe they are striving to achieve the same status which defines many of the more established medical disciplines, which survive on the idea of exactness and receive confirmation from probability based research. But exactness in healthcare is a myth. This myth of exactness is an adaptation to our need for things to be simple, understandable and predictable. Discussion Questions The preceding chapter is about the professional roles in a hospital, about hierarchies, and about authoritarian communication in healthcare. No one seems to want it to be this way, and yet most people 83

resign themselves to the unspoken norms as to who can talk, suggest, question and decide. All work groups eventually develop more or less practical norms for differences of power in different issues between the group’s members. The perimeters for these differences in power, distance and hierarchy usually relate to education, knowledge, experience, age, gender and other things that give status in that specific group. • Do you agree that there is always some form of difference in power depending on education, knowledge, age, gender, etc? • What hierarchies do you feel are acceptable in healthcare or where you work and in what ways do they facilitate the activity? • Do you have a hidden order of hierarchy in your staff team or is it explicit? I questioned the agenda and protocol of the planning meeting. This might not be the usual way things are done. • In your opinion, is this unsuitable or a good thing? • Would you like to question a routine? • If yes, how would you like to express yourself? Try it out on someone you trust to see if you can express yourself in the way you want to. • Is there anything in the text that has particularly touched you or that you recognize? • In what way?

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Longing for the Operation The fragment of fractured skull is still in the freezer at the big hospital. Like a complicated puzzle, the pieces are lying, waiting to be put to use in their owner again. Tobias is on the waiting list for an operation. His head has sunken in on the left side, where the skin is lying directly over his brain. It isn’t a pretty sight, especially since his hair is still cropped after the operation on the night of the accident. Tobias is restless and impatient. Every time we ask him what worries him most he points to the sunken area and looks up at me with questions in his eyes. We answer: “Yes they are going to operate and put back the skull fragment there, but they haven’t found an operation slot for you yet. Waiting, waiting. Tobias has such a short memory that he doesn’t remember having asked before and he doesn’t remember our answer. My instinct tells me that he believes that the exterior injury to the skull that he can feel with his hands, that this visible concave area, is the root to his inabilities. And without being able to articulate such thoughts in words, he thinks that after the operation he will be whole again. At the end of November they give us the go ahead. Tobias will be operated on Thursday! Hurray! But on Thursday he is still at the ward. What happened? They didn’t have time. A new appointment is made. Now there are two weeks left before the operation. Tobias is longing. It is hard, not being able to hurry it up. Patience!

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Relapse The operation is tomorrow. Tobias is back at the hospital again, in the same ward as before, but he doesn’t recognize it. The surgeon who will be performing the operation is one we know. He belonged to the team of doctors who took the time to listen and explain as much as was possible. I ask him to please be careful about what he says during the operation, since patients sometimes at an intuitive, unconscious level understand what is said and can be affected by it. “You can relax”, he says, “we speak in a raw, but friendly tone”. I don’t feel comforted by his answer, but decide it is pointless to try and explain why. Several years later, I learn that Tobias brain injury has made him considerably more sensitive to communication undertones than to the actual meaning of the words, so if the tone really is warm and friendly, then it does him good. After the operation, Tobias lies in his bed. I come to visit. He has regressed several months in his development, back to his earlier inabilities. He can’t urinate, he can’t even articulate a single word, not even yes or no. I can see that he is aware of his inabilities, that he is disappointed and afraid. This isn’t what he had hoped for. I know that with an injury of this kind I shouldn’t overestimate his ability to “hope” and “believe”, etc. But on a more intuitive level, in his own mental images, I believe he can remember how he used to be and feels deeply frustrated over all these unexplainable obstacles. At the same time, he protects himself against realizing the difference by using psychological defense mechanisms. No person has the capacity to realize these differences to their full extent.

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PART III Daily Life and Disabilities

Small Practical Things and Long Term Goals A year and a half has come and gone. Tobias has learned to stand and walk. Since this summer, the summer of 1997, he can walk completely by himself, without holding on to anyone or anything. At least when he is walking on plane ground. He has been living in his own apartment ever since he was discharged from rehabilitation, contrary to the senior doctor's prognosis. It was a good thing that I didn’t have much respect for their expertise because if I had, we would have put Tobias on the waiting list for the group home, and Tobias would have been forced to adjust to yet another environment and yet another role as a patient. I must add that Tobias helped me dare to believe in the possibility that he would be able to move home to his own apartment. He didn't understand much of our conversations that fall, and he was seldom able to concentrate enough to make his own choices, yet with both strength and determination, he managed to communicate that he was going to return to his home. So the rehabilitation staff, including the occupational therapist and physiotherapist, measured and studied his bathroom, the door openings, the height of the sofa, etc, so that they could adapt the apartment to a handicapped person using a wheelchair. Tobias was completely uninterested in the involvement from the rehabilitation team. And he was seemingly convinced that when he moved home, everything would be just as before. He wouldn’t have to be a handicapped person in his own home. And in some ways he was right, since his motivation improved as never before, to fight and make sure whatever it might cost in sweat and tears, he was going to be independent of the wheelchair! And he was. But not everything was as before. When Tobias wanted to make breakfast, he could stand for ages just staring into space. Maybe he had taken the butter out of the refrigerator and his personal assistant had sliced a piece of bread, but what next? How do you get the butter on the bread? A tool is needed, sometimes he understood that, even if other times he just went ahead and used his fingers. Where was the silverware? It took a while to find it. And then again he was left standing still without direction. If he received help remembering what he was doing, he could move on. He looks down in the silverware drawer and sees different tools with different forms. But which one should he take? And what was it now he was looking for and why? He takes something, because he doesn’t want to stand there feeling dumb. It is a spoon, whereby the assistant or someone in our 89

family looks at him and either says it is easier with a knife (and then he is faced with a new problem: what does a knife look like again?) or we simply wait until he realizes his mistake. Which he doesn’t since most things actually end up working. This is an interesting learning process for us – how many things do we do in a certain way because of convention and how we are brought up and how many things can be done in a different way with more or less the same results? Of course, you can spread butter with a spoon, and it is slower to eat soup with a teaspoon, but it can be done, Tobias has shown us that. Eating soup with a fork is, on the other hand, more difficult, and he is torn between realizing his mistake and stubbornly trying to achieve the impossible. During the winter, the rehabilitation clinic maintained contact with Tobias and offered him some rehabilitation exercises. “You family members are needed,” they said “because you know what kinds of things Tobias was interested in before. We hope to help him find them again”. And so they suggested that he could learn horseback riding, even though he was never interested in that. We family members are always open for new attempts, so we too, suggested this to Tobias. But no! He refused. The staff suggested early on, too early on, that Tobias should start using a calendar. He couldn’t write himself, so his so called personal assistants would do that for him. Our family supported the idea and helped find times when we thought Tobias would realize the value of keeping a calendar. No! He refused to use the calendar. It got to the point that he found it uncomfortable to participate in the planning meetings, since the question was raised every time. When I realized what was going on, I promised Tobias to stop the staff’s attempts to convince him to use the calendar if the issue was raised again. Then he did agree to participate. It turned out he couldn’t stand to tell people “no” if they in even the smallest way were sending him signals that they had their minds set on convincing him or in some other way might have their feelings hurt. Tobias’ intuition when it came to interpreting and understanding other people’s needs and intentions was impressive, but unfortunately it also served to hurt him, since he wasn’t able to handle conflicts that might arise. Before the accident Tobias was something of a Bohemian. He refused to use a calendar then too. Don’t ask me how he managed his studies. 90

So trying to get Tobias to accept the use of a calendar in his life just then was unreasonable. The right time didn’t come until six months later. It’s all about being able to listen and observe when the right time comes. But there was something else that had interested Tobias his entire life. Tobias loved to ski. Downhill skiing was his real passion before the accident! On the other hand, he wasn’t very motivated to perform for the physiotherapist: now he could both stand and limp forward, but his attitude seemed to be that the rest would take care of itself without any physical exercise or effort. This was typical Tobias’ behavior before the accident. In January 1997, we suggested a treatment goal to Tobias and the physiotherapist which we hoped would motivate him: in March 1998, he would be able to stand on his skis in our family’s favorite ski resort, Hemsedal, in the Norwegian mountains. Tobias said yes, but the physiotherapist was skeptical. Tobias could hardly keep his balance when he wasn’t wearing skis, and his ability to move his right leg was considerably reduced: Tobias couldn’t flex his ankle and therefore couldn’t put his heel down. He had hardly any feeling in this leg, couldn’t lift it backwards, couldn’t lift the leg up and forward, couldn’t shift his weight over on the right leg, etc. But he really wanted to believe that he would be able to ski and that is what counted for us. He was, just as he used to be, totally uninterested in physical exercise, so we had to find something to motivate him and a goal that was attractive to him. Skiing was that kind of goal. But Tobias’ physiotherapist showed no interest in it. I asked around among acquaintances if anyone knew of a physiotherapist who could work with Tobias, first and foremost with skiing as a goal. I eventually found someone good, who was specialized in brain injuries. After careful study, the new physiotherapist sent Tobias home with a video film on handicapped skiing, which showed people using different kinds of help devices. The specialist’s opinion was that Tobias wouldn’t be able to learn to stand on skis. And if he did, he wouldn’t be able to control his speed, hold his balance or control his right leg. In other words, we would be putting him at an imminent risk for broken bones. And there we were. We had found something to motivate him, but the experts didn’t believe in our idea. So we had to train him ourselves

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and ask his ordinary physiotherapist to at least use this goal as an argument to motivate him when he showed no motivation during his sessions. In March of 1998, Tobias and Mårten went to Hemsedal to practice skiing for a week. Tore and I arrived the week after. When we arrived, our sons showed us a video of slope training which is the most impressive demonstration of pedagogic and patience I have ever seen. To begin with, Mårten helps Tobias get the courage to stand up on the slope. Getting him onto the ski lift is impossible, so they get someone to drive them up to a spot on the green beginners slope which is close to the road. Mårten promises Tobias that he will get him a lift from anywhere on the slope if he can’t make it down. Just getting the skis on is an enormous task in itself. His right foot is almost always tense and somewhat curved in, especially when he strains it. Tobias is helped to stand up straight on his skis, but he is afraid. Mårten attaches a little plastic holder, which he uses to keep the tips of the skis stuck together. He bought this in Gothenburg at his own initiative. No expert has dared to give us any advice towards this crazy project. Well, then it’s just a question of pointing downhill? No, not even in our imaginations are we that naive. Mårten stands in front of Tobias, with his back pointing in the direction he wants Tobias to go and bends over to slowly pull Tobias forward. Mårten pulls Tobias slowly downhill. As soon as the slope becomes the least steep, Mårten has to break in the same way, using his hands against the tips of Tobias skis. Tobias’ contribution consists of remaining in a standing position with his legs somewhat bent. Now the real teaching brilliance begins. Mårten instructs as he is bent over forwards like an open Swiss army knife, riding backwards on his own skis, in front of Tobias. He looks up at Tobias, instructs, stops, stands up and talks, listens, bends forward, pulls, stops, stands, instructs, listens, encourages, bends forward, pulls. After doing this for several days, in the same Mårten as a self taught ski instructor – an impressive demonstration manner, Tobias has begun to of teaching ability and patience.

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understand how to lean forward and use his weight. He still can’t turn to the left, since that means he has to put his weight on his right side. So what do you do if you don’t have full use of the right side of your body? Shrewd Mårten comes up with the answer: Tobias can use his functioning left arm and with his left hand press on his right thigh when it’s time to turn. And how does he know when it’s time to turn? That kind of planning is still too difficult, so Mårten instructs prior to every turn... at the pace of a snail. All of this is documented on video and already in the next week when Tore and I arrive, Tobias is able to ride the lift and stand on his skis down the whole slope, with many breaks, of course. Sometimes Mårten is able to let go, ski next to Tobias and encourage him and jump in to help when necessary. And in addition to that, Tobias is now comfortable enough to fall down, so that he is less strained and more comfortable in the way he holds his body. Skiing has become fun again! And his self confidence grows...

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The Psychological Perspective and Issues This section discusses the sharply different perspectives and ideologies that characterize the views of medicine and psychology. According to the Swedish National Board of Health and Welfare, both professionals trained in psychology and medicine should rely on science and tested experience. Science should be based on research findings and those findings should be built on what is found to be true in a majority of the patients suffering from the same affliction, preferably in a controlled environment. Medical research, which is always strictly planned, demands controlled studies that enable the researcher to compare the effect of the medicine being tested with that of a placebo. (The placebo effect can be defined as the healing effect that a medicine can have, based only on the patient’s positive attitude and his or her expectation that the medicine will have a healing effect, rather than on the chemical composition of the medicine or its actual effect on the body, as determined by clinical trials.) In medical research, interest is centered in the “real” chemical effect, while in psychologically oriented research, there is at least as much interest in the effect of attitude, hope and faith (as with the placebo) and its effect on the body and mind's ability to heal. Opinions vary about the degree to which controlling the context in which a patient is studied actually lies in the interest of science, since every attempt to control human circumstances separates the patient from the reality of his/her everyday life. The traditional medical school of thought is based on the assumption that one can study the limited and individual relationships between each and every component that make up an illness and its treatment, while the more holistic, psychological view emphasizes that all the different components affect one another, so much so that together they make an inseparable whole. For someone with a psychological perspective, science then becomes the fruit of collected experience, where the scientist strives to be as conscious as possible about seeing the situation as a whole and at the same time s/he also pays keen attention as to how different factors contribute to the results. A holistic view of knowledge and skills provides no simple answers, but instead often serves to raise new questions and inspire new approaches. Such an open holistic view should be very useful with brain injuries, since all the experts, independent of their research focus or medical specialty, accept the idea that similar injuries cause different medical outcomes in different individuals. Because the actual

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symptoms can almost never be predicted from generalized knowledge, it is extremely difficult to formulate an accurate prognosis in any individual case. Thus, the scientific research which demands statistically proven correlations doesn’t have much to contribute when it addresses the prognosis of an individual patient who has suffered a brain injury. Nor does it have much to contribute when it comes to methods for stimulating or motivating that individual, which is why intuition, keen observation and imagination must be used instead. The holistic view I am advocating suggests that the practitioner draw on his or her intuition and knowledge of similar situations and add those to what is understood about the current patient’s specific injuries and circumstances, including his or her personal strengths and weaknesses, close relationships, positive and negative experiences of authority, earlier experience of health care and treatment, etc. Something which is often forgotten, but which strongly affects treatment, is the practitioner’s own feelings, experiences and personality. Psychologists are trained to pay attention to their own reactions and are therefore required to undergo therapy themselves as well as to have other professionals who supervise their treatment of patients during their period of apprenticeship and with whom they can consult about difficult cases once they finish their education and are licensed to practice. Even experienced psychologists should engage a colleague or a psychotherapist to work with them when they feel a need to re-examine some of their own issues or feel the need for additional self-reflection or professional renewal. The reason for getting a therapeutic “tune-up” for oneself or for engaging a consulting therapist in the role of tutor or supervisor is that talking to another professional can help separate one’s own feelings from the patient's feelings. These can often be sensed on a physical level, apart from what is expressed verbally. In psychotherapy, this is usually called resonance. In effect, the practitioner becomes a resonance box or echo chamber which sounds the patient's transferred feelings, especially those feelings which are too difficult for the patient to handle or to put into words. A practitioner who believes that s/he works objectively but who is unaware of his resonance function, may very well experience his work as exhausting without understanding why.

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Visions and Alternative Views All the conscious and unconscious factors which affect a practitioner’s ability to see the whole picture, including the patient’s ability to accept help, include so much information and so many areas of expertise and experience that I believe that the term intuition provides an appropriate description. Although our educational system handles every part of the whole as a separate subject -- that is, we can study ergonomics, social psychology, pedagogy, neurology, motivational psychology, etc, each as a separate subject at different faculties and with different teachers -- in our professional practice we don’t usually create an exhaustive map which names every mutually contributing part; instead, we try to synthesize the different contributing parts and see the situation holistically. We have to rely on our intuition, which works to integrate our knowledge and experience and which, though we sometimes fail to understand the situation at that moment in time, eventually helps us find solutions that suit the current patient. In order for our intuition to lead us in the right direction, we must be open to the idea that there are things we don’t know and can’t control, and at the same time, we must learn to trust that inner voice that distills the essence from the enormous sum of information the patient provides us from the many different levels and facets of his or her personality. In 1994, I sat on a panel of European researchers and clinical practitioners who were debating the value of hypnosis. The title of the seminar was “Hypnosis: Science, Art or What?” This title is, of course, somewhat misleading, since it implies that hypnosis is either an art or a science. The researchers presented the opinion that clinical practitioners should learn from the research results since they provided an objective truth. But do they? Can research ever be objective? The researcher him/herself chooses a direction and defines what is to be studied and then defines what should be held outside the scope of the research despite the fact that it may indeed be relevant. The researcher has blind spots, just like the clinical practitioner. The research tradition has an advantage in that the researchers who publish results in periodicals must always describe the exact way they collected information and obtained their results. As a result, colleagues find it easier to contribute critical questions. To my thinking, subjectivity always infiltrates what we do, and can be compensated for if one’s view is complemented by other perspectives. 96

A practitioner who mainly works with treatment, accumulates a mass of information. The practitioner, like the researcher, has blind spots, so if the practitioner asks for research perspectives, his or her perspective may be broadened. On the other hand, it may also be narrowed. Limitations can be motivated by the practitioners' need to get answers, give advice and offer remedies. The frustration which comes from lacking control over the patient's situation can sometimes lead to rash conclusions in individual cases. If, however, the practitioner is able to accept a certain degree of ignorance, a reflective process can help the practitioner widen his or her perspective. Such a process can be facilitated by a supervisor or tutor. How can the example of Tobias' skiing illuminate the difference between holistic thinking which should be characteristic of the clinical psychologist, and the aspiration of medical science to be objective? The physiotherapist chose to start with what she knew for a fact, and in doing so she was working in accordance with the National Board of Health and Welfare's demand for science and proven experience. According to collective experience, it was highly unusual - and might not even be possible -- for a person with Tobias' symptoms to stand on skis. I can understand why the physiotherapist would see it as an obligation to inform us about more suitable forms of therapy. And yet, I would like to see more imagination, creativity and a greater ability to listen and observe the patient. A holistic view can broaden the treatment perspective in the following way: The physiotherapist relies on research findings and states what she or he has learned, which is that the patient's physical state makes standing on skis extremely difficult. And after a thorough description of his/her observations in a way that the patient can understand (in Tobias' case through an assistant and/or family member since his aphasia limits his understanding of vocabulary), the physiotherapist can ask the patient if, despite poor odds for success, he none the less wants to set skiing as a goal. Sometimes communication should take place with the help of a family member who understands how the patient feels and thinks. For the physiotherapist to feel secure in his or her professional role, s/he might need to clarify that the training pointers s/he will provide are not a guarantee that the patient will reach the chosen goal. The physiotherapist might also need to discuss the situation with family members in order to assess the patient's ability to handle the disappointment that would result from not being able to reach the goal and to reassure the patient that he has their support if this turns out to 97

be the case. What could actually be accomplished by following the wishes of the patient, despite the opinion that these plans were unrealistic? I would argue that the patient would be motivated to work and would be allowed to hold on to his own idea of what might be possible, up to the time when the goal has to be modified by another reality. During this time, the patient has the advantage of physical training, which is extremely important, irrespective of its result. In my vision, the physiotherapist can communicate her prognosis while still respecting the patient's motivation and conception of his world. Discussion Questions • How would you have reacted in the physiotherapist’s place? • Is there a difference between how you would have reacted and how you would have wanted to react? • If yes, why? • How do you feel about respecting the wishes of the patient which are often expressed through family members? • How would you judge whether or not the family members really understand the best interests of the patient or whether they are actually communicating their own wishes and desires based on inadequate insight? In your work with physically challenged individuals, you may be able to increase your own level of consciousness by reflecting on how you feel and react. If several of you work with the same patient, you can compare how each of you understands the patient’s feelings and personal qualities and possibly come to acknowledge that, in some cases, you have different interpretations. • Do you need a tutor in your work? • What would you want your tutor to do: add new knowledge and answer questions or help you reflect on different possibilities and perhaps widen your perspective? • What would one provide in the long term and what would the other? For health care workers and rehabilitation personnel: Think about a patient in your care. • Write down some of the treatment methods you use with your patients. 98

• What do you want to accomplish with these methods? • What do you think these methods give the patient in the long and short term? You probably have an idea of what your patient needs from you. • Write down some of these needs. • How did you reach the conclusion that these are his/her needs? • Did you draw on your own or on other people’s published research? Or did you draw on any the following: • Other people’s experience treating patients? • Your own experience with patients? • Your own empathy with this specific patient? • The patient’s expressed desire – if so how was this expressed? • Family member’s knowledge of the patient’s character and temperament? • Do your chosen methods have other sources? The term empathy has several different connotations. The older school of Swedish health care workers weren’t supposed to be emotional in their work. The thought was that feeling empathy could lead to a lack of professionalism. But nowadays, sympathy, which is seen to cloud professional judgment, is differentiated from empathy, which is perceived as a necessary ingredient in a well functioning treatment relationship. This differentiation is described in more detail by Arthur Ciaramicoli and Katherine Ketcham.

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Progress, Hope and Meaning Have I talked about the epilepsy medicine? No, I guess I haven’t. Epilepsy is a common complication after brain surgery. Tobias started getting serious seizures four months after the accident. Each seizure would last a good fifteen to twenty minutes. They started after the December 1996 operation and occurred, on average, every two weeks. Tobias also had a mild seizure in October at the rehabilitation center, and in my opinion, the doctors were way too quick to give him Carbamazepin. The senior doctor later changed the prescription to a different trade mark, but there are no significant differences between the two. They both have the same chemical base and are made for treating the same symptoms, the cramping kind of epilepsy which used to be called a “grand mal” seizure. I was skeptical about the need for medication since a mild, one time seizure does not constitute a pattern, but it was impossible to get the doctor to wait and see what would happen next. The surgeon, on the other hand, let himself be convinced. But unfortunately, Tobias had another seizure a few days after the operation and after he stopped taking the medicine. We don’t know whether this seizure was an effect of the second operation or of taking the medicine away too suddenly. No criticism should fall on the surgeon, since I was Tobias legal guardian and would have gladly signed a document saying that I took full responsibility for all the consequences of stopping the medicine. The surgeon treated us with respect, which is more than I can say for the doctor who originally prescribed the medicine. The information we were able to get about epilepsy and its effects was limited at best. You can, of course, get some information at the state pharmacies and on the internet, but the only information to be found there at the time had to do with how epilepsy manifests itself (its symptoms) and how different types of epilepsy are categorized in terms of grand mal, petit mal, etc, as well as the kind of medicines that are used to treat it. My previous knowledge of epilepsy comes from my clinical experience as a psychologist. Dr. Hambert, a well known, now retired Swedish neurologist, used to refer patients to me. I would help them find psychological strategies, such as hypnosis to help them handle their epilepsy. At that time, I did a lot of reading up on the subject. Now, in addition, I have been asking questions of anyone and everyone who has an opinion on the subject. For example, at a conference on hypnosis in San Diego in June of 1997, I met several 100

colleagues with extensive experience researching and treating epilepsy. For example, I talked to Dr. Karl Pribram, who was in his 70s and who had originally worked as a brain surgeon. Over the last 30 years, Dr. Pribram had been studying the brain’s functions and had made a name for himself in the field of neuropsychology. I took the opportunity to pick his brain during a break in the conference – and I must say that his vitality, calmness and clear blue energetic eyes inspired me with a sense of confidence. He seemed to know how to take care of his own health and proved himself a sympathetic and accommodating listener. I asked him the same questions I had been asking doctors at home (without ever receiving a satisfactory or understandable answer). “Why is it that the doctors are willing to go to any lengths to avoid a seizure? And why are seizures considered so dangerous?” The reason I was asking these questions was, of course, because of my worry about the numerous side effects of Tobias' medications -- such as fatigue, problems with vision, and in some cases diseases of the blood. The answer Dr. Pribram gave me was to “Continue to work with Tobias, to help him find strategies to handle the seizures himself.” “Medication?” He told me that ”Nobody knows what is best. You are the one closest to Tobias, you know him and can see what is good for him. We know too little to say anything at all in terms of generalizing about the dangers and possible advantages of having epilepsy.” Advantages? Had anyone mentioned advantages? Yes, we have touched upon those thoughts. Maybe the repair and restoration of the communication paths between the nerves express themselves as sudden electric transference, with cramping as a side effect. At times, we had noticed that Tobias make huge steps forward, in specific and limited areas of his development in the days just after a seizure. However, other times, he is tired and distant. What did the doctor say about the risks associated with seizures? Like the Swedish doctors, Karl Pribram couldn’t give me a straight answer there either. Earlier, I had been given a variety of answers, such as, “He shouldn’t have to have seizures. He could fall down and hurt himself. He may get less oxygen to his brain and have to deal with new injuries as a result.” But no one could explain why the brain might get less oxygen. The only consistent answer I found was about what actually happens in the brain, in other words, that there is some kind of short circuiting, a kind of electric discharge which can be compared to lightning. 101

I have also read an article about different states of consciousness. It said that, measured in terms of brain activity, an epileptic seizure is the highest stage of consciousness This is logical. If the brain’s nerve pathways which make up its system of electrical lines, are cut, they won’t simply stop sending electricity. So the lines that are cut off continue to pass on the charge that reaches them. All of the sudden the lines end, so where does the electricity go? Maybe it just charges all the way up until it creates a discharge, a wild one where the running electricity finds other lines close by. What would that lead to? It might result in a disorganized contact which results in an overactivity in large sections of the brain, but which also creates new contacts and pathways, which in turn facilitates learning. Nobody knows for sure. At the hypnosis congress in San Diego, I also met a neurologist from Holland who had worked with brain damaged youths a long time. He explained that the only real danger was that some epilepsy seizures don’t stop. The brain can’t take such a high level of activity if it lasts indefinitely, so if you don’t get medical attention, usually a muscle relaxant in the form of a shot, you can actually die of a so called “status epilepticus.” He also said that the risk is higher if the patient has a fever. Then the brain gets overheated and can't lower its activity level by itself. From all this, I drew the conclusion that Tobias should be given fever medication after a hefty seizure, since his seizures sometimes resulted in an increased body temperature. Why didn’t anybody tell us this? Actually, Tobias took the question of medication in his own hands. Since his accident, Tobias hasn’t had a strong opinion on anything, and he has not given the impression of having access to his own personal judgment. Then suddenly he decided, after 17 days on a second period of medication, that he was now going to take only two thirds of his daily dose. Since Tobias is usually forgetful and has a hard time concentrating, we thought at first that he had made a mistake and misunderstood the dosage. But no, he explained that now he would take 400 mg/per day instead of the prescribed 600 mg. He emphasized only one word: now. And he showed us the amount that made up 400 mg. I must admit we were pretty impressed with the authority with which he expressed his will. This was not the same stubborn will which was focused on not being dependent that we had sometimes seen. No, instead, his will was expressed with a kind of inner calm and determination that was clearly grounded in a deeper knowledge of his own body.

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I count myself among those who believe that you can know this about your own body. In Tobias case, his idea seemed sensible, since the medicine had not succeeded in eliminating the seizures. The seizures would usually last 10 to 15 minutes, sometimes more, and the risk of cutting back on the dosage could possibly be that the frequency of the seizures would now increase. But we noticed no difference. Except one: Tobias was visibly more concentrated, faster thinking and more present on the days after he had insisted on cutting down the dosage. After two more months, Tobias cut back again, another third of the dosage, on his own accord. Same reaction this time: he seemed more awake and present, and his attention span and reaction time improved. Otherwise, he was his usual self. At end of July, 1998, it was time to stop the medication altogether. It wasn’t as big a surprise this time. Suddenly, one evening, he informed us “No, no pills.” Reaction? The seizures continued with the same frequency as earlier, about once every two weeks, but the seizures only lasted two minutes! This was a significant improvement. How can that be explained?

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“But What a String!” It’s the first weekend in May, 1998, and Tobias is with us on Brännö Island. He lives in his own apartment now and has personal assistants who help him plan, remember, communicate and perform all the other practical tasks that need to be done but demand two hands or several steps. We have friends visiting. Tobias’ assistant is also here. We could just enjoy an easy and cheerful moment together with these stimulating people, but our happiness is frustrated by the fact that Tobias seems to be passive, more passive than we have seen him in a long time. I socialize with my friends, but on the inside I am longing to know what is going on. What is happening inside of Tobias now? Is he as far removed from us as he seems? His own expression about himself hits me -- “idiot.” That is how he perceives himself. This is how he least of all wants to be perceived by others, but by closing himself off, it is exactly the impression he gives. His right eye looks empty and distant, while his left, well...today I am not sitting on his left at all and therefore don't see much of the expressive side of his face. Our company almost forgets Tobias is there. We chatter away at the dinner table. It is an unusually warm day in May, so we are sitting outside. A kite floats high in the sky. One of our friends, Mats, comments, ”What kind of a kite is that supposed to be? Real kites have two strings for steering. That one has only one string!” Spontaneously, Tobias exclaims his first words of the day, ”But what a string!” We laugh. We laugh for two reasons: the unexpected association, which is typical for people with a good sense of humor, and because the thought came from Tobias, at the right moment. In conclusion, this has been a hard day. It is so hard to know what is going on inside Tobias. Is he grumpy, like the 15 year old he seems to be these days? Many of his facial expressions seem to have something that reminds us of an adolescent. Or is he depressed about his situation? Or is his injury putting him in a fatigued state where closing down to his environment means shutting down in a way similar to sleepiness? By this time, I have realized that my empathy with Tobias usually leads me in the right direction. So in the evening, I sit on the side of his bed and I ask him about his mood. He looks at me angrily and says, “You!” 104

This has become a pattern. When he is most distraught about his situation he feels inferior. Who can he take out his anger on if not on those he feels closest to and who can handle his anger? In our family, that person right now is me. We were the two who fought most when Tobias still lived at home. When Tore and Marten used to witness our arguments, they would become extremely uncomfortable and used to plead with us to stop. Then Tobias and I would look at each other with understanding in our eyes. There was a trust between us, even during battle. And now, he doesn’t want to be dependent on me, but he is. He can no longer find the right words or thoughts to express his feelings. Therefore, he can’t choose whether to keep his thoughts to himself or to share them, since finding out what he is thinking requires getting help to find words and context. Otherwise, his thoughts and feelings just stay stuck on a “primitive” level and express themselves as tension, relaxation, pleasure or discomfort. Tobias often takes it for granted that we can read his thoughts especially when it comes to what he feels and why. At the same time, when he wants us to function as translators he says, “You know!” He is clearly upset that he has lost his earlier capacity to shut out whomever he wants and keep his thoughts and feelings to himself. Now he shuts out many people, even when he doesn’t want to, and he is worried by pent up feelings which he cannot identify. Tonight, I guess that his depression is about the new assistant. She is sweet and charming! Both Tobias and Marten think so. A year ago, Tobias felt the same way about another assistant and he could enjoy the feeling of infatuation. But then again, at that time, he couldn’t see his handicap with the same clarity as he does now. Tobias, sees his brother’s romantic interest in the assistant as fairly serious and he is jealous and feels left out. As I listen and “translate” he is also able to express his feeling of wanting his brother to himself. “How would you feel if they started dating?” I ask straight out. Tobias lifts his left arm in a gesture of war and says, “fight!” After a moment of silence, he adds in a soft voice, “selfish?...” I agree and at the same time express how important it is for him to be able to express his spontaneous, impulsive aversion to the idea that his brother might want to date his assistant, especially since Tobias also finds himself attracted to her. Later in the conversation I repeat my question to Tobias, “How would you feel if the two of them became a couple?” Now he says, “Take

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it.” I interpret, ”You would be able to handle it, despite your desire to fight it?” “Yes.” Discussion Questions Tobias is allowed to reduce the dosage of his epilepsy medicine at his own initiative and as a result he improves. • How do you feel about this: is it coincidence or cause and effect? The profession of being a personal assistant is a young one in Sweden. It is poorly paid, but demands a high level of competency and empathy. The relationship between the personal assistant and the “client” is strictly professional, and yet can still be more intimate than a private friendship. Young clients often want assistants in their own age group. It would seem natural that the client might fall in love with an assistant of the opposite sex (or of the same sex if the client is gay). • How would you feel and react as a personal assistant if your client falls in love with you? • Discuss possible expressions that an infatuation might have and how you think you would react to them! • What happens if the assistant falls in love with the client -- or is this an impossible scenario?

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“Difficulty Yes – Aphasia No” In some ways, Tobias is a new person to us. I am still getting to know him. And, above all, he is still getting to know himself. This chapter is about denial, irony as a tension releaser, and the projection of anger. I try to understand and empathize. How does one think without words? Because that is what happens. He can’t find them. Sometimes he is able to find pictures of what he wants to talk about and then at least he knows that something is working on the inside, even if he isn't able to communicate it to the rest of us. It’s worse when he wants something, feels something, and has a sensation of something abstract that refuses to let itself be imagined in the form of a picture. Let’s say he feels restless or disappointed or afraid or hungry. His brain won’t turn this feeling into words that would help him describe how he is feeling. Instead, the sensation stays on a physical level, like more or less intense feelings of discomfort or stress. Tobias himself often doesn't know how to interpret these inner phenomena. This is when, I believe, he retreats into his own separate world and shuts down as if he were meditating into an empty space, but against his will. The same thing happens when he doesn't understand words. He gets a questioning look on his face. I can say, “Tobias, can’t you hear that we are talking to you?” He can answer, “Yes,” but still acts like our speech is unintelligible background noise. My understanding of this is that he can’t manage to concentrate enough on trying to understand, that he doesn't have the energy to understand even if we were to try harder to be clearer and more precise. And maybe he is so tired of not understanding, that he wants to be free of it and released from his handicap by not being present at all, other than physically. I want to help Tobias become conscious of what’s going on inside himself, so that with time, he will become less sensitive about asking us to repeat ourselves and will be willing to let us know when he isn’t following our conversation. I think maybe it’s time to talk to him about aphasia. My intention in discussing this with him is to let him know that he is not alone in feeling confused and not being able to talk. There are many people in similar predicaments. I tell him again about brain injuries and how speech is affected. “It’s called aphasia,” I say. “No,” says Tobias. “What do you mean, Tobias?”

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“Not aphasia.” “You don't like the word aphasia?” “Not me.” “You mean that you don't have aphasia?” “Yes!” “It's called aphasia, when you have the kind of brain damage you have. It has to be called something. The word aphasia doesn’t mean that you are not intelligent or that you are dumb, only that your difficulty in finding words is a result of your brain injury.” “Difficulty, yes. Aphasia, no,” confirms Tobias in a calm and authoritative tone.” I refuse to give in, but don’t demand he agree. I just say, “You can call it a difficulty if you want because it is a difficulty. But people who work in healthcare call it aphasia, whatever you may think about that term.” I think he accepts this. But he himself won’t be using the word yet. And I must say I respect his sense of pride. It’s pride that sets our boundaries. He refuses any and all terms which carry with them a connotation of inequality. Another of Tobias’ strengths that sometimes surprises me is his ironic comments. It’s part of the nature of irony to surprise and overturn expectations. One example of this is when I explain an activity or process to Tobias which is very difficult for him to perform, but which becomes obvious to him once he hears it described in words. “You understand if you pick it up this way, that it's hard to pour...” and other similar comments provoke answers from Tobias such as, “Noooo, really?!” in a sarcastic and joking tone. His tone says, “Any child would know that.” And sometimes, despite the fact that Tobias knows even a child would understand something, I don’t know if he himself really understands what I just explained or if he is just defending his sense of integrity. Admitting that he doesn’t understand something that even a child knows is surely both painful and embarrassing. Another tactic Tobias uses to protect his sense of pride is more difficult to understand, especially if you aren’t armed with knowledge of psychological defense mechanisms. I can imagine that family members who come across this behavior feel hurt and tend to take it personally, though they really don't need to. Here’s an example: Tobias has a bad day. He is slow, has a hard time understanding, doesn’t have enough energy to concentrate and fails in most of the tasks he attempts. He wants to get dressed, but doesn’t see 108

the sweater right in front of him, pours tea in a glass half filled with juice. And when he is going to practise Lexia, a reading program on the computer, doing it seems insurmountable. Tobias loses his self confidence, but still finds a way not to be the underdog. Because, when I say, “Today, I can see you're having a hard time concentrating,” he stares at me, angrily leans forward, points to himself and says “me easy – you difficult!” It sounds like criticism, but not if you look at the psychology behind it. Anything that is impossible to support on his shoulders is dumped on someone else strong enough to carry the load. Children do this all the time with their parents, in puberty for example, and at the ages and stages in which they are developing their independence. It is confiding and trusting and can be viewed as an opportunity.

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Time Passes It is December now, two years and four months have passed since the accident. Many friends and acquaintances ask us how Tobias is doing. It’s always difficult to answer that question. He can stand, walk, go outside, play games which don’t demand words, enjoy a visit to the movies or the pub, a concert or a vacation with the family. But after a few weeks, he starts itching to get back home and into to his routines, which have become a kind of security blanket. He can understand so much that it feels miraculous to us, and he really looks intelligent when he is listening to someone; he tilts his head a little to one side, pays attention and answers with those few words that decide to present themselves at that moment, his lack of vocabulary compensated for by his wonderfully intuitive intonation and the melody of the conversation. “He speaks in three word sentences,” I usually say when I answer. “But he understands everything we say.” It’s partially or kind of true, if “understand” is taken to mean getting the general idea but missing the details. An example: Tobias comes into my room one morning when the whole family is at home. He and Marten have made breakfast and Marten has asked him to let us know that it is ready. Tobias says to me, “Eat.” I ask, “Are we ready to eat?” “Yes.” I test him, “What are we going to eat?” “Eat.” “Are we going to eat dinner?” “Yes.” “Do you really mean to say dinner?” “No.” He can’t find the words to say what he means, but he agrees with me that breakfast is the word he is looking for. We have the same problem when Marten and I return from a jog and start to stretch. I encourage Tobias to join us. His right leg could always use a good stretch since it still has some paralysis. It feels like he has to exercise all the time and not just so he gets better. It is a constant struggle to ensure that he doesn’t get worse. It becomes more and more clear that the names of specific body 110

parts just don’t stick in Tobias’ mind. He understands that we are talking about a body part. He just doesn’t know which one. Once Marten says, “I’m going to get my hair cut today.” I turn to Tobias and ask, ”Do you want to get your hair cut too? It looks like it needs it.” “No,” says Tobias and puts his hand to his chin. I would have completely missed the misunderstanding had not Marten asked, “Why are you touching your chin?” Tobias shrugs his shoulders as if to say “Duh?!” I exclaim, “Oh, you thought we were talking about shaving?” Tobias looks curiously at me wondering, and says, “Yes,” in a tone that says this is obvious, isn’t that what we were talking about?” And it is exactly because Tobias acts so “normal” that it is such a surprise that he exists so very far from a normal life and participation in normal conversation. His life is extremely restricted. Tobias can’t make any firm plans to go anywhere because he might have an epileptic fit at the last minute and have to stay home. Or he may experience extreme fatigue, in which case bed is the only answer. Tobias can’t fill his day with meaningful activities because his ability to take initiative is severely impaired. He doesn’t call anyone on the phone because he never knows if he will be able to find the words for what he wants to say. He can’t remember what he did last week and often doesn’t remember what happened yesterday. He has a very difficult time remembering the names of his friends, and a simple thing, such as how we are related, seems impossible to figure out. He is my son, but what am I to him? Sometimes he can’t remember at all, and sometimes when I tell him the word he is looking for is “Mom”, he is embarrassed since it seems so obvious. So the latest addition to his vocabulary is “of course”. Discussion Questions The previous four chapters are about not knowing and how extremely difficult it can be to find simple general answers to questions which surface after complicated brain injuries. • Choose a section which touched you and write or talk about how you were touched, how you felt about it, and how it affected you personally or at work. From the next chapter and onwards, I have decided to pose fewer discussion questions, and instead recommend that you use the book as study material. See what questions you can come up with yourself and then discuss as a group. 111

Dalheimer’s House – An Activity Center for the Mentally and Physically Challenged Tobias daily exercise program is no longer called rehabilitation since his brain injury will affect him for the rest of his life. For this reason, the national health care no longer has ultimate responsibility for his training program. Rehabilitation, per definition, relates to treatment with the goal of eliminating the effects of an injury and returning the patient to their previous state in so far as it is possible, in other words, “returning them to work.” Of course, we haven’t given up hope that Tobias will continuously improve, even if we realize that this improvement will be slow in coming. As a physically and mentally handicapped person – oh, these terrible words! – Tobias has the right to daily activity. This daily activity takes place at Dalheimer’s House and is paid for by the governmental welfare system. Daily activity is a right, according to the Swedish law, for people with physical challenges. In order to be included under this law, one must belong to a specific “sphere” of people. Strange word. But what else can they call it? “Category” sounds discriminating, “group” too general. Anyway, the three “spheres” of people included in this law are the following: • People with developmental challenges and autism or those who have an autism-like status. • People with mental challenges as a result of a brain injury that occurred as an adult and was caused by violence or illness. • People with permanent mental or physical challenges in their daily lives and who are as a result in great need of support and service. Tobias belongs to the second sphere. Our thankfulness that he is covered by this law knows no limits. Rehabilitation or not, his memory constantly needs to be exercised so that he doesn’t lose what he already knows. Those of us who are healthy exercise our memories automatically when we reflect about what has happened to us during the day, as in such thoughts as, “I should have said that, instead of...” And when we think about new experiences and what they mean to us, when we tell one another about our weekends, etc., we clothe our thoughts in words and this gives us just what we need to build our memories. Tobias doesn’t do this. His experiences don’t get the help they need to stay in his memory, unless someone else initiates a conversation

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about them. This is one of many reasons that this daily activity is necessary. It creates a natural repetition when we plan and discuss what he did earlier in the day. Most of the people in Tobias’ group have memory problems, so every work session begins with a repetition of what was done in the last meeting. Repetition takes place in the simplest of activities. On Thursdays, for example, Tobias paints. If I ask Tobias on Sunday if he finished his painting, most probably he can’t come up with an answer. When, however, on the following Thursday, he finds that the painting he was working on is almost finished, maybe the next Sunday he will remember it. And that will happen simply because we had discussed it before. Nothing strange about that process, but it is very significant for us. Since we weren’t happy with the contact we had with the rehabilitation center, we have taken it upon ourselves to find Tobias a skilled private neurologist who is willing to listen. The speech therapist is the only person from the rehabilitation center that Tobias still sees. Tobias has, in fact, been requested to come to a follow up appointment, but when I reminded the doctor’s secretary that Tobias has a new neurologist (which they already knew), she couldn’t give us a good reason for the follow up other than that Tobias had been a patient there and that this is how they usually do things. In whose interest is this kind of follow up? How many patients have the nerve to question a doctor’s request that they come in for an appointment? Back to Dalheimer’s House. Tobias has become dependent on keeping track of the days of the week and which activities take place on which day. He is falling into a weekly routine. God bless Dalheimer’s House and the feeling of community there. At Dalheimer's House, no one is normal and no one is abnormal. Tobias is occupied and has an opportunity for growth and development through participating in a variety of scheduled activities. The staff and students have fun. I pray that no economic cutbacks ever affect this heavenly place, with its wonderful staff and students! My first impression of the activity center at Dalheimer’s House was one of surprise. I expected, yet again, to have to explain why my family and I wanted to be involved and to have to advocate for that involvement. I was prepared to meet set routines and rules which would serve only to satisfy the staff’s need for reassurance. But it didn’t turn out that way. On the contrary, the staff were warm and welcoming. I have written a short poem on my thoughts about the first time I came to Dalheimer’s House.

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The Family and Dalheimer’s House Here is a place to be. A welcoming atmosphere. People take up space with wheelchairs shaking mumbling speech bent bodies. At first, I see only obstacles, abnormal varieties of us. After a while, I feel warmth tolerance interest in who you are despite all the obstacles. I am amazed. Soon I don’t see the wheelchairs, the bent bodies the wobbly walking. I see a new world, an example. An example for those of us who believe we have avoided the worst That which we gladly turn our eyes away from our own fear of castration, lost freedom, clarity of thought, IQ, speech. Of fear of not living up to the ideal of those who do not see. Of fear of feeling the anguish of those who see that which we would turn away from.

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Deprived, gifted With senses sharpened from loss. All unique and alive in pain, in happiness, in desperation, together. And I am allowed to participate and be enriched. “LSS”, the Swedish law on support and service to mentally and physically challenged individuals and their families is a necessary one, and it is a blessing. It is because of this law that Tobias’ daily activity at Dalheimer’s House is paid for by state welfare. Another law, LASS, says that if the physically challenged person is in need of a personal assistant for more that 20 hours a week, the Swedish social insurance system will pay for all the hours that are needed. I will talk about that in the next chapter.

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LASS and the Swedish Social Insurance Office It was hellish trying to convince the social insurance agent that Tobias needed so much assistance that they were required to step in and fund it. Of course, the professional employee wrote down all the things Tobias needed help with. But, she only seemed to understand his physical disabilities, for example, his limited ability to use his arms, legs, eyes or ears. When it came to talking about something as abstract as his memory, his lack of ability to plan, his inability to express himself or find words to articulate what he wants, what he needs, etc, she just didn't get it. So she asked for my help. Could I document in writing all of Tobias’ needs so she could use that list as a basis for making a recommendation to the relevant person in the social insurance system? She explained that my ability to express this in writing was better than hers. And fair enough. I am used to expressing myself on medical certificates, treatment summaries, etc. And I am more than happy to help. Unfortunately, she sent her written assessment off to her boss the day before my description reached her in the mail. Then she moved into another room at the office, and my papers disappeared somewhere on the way so she called me to ask if I had another copy. After a while the social insurance office made a decision. It was no. Tobias was better off and more able to manage his daily life than the municipality had assessed him to be. Tobias had currently, at the expense of the municipality and according to the law of LSS, been assessed as needing 100 hours of personal assistance a week. The local government, municipality, has the obligation to pay for up to 20 hrs a week, and if the need exceeds that, it is the social insurance’s responsibility to fund. I asked the employee what she thought I should do if her boss’ recommendation to reject our request went through. Should I continue to try to get the municipality, in other words the local social services, to pay for Tobias’ assistants to the same extent as previously, even though they weren't required to do so by law? Yes, was her answer, and she advised me not to back down. Are you with me? Now, obviously, I couldn’t just accept the recommendation that the Social Insurance Office refuse to pay for Tobias, but both Tore and I have our own businesses, and this being case, it’s not always easy to find a whole day to attend the meeting where the decision will be made, especially since our schedule is often booked far in advance. 116

So we waited to see which one of us could come to the meeting between the Social Welfare Board and the social insurance representatives in which they would come to their final decision. When I called and informed them that Tore could and would be present, they put up a real fight, saying I was the legal guardian, not Tore. And, they said, I should have informed them that we wished “to be heard” immediately after I had received their letter informing me of the meeting time. “To be heard by the board,” that’s what they called it. Now it is too late, said the committeeman, as she wished to be titled despite the fact that she was a woman. But I stood by our demand since nowhere in the report did it say that we had to indicate our desire to be present by a certain date. And the committeeman couldn’t herself find any such wording in the letter, either. However, she sighed, it would be problematic since now they would have to postpone the meeting to a later date. She couldn’t give me an answer as to why our presence demanded a new date, or why our presence would change anything at all. The meeting finally took place a month later. I was able to be present myself. And I was able to meet the social Welfare Board politicians, who welcomed me and listened intently to what I had to say. Very intently actually. It was a warmer welcome than I had seen in a long time, which contributed to my starting to cry. Mostly I cried because I was hearing myself talk about Tobias’ injury and all of its consequences. I could hardly believe what I was saying, and everything I said, I knew was true. I had survived, strong and optimistic, thanks to an ability to isolate what had happened and because I had been able to deal with one difficulty at a time, when all of them at once would have simply undone me. It was too much for the politicians too, and one of them offered me some water and a tissue. One person looked down at the table the entire time. The representatives from the social insurance were able to keep their composure and asked me many critical questions. That was good since their questions helped me show them how wrong it would be to accept a recommendation that would deny Tobias the help he needed. While the tears streamed down my face, I thought, “Oh, no, now these suspicious agents are going to see my tears as a manipulation strategy,” so I blurted out something like, “I hope you don’t mind me crying, this is of course a sensitive issue for me, but I can still keep to the facts, so please continue with your questions”. The strangest thing of all was that, in the information the social 117

insurance had gathered, they had added up all the hours of help Tobias needed during his waking time, and had come to the conclusion that they added up to less than twenty hours a week. Aside from the fact that this was a major underestimation, which didn’t even coincide with what the agent herself had written down during her visit with Tobias, it just wasn’t possible to bunch together all of the minutes and unforeseen tasks during the day that Tobias needed help with to make a lump sum that just happened to coincide with one or more regular work shifts. Even with a minimal understanding of Tobias physical handicap, one would understand that an example of Tobias’ need for help could be something like, “I am thirsty now, but where is a glass?”, “I need milk for my tea, but where do I find it?”, “I am tired, is this nighttime?” or “What is this unease, is it hunger, fatigue or a need to pee?” But maybe it’s not as easy to understand as I think it should be. So now it's January, 1999, and I look forward to improvement. Slow improvement, of course, but nothing, absolutely nothing, indicates that he will stop improving, not for a long time. His vocabulary is constantly getting better, at a pace of about one word a month, and he is also faster at understanding what we say to him. His ability to read has recently gone from recognizing the whole word, with a high risk of being incorrect, to his now trying to read by putting together the letters. Sometimes he succeeds. The biggest challenge right now is identifying the letters. About half of the letters of the alphabet are now stuck in his mind, in his long term memory. Or maybe somewhere else. Tobias sees his own limitations and even shows signs of seeing their implications long term. Maybe someday he will be able to read, and if miracles are possible, maybe even write someday. Maybe in the future he will need his personal assistants less. Of course, he needs these goals so that he can patiently strive to learn all of the things he needs to, despite the fact that it is so painstakingly slow and never comes automatically, as it used to. We can see the positive results that come with mental exercise, and Tobias needs to hear us talk to him about how he is improving. He can also show us and others how things are working out and which improvements he is making. He has made new friends at Dalheimer’s House and the activities there are adjusted on an individual level. I believe it is to his advantage, that during a large part of each day, he doesn’t have to compare himself to people who function “normally”. This must be important! Even someone with a brain injury compares 118

him/herself to others and needs the opportunity to be good at or even best at something. That’s a thought that has never entered my mind before, but my intuition says it can’t be all that great for mentally challenged individuals to be integrated into “normal schools” and other institutions, as is discussed in the Swedish media and politics today. Young people and adults always compare themselves to each other to a certain degree, and want to be the ones who choose how and to what degree they are different from others. The idea that difference creates injustice is one that I don’t think we can eliminate with ideological decisions on morals and values. On the other hand, it should be a right to participate in social activities together with other people who are there only because of their own interest in what is provided, and not because they belong to a certain group or “sphere” of people. It’s about freedom of choice. Discussion Questions When you work with mentally challenged people, who have a brain injury or other instability in their central nervous system, you might have learned that you should simply accept their “handicap”. Individuals and the families of individuals who are born with mental or developmental challenges or whose limitations and challenges are observed from an early age have often learned to accept them. It is a somewhat different story for those who are struck by a loss of intellect after having made it through childhood and adolescence. Motorcycling, biking, skiing and diving accidents are common among young adults. Often those who are affected have already found directions in their lives: school, work, friends and perhaps a boyfriend or girlfriend. They have a social role in life which has become a part of their identity. And this sense of their social role and identity provides a sense of belonging. This sense of identity is intimately attached to such qualities and abilities as reaction speed, creative problem solving, ability to have strong arguments in discussions, shared interests and the ability to communicate easily. All these things demand a whole and efficient brain. Losing part of one’s brain capacity and gaining a “mental or physical handicap because of a brain injury as an adult”, as it is called in the LASS law, means losing a large part of your identity. • Who can deal with such a loss? Could you? • Do you think you would need to be able to deal with such a loss 119

in order to be professional? • Or is empathy to this extent just too heavy to bear? There are no correct answers to these questions, but it is important to be able to talk about them because no one can simply shut his or her eyes and pretend they don’t exist. Simple memory exercises are mentioned above. Everyone who works with mental and physically challenged individuals, be it with rehabilitation, personal assistance, daily activities, support of affected family members, needs to understand how important daily activities are to memory, concentration, verbal facility and anything else which needs to be maintained or exercised. Things that “normal” people do automatically every day, without reflection, are things that you and the person you are working with can make into a interesting and stimulating mental exercise. • Discuss and write down examples of how an everyday situation in your work can be turned into a stimulating mental exercise or can help build memory through practice. • How can you create interest and motivation in your patient? Can you use humor and play in your work? If you are working with a mentally or physically or challenged person, you are probably constantly weighing decisions about whether to help them by doing something for them or by helping them gain the skills they need to perform the task themselves. • Is this usually an easy or difficult choice? • What factors contribute to your decision?

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Two Years and Six Months After the Accident I have cut my hair, ironed, sat at my computer and planned my lectures; everything has been purposeful, yet I am feeling restless, so unbelievably restless that I have to go get myself a cup of coffee, a piece of Swedish hard bread with tomatoes and an almond paste candy pig left over from Christmas. I recognize the symptoms. This is how I feel when something is missing, something I haven’t identified. Had it been twenty years ago, I probably would have eaten the whole almond paste pig. But now I know better, I have to reflect on what is going on. I am missing love. I have love within arms reach, I have a husband I love and who loves me. So what is this? Well, it’s been a vicious circle in the few last weeks. Last weeks?! If I think about it, really think about it, life has been extremely stressful ever since the accident. But right now the feeling of emptiness inside of me seems to be escalating because it’s been a long time since Tore and I have been alone together. Tore is away with work several days a week, and I am dedicated full time to my job. The little time we have free at home, we try to spend with our boys. So we have taken up the parental role again, in our middle age, at the price of not feeling like lovers any more. A sense of two-ness, as we say in Swedish, is something we used to long for during our years with little kids. Just giving each other our time and enjoying each other’s company. Understandably so, since we only had a short time together as lovers before the responsibilities of parenthood took over our lives. During all our years together, despite the responsibilities of work and children, we have managed to find time just for the two of us, and after the most demanding years of having little kids, we always looked forward to “a Sunday in bed” just as Bo Kasper’s Orchestra sings about. But our two-ness hasn’t gotten enough space or attention for the past two and a half years. Sexually charged love and pleasure has taken a back seat to duty and parental love. We have been a work-team and have inspired each other to find the energy to support and help Tobias. He affects us constantly. It’s important to articulate this. Otherwise we become victims of our situation without really realizing how it happened. Now I realize that I need to make a “date” with Tore. Soon. And another, and another...

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And Tobias will understand, when I explain to him that he won’t stay with us all weekend. Discussion Questions Parental love is given priority in our lives and takes over completely after Tobias’ accident, at the price of the erotic love between me and my husband. • Have you seen similar responses in other affected families? • Do parents need to set limits on the portion of their time given to the injured child? • Can you do anything to help the parents recognize that they, their partners and their other children also have needs which must be addressed and that they have also been affected by what has happened? No expert can give a general answer to these questions. Family members have varying abilities and capacities. If it isn’t part of your profession to discuss these issues with family members, it can still be a good idea to show that you are working with these issues and understand that they are important. Find out where family members can find support! In Sweden, for example, the LSS law about support and service is there for the whole family, not just the person who is injured. The municipality you live in should have agents who inform you about the resources available, at least in social services. In municipalities with district government administration, it is the district’s “handicap consultant” who should provide information.

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Complicated Grief We lost a son, and found a new one. I almost feel like I don’t want to completely let go of my old image of Tobias. It feels like it would mean letting him down or abandoning him. I need to cry. I have to grieve completely and then finish grieving for the old Tobias. I think, I don't know. There is a lot we don’t know, but it doesn’t matter, I’ll just have to feel my way forward. Difficult moments, like what happened the other day: The whole family is at home, sitting on the sofa just to spend some time together. I know that Marten has helped Tobias order the audio tape of “The Hitchhiker’s Guide to the Galaxy” from ”The Listening Club”. During the years before the accident, this was kind of a cult book for the men in our family, so the book shouldn’t feel completely foreign for Tobias. But strangely enough, he has decided to throw the tape cover in the garbage. He has a hard time following all the words, so I ask him if he plans on listening to it. “Yes”, he answers, and as usual he chooses the shortest answer possible to avoid getting his words mixed-up. “In what way?” I ask. Tobias answers, “Speak...ss..., no...speaks good...speaks slowly”. “Does he speak slowly so that it’s easy to understand what he is saying?” “Yes...no...don’t know.” Tore comes in from the kitchen, not knowing what we are discussing, but understanding the gist of the conversation: that someone talks well. So Tore asks who it is that talks well. Tobias is slow to answer him. “Is it someone from Dalheimer’s House?” asks Tore. “Don't ask leading questions”, I say, filled with empathy for Tobias’ concentration on the audio book. I know how easy it is for him to lose his train of thought and forget what we were talking about. “No...” says Tore humbly, despite my just accusing him of making things difficult for Tobias, which of course hurts Tore's feelings. “Okay”, says Tore, “Who speaks well?” Tobias thinks. “Listens”, he says after a moment. Had I known how sluggish he was feeling at that moment, I would have jumped in and encouraged him. I 123

would have guessed, “The Listening Club?” But instead, since I think he is thinking clearly, as he sometimes does, I ask provocatively, “Do you mean that the narrator is listening?” Tobias answers, “Yes” decidedly, but distantly, so I want to wake him up. “Do you really mean that the narrator is listening?” “Yes.” “Listens to himself maybe...” I wonder out loud. Tobias has jumped boat a while back, but agrees. I don’t want him to pretend to understand; I want him to be brave enough to admit when he doesn’t understand, so I ask with a an edge in my voice, “Tobias, when you said that he listened, did you mean it or didn’t you understand the words?” “Or”, Tore jumps in, “Do you think Susanna is being a nag and is speaking in a squeaky voice?” (Tore hates it when my voice sounds like that. I know what he hears, he hears my feeling uncomfortable and in his ears it sounds disrespectful and whiny.) Tobias answers, not looking at Tore but straight at me (what great communications skills!) “Nagging – no, discomfort - yes. Everything!” He is silent, but continues after a minute, “Susanna!” he says, pointing at the left side of his head. “Don’t get it, in here.” “You didn’t understand before, because of your injury.” “Yes!” “Okay, thank you, I just wanted to know if you just didn’t want to or if you couldn’t.” “Couldn’t”, says Tobias and looks down. He is struggling with so much. Should I protect him more? No, I haven’t done it before, I have fought to be both realistic and supportive, and at the same time clear in my mind that every step forward demands practice and patience. A family tragedy like ours, creates a situation in which we exchange strong opinions on Tobias’ situation. We are all feeling vulnerable. Just a short while after Tore reacts negatively to my tone and the uneasiness he hears in my voice, I managed to step on his toes during his attempt to try to inspire hope in Tobias’ situation. Enthusiastically, Tore brings up one of his favorite topics, an important well of hope. He has recently read about the latest research on brain matter. They have placed nerve cells in a solution in vitro, where they have begun to grow and then split! Earlier, this was

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believed to be impossible. When the researchers later inserted the cells back into the brain, the cells continued to multiply. This makes the future look good, and may affect Tobias’ own chances of recovery, Tore says, adding that, according to the researcher, this treatment could be available to the public in about five years. I take a critical stand. “This is research that is just in its beginning stages, with a small focus on biology, but in reality... how do the new cells which are injected into the brain know when they are supposed to stop growing? They might just as well grow into a brain tumor?” I continue talking about the risks and side effects of an operation of this type and how there’s no research on that and how I prefer to stimulate the brain using external social and psychological stimulation. I am more attracted by the idea that Tobias should continually exercise his mind and his memory and stimulate his own brain to repair itself or find new pathways of communication to replace the ones which were lost. The recipe involves stimulating his will, endurance, motivation, meaning and lust for life. In this kind of spontaneous response and preference I am very influenced by my profession. And maybe I’m also limited by it, right now I can’t really tell. Marten makes a long analogy, which in the end supports my idea and Tore loses interest. He doesn’t want a critical discussion, he wants to have and give hope. He had been excited by the new research findings which inspire hope, and we have just taken it away from him. I also feel that Tore underestimates his own role and importance as “stimulating medicine”. He means more to Tobias’ hope of improvement than he knows. No laboratory with growing brain matter can compete with the love from family and others. That’s how I feel right now. Maybe I will change my mind if the research continues to develop and the results become clearer, and the treatment proves not to have serious side effects. We haven’t finished grieving. How can you grieve for someone who is alive, who not only makes us worry, but gives us joy, company, care and daily miracles. Not since I was a child have I experienced so many conflicting feelings at the same time. At that time, it was my parents’ unhappy marriage that tore me in pieces because I loved them both and wanted them to love each other so I wouldn’t have to choose between them. But now I have my own identity and my own stable ground to stand on and I recognize which feelings are which. I find it helps me now to know who I am. Family members who are struck by the kind of 125

accident we were struck by who don’t have a really deep sense of themselves must be offered crisis therapy. It is so easy to get lost among mixed feelings of grief, guilt, loss, hope and the feeling of never being and doing enough. You can’t survive this storm of emotion without an ability to reach and recognize your own feelings. Physically, yes, you might survive, but at the price of emotional chaos.

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A New Friend It is easy to overestimate Tobias, since his body language is social and enthusiastic. His facial expressions speak volumes and his eyes convey to you that he understands. At Dalheimer’s House, he has found a friend. A friend with a sense of humor. Tobias exudes love and friendship and his presence is appreciated by many there. His friend Michael often sends him emails, but only receives answers from Tobias when his assistants help him. Michael believes that Tobias can actually talk, write and read, but just doesn’t have the courage. He does everything to encourage him, “You can if you really want to, why are you afraid to write?” So I help Tobias answer in an email and explain Tobias’ handicap. Here are a couple of excerpts from the email exchange, where I explain to Michael that it’s not just about Tobias’ lacking the nerve: The answer to his letter: We’re so happy you are writing to us. Yes, despite the tragedy of losing so much of the old Tobias, we do see enormous steps forward. Slowly but surely. The doctors (at the hospital) said that the first six months were the most important ones for improvement, and after that not much would happen. What actually happened, was that in the first six months all Tobias’ energy was spent healing physically, adjusting himself to the pressure in his brain, learning to urinate, poop, eat, swallow...sleep, rest. It was only after that was accomplished that it became possible to get his brain to understand that it needed to relearn the things which it could do easily before, but which now needed to be directed by other areas of the brain. The natural areas for controlling these tasks simply didn’t exist anymore since they were destroyed or badly damaged in the accident. Possibly there is also a growth of what are called dendrites, which facilitate the process by which nerve cells communicate with one another. But neurologists didn’t count on the idea that lost brain matter can be replaced! But in Tobias’ case, there is no other explanation since the usual language center in his brain, as well as certain other areas which control motor skills, have actually been physically removed. You ask how Tobias was before his accident. As a newborn he was extremely active and curious, either wide awake or sound 127

asleep, which is pretty unusual. Little babies usually doze, half awake. In pre-school, he was energetic and gifted, learned spontaneously just by asking questions. He asked about everything, constantly sucking in new knowledge. He read for his friends at playschool when he was four. He would hold the book upside down while he read, so the other children could see the pictures better. In school, he wasn’t always well liked by his teachers, who preferred children who were more passive, who listened and paid attention. He would have liked a Montessori type of school, where you can test things out and learn in your own way. He was proud and wanted to learn things his way, so his grades never matched his intelligence. He never felt the need to perform in order to feel appreciated, so his grades in high school were also average since he never did his homework and forgot to prepare for his tests. Then he went into the national service (the time all young men have to serve for about a year). He did his “duty” at the artillery company in Borås. The first week was torture, by the weekend he was crying just because we spoke nicely to him. He also wondered if he sounded normal to us since he had only spoken in one syllable answers all week, as ordered. Yet he was and is psychologically a very strong person: once, when he was 18, I told him about a psychological experiment in which they didn’t let people sleep. As soon as they fell asleep, they were immediately woken up. They were paid, but most of the people who were participating broke off the experiment after 48 hours, because they were frightened by the hallucinations. Tobias was curious and went with a friend to Brännö Island when we weren’t there. They took walks and drank coffee to stay awake and after 48 hours his friend started to hallucinate. Tobias had to help him so that he wouldn’t panic. I called them at one point late during their experiment, which I was blissfully unaware of. Tobias answered and was able to hide what happened from me. He had many friends from that period of his life, but most of them rarely call or visit. They probably find it painful to see such a huge change and experience the loss of the Tobias they remember. After his military service, he took a university entrance test and scored 1.8 out of a possible 2.0 points. First he studied English at a Swedish university abroad, where he met the love of his life. Then 128

he continued his studies in Gothenburg, and took a summer job in the paper industry - a horribly boring factory job, he thought. Then on to two semesters of philosophy, fun and interesting, but he didn’t get full credit, because when exam time came around, he was stuck. “I can’t study just to show others what I know. It’s impossible”, he said to me when I wondered why he wasn’t studying for the tests. Then it was on to an information technology program, a four year computer program jointly run by the College of Economics and Chalmers’ University of Technology, which would lead him to a “Master of Science” and a profession. He thought it was all a game, and he didn’t perform much there either, even though he tried harder, probably because his girlfriend wanted to see farther into the future than next week. They stayed together for three years until the long term consequences of the accident became clear. Tobias’ main interests were movies and books. He read by scanning the pages at a record rate. He loved to ski. He wanted to be independent at any cost. Maybe that’s why he was so stubborn about doing his exercises standing up during rehabilitation, once he had heard that they were planning a wheelchair and handicap adjusted apartment for him. I remember how his legs would shake and he would collapse over and over again, but eventually he stood and, in the months from November 1996 to March 1997, he learned to walk with support. Yes, Tobias speaks of you as his friend, and when were in Tenerife, Spain, he missed you and your company at Dalheimer’s. Best wishes, Susanna Hi Michael, thanks for you letter. Yes, Tobias was here when I wrote you. Of course he commented... and he wrote his name. And I read the rest of it to him. Right now he isn’t home. I called him to get him to read his email from you. And Terese M, his assistant, might not be able to help him open it. If he is tired, he can’t remember how to do it himself. Examples of Tobias’ difficulties: When I asked him, “What is an woc?” (He had succeeded in writing cow and then switched them around to woc.) Then he drew a scythe. Is it a water level? He drew a measuring stick. Correct category, but still wrong. Thank God he’s smart, maybe he’ll learn, but God only knows how long it will take! 129

I agree with you: Tobias is funny, thoughtful, kind and beautiful... And not until now did he get his scent back. After the fall of 1996, surrounded by disinfectants every day and taking antibiotics all the time, he lost his own personal scent. But now it’s back. I am myself surprised every time I notice all the things Tobias can’t do. He is able to “talk” to me without words, so to me it feels as if he is using words. It's not until he meets other people that I see he’s not using words and that they don’t understand his looks, which give me images in my mind, which I translate into words myself. Hard as it is to believe, he sends me pictures, mentally. Words which have to do with feelings are sometimes very easy for him to find. “Distasteful,” “bitch,” “basic psychology,” he said them all today. (The bitch wasn’t me.) I don’t know if you know this, but Tobias can’t see anything to the right, can only see things in his left field of vision. That goes for both eyes. So if you stand or sit to his right, he won’t notice you are there. He often bumps into people to his right, and it can be embarrassing. He bumps his right foot and arm a lot too when he walks into things.

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More Setbacks …Or is it just that I am finally waking up? Can it be that I now see what was too difficult to see before? Tobias is mentally handicapped. And not just a little either! People ask us what he does all day. He goes to his activities three hours a day. There he has a social network and gets some physical and mental exercise. Or does he just succeed in maintaining what he has already learned? I am crying now and feel like I no longer know right from left. “What else does he do?” our friends ask us, and they mean well. “What do you mean – what else?!” I want to scream. He tries to remember the names of his assistants, he tries to learn the name of the street he lives on, he learns to look at his calendar to see what is going on during the week, he learns to remember to eat and drink. The other day, he lost his glasses and couldn’t explain to us how he had lost them. Until his assistant told us that he had walked into a pole and had to get them repaired. How do you just walk into a pole? Answer: he has no peripheral vision to the right, so as a result poles are only visible if they are straight in front of him or on his left side. Maybe he has mail to go through – in which case he needs help to see who sent it. If the sender is the “social insurance,” well then what is that? Is it the same as a private accident insurance? No. And the letter from Frösunda Assistance, who is the employer of Tobias’ assistants, who were they again? Tobias gestures with his hand in a sign that means bridge: The place on the other side of the bridge? Yes, Frösunda is located on Hising Island, so he’s on the right track. If he sees a glass of water on the table, he takes a sip, without checking if it is his. If I say that this is my glass and that he can go to the kitchen and get his own glass of water, sometimes he doesn’t have the energy. Then I get irritated because he needs to drink a lot of water since keeping hydrated can keep him from getting epileptic seizures. Emotions take time, sometimes I have to go in another room to cool down, sometimes we need to talk. Marten, who is now both brother and assistant, is just about to help Tobias pay his bills, and since the beginning of this year, I have given up my status as Tobias legal guardian since it is important that Tobias be involved in this process, and it’s also important for him to exercise this part of his brain. His understanding of how to estimate quantities helps him in this: he has a good ability to understand costs.

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Now he has to add, and that’s a little difficult, but he manages. Then he has to sign. Marten says, “signature here”. From the next room I can hear Marten repeat himself a couple of times. Tobias can’t figure out what signature means. So it’s not like we have problems figuring out how to fill his time. Time is something there is never enough of. One day, I called Tobias to ask how his appointment at the speech therapist was. “Good!” he exclaimed convincingly, but when I tried to probe further, it became clear that he hadn’t been there. I then thought that he (and the assistant with him) had missed the appointment, whereupon Tobias became really upset and started yelling nervously, “Damn, Damn!” When I talked to the assistant, it turned out that the speech therapist had changed the appointment to another day. Tobias had misunderstood and thought that he had now missed the new appointment. He also felt bad that he couldn’t just tell me what had happened. After that, Tobias, who was at home at the moment, sat down with his assistant at his computer to go through his email. Tore called on the phone and wanted to hear how things were going. Tobias tried to explain that he was reading three emails, but only managed to get out the words “CD.” Tore didn’t have time to figure it out, something came up at work that demanded his attention and he had to get off the phone. Frustrating. Tobias and his assistant tried to concentrate again, but the doorbell rang and P.O., an old friend was there to visit. Excitement, frustration, too many impressions... I don’t know, but it ended in an epileptic seizure. Luckily, a short one, as they have tended to be during the last six months, but it is hard to see the symptoms of distance and “dementia” that come afterwards and sometimes hang around for several days. On the other hand, Tobias was that way, distant I mean, to a much greater extent when he was taking the epilepsy medicine. And then the seizures lasted ten to twenty minutes. The assistant just called, as I was writing this. She and Tobias are on the way to the speech therapist, but she couldn’t figure out how to get from the street car trolley to the right building. I had taken for granted that if they could get to the right trolley stop, then Tobias would be able to show her how to get to the hospital. But he couldn’t remember how to get there. Despite the fact that we have been there so many times! Maybe I should stop writing. How long am I going to write this book? For the rest of my life? 132

Two Years and Nine Months After the Accident Tobias has accepted that he is handicapped. Accepted is the wrong word. He understands that he is handicapped and he isn’t frustrated by it all the time. And he is in love! The object of his affection is a woman his own age, also mentally impaired following an accident. And she is in love too; this became clear on Saturday. It’s quite a challenge to court someone, when you have forgotten how to do it and can't speak yourself. Tobias’ aphasia is still shockingly bad, he hardly speaks at all. Last week we asked him if he wanted to spend the weekend with us. He was hesitant but couldn’t explain why. Since I knew that he had spent every free moment in the last few weeks thinking about her, I could sympathize with his feeling of wanting to be near her. Coming to our house would make it less likely he would see her during the weekend, which in reality was close to impossible anyway, but in his imagination... Infatuation is a magical thing. So I suggested that we get his assistant to help him invite her over to our house on the weekend. And that’s what happened. She came, she saw, she conquered... Yes, she is charming. They are similar in their limitations. Probably they have more patience for each others’ handicaps than a “normal” partner would have, at least in the long run. She speaks significantly better than Tobias does, but if possible, her memory is even worse. So now they are a couple. I had to act as a translator and help Tobias pose the essential question to her. Tobias lay on his bed, he had snuck away because he was feeling like a seizure might be on the way. When she, Gunilla, understood what was going on she became curious and lay down beside him intent on seeing if the seizure actually would take place. I was out gardening and Tore called me into the house, hoping that I could help Tobias handle a seizure, which appeared to be on its way. So I went into Tobias room to find them both on the bed. Tobias arm was spastic and tense the way it usually is right before a seizure. I explained to Gunilla, after having asked Tobias’ permission, that Tobias had been nervous about seeing her. “He likes you,” I explained, “but he’s unsure how lasting his feelings are and if he wants to take the step of becoming part of a couple”.

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It was quiet for a moment. A thoughtful silence followed which Tobias put to an end to by saying “Yes!” decisively. He looked with certainty at Gunilla. I translated, “Do you mean that you do want to date Gunilla?” “Yes.” “Well, then it’s a question of whether or not she also wants to date you.” Gunilla: “Yes, I do.” His arm was still tense, Tobias sighed and said, “but tense”. I asked if he was nervous about dating. “Yes.” Gunilla responded quickly saying, “You don’t have to be afraid of me. I won’t hurt you”. Whereby Tobias, who knows what he feels says, “But yes”. Gunilla argued, “I’m not dangerous. You can just lie here and feel safe and relaxed.” Tobias almost choked on his laughter. Gunilla continued, “I am not poisonous. Not yet anyway.” Tobias laughed even more. After a moment his right leg started to shake, in other words another step towards a seizure. I asked Tobias how it felt to have Gunilla next to him now. He answered and looked at Gunilla, “Seizure, not you. Leave!” I translated, “You don’t want Gunilla to see a seizure?” “No!” “Do you think it would make Gunilla uncomfortable to see a seizure?”

Tecknare: Isak Eldh, konstnär och personlig assistent

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Drawing by artist and personal assistant, Isak Eldh)

“Yes.” “Yes, it is pretty hard to watch because you look like you’re in a lot of pain.” But I look at Gunilla and explain, “Tobias usually loses consciousness during his seizures, so he doesn’t feel any pain, even if it looks painful when his body twists.” I look at Tobias, “If you are going to date, then sooner or later Gunilla is going to have to see a seizure. Maybe it's just as well that she sees one now?” “Yes.” His leg stopped shaking and there was no seizure. This is exciting to us as parents. The two people in love need help communicating so that they can understand each other. But even without help they can communicate to some extent. They appreciate just being close to each other, and they share an ability to appreciate wittiness. They are both stubborn, almost to the same extent, which might cause some conflicts in the future. I have already noticed that she, probably without knowing it, can sound dominating with her choice of words, which usually irritates Tobias. But to my surprise, he is able to handle it with humor, distance and an ability to say no. It’s not any less wonderful in this context that they spent the whole night kissing, at least according to Tobias, who used this information to explain why he was in such dire need of a nap the next day.

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Two Years and Ten Months After the Accident It is becoming clearer to me that the right side of Tobias’ brain is doing most of the thinking, or maybe even all of it? He has such a hard time finding words. When he spends time with me, face to face, I don’t think about how hard this is for him since we’ve become so used to guessing until we come up with the answer. But on the phone, his aphasia becomes so obvious. Almost three years after the accident, he still can't find the words for what he wants to say. Tobias calls me on the phone. I answer, “Hello, Susanna Carolusson speaking.” “Helloooo.” “Hi Tobias. How are you?” “Good.” “Good. Is there anything you want to say?” “Hmm. Yes...Hmmm...Not today...yesterday.” “Yesterday?” “Yes...Very...Great...No!...Today!...Today...Damn...not there...no...food.” “Did you go out and eat somewhere?” “No, yesterday.” “You mean, yesterday, you went out to eat somewhere?” “Yes!” “Where?” “Uh...” (long silence) “Did you eat at your place, at someone else’s house or at a restaurant?” (I hear the assistant in the background, maybe she is whispering.) “Dalheimer’s.” “At Dalheimer’s. Was it lunch or was it later in the day? Or in the evening?” “Don’t know...three.” “At three? In the afternoon, you mean. Who made the food?”

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“Um... uhhh...Don’t know what it’s called...girl...five, zero...six...zero...” “A woman cooked the food? A woman in her fifties or sixties?” “Yes...And!...Good...I think so...Glasses and...” “The woman who was cooking wears glasses...I don’t know who that is. Is she blond?” “No”. “Do you know what blond means? It means she has light colored hair.” “Yes, yes. But no.” “I’m thinking of Gerd, who lives here on Brännö Island.” “No, no, much older. Glasses...” “Is she part of the staff?” (He has just recently learned the word “staff”.) “Could it be the manager, Ingegerd?” “Yes...think so.” If you ask me, Ingegerd is blond and doesn’t look like she’s over fifty, but we don’t get further in the conversation. I then talk to the assistant to make sure there wasn’t anything else Tobias wanted to convey. He is still seeing Gunilla. They are very much in love and are very gentle with each other when they touch. She doesn’t say much and avoids words so as not to bother her own or other people’s ears with her articulation problems. But since she started dating Tobias, she has started to talk more, with a vocabulary that makes it easy to understand everything she says. However, her memory is even worse than Tobias’. Think that that’s even possible. When they visited us today, I told them how well they compliment each other. She has access to words and he remembers better. She jumped in and quickly summarized, “I do the gabbing, he does the remembering”. She laughs a lot. They are so happy in each other’s company that I wish them so much love and hope that their new relationship lasts for a long, long time. Always. But what do I know about that. Nothing, absolutely nothing. I can already see what will annoy them about the other, but to my surprise and delight, I also see that they have developed a gentle tolerance for each other’s quirks. Tobias looks at Gunilla with such love, that every possible difficulty just seems to fade away. 137

Naturally, there will be other issues that arise in a relationship where the partners are mentally handicapped. Children? What do you need to be able to give your children care, love, help, boundaries, etc? They can’t possibly become parents with all the responsibility it involves. Or can they? Spontaneously, I wish they could have everything in love and life, that a serious physical and mental handicap shouldn’t keep a person from the possibilities of being a parent. At the same time, I can think of endless situations where a child would take advantage of a parent’s handicap and test the boundaries more than a child should have to. Or a child might get confused about what Papa is trying to say? Maybe Tobias would rise to the challenge and grow, but should children have to fill the function of giving their parents a reason to grow? If I myself were to help with the care of a grandchild, how much of my values do I have the right to use in setting boundaries? In the absence of the parent’s ability to set boundaries, I would have to... My thoughts and questions about the future go on and on. And the simple answer is I don't know. I don’t know. Maybe it will work itself out. As most things have done so far. Above and beyond all our expectations, if you look at the extent of the injury he endured. I won’t think about it now. Maybe it will never come up. Tobias let the rest of us think that his love life was perfect, until after a year with Gunilla, when he admitted that he only rarely had an erection and that it only lasted for a moment. After talking to them, I offered to call the National Swedish Association for Sexual Information. There they were impressed that a mother actually took her son’s sexuality seriously. They didn’t have any experience giving advice to mentally challenged people with communications and memory issues, but they made a point of referring us to someone in Uppsala. I mentioned Tobias’ erectile dysfunction to his neurologist. Since Tobias had started taking a new medicine for his epilepsy; perhaps this was a side effect? The neurologist seemed to think the whole thing was what they call a “luxury problem” and didn’t have any answers. But I understood clearly that he thought the medicine was more important than Tobias’ sex life. Tobias and Gunilla weren’t complaining either; instead, they seemed so calm and satisfied with where they were in their love life, that I decided not to follow up at that time.

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Discussion Questions Love and handicap. It is so easy to take the stand point, the “politically correct” attitude, that everyone has a right to love, even sexual love. Having a serious mental handicap means that two problems arise in any sexual exchange: The first obstacle relates to the lack of ability to plan one’s actions. In an ideal human sexual encounter, you spend time giving each other pleasure, and you can tell which signs mean that you are in harmony with one other and can see how the other person wants to be stimulated. You remember from one time to the next how your partner reacts and therefore the sexual relationship can develop and improve steadily over time. Obstacle number two: Having been a fully healthy adult in a steady relationship probably means that you still have some memory of having a sexual relationship. It can be humiliating to no longer be able to function as expected. In addition, as a result, defense mechanisms switch on, which both protects one’s sense of self and impedes further development. • Who among the injured person’s social network is the right person to determine if some sort of sexual counseling is needed? • How do you give advice to someone who lacks a good memory and won’t be able to remember the advice once he (or she) finds himself in a situation where it is needed? We all have an idea about what constitutes “good sex”. Maybe mentally challenged people have moderate expectations? Maybe the tension that leads to orgasm is too stressful for an epileptic? And perhaps erectile dysfunction is simply a solution to an unconscious precaution? • What are your experiences of mentally challenged people and their counseling needs in relation to their sexuality? • What right do you have to ask questions about this as a professional or family member? • How can you bring up the topic tactfully and with respect for someone’s privacy?

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What’s Happening – Two Years Back! Now it’s been almost three years since the accident. Tobias has been free of his medicine for a little over six months, but the neurologist doesn’t feel we should be satisfied with just having short seizures. Tobias shouldn’t be having any seizures, he says. And we could also see the advantages of trying out at least one other kind of medicine to see if it would help. Up until now Tobias has really been limited in what he does. If it weren’t for fear of having a seizure, on a good day he would be able to experiment with riding the trolley without an assistant. So Tobias has started taking a daily dose of an epilepsy medicine called Lamotrigin. He’s only halfway up to the lowest “therapeutic” dose, which is 2 x 50 mg per day. But now we notice symptoms, which remind us of how he was two years ago, before he stopped taking the other medicine, Carbamazepin. I don’t want to jump to conclusions and say it is the medicine, but there may be a correlation. Tore sees it, Marten sees it and the assistants see it. A sluggishness and sleepiness that we haven’t see for a couple of years and which we had almost been able to forget. For example, Tobias can simply stare at us, not understanding what we are saying. Without a question in his eyes, which would invite us to communication, but with an emptiness and a distant expression that says absolutely nothing. It’s not fun at all to be looked at with a look that doesn’t see. His pupils are just like they were then, somewhat larger than what I perceive to be natural. Even the right side of his face is more paralyzed than it has been for a long time. And to top it off, it seems he has had a more intensive epileptic seizure than he had had in a long time. We can only guess because the seizure took place during the night. One morning, earlier in the week, on Wednesday, June 30, to be exact, Tobias was unusually slow when his assistant came. In the beginning, she didn’t particularly notice it, but then she saw that his bottom lip was swollen. He had bitten himself, which is often the case when he has a seizure, as a reflex. The assistant went to have a look at the bed and found Tobias sheets were wet. On the floor next to the bed was a wet puddle of blood and saliva. The whole day consisted of nothing more than just existing and hardly that. The next day, Marten was the assistant and he was of course depressed because when he arrived in the morning, he found

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Tobias in two t-shirts, staring out into space with an empty look in his eyes. He hadn’t even pulled up the shades. Later, when they were both sitting and watching TV, Tobias looked at the TV without seeing and didn’t care about turning up the volume, which was at a level which was hardly audible. “I haven’t seen him like this for two years,” Marten said on the phone that evening. We are depressed. On Friday, Tobias comes to visit us with his assistant, Isak. In the evening some close friends drop by. They ask how long Dalheimer’s House is closed for the holiday and I get Tobias’ calendar and encourage him to find where we have made a note of this. He can usually recognize the words that the assistants have written in. However, now he just flips through the pages, and can’t understand my question. I see now that he has a bruise on his left temple, clearly the cramping from the seizure caused his head to bump something. Could it be that he has had a concussion? Yes, of course, that is a possibility. On Saturday, it’s Amnesty Day on Brännö Island -- local tradition that involves lotteries and sophisticated musical entertainment. Tobias, Gunilla and his assistant Hanna, all go. I go out for a run and on my way back home pass by Ersdal, where the Amnesty celebration is taking place. It’s on a big open field, between the water and the woods. Several small streams run through the area, and the paths to the field are narrow. Tobias and Gunilla are sitting on a bench. I walk towards them. Tobias looks blindly at me. I ask him if he recognized me, if I somehow looked different right now? He looks at me, draws a ring in the air with his finger, points to his left temple and says, “brain.” “Something going on with your brain?” He nods and tries, but can’t explain. The music is loud too, so it seems impossible to communicate right now. Tobias wants to go home to use the bathroom. The reason we don’t try to find a bathroom here is because the ground is uneven and Tobias suddenly loses the use of his right foot. Hanna and I confirmed earlier in the day that the orthopedic insert in his shoe didn’t actually provide any support. Tobias foot turned outwards despite the special support. Using the insert meant that his foot didn’t get all the way down in the shoe so it couldn’t get the support it needed. So we quite simply took out the insert with the result that he walked as badly with his right foot as he did two years ago before he started using his orthopedic inserts. So stupid of us!

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Now we’re on our way home, but we’re not getting anywhere, because his foot refuses to lie flat. Imagine that you have a sprained foot and it’s turned completely inward. Then try to walk on the outside of that foot. We need a taxi, but it’s a hundred meters to the closest road. Who comes to our rescue if not the island’s most witty author, composer and singer. Well, there are actually other musicians who live on our island, but right now, Henrik Wallgren is our favorite. He picks up the 75 kilo heavy and 184 cm tall Tobias and carries him through the rough terrain, over the path until we reach the road. I can see that Henrik’s body begs to collapse beneath Tobias’ weight, but his head is steady and his eyes are focused on his destination. And is this really something worth writing about? There are, of course, more impressive exploits! Heroes who carry their comrades in fiery wars, not just a 100 meters, but several kilometers! And yes, it is worth writing about, because it is the same thing, the same attitude. Henrik was just about to prepare for his entrance onto the stage, where he was about to sing. Many people in this situation would have been totally absorbed in their own concentration and focused on themselves --not to be bothered by a handicapped neighbor. But Henrik shows us that he lives as he preaches. His songs are about people who help or don’t help. And sometimes he writes about not helping at all, but then he’s being sarcastic, while he’s proven to us something quite different – his essential generosity. Anyway, enough about that. When we get home, Tobias looks at me for a long time. We are alone and I take the opportunity to ask again, “What is going on? Are you angry with me?” “No.” But I feel like he really is angry with me, or at least annoyed. “Tell me how you feel, even it you don’t have a reason for why you feel that way. Are you annoyed me?” “Yes.” He can’t explain. “Is it something that I have said or done?” “Yes.” Tobias can’t explain any more than that and I get the feeling that it is a little diffuse. I recognize this feeling from a little over two years ago, when Tobias started to recognize his limitations, was angry and depressed and used me as a screen to project his feelings on to. “Is it because I am your Mother?”

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“Mother yes, but no. I, brain. You too,” he says and points first at his head and then at mine. Does he mean that he attributes me his thoughts – through projection? It’s so insightful, but can you really understand that you are projecting your thoughts if your brain is damaged? Maybe I should explain the term projection. Projection is a defense mechanism used when your own feelings and thoughts become unbearably strong. As a result, you assign the experiences you can't handle as pertaining to someone else, often someone close to you. Yes, the evening continues in the same desolate climate. Tobias doesn’t understand what we say and looks most of the time like he is trying to find stratagems to conceal this fact. That is, he is continuing to ignore the speaker. Saliva runs down the right side of his mouth, and he doesn’t even notice. Tore and I exchange glances, and silently agree to leave him alone. The whole family except for me is watching a movie. I am sitting at the computer writing this. Suddenly there is a knock at the door to my room. Tore says, “Tobias wants to say something to you.” Tobias comes in glowing and says, “Free!” “What?” “Free.” “You feel free?” “Yes, perfect!” I ask if he is still angry with me. He isn’t and he even succeeds in communicating that he was actually angry with himself with the words “Not you, me. Angry at me”. “1.8”, he says a minute later, referring to the score of 1.8 he got on the university entrance tests, which he took years ago. He spends the next hour ecstatic, gesturing, wanting to share his transformation. “Finished”, he says, smiling with his whole face and not only half of it the way he did only an hour ago. He puts his arm around Gunilla, and his arms are glowing along with the rest of his body, hair and surely even his toes, though we don't see them. What happened? Has a new connection established itself in his brain? A manic depressive development? God only knows, but I exclude the latter because I can see that this happiness is deep and intensive and lacks the shallow superficiality and hurriedness that usually characterizes a pathological mania. A manic would surely protest that their mania is experienced as both deep and intensive.

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Maybe it is the diagnostic terms that are used to describe the illness which are superficial and not the phenomenon they describe. Maybe this actually is a form of mania. Before he goes to bed, Tobias looks at our film screen and searches with his eyes for the source of the film, which turns out to be a projector on the opposite wall. He scans the projector, looks at Tore and informs us, “Thinking,” he says about himself. Discussion Questions Brain damage can express itself in so many different ways. There is no doubt that a stroke, head trauma, and lack of oxygen create physical injuries and symptoms. But maybe we are too quick to draw conclusions about what psychological symptoms they cause in the brain. Losing body parts and/or important bodily functions, work and friends, the ability to read and write as well as independence and freedom... Losing all this for an indefinite amount of time, perhaps even forever, would naturally cause psychological symptoms in anyone, with or without a brain injury. The fact that Tobias is missing the use of his left brain and its logical function is a circumstance that makes Tobias’ situation even more difficult and leaves him even more exposed to his turbulent emotions. Can his reactions be explained as psychological reactions to an unbearable situation, or is this situation simply too difficult and painful for us to imagine? Understanding Tobias’ manic reactions and his turning himself off and distancing himself as a defense against anxiety, demands a frightfully strong empathetic ability. • What do you think about Tobias’manic behavior? Is it the result of a chemical imbalance in his injured brain, or is it a psychological reaction to an unbearable reality, or a combination of the two?

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And What about Deodorant? The next morning arrives with the light of hope. Is the change/confusion still there? Tobias takes a shower at my suggestion. He gets out of the shower, dries himself off and goes to get dressed. I ask if he has put on his deodorant. His answer is negative. But he stays in his room. I go in and repeat the question. Tobias says a hesitant no and then a more sure “Yes”. “Are you trying to trick me? You can trick me if you want to, but you’re the one who is going to smell”. Tobias goes to the bathroom. “You have to dry your armpits before you put on the deodorant.” Tobias looks around the bathroom. I repeat, “You have to dry your armpits...” Tobias picks up the deodorant and puts it down again. “Can you hear what I am saying?” I ask in a friendly tone. “No.” “Listen carefully. Your armpits are wet. Do you know how to dry them?” Tobias looks over at the shelves, searching for an answer to a question he seemingly doesn’t understand. I try again, “When you get out of the shower and are all wet (I do some charade gestures too) – what do you do to get rid of all the water on your body?” Tobias shows no sign of having understood. I repeat the question. Tobias looks at me inquisitively. “What do you use to dry off?” Searches around the bathroom. I point to the towel. “What is that?” “Towel.” “What do you do with a towel?” “Dry.” “What do you use to dry off?” “Towel.” “Yes, here you go, go ahead.” I walk over to him to help him and smell the faint scent of armpit sweat. “Smells like you didn’t use soap today.” ”Yes.”

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“No, you didn’t. Get into the shower and wash your armpits with soap.” “Okay.” Tobias gets into the shower. After a moment, I take a look. He is standing with the shower pointed at his neck, like he used to do when he was worse, when he couldn’t think of anything else to do. “What were you going to do?” He points to his hair. “No, you were going to wash your armpits.” I point just to make sure he understands. I ask him to get the soap. He gets the brush. “No, the soap.” He gets the shampoo. “No the soap is there, next to it.” “Oh.” Right. Because I am extremely unsure of his memory and his ability to concentrate, I add, “Under your arms.” I walk out. He needs a chance to succeed. I hear him leave the bathroom and go into his room. “Tobias, how did it go with the deodorant?” “Yes.” I see soap in his armpits. “Oh my, you forgot to wash off the soap. Get back in the shower!” Poor Tobias walks obediently back into the bathroom and gets back into the shower. He turns on the shower and lets it wash over his neck. He stands there a few minutes until I remind him that he was going to wash the soap out of his armpits. While he’s drying off I ask if he can remember to put on the deodorant. “Yes.” “Promise? You’ll put on the deodorant?” “Yes.” I hear him, all too quickly, walk back into his room and stubborn as a mule, I follow him and ask if he remembered to put on his deodorant.” “No.” We're back. The deodorant is on the counter, but he doesn’t see it. I help him dry his armpits and point to the deodorant. And he does it. Now I am sitting here writing. I have to get rid of this, get it out of my body. I cry. But I shouldn't. I think about our old neighbor, who was also the victim of a similar tragedy. I think about their son who is still lying in bed and can’t communicate. Tobias can at least walk around with us, and he is still here. 146

I have asked him to put cereal and sandwich food on the table for breakfast. He can usually do this fairly well. He opens the cabinets and sees the things we need. He can usually see that the cheese cutter is missing, when he sees the cheese on the table. Now I have told him that he can take as much time as he needs to make sure he gets everything on the table. I can’t hear him. I hear none of the familiar sounds from the kitchen. He has probably forgotten what he was going to do. Tobias is sitting on the sofa. “Why are you sitting here, you were going to put breakfast on the table?” Tobias looks embarrassed, he laughs slightly and walks towards the kitchen. He has taken a few things out of the fridge. I go to help him. I haven’t seen him like this for a long time. At least a year, No. More, much more. Is it because of the medicine or because of his seizure? Did he get a concussion from it? A trip to the doctor won’t tell us, so we just have to wait and see what answer the future will give us. Or an improvement. Please God. Gunilla calls out to me. She is wondering if I want her to help make the beds. I thank her for offering and while we are chatting, Tobias comes over to me and starts to cry. I haven’t seen him cry since we saw the Riverdance show and then his crying was a silent shaking which only lasted a couple of minutes. Now he cries for at least an hour. The kind of tears that seem never ending. Between his tears he lifts his arm towards us and says, “Thank you”. Over and over again. He is as sensitive as a new mother who has just given birth. That’s the only reference I have from my own experience as to how to explain it. Or the tears I cried after getting a concussion once. Those tears were also intractable, irrational and intensive. Yes, that’s it. He radiates strong emotions and happiness and breaks over and over into loud fits of crying. And it is loud. Gunilla has never seen anything like it. I have to calm her down too, so that she understands that she doesn’t need to be afraid of these strong expressions of emotion. Discussion Questions Of course, we always hope that the people we are involved with, either privately or professionally, who are sick or injured will improve and will continue to improve.

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In the previous chapter, I describe an obvious deterioration. • How do you handle such a deterioration? • Is there a difference between the emotions you feel and those that you show to others? • How do you feel about the dialogue on hygiene that Tobias and I had?

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To Have a Handicap or to be Handicapped I am working from home today. I told my secretary that I am only taking calls during telephone hours so I can concentrate and stay on schedule. I feel frustrated this fall since my plan was to write this book, and it always ends up on the bottom of my list of priorities. That is to say, that the business I run with Tore always comes first. Even though I really want to write. The telephone rings and my secretary Maud says, “Sorry, but I thought you’d want to accept a call from Tobias”. “Yes, of course”, I say. I’ll write the whole conversation and put my explanations in parenthesis, so you can understand everything, even if you aren’t used to Tobias’ way of talking. “Hiii.” “Hi Tobias, how are things?” “Uhh...a lot. Everything now, so much!” “Your whole situation? Do you have a lot to think about?” “All the time...One, two, three, four, five.” (Five can mean the number of assistants he has, which is actually six, but I give it a try.) “Do you mean your six assistants?” “Yes.” “Is that too many?” “Yes.” “Do you think so? Yes...funny, Tore and I thought the opposite, that it’s good that there are so many since you won’t get tired of them...you get some variety.” “Everyone away!” “You mean everyone? I mean Joel, Terese...are you having a hard time with every single one? Or just with one?” “Everyone.” “Do you mean that you don’t need assistants?” “That’s right. Always.” “You think that you can do without assistants forever?” “Yes.”

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“I can’t say that I agree with that. There is a risk that you would just sit and watch TV the whole time.” “There is a lot you need help with. If someone calls you and wants to change an appointment, you might have a hard time remembering it, or might not be able to write it down so you can go back and understand what you have written. When you were with us last weekend, you were wearing a t-shirt and a raincoat. It was really cold out and you already had a cold.” “No.” “You mean you’ll be okay?” “Yes.” “That’s a little childish.” “Childish???” “Yes, children think like that – I’ll be okay, don’t need any clothes even though it’s cold out. And you’re thinking that way, like a child. That’s why I say childish.” “Yeees...Susanna! You’re just great!” “I am??” “No!” I laugh long and hard. When I finish Tobias says: “But Tore!” “You mean that Tore is great?” “Yes.” “He also thinks that you need your assistants.” “Oh. Damn...But, year.” “Do you mean that in a couple of years you’ll be able to manage better?” “One.” “One year? Then you’ll be able to manage without assistants?” “Yes.” “Yes, you will be able to manage better than you can today.” “Everything.” “You have assistants for a hundred hours a week. You can’t just

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wake up one day and say that you can do without them completely. But you can start to work on it. Your assistant can pretend she isn’t there. And she can help you only when you absolutely need help.” (In all practicality, that’s what they do today, but Tobias isn’t aware of it, can’t stand to be aware of it.) “Who do you have today?” “Oresten.” “I'm sure you can talk to her about it.” “Yes?” “Yes, she won’t take it personally.” (I know Tobias doesn’t want to hurt anyone’s feelings.) “She’s your age and wouldn’t like being dependent on assistants either. She’ll understand...Can I talk to her now and tell her?” “Yes.” “Before I talk to her, I want to describe to you how I think you feel. You’re having a hard time. You want to be healthy. I see an enormous step forward: Now you are a person. You really are Tobias with lots of thoughts and feelings that you can’t express, because you have a brain injury that’s stopping you.” “Yes.” “I am going to emphasize that you have a brain injury. Because before, you were your brain injury. Your entire self was affected and restrained by your injury. The injury affected the way you thought and felt, every aspect of your personality. You were your brain injury. Now, you’re Tobias, who thinks and feels, but can’t express your feelings or get out what you want to say. You have an injury that gives you problems when you speak, write and try to remember.” “Yes. Thank you!” “Right now you only talk to Mårten and me about this kind of trouble. I’ve said it before, but I will say it again: If you want to speak to someone outside the family, you have the right to see a psychologist without it costing anything.” (I think: I don't want him to feel like I am rejecting him or that I don’t have the energy to help him.) “If you want to…. Does it feel like you want to?” “No.” “You can also, of course, talk to us, we appreciate your trust in us, but we want you to know that we wouldn’t feel hurt if you would rather speak to a psychologist.”

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I feel drained by the conversation. I feel emotional, tired and yet at the same time filled with a sense of the quality of my life. Every pore of mine opens when I listen to Tobias. I become just as I was after giving birth, capable of telepathy, if needed. Just afterwards, Tore calls. I have similar emotions as I give him a synopsis of the conversation. I explain that what I think is happening is that Tobias feels healthy and rehabilitated in his experience, but has a hard time accepting his factual disability. Right on target Tore states that this might mean that Tobias is heading for a depression. I agree, but get the feeling that Tore sounds negative or clinically dry, which conforms to my idea of the word depression, so I add that I think what is happening is a process in his development and therefore positive. Our communication stops there. Tore feels I am underestimating him and states that this development may well be positive, but that it isn’t only positive. Tobias has his injury and it is upsetting, and yes, negative. It isn’t only positive, he says, not to inform me because he knows I already know, but to point out that he also understands. I want to go visit Tobias now, talk to him, listen to him, comfort him. That’s what Tore wants to do too, though he’s in Stockholm, even farther away.

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Social Surveillance One Friday night, Tobias is at home with us. We live on an island, Brännö, without a bridge to the mainland. There are about 700 people who live here permanently. That’s few enough so just about everybody knows everything about everyone. Or at least has an easy time finding things out if they want to know. The telephone rings. Tobias answers right away, without hesitating. We look gratefully at each other since it is gratifying that he is so sure of himself, despite his speech problems. We hear Tobias say, “Hello...Yes...Oh, yess!...Thank you! Thank you!...Yes, yess!...Thank you.” He hangs up. His wallet. Tobias lost his wallet. And, of course, we had no idea. We didn’t look through all his bags and pockets when he arrived to make sure he had everything with him when he came an hour ago. We were so happy that he managed to come alone and had left his assistant on the quay and entered the boat by himself. His wallet was found on a seat on the passenger boat and someone had turned it in to the deck officer. And of course someone else on the boat had recognized our last name, so the man officer had no trouble finding our telephone number. Sometimes people ask us what it’s like living on an island, where everyone knows everyone and the so-called “social surveillance” or peer pressure limits what you can do anonymously. Our island is big enough so the topics that are the subject of gossip change quickly, and the gossip is usually intended only to start harmless conversations rather than meddle in other people’s affairs. I was just about to write that the gossip never fell upon me, but it probably has, without my knowledge. Still, I appreciate the advantages of this social surveillance – on our island there are a lot of people who care. If Tobias had left his wallet on the mainland trolley, he would most likely never have seen it again! Discussion Questions In a difficult situation, it helps to not only draw attention to the problem, but also to acknowledge the good things that come with it, such as having access to resources or support that not everyone is fortunate enough to have. • Think about someone you know or work with who has lost a lot and has huge difficulties – what resources are available to that 153

person in spite of the tragedy? • What does this person have in his/her immediate surroundings which could be an advantage, even if it is only a slight advantage? • Think about the difficulties and losses you have had in your own life – in your misery, what resources were you lucky to have had, and what did you learn from these hard times?

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Self Examination People sometimes ask me how this affects me and the rest of my family. This is an impossible question to answer. My writing this is an attempt though. How the accident affects us depends on which perspective we choose. Maybe it is possible to choose a merciful perspective. Positive thinking? No, feelings refuse to be steered, but the more you can accept them, the healthier they are. Sometimes I feel happiness, sometimes despair. It has to be that way, it’s real. With time, perspective will be widened, if you don’t hide from your feelings. I have realized that we humans, not the least of all myself, are all limited by our idea of what a normal life is. A brain injury is an abnormal catastrophe. This limitation might be natural; maybe it is normal to take what we believe to be normal for granted. “What do you want to be when you grow up?” is a normal question we all ask children. We take for granted that the child will be something more than they already are and that they will indeed grow up. That’s why I am reluctant to tell young parents about Tobias’ accident. They have their dreams and hopes for a good future for their children. It’s like a law of nature. Dreams of a good future and a happy life are what drive us to try to be good parents and to enjoy our children’s curiosity, appetite for life, openness, and trust in the future.

Young parents must be able to enjoy their children's curiosity, appetite for life, and openness.

Tobias only remembers that he felt safe. We take for granted that children will be more than they are today and that they will indeed grow up.)

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Our children gradually experience the frustration which comes with realizing that we, as parents, can’t save them from life’s normal setbacks and disappointments. Slowly and painfully, they learn that their parents lack the greatness, strength and power to solve all their problems and difficulties. That loss of faith is hard for everyone. If, in addition, the parents are fully aware of their own powerlessness and of their helplessness in facing the whims of fate, they might lose their positive view of the future as well as their trust in the meaning of their goals and dreams. Could it be that we need to believe that the future is somewhat predictable? Or, if not entirely so, then at least to some extent? While I write this, I realize that it really doesn’t matter what the future holds in its womb. It is nonetheless entirely meaningful that we give our children all the love we can and that we set boundaries for them, which is what I see as the essence of good parenting. Whatever may happen later, whatever accidents they are struck by, if we do that, they will carry with them an inner strength that supports them even if they stop being able to express themselves. Did we give Tobias that kind of strength? The accident has made us re-examine ourselves as parents. My study of psychology and above all the therapy I went through towards the end of my time at the university have contributed to my own process of self examination. Another reason I have spent a fair amount of time thinking about views and values, is that Tore and I have grown up under very different circumstances and had a hard time agreeing on how to raise our children. And, like most of us born around the 1950’s, we seriously questioned our parent’s ambitions to raise us as well adjusted, obedient members of society. It is not that our own children were lacking in upbringing, but rather that we wanted to find our own way of being parents. Thus, we forced ourselves to continuously ask the question, “What do we believe in, and what kind of consequences will those beliefs have?” I was young when Tobias was born, barely 21, and while I was somewhat mature for my age, at the same time I lacked

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Is it true that we need to believe that our futures are somewhat predictable? Or, if not completely true, then true to some extent?

experience. Looking back, I know that I made unreasonable demands on myself as a parent and as a role model. I wasn’t mature enough to realize that empathy and motherly intuition will take you a long way and prove to be a far better compass than theories. On the other hand, what did my intuition consist of? Surely it was infiltrated with my earliest experiences, wrapped up in physical memories without words, ready to guide me in every unplanned situation. And how many new situations are planned in a young parent’s life? Which were my earliest memories? I lay in an incubator during the first month of my life; what did I learn from that? Perhaps I learned not to depend on a reliable, available caregiver, who would come when I needed contact? At least that’s what my unconscious told me during my therapy sessions. But by the time I had understood this and had gotten help for this and other things, Tobias was already twelve years old. Looking back, I see that in my rush not to repeat history, I did just that. And with motives I thought were rational. I wanted to raise Tobias so that he wouldn’t be clingy, whiny, demanding and spoiled. I had never been that way and I was proud of it. I had even succeeded in denying that it is sometimes normal for kids to be exactly this way. So I followed my newly acquired knowledge of psychology and the power of positive reinforcement; that is, that rewarding behavior reinforces that behavior and ignoring it tends to have the opposite effect. In this theory, children, like pigeons and mice who have shown researchers how reliable these methods are, are seen as machines without souls. When I decided to lift Tobias out of the bed to hug him, feed him and give him attention, without paying too much attention to his cries, I thought I was raising him so that he wouldn’t become “spoiled”. At an early age, I was an independent person, and my earliest memories include mostly settings, mama – papa and a bad mood around them, phenomena I observed without really participating in. But you hardly need to be a psychologist to interpret that kind of memory. At 21, although I didn’t understand my own unconscious driving forces, I adapted a theory that deprived my child of the pleasure of having free access to closeness, love and care. I really thought I was doing something different from both my parents and parents-in-law, and that Tore and I were making an independent choice in our approach. Now I see that we were repeatedly depriving our child of the chance to fulfill his needs for our love and attention. We were both 157

pretty independent and were unconsciously afraid of our young child’s enormously strong dependence on us. Sometimes I wonder about our own guilt in the accident. Not so that I feel remorse and am weighed down by my feelings of guilt, but because I know I love Tobias strongly and devoutly. As a young mother, I did the best I could with the little experience, insight, maturity and ability I had at the time. I had discussed my understanding of my deficiencies as a parent with Tobias, long before the accident, hoping to give us a chance to repair what was damaged. He remembers only that he felt safe. But I also know that sometimes people deny fear. So I don’t want to close my eyes to the possibility that there is a connection. Maybe we taught Tobias from his earliest infancy that he cannot affect the world? That his cries don’t have any result and that pleasurable contact with those he needed most (us) were offered when he least expected them? And yet, he was a cheerful, happy baby, a bubbling ray of sunshine! He did get loads of love and became a secure, stable, angry and happy person with a strong self confidence, but one thing was missing -- a sense of personal goals and the ambition to affect other people. Maybe we taught him early on that he can’t affect us who were around him. Maybe it helped only marginally that we tried to repair this injury several years later after we had become more stable and calmer ourselves? A ray of sunshine who can’t affect things around him might just throw himself down a hill without a helmet, without fear, challenging death itself.

A satisfied ray of sunshine with plenty of self confidence. A Fearless 22 Year Old in the Alps.

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Discussion Questions In the section above, I present the view that it is important to acknowledge our own limitations as parents. I think that many parents tend to deny their own mistakes in the event of a confrontation. Or maybe parents always ask themselves what mistakes they have made, whether or not they acknowledge these feelings to the rest of us. And those who are most pained by their feelings of inadequacy may be those who defend themselves the hardest, spitting out such phrases as, “Don't get stuck in the past”. Or, “you can't change the past -- you’re better off focusing on things you can do something about”. If you truly believe, on the inside, that you have been such a bad or even harmful parent that forgiveness is impossible, you might not be able to bear to acknowledge what you know and remember. Maybe you don’t dare to make yourself vulnerable to the risk of being rejected by your children and receiving yet another blow to your own self confidence. Those parents who feel that they have always wanted the best for their children, but because of ignorance or other reasons, have not been able to show this in the best way, may dare to hope that some form of reconciliation with the past is possible. Maybe it is these parents who have enough energy to acknowledge their own shortcomings. It’s only when you have accepted your own parental guilt that you can be able to feel that reparation is possible. • Where do the boundaries go between heavy feelings of inadequacy as a parent and admission of mistakes? • Where do the boundaries go in work relationships between feelings of inadequacy and admission of mistakes?

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Yet Another Setback – Who has the energy to read this? It is a tepid week in November, 1999. It’s record warm for November, so I feel good, whereas I usually feel usually frozen at this time of year. One morning in the middle of the week, I speak to Mårten who tells me that Tobias has had a seizure in the middle of the night. He has wet the bed, which is now soaking and Mårten wants to know what to do about it. Obviously, he’s just as capable in making that decision as I am, but I guess it helps just to be able to discuss it with someone. Tobias has been free of his seizures for three weeks now and had made enormous progress, so Mårten is feeling depressed about the effects of the seizure. Tobias’ whole day is filled with confusion and sluggishness. He doesn’t understand the most simple instructions, spills his tea and searches for the easiest, most accessible “rag” to clean it up -- which just happens to be the remote control to the TV. It’s not a pretty picture to see Tobias try to dry the table with the remote. It’s Wednesday. On Thursday, Therese O. is working as his assistant. She and Tobias go to Dalheimer’s House, but Tobias quickly realizes that he wants to go home. Presumably, he notices that he can’t manage to do his reading work on the computer, which is what he usually does on Thursdays. The assistant then calls and cancels Friday’s exercise program since it doesn’t seem likely that Tobias will have the energy to listen to any instructions this week. He is confused and is having problems concentrating. On Thursday evening, Mårten experiences for the first time since the fateful day of the accident, August 2, 1996, how it feels not to be appreciated by Tobias. Mårten has always been Tobias’ favorite person. But now Tobias wants Mårten to go home. Mårten refuses because he is seeing a new and somewhat worrisome side of Tobias and because Tobias seems extremely disoriented in both time and space. Mårten tries to get in touch with me all Thursday morning, but I’m away at a seminar in another town, so he can’t reach me. On Friday, I am sitting in my office, preparing a lecture for a group of consultants that will take place at the university the next day, All Saint’s Day of all days. I am excited about it; consultants from all over the country are coming to attend a series of meetings. They are attending my seminar on their day off, a holiday, because normally these business people are too busy to study on week days. Mårten shows up to do his daily accounting work for our company while I am in the middle of my

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planning. But he wants to talk before he turns on the computer. Isak, Tobias’ assistant today, has just called Mårten from home and said that Tobias absolutely insists on being left alone. He didn’t want Isak there. Period. This doesn’t feel right. We don’t know how aware or confused Tobias is today; maybe he’s depressed and needs our help? “I’m going over there this afternoon”, I tell Mårten. “Do you think you can go now?” Mårten asks, more worried about his brother than I am. I take a look at my schedule. I am supposed to meet with a colleague to provide guidance on a case, but when I call, he says he doesn’t have it in his calendar. What luck! I take my car, my keys and my wallet and drive over to see to Tobias. When I get there, I realize I have forgotten to bring Tobias’ key, but I keep my fingers crossed that he is capable of understanding the sound of the doorbell and can act appropriately. No one opens the door. I press the doorbell a couple of times. No one seems to hear. Worrying. My imagination is running away with me and I find myself preparing for the worst. When I go around to the back of the house, where Tobias’ ground floor balcony opens up, I imagine he has had a bad seizure and bumped his head. Or that his new, more aggressive tendencies have led him to turn on himself and he has just attempted suicide. The balcony door is slightly open! The handle is in the locked position, but I can easily put my hand in and open it from the inside. I knock and call out, but get no answer. I check the bedroom first, then the kitchen, and after that the hall. The bathroom door is closed, and I have visions of what I might see when I open the door. All this imagining serve an unconscious purpose, that, whatever happens, I won’t be shocked but instead will be able to act rationally. No one there either. Tobias’ coat is hanging in the hall, his thick sweaters too. Jeans and a sweater are on the floor next to the bed. I go to the front door. Mårten has wisely hung a string with a little hook straight down in the door opening. We hang the door key on the hook to remind Tobias to take it with him on his way out. Now the hook is bare, so he’s taken the key with him. But his wallet is lying on the table, so he can’t buy anything. His cell phone is also there. I take it with me. Of course I forgot mine at the office. What should I do? Most people would agree, you shouldn’t dial the emergency hotline, unless it’s really an emergency. But now I think it can’t hurt.

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The operator is accustomed to helping people calm down, so she suggests that I go out and look for him first and then get back to her if I can’t find him. I go out to the sidewalk and find myself standing there, not knowing what to do. Which way do I go? I run across the street to the mini-mart to make sure he’s not there before we involve the police. He isn’t. My mind fills visions of him wandering around without his jeans, in only his underwear, bewildered. If that is the case, I can relax, because somebody will surely call the police. But what if he doesn’t have his identification card? You never know if he can manage to tell them his last name today. It would be dreadfully unnecessary to let him end up unidentifiable at the police station, so I dial the hotline again and tell the operator what I am thinking. She connects me to the police station. In their training, the police all go through a basic course in interview technique, but it’s apparently not intensive enough to teach them how to grasp the practical aspects of how an objective interview should be conducted. They are not nearly as well trained as psychologists in terms of being able to distinguish the difference between what is said and can be accepted as information and what needs to be interpreted. I describe the situation to the police officer on the phone and give a short description of who Tobias is, say that he is alone, that he is not supposed to be alone, but that he wanted to be by himself and had turned out his assistant, (in Swedish I say “drove him out”, which is important for the further dialogue described below). Now he isn’t home, and there is a risk that he is out walking about, without being able to take care of himself. After a short conversation, I hear that she is writing down everything I say, which feels very inefficient. She doesn’t seem to be able to differentiate between what’s important and what’s not, so I realize that I have to be concise and only communicate what needs to go out on the police radio. I say Tobias may be confused. She asks if he can take care of himself. “Yes, if he ‘wakes up’ miraculously quickly, but that’s unlikely,” I answer. “But he can drive a car!” she comments. “Car? He can’t drive!” I answer curtly and I probably sound confused. “But he drove his assistant home?” says the police woman and I sigh, communicating with her isn’t easy. He kicked the assistant out, “He drove him out. That’s what we say here; maybe it’s my Gothenburg idiom,” I say wearily. 162

Oh well, the radio message gets out, and I call Mårten to report what’s happening. Mårten calls some friends who live in the same part of town as Tobias, to see if he is there and then he takes the trolley to meet me since there is no way he can concentrate on his work. In his mind, he can see Tobias at the Western Bridge, where a friend of Tobias’ assistant jumped off and committed suicide not long ago. Mårten gets a call on his cell phone. Tobias is at Dalheimer’s House where nobody has time for him right now since he doesn’t have any scheduled activity. They have had him sit at the computer. We go there. He actually is wearing long pants -- new ones. And they are clean. But no coat, so he must have been cold on the way over, which is a twenty minutes walk. We drive home and I stay with Tobias. Tobias only wants to lie in bed, so I take the time to clean the kitchen, counters, cabinets and floor. Every ten minutes, Tobias comes out and looks at me. I wonder what he wants. Nothing. I realize after a while that he is coming to check who is in his kitchen. “Did you come to find out who is in the kitchen?” “Yes.” “Did you forget that I was here?” “No.” “You had forgotten that I was here, but now when you see me, you remember that it’s me.” “Yes.” At four o’clock the evening assistant comes, and I brief her about what's been going on. I go into the office and finish my work there. Tore and Mårten are hungry and we talk about whether we should go back to Brännö Island or eat out in town. We go out. At eight, Mårten’s cell phone rings and the assistant tells us that Tobias wants to go to bed now and that he suggests she go home early. She does. Since Tobias has been acting so unusual and has rejected his assistants the last few days, and since this is an unfamiliar side of Tobias, we decide that Tore should sleep over tonight. Once we’ve decided this, Tore can’t find any peace until he’s there, so Mårten and I have coffee by ourselves. I sleep at the office, on the eve of All Saints Day. There is always something to do at the office. I pay a bill, organize old lecture notes and prepare the next day’s lesson, which starts at 1pm. At 11:30 am, I get a call from Mårten. Tore, Tobias, his assistant 163

Therese (three of his assistants are named Therese; he must attract women with this name) and Mårten are at the cafe. Something has happened, but they don’t want to tell me on the phone, they want to come up to the office where we can sit comfortably. They tell me that Tobias is convinced he is dying. This morning, he suddenly stopped playing on the computer and lay down on his bed, thinking that he was going to die today. He didn’t want to kill himself, but thought he was going to die. He used his finger to indicate a staircase upwards, up to heaven. God wanted it, he had managed to communicate to his wondering father and his assistant. They succeeded in convincing Tobias to come into town “since he didn’t want to die without first saying goodbye to his brother, did he?” Tobias protested getting up and doing any sort of moving around and wanted Mårten to come over himself. Tore refused to accommodate; Tobias was going to have to make some effort himself. So here we are at my office. Tobias is utterly serious and is sure he is going to die today. I ask him if I can tell him what I think is going on. I explain that, since he was close to dying three years ago in his bicycle accident and is reminded of death every time he gets an epileptic seizure, perhaps his memory of these events is starting to come back. Only he doesn’t realize that it’s his memory that’s affecting him, and, instead, he thinks he is dying now when he relives this feeling? His attitude isn’t changed by this explanation because he is so set on the idea that he is going to die, and it has become an obsession, something that seems to be related to his recent epileptic seizure. We decide to bring Tobias back with us to Brännö Island this afternoon because, if he is going to die, he is going to die with us close by, not at home by himself with an assistant. I leave for my lecture with butterflies in my stomach from everything that has happened. But miraculously, the butterflies are transformed into energy, inspiration and presence in the classroom. At least the participants don’t notice that my life is chaotic. And they shouldn’t have to, they deserve to live their own lives, enjoy their course, and a class where I am performing at my best. What happens meanwhile with Tobias and Tore? Well, Tobias is pretty unwilling to go with Tore to Brännö Island, but at least they get as far as a grocery store which is open on Sunday to get some food. Strange that it should be today, All Saint’s Day, that Tobias has contact with God. Do I sound crazy? I’m not, but I have no right to

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deny the possibility that there is a spiritual reality underlying Tobias’ experience, despite the fact that it seems to me to be a kind of epileptic hallucination. Well, once out of the store, Tobias again refuses to come to Brännö Island. He says, “Now!” indicating that he is going to die right away. Tore tries to change the subject by talking about what they are going to eat for dinner and wonders if Tobias wants some wine (a deviation from absolute abstinence, which is recommended for people with epilepsy). “Don't have time,” is Tobias’ answer. “If you are going to die so soon, how much longer do you have?” asks Tore. “None,” says Tobias, “Now,” and tries to stop Tore from driving the car. Tore is of the opinion that if Tobias is going to die, they had better aim for the emergency unit at Sahlgrenska Hospital and Tobias agrees. Tobias knows that he is going to die in one minute, Tore advises him to clock it on his watch, but when the minute has passed, he insists that it is now a question of two minutes and after that, three minutes, etc. Eventually Tore insists that Tobias must trust Tore’s judgment, and not his own judgment, since he is surviving every foreboding. Tobias almost panics, but makes it all the way out to the boat. They stand on the deck of the boat and talk small talk. Everything seems to be okay, no problems. When the boat docks on the shore, Tobias again becomes obsessed with dying right there on the spot. They take a taxi up to the house, and Tobias spends the whole afternoon repeating this pattern. He doesn’t dare to be alone for a single moment and he runs his fingers though his hair over and over again, looks in the mirror, searching, with a self absorbed expression. He fixes his hair and collar in a distant, monotonous way which is new for him. When I make it out to Brännö Island in the evening, Tobias is lying in my bed with Tore lying next to him. Tobias is tired, but refuses to close his eyes for fear of dying. Yesterday, Tobias was asked if he wished to die, he responded that he couldn’t take a stand on that, it was simply a fact that he was going to die, and that he accepted this fact. But now, when the fateful feeling seems even closer, it becomes clear that he doesn’t want to die. He is terrified. When he yesterday expressed that he accepted to die, I assume that it was his old defense mechanisms that were “doing the talking”. Tobias has always been a person who refused to be afraid and has taken a careless and almost arrogant attitude to every possible threat. Just now he did it again. We haven’t seen that response since the accident. And at the same time; 165

today he is a stranger to us, he is another personality. I sit down next to Tobias, and he says he is going to die in five minutes. I say that the only way to find out if this perception is really life threatening is to live it through. I talk in terms of dying, but of not really dying, but instead to have the experience of dying and to realize what is happening. The whole time, I watch the clock and tell him how much is left of his five minutes. “Are you afraid?” I ask. He answers with an intonation which sounds surprised as if he wasn’t expecting to answer “no.” I ask if he feels calm and he answers with a “yes” which sounds just as surprised. In an attempt to make this meaningful, I ask if he is at the scene of the accident and if he can see his body on the sidewalk. So far he has answered, “yes” or “no” to everything I ask, and now he says a self confident “yes”. Still, I can’t deny the possibility that I have affected him since I suggested this image myself. I would never do this in psychotherapy, but now I don’t feel like it is doing any harm, at least if I’m able to inject some kind of meaning into the experience. I then try to articulate the experience in order to form a memory, saying that the accident is not happening now, but is only a memory. This helps for a little while; Tobias is completely calm and very clear and present. Then I go to the bathroom and Tore says he has made dinner. I realize to my surprise that Tobias and I have been “working” for an hour and a half. Tore has kept dinner warm. It’s so good to be a team! Now the demons of All Saints Night are really having a party! When we ask Tobias if he wants to get out of bed, he answers yes, but doesn’t move. Tore and I take turns going in and trying to convince him but fail. Eventually I am able to get him to sit up and drink some water. After an hour, I ask if I can bring him some food and Tobias says yes. He feeds himself, while I hold his plate. Eating is not a problem it seems. His inability to get out of bed is not a conscious protest, not an unconscious one either. I understand that when I see how well he eats. Then Tore makes a deal with Tobias: If Tobias wants coffee, he has to have it in the living room. Tobias agrees and promises that he will get up when the coffee is ready. When the hour is at hand, the same scenario repeats itself. When Tobias happens to glance in the mirror, he gets stuck, sits with his legs crossed in the bed and refuses to move. He’s been there for ninety minutes now. Tore is beginning to despair. I see that, despite his paralyzed body, Tobias doesn’t have any cramps. So I ask him to try to move his leg a decimeter and he does, but

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immediately returns to his original position. After many attempts at convincing Tobias, Tore is tired and takes Tobias’ legs and moves them down over the edge of the bed. Tobias roars “no” and looks like he is ready to fight, but he doesn’t and ends up in a standing position. From there it isn’t hard to walk him over to the sofa. We watch the movie “Fisher King”, and Tobias falls asleep a couple of times. After the movie it is time to sleep, but first Tobias has to brush his teeth and go to the bathroom. He stands in front of the mirror and brushes his teeth, but refuses to move. He stands and stares at his own image, runs his fingers through his hair, adjusts his collar, drums his fingers on the sink and is incapable of anything else. I realize that his jeans are wet, and I feel tired and angry, which is channeled into abrupt movements. I take off Tobias jeans and underwear, and seat him on the toilet. The same problems show themselves when we get him on the bed. Tobias wants to keep his shirt and t-shirt on, but taking off his sweater is okay. Then he wants the light left on and doesn’t want to be left alone. I sit and talk hypnotically for half an hour and, when Tobias has had his eyes shut for five minutes, I leave to go to sleep. It’s midnight. Tore feels like the there is something wrong and goes to check on Tobias. He finds him lying in bed with his eyes wide open, refusing to sleep and afraid of dying. Tore stays with him until one thirty, when Tobias closes his eyes and sleeps from pure exhaustion. The next day, things are looking up a little. Although Tobias has wet his bed, he says he is feeling a little “nuts” which sounds like he has a realistic and critical ability to judge the situation. He can’t manage to get breakfast himself, but he is in contact with us and no longer steered by an alien inner reality. When we tell him about yesterday, he doesn’t remember anything. He is worried. After a moment he comes and says, “Sorry”. My God, he never meant to be difficult! And surely it was worse for him than for us. Mårten calls and I tell him about yesterday evening. Tobias comes into the room to listen. I continue talking. When I look over at Tobias, I see that he is standing there crying. “Tobbe is crying listening to this. I’m going to try to comfort him. Bye.” Tobias listens to me a while; we hug and our usual feeling of love for one another comes back. I describe why I don’t protect him from hearing about how he acted yesterday. Maybe he will be better prepared next time. If it happens again, maybe part of him will remember that it isn't real, that he isn’t really dying. We think quietly

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for a while with very few words. I say I want to go back to the computer and write about this. “I am writing about everything that happens, in a book about you. Can I write about this?” “Yes,” says Tobias, and is quiet a minute. I think, “Actually, this is quite fascinating, but maybe I shouldn't say that to him, that this tragedy could be of interest. Tobias breaks the silence, looks at me and says, “exciting!” Yes, it is exciting: You are yourself, Tobias Carolusson, and at the same time you have an injured brain which can cause such strange phenomena. Discussion Questions It’s not a pretty sight to see Tobias trying to dry the table with the TV remote, and it seems like the beginning of a psychotic episode. Tobias’ conviction that he is going to die is a hard one to know how to deal with. When you try to reach a person with unrealistic ideas and reactions, there are no rules to follow and no pre-determined answers. The usual response by family members is to take the affected person to the psychiatric emergency room. Other alternatives involve using your imagination, trying to understand, protesting, forcing, holding down, fighting verbally, taking turns guarding, etc. Nothing seems to help, so what do you do? What would you do? Choose a section of the chapter with a verbal or non-verbal dialogue. • Depict some of Tobias’ reactions and think about how you would feel and react if you were in the other person's shoes? • Make a judgment about the surrounding people’s reactions to one of the sequences above. What does the other person want, and what effect does that have? If you choose to see things from a strictly medical perspective, it is easy to see that epilepsy can take on many different shapes, that abnormal electrical activity in the brain creates abnormal reactions and experiences. One could ask what it is that creates certain reactions and not others. That question is harder to answer from a strictly biological perspective, but it can still be addressed by explaining that epileptic activity creates haphazard reactions. There is also a strictly psychoanalytical tradition with roots in Argentina, which explains this type of phenomenon as a result of an inner psychic conflict between good and evil. There are three rough

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psychological strategies in the universal fight between good and evil: 1. Seeing that which is good as being internalized in oneself and evil as existing in one's surroundings. People who think along these lines can express this division as self-righteousness or piousness, and they see danger, evil and demons as existing in others, but never in themselves. 2. Seeing evil as existing in oneself and good as existing in others, which results in self-degradation, an inferiority complex, and self hatred. At the same time, the people who surround them are idealized, and the person believes that these people are harmonious and happy. 3. The epileptic solution: Good and evil cannot be separated, and the result is confusion on the part of the patient and a flight from reality. Both views, the biological and the psychological, can be extremely one-sided if they are taken as the only model of interpretation. In this chapter, I describe Tobias as “getting stuck” in stereotypical movements or stiffness. These are different expressions of epilepsy, and I have seen similar stereotypical movements in other clients with temporal lobe initiated epilepsy. One might also wonder if ideas which become obsessions might also be understood and given meaning through this process? • What models of comprehension are you most familiar with: biological, psychological, or others like religious, cultural, etc.? • What do you think about Tobias’ confused state? • Can any meaning be found in crazy thought? Is there any point in trying to understand these thoughts? For those of you who want to know more about how brain injuries can result in conceptual confusion, so that one might, for example, try to dry the table with the TV remote, I recommend reading Oliver Sacks’ The Man Who Mistook His Wife for a Hat.

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Are You in There? One afternoon Tore goes over to see Tobias, knowing that Tobias hadn’t gone to Dalheimer’s House. Instead, he has been in bed most of the day. “Tired!” is his defense, and he says he feels strange. Tore decides that this pattern of behavior must be broken. The poor new assistant is doing her best to support Tobias and has to respect the will of her boss, unless he is being very unreasonable. It is part of the job to help the challenged individual with whatever they are not able to accomplish themselves. However, the situation is complicated by the fact that the boss (in this case, Tobias) doesn’t always have the judgment to assess what is best from a long term perspective. For the assistant to be able to differentiate between Tobias simply giving up and him actually feeling tired, she would have to know him well. It takes time to get to know a person so you can work with him well. For a person like Tobias, staying at home may mean giving up and strengthening his self-centered defense mechanisms, which in turn can leave him tangled in his own web of fantasy. When he is left alone in this state for more than half a day he seems to loose his ability to differentiate between fantasy and reality. The assistants must be able to recognize it when this happens, and then to walk a fine line between respect and influence. Unfortunately, this dilemma is seldom discussed during their training. How do you come to the conclusion that you are going to convince Tobias to go to his daily activity because you are trying to break this self-focused state, just because it isn’t good for him? The assistants have a difficult task when they are supposed to both show respect and at the same time get a stubborn person to do something that s/he doesn’t want to do. Tore makes it very clear to Tobias, “You can’t just lie there and close off your mind to the rest of the world. Reality is out here. Now you are coming out to meet me. Welcome!” Tobias laughs a little, embarrassed at Tore’s strict tone and gets up without a protest. Then Tore quickly decides that since Tobias is now up, he is going to come out to Brännö Island and skip Dalheimer’s House the next day, which is a Friday. When I hear about this on Thursday afternoon, I wonder if it really is a good idea. I talk to Tobias and remind him how boring it was to be alone with Tore all day when we were on a recent vacation in Norway. And if he wants to wake up out of his cocoon and get out into reality, then his normal reality is that Friday consists of working in a

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newspaper group at Dalheimer’s. He decides to follow my advice and goes to Dalheimer's the next day. It is hard to balance our parental roles and protect Tobias while still respecting the fact that he is part of a daily context that doesn’t involve us. We are supposed to complement each other, Tore and I. Thank God there are two of us. And so necessary that we are able to support Tobias from two different directions. Not everyone has had the time to develop this kind of fellowship in the face of hardship. Sometimes the load just gets too heavy. I often think about those families that are struck by tragedy and not able to work together. They need help! How can society do preventive intervention so parents who don’t have the knowledge or energy to get as involved as is necessary don’t need to feel guilty? The support I suggest isn’t so much about how much you do, but rather about how much you are able to realize and accept what you actually feel and experience.

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Four Years Gone ”Aaaaaahhhhh!” I am awoken by a sudden scream that I can feel in my bones before my mind even catches up with me. I fly out of bed, grab my bathrobe, putting it on as I rush out my bedroom door. I am passed by Tore who comes rushing out from his nightly hour at the computer. We hurry into Tobias’ room. It is a routine. A ceremony we have once every week or two, when Tobias sleeps at our house. The first time it happened was a couple of months ago, but that particular time I convinced myself in my sleep that the sound was different and presumably came from some far away boat. When I fell asleep again, I was awoken by a strange rhythmic sound, which I quickly realized was from Tobias’ nighttime epileptic seizure. The first thing I do is appraise the situation: Is Tobias already unconscious, is he in the middle of a seizure and passed the point of being able to take control over the event? Or is he still conscious, but trapped in a powerful series of cramps or has he woken up from a presentiment of a seizure and still has access to strategies, so we can work together? What I do depends on how far along the seizure is. The process almost always follows the same pattern. First Tobias gets a feeling of dizziness or nausea which is followed by his right arm (the one that is partially paralyzed and is steered by the damaged left side of his brain) twisting into a tight angle. After that, his right foot becomes stiff and his right thigh begins to shake. After a moment, and this stage can either last a little while or quickly move on to the next stage, the tightness in his right arm and leg increases. It is often in this stage that I can help Tobias try to stop the seizure, by using various breathing techniques and deliberately tensing and relaxing each muscle. At the same time, I ask Tobias to pay attention to his inner thoughts. If the seizure refuses to be stopped, I see a sudden look of terror in Tobias’ eyes, and with his healthy, left arm, he takes hold of my arm in an iron grip. It is the grip of a drowning man and the look in his eyes quickly stiffens completely. The cramps begin on the right side of his body and force his entire body to contract and stretch in powerful spasms. At the same time his eyes roll back into his head and the whites of his eyes become bloodshot. His breathing stops for a second or becomes uneven. After a minute or so, his breathing returns powerfully accompanied by a heavy production of mucus which spurts 172

out in the form of white foam around his mouth. He exhales in loud snorts and isn't reachable for many minutes, maybe twenty or so. Then he is able to perform stereotypical movements with his left arm and he sometimes wets himself. As you surely understand, we want to help him avoid experiencing this -- at least in as much as it isn’t a symptom or sign of healing… Tonight, Tobias has clearly woken up with enough time before the seizure. His right leg is shaking from the tension, and his right arm is twisted at a stiff angle. His hands and feet are dripping with cold sweat. But he is fully awake and therefore susceptible to psychological strategies. When I choose a strategy, I have a variety of approaches, all of which focus more or less on the neurological or emotional aspects of the seizure. I have been a little careful about stressing the emotional aspects since it is so obvious that a human brain which is split up into circles or electrical systems sometimes ends up short circuiting itself. When there is such an obvious physical explanation, I would rather refrain from psychoanalyzing. Sometimes, however, I realize that such an attitude is an unnecessary humility. I’ll be back to that in a moment. I have helped Tobias focus on yet another physical explanation for his seizures. It is purely hypothetical, but not unreasonable: Tobias brain is repairing itself. Nerves have been ripped out and old “wiring” has been replaced by new. When new pathways are established, new contacts are created. Could it be that the first time a new contact is established that there is some sort of powerful electrical overload that manifests itself in a seizure? This is speculative, of course, but it is a useful image which has appealed to Tobias and calmed him when I have described it to him. He doesn’t accept all of our hypothesis -- he has retained his ability to show a critical or skeptical attitude towards our ideas -- but somehow this idea seems plausible to him. And Tobias’ intuition is my compass in my choice of working hypotheses except when he is confused, defiant or tired of having parents who are all too sensible. Over and above my wild biological hypothesis about the possible expressions of epilepsy, we also have psychological correlations. In Tobias’ case, we have been able to establish that worry and tension create seizures, whether or not that stress comes from his own stress or from somebody else’s expression of anger, disappointment or worry. For this reason, we know that Tobias’ seizures can be triggered by feelings. As a psychologist, I also know that an unresolved trauma always imposes symptoms on both your spirit and your body. Body and soul

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react as one in their response to a life threatening situation. Tobias’ trauma (the accident) is unprocessed; he simply hasn’t been able to work through it because he has no memory of the accident. According to the neurologists, it’s possible that no memory was even created since the mechanism for creating memory was out of commission at the time. As far as we know, his brain didn’t have time to create a memory of the accident. But we do know that the period before the accident usually gets lost for those who have this kind of head injury, despite the fact that there was enough time to create memory. Tobias has lost all his memory from about a year before the accident. I find it very plausible that this kind of memory loss is psychological. Humans have always shown an amazing ability to become unaware of what has become too painful. I actually find it believable that psychological defense mechanisms cause memory loss, even when the trauma results in brain injury. Nor do those mechanisms which are normally activated in life threatening or identity threatening traumas, such as torture and other kinds of physical and psychological violence, give the brain a chance to work through the problem, even when the brain is physically intact. Denial and memory loss make it possible to avoid pain and terror. A threat to body or soul seems to get stuck in the right side of the brain and/or the limbic system, as something we are still experiencing, something separated from consciousness. Sometimes, however, this defense fails and ends up leaking experiences out in the form of flashbacks. These flashbacks are often experienced as fragments of the real event. They aren’t perceived as a memory, but rather as if they were happening in the here and now. Sometimes these flashbacks happen when the person is awake and sometimes they take the form of nightmares. Since I am attempting for a holistic perspective, I would like to propose a model which unites the biological and psychological assumptions about the causes of epilepsy and which suggests that “flashbacks” could possibly be a link between the two perspectives. It is believed that our bodies are in their best repairing state when we are sleeping. Tobias seizures almost always occur during the night. Could it be that this is because the reparation and activating attempts in the brain - in the injured left brain and maybe even in the areas of the right brain that were dormant before the accident - is needed? When this happens, I can even imagine that neighboring areas of the brain are stimulated by the reparation work taking place and that they also create mental chains of associations. This could increase the “risk” of the repressed experience surfacing and affecting his dreams. Memory is not only localized in an area of the brain which is cut off from other

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areas, but exists almost everywhere. This is why the unwelcome problem of “leakage” of threatening feelings can be both neurological (i.e., linking-stimulating-irritating and associating to the repressed experiences) and psychological (i.e., an unconscious attempt to be whole again, to deal with an old trauma, to fill in the missing pieces and find a whole and complete context). I’ve seen this in many of my patients, so why not Tobias? Tonight I want to give Tobias’ needs a chance to repair themselves psychologically, providing, of course, that Tobias experiences this as meaningful. I start off the way I usually do when I arrive at the beginning of a seizure. I ask Tobias to tense up his right arm...hold his breath...tense hard and hold his breath a few seconds...then exhale and relax. We repeat this action a couple of times. Then we do the same thing with the shaking in his leg. Sometimes this is enough to recreate a sense of calm and relaxation --in which case the feeling that a seizure is on its way also disappears. But now it doesn’t go away. I talk about a new bridge that is being built in Tobias’ brain and ask him if he can visualize that something like this is happening. Yes, he immediately looks interested and absorbed and answers affirmatively. I ask him to go into his brain (with his inner eye, I mean, but I don’t have to explain this in words since Tobias understands my words literally anyway). There he is to find the men working on the bridge and encourage them to build slowly and solidly, one piece at a time. I also attempt our old reliable image of epilepsy as a big jump over an empty space, from one cliff to another, where the men are encouraged to jump one at a time and not all at once. But this earlier image doesn’t feel sufficient right now. Tobias communicates a feeling that new constructions are being built and that no provisional electrical jumps are needed to bridge dead end roads. I help Tobias focus on the bridge and ensure that the construction is made slowly and orderly. Tobias is still conscious and clear in his thought process, but the tension remains unchanged. I interpret this and explain that his tendency to have a seizure is not returning, it is just being managed, as if we have stopped a train with the hand brake. This scares Tobias. You might wonder why a seizure would create such terror in his eyes. Physically, he doesn’t feel pain and when the seizure is at its strongest, he is not conscious of it. Tobias himself, can’t explain why he is so afraid and doesn’t understand what he fears. His fear may be 175

psychological, anxiety that is similar to the fear in a trauma or maybe an unconscious fear of death. I explain to Tobias that, even though he has forgotten the accident, somehow the memory is still inside of him. I tell him again what happened and describe the details my intuition is able to fill in. Tobias’ tension is constant and the look in his eyes still borders on fear. I tell him that his experience of the accident may pop up in his dreams during the night. Tobias gestures that he doesn’t know. I say, “Maybe you need to remember and the memory can come as if it were in a movie. So you can see what is happening and even what you feel, but your fear isn’t needed anymore.” Right when I say, Your fear isn’t needed anymore, I can see some of the tension melt away and Tobias sighs gratefully. But, my experience tells me you can’t cure something like this with a single sentence, said once. So, in an attempt to get a more permanent effect, I repeat that his fear is unnecessary. I also explain why: the fear at the time of the accident put his body into a state of shock so his body could save circulation to the most important organs - the heart and lungs. Your body was determined to survive. “No, not really,” says Tobias, and I understand that he means that he stopped breathing, and that's when his body’s determination to survive also ceased, and I add: “When you stopped breathing you were dying or dead, until Mårten came and breathed into your ear.” “Yes”, says Tobias with love and gratitude in his voice. I take advantage of his feeling of gratitude and add it to his experience of the accident. “When you remember the accident in your dreams or when you are awake, you will remember it with a feeling of gratitude. Without fear, but with gratitude, because you survived. So the fear isn’t needed.” When I ask Tobias afterwards how he feels, if his seizure is completely over or not, he answers that his right leg is still stiff. I ask if he wants some diazepam as a preventative measure, so that he doesn’t get any more seizures tonight, but he says no. I sit at the foot of his bed and massage his right foot and afterwards each toe, naming them as I massage (to increase his body knowledge in this insensitive foot). What are they called? The index toe, the middle toe, the ring toe? We don’t know, but we laugh and it doesn’t matter. Finally, I massage his heel and the bridge of his foot until his foot is completely relaxed and Tobias is calm and visibly sleepy. Before I go, I repeat that he doesn’t need to feel any fear, that he survived and can feel grateful, even in his dreams.

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Discussion Questions Is there such a thing as an unconscious memory? Most people think there is though a group of neurologists claim that you cannot prove the existence of an unconscious dimension in the psyche, with stored, but filed-away memory. I recommend Christianson, Van der Kolk and Herman to those who are interested in finding out more about the research on how memory can be repressed and later uncovered again. After a night like the one I described above, where I give the suggestion: “Fear is not needed anymore”, the screams that always began a night-time seizure ceased. This change has lasted until this book was finished in the fall of 2001. And for these two years, the nighttime seizures themselves have been silent. • Do you think that terror can be affected this way? • If yes, under which conditions does the possibility of succeeding increase? • Have you seen examples of how someone seems to be very affected by earlier experiences and reacts as if these experiences were occurring in the present instead of in the past, despite the fact that it is unrealistic? • Have you yourself ever overreacted and felt unreasonably upset, afraid or disappointed in somebody, and then realized that you were probably reacting to something that you have long since forgotten, without realizing what it is? For those who want to know more about how hypnotic communication can affect the unconscious and treat repressed trauma, I would warmly recommend the book Mind-body therapy. For as long as the suggestions given to you in a hypnotic state are in agreement with your values and you are mentally prepared for them at the time, hypnosis is surprisingly effective. At the same time, suggestion often has minimal or no effect if you are resistant or fearful of the change the suggestion implies. If you want to be on the safe side, I recommend that you get in touch with a licensed psychotherapist who is trained in hypnosis. In many countries a register of these therapists can be found at the Constituent Societies of the International Society of Hypnosis. ISH and ESH, it’s European sister organization are academic international societies for hypnosis, with strict professional membership criteria.

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A Best Man of Few Words It has now been almost four years and I find myself constantly amazed over both Tobias’ limitations and his progress. I still don’t understand who he is or what he understands and can do, and what he doesn’t or can’t. Today we are on our way to Stockholm. Tobias has been invited to the wedding of his oldest friend. Not only that, but the groom, Henrik, has asked Tobias to be his best man. It is so touching that I would like to describe every little detail from this fantastic wedding, focusing on Tobias’ contribution, of course. But I will hold myself to a small part that can show both his communication problems and the small nuances of his participation. When we leave, I haven’t seen Tobias for eleven days. That’s a pretty long time considering his brain injury. It takes time to get used to each other and to get back into touch with one other in a way that is more than superficial. And to be able to get back into handling obstacles together. I encourage Tobias to find our seats on the train. Just as when he was little, I take advantage of every opportunity to teach him something new. Then I ask if he has brought his cell phone. He reaches into his left pocket since that’s the one he uses, and he says, “not in the bag”. Then he reaches down into his bag and feels inside. When I help him understand which is bag and which is pocket, he is embarrassed about his mistake. He needs to constantly practice keeping track of time so I ask him what time it is. He answers correctly, “Nine, eleventh.” Ambitious as I am, I say “nine, eleven” and he repeats, this time gratefully and without embarrassment. We sit quietly for a half an hour and then I want to help Tobias find the words to speak at the wedding. He is going to make a speech, quite simply, which really isn’t simple at all if you have a serious aphasia. So I try to help Tobias search back in time to when he and Henrik were children. It’s difficult. I bring him back in time with a hypnosis technique called “age regression”. “You are 20, 19, 18 years old...” Eventually we get to 15 when Tobias used to visit Henrik, who then lived in Linköping, but that doesn't trigger anything. We then go back to 11, when they were in the same class and had the same friends. I name teachers and bus routes. He doesn’t bite. I describe the apartment where Henrik lived. Tobias lights up and nods to me. “Yes”, he says with a slightly noticeable nuance of exaggeration. But I notice the artificial nuance and have to ask if he really has an image in this memory or not. 178

How easy it would be just to choose to believe him, to encourage him and dive deeper into the charade! He wants to please us, so we aren't frustrated by his memory loss. I ask him if he is tricking me just to make me happy. He admits he is, and says he is doing it to make himself happy too. I emphasize that I don’t want to be tricked. I prefer honesty, even if it means that he doesn’t remember anything at all. Tobias actually understands what I mean and the rest of the weekend he is completely honest, calm and doesn’t try to fake anything. It must be really easy to develop a so called “false me” as a result of wanting to please those around you. If you pretend to understand, everyone is happy. In reality, the person might not even realize that he is doing this. When Tobias lets go of his desire to remember for my sake, he becomes quiet and easily sinks into himself, searching for answers. For me this is a fascinating thing to watch since he isn’t usually able to stick with one line of thinking for more than a very short time. If he can’t find the words after a couple of minutes, he forgets what he is searching for. Now he is silent for about ten minutes, and when I am deeply absorbed in other thoughts, he wants to tell me what he remembers. He makes small circles in the air and I ask if this has something to do with Henrik. It does and I understand that many small circles in the air has something to do with their stuffed animals which they played with even up into middle school, in secret of course. Tobias is searching intensively for a word and clearly shows his frustration; he asks me for help, but I don’t know. I just understand that he is trying to remember the name of Henrik’s favorite stuffed animal, which I have also forgotten. Tobias is silent for another five minutes. I pull out a piece of paper and a pen and ask him to draw it. He draws a teddy bear. At the same time he yells out, “Yellow-Teddy!” A piece of paper with a teddy bear drawn on it and my added line saying, “Henrik. My own little Yellow-Teddy. Thank you”. And that becomes Tobias’ notes for the wedding. In front of a hundred guests, a best man of few words stands up and with his eyes glued to Henrik says, “Thank you! Little Yellow-Teddy!... Yupp, that was it... Yes!” and gives a little shrug of his shoulders. Henrik has to blow his nose. He is moved to tears.

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Accepting the Unknown It is October 2000, and we no longer see any improvement -improvement in the sense of increased vocabulary, ability to concentrate, and, well, anything else that could lead to a more independent life. It is so painful to see that Tobias no longer makes the effort to try to find words for what he means, but just says “that” and points or abstains from communicating, shutting himself off from everyone. I wonder what causes this deterioration. Does he have more nightly seizures than we know of? Or is it that the deterioration is a result of a psychological defense which blocks his ability to learn new things -- in which case I can guess one reason for the blockage: loss, pain, sorrow. It’s not a question of an imagined sorrow but rather of very real sorrow, which he can’t be talked out of, nor can he convince himself that it doesn’t exist. On the weekend, I ask Tobias about his reaction to Mårten’s spending more time with his girlfriend who has now moved in with him and their newly acquired puppy? Tobias shrugs his shoulders saying, “It's okay, why?” But I can see that he is trying to show what he thinks he should feel. Tobias isn’t enamored with the puppy, despite it being the sweetest little creature you could imagine. Or maybe that’s exactly why he isn’t enamored. I continue to try to help Tobias understand that his heart can grieve even if his reason tells him that he should be pleased that his little brother has a rich life. As brothers, they were together daily for many years and Tobias loves and admires his little brother. Their love is mutual. Tobias likes talking about this and indicates that he appreciates me describing what I think he feels. He also understands the importance of making his own friends. That is both a source of sorrow and important to accept. We agree on its importance, and the rest of the weekend is a little more light hearted than in a long time. But the weekend is followed by some slow, difficult days. We go to the movies with a friend, Therése. She has chosen the movie: Dancer in the Dark, produced by von Trier, with the Icelandic singer Björk as the lead. The lead character has a problem with her eyes that will eventually make her blind. She hides this from everyone and pretends to see better than she can, so as, among other things, not to lose her job. A loving man who is courting her guesses what is happening and says,

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“You can't see, can you?” Her defense against the pain is to daydream that she is in musicals, which she can immediately imagine. To answer him, she sings, “What is there to see? I have already seen everything”. Tobias starts to cry and his tears aren’t quiet, he is shaking from his sobs. The film touches all of us. We go home in silence. In Tobias’ kitchen, tired out, he makes tea, but can’t get any further. He can’t figure out how to serve the tea and doesn’t have the energy to search for a mug in his own cabinet. Figuring out that we need spoons to eat yogurt proves to be too difficult, as is getting butter on the table for bread. A carving knife appears, but he pauses and sees that it doesn’t go with what is on the table. I have several thoughts: Is he distracted in the same way that he was before the accident, only now the consequences are worse? If this is the case, how do I figure out if he can sharpen his attention span? Is it just a question of motivation? And the best way to motivate Tobias is to remind him about the goal of becoming more and more self sufficient. So I say, “Okay, Tobias, I’ll refrain from getting you the things you need since I know you want to be able to do it yourself. Now you don’t have an assistant with you, you can get the tea ready without help.” Tobias looks around the kitchen, but nothing happens. “You have been slow the last week and have had a hard time managing everyday activities. I wonder why... Either you have become worse, or you are a bit lazy in the same way you used to be. If it is because you are lazy, as you were before, it’s devastating to your struggle to improve. With your brain injury, you can’t afford to be as lazy as you used to be.” Tobias knows what I mean and gets up and walks back over to the refrigerator, opens it and hopes for inspiration. Then he goes back to his chair, looks at me and says, “Sorry...But I am worse.” Five words in a row. Something is happening. “You’re worse now? Is that it?” I can tell this is difficult for Tobias. “Yes, that’s it.” He washes up for bed and goes to sit in front of the TV. It is late and I feel strongly that he has had enough stimulation and we've talked about a lot of things. I suggest he go to bed and we talk more tomorrow about getting worse and how it feels. He wants to. “Do you think you are sad because Mårten is busy with his own life?” “No.” I hear that he means we’ve talked enough about it. It’s something else. The movie has awoken something that has been hiding under the surface, irritating but kept at bay. I think Tobias is 181

fighting the recognition that it’s now been four years, and he is still very handicapped, constantly limited in his ability to remember, concentrate and communicate. We have known this for a long time, but Tobias has survived on the conviction that he will go back to being the way he used to be. It is an illusion -- an illusion that was given to him to stop him from going insane from despair. I remember that only six months ago he believed in the possibility of becoming independent from his assistants within a few months, in a year at the longest. “How long do you think you’re going to need your assistants?” Tobias looks at me for a long time. His eyes are serious. “Don’t know.” “No, we don’t know. It’s hard. Not knowing. You used to be sure you were soon going to get well again. Now you say you don’t know...It’s hard!” “Yes, it is,” says Tobias and looks serious and present. I get a strong feeling that Tobias sees a life with all these obstacles as meaningless. Since I trust this instinct, I say so. I don’t want to leave him alone with his helplessness. “It’s hard to find a meaning in life?... You need to think about and decide what meaning your life can have, if you don’t get well.” Tobias radiates presence and seriousness so strongly that it fills the room. I continue, “For us, for Tore and me, you are the biggest meaning. You are the most meaningful event in our lives.” Tobias looks at me, touched and gives me a hug and a kiss. I didn’t tell him this to take away his own right to feel that there isn’t any meaning, but I am happy that I mean something to him, that our love can give him something. I suggest that Tobias stay with us for the weekend so we can spend more time talking about this. Tobias says he will, and I make sure he is calm before I leave. I walk around the city for a half an hour because I can’t stop crying, and I don’t want to do it on the trolley. Discussion Questions There are many different schools of thought on psychology and psychotherapy, but two schools dominate the field – one on the kind of psychological treatment that is called psychodynamic, and another that is called cognitive. The two are usually contrasted with one other because they are built on different assumptions about psychological 182

problems, treatment and change. Simplified, cognitive therapy can be described as a method that by changing the wording of negative words and thoughts, the patient is affected and given strength to recognize his or her possibilities. This would, for example, mean that depression and anxiety can be reframed and so they become manageable. The psychodynamic assumption is that when suffering expresses itself in symptoms, it indicates that negative feelings are loaded with anxiety. Anxiety isn’t endured, but awakens defense mechanisms, which one way or another, deny or distort reality and feelings. Anxiety becomes manageable in a treatment relationship, where the person treating the patient shows that even the most painful feelings can be understood and managed. Research shows that it doesn’t really matter which form of therapy is used, as long as the patient feels validated and respected. When you do research and evaluate different psychotherapeutic methods and let the patient describe what they feel has been important to the success of their treatment, they stress the relationship itself. Psychotherapists usually call this “working alliance”. Research shows that the alliance’s quality is just as important in cognitive therapy as in psychodynamic therapy. Parents have a relationship to their children and, depending on how much the parents are able to feel, this relationship can more or less be healing to the child. In all forms of help, from that of a friend or loved one to professional treatment, it is the quality of the relationship that is the healing factor. Methods can’t be dogmatic. More or less consciously, I make a decision as to how I am going to approach Tobias’ dark insight about the uncertainty in his life. An extremely dogmatic variety of a cognitive view would mean that I would focus solely on how to get Tobias to believe in his own development and improvement, demonstrating how uncertainty can be reframed into more positive terms, or I could simply change my focus to what is manageable and what Tobias can actually handle. An extremely dynamic attitude would mean that I would limit myself to helping Tobias realize his despair and put it into the context of the extent of his brain injury and his right to feel sorrow. It is possible to do this with clients who have a functioning left brain and who can therefore do the cognitive reframing themselves, as a result of feeling validated in a therapeutic relationship. But a person who has an injury to the left brain most likely will need active help to find healing words 183

and images. This is the case also with PTSD clients, without any brain damage (insofar as PTSD is not a brain injury). Both extremes of cognitive or psychodynamic therapy would, in Tobias' case, mean that one would ignore a large part of his inner and outer reality. The cognitive extreme would leave Tobias alone with his deep, unarticulated despair, which I would be handling as something that was unmentionable. The psychodynamic extreme would mean that Tobias would be helped to feel his despair, but that he wouldn't get help to expand his perspective to include phenomena that gave him meaning and strength. These extremes rarely show up in clinical praxis, but are sometimes ascribed to by those who want to bring into question the superiority of their own school of psychotherapy. In practical terms, those of us who are sufficiently experienced are pretty unaffected by the methods of these respective orientations, and we allow ourselves to be taught by our patients. There needs to be a balance between, on the one hand, having the strength to exist while containing the most painful emotions, and on the other, finding the resources and placing them in a wider perspective that is oriented towards the future. • What experience have you had dealing with painful emotions exactly as they are? How did it work? • What experience have you had trying to give someone hope and meaning?

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LAST WORD

We, Susanna, Tore and Mårten, have a son and a brother who now belongs to a group of people who have special gifts and experience incomprehensible suffering. Brain injuries are grim and impose difficult limitations, and every day these limitations become a more natural part of our time together with Tobias. However, we still aren’t able to accept the painful periods when he stands still or, worse, the periods where he goes in reverse. We fight our way through them with a decisive calm and cooperation, patience and stubbornness. Each time I hope we come out of them somewhat better so that Tobias’ presence and our struggle can become worthwhile and meaningful. Now and then a bottomless despair wells up, but our tears are no longer desperate, they have become more tranquil. Tobias sometimes finds himself in a very difficult state of confusion, obsessed with certain ideas, wets himself and doesn’t understand our words. Psychosis in other words. Our lives have become difficult and intensive. But we can still spend time on our own interests; we can fill several days in a row with work and can almost forget about our worry, sometimes for hours at a time. But every meeting with Tobias reaches into our marrow. Every meeting with Tobias is filled with strong emotion. He gives our lives a continuous stream of pain or happiness, love or anger, despair or hope, intensity or exhaustion, admiration and humility. And not the least, a sense of humor, when he is feeling good. This is the end of Tobias’ book. But you, thoughtful and feeling reader, is given one more task, that if you choose to take it seriously, won’t end as long as your brain is able to think and reflect: • Follow your own path. • Be faithful to your well thought-out values, until you change them. • Always assume that there is someone in there.

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APPENDIX By Dr. Bertil Rydenhag, Senior Physician and Associate Professor of Neurosurgery at Sahlgrenska University Hospital

Severe Traumatic Head Injury What happens in the brain as a result of a traumatic head injury, and how do you treat the injured person in an emergency? General Background: Injury and Treatment The purpose of this appendix is to provide an overview of the course of events which result from a severe head injury. The medical profession differentiates between primary and secondary head injuries. The primary injury occurs at the instant of the injury as a result of bleeding and damage to nerve cells or the connections between them. At that moment, some of the connections between different parts of the brain are broken or cut off. The secondary head injury occurs after the accident and results from the injury to the area surrounding the brain tissue that was originally injured. This secondary injury often results from pressure and lack of oxygen. It is important to understand the difference in time span since the primary injury occurs during a few seconds, while the secondary injury occurs during the first few days and up to a week following the accident. The human brain swells most during the third to fifth day following the initial blow. (See the chapter, “Life Threatening Swelling of the Brain.”) Most of the deaths that follow traumatic brain injuries are actually caused by this secondary swelling and pressure which often becomes so extensive and severe that they adversely affect those parts of the brain that control essential functions like breathing and heart rhythm (in the brainstem). The goal of both surgery and treatment in intensive care is to minimize these secondary injuries since there is currently little that can be done about primary injuries, other than preventing them through the use of helmets, seat belts, etc. The treatment possibilities for serious brain injuries have improved dramatically over the last 10-15 years. Today, only 10% of those who survive the first 24 hours after a serious brain injury die (Eker et al., 1998; Naredi et al., 1998). During the 1980s, the

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corresponding number was 30-50%. This decrease in the number of deaths has occurred because doctors have become more proficient at treating the swelling that occurs after an injury. Treatment of people with brain injuries consists of at least two interdependent parts. The first part is surgical. In those cases in which the injury which has caused bleeding outside (epi-dural) or under (sub-dural) the hard brain membrane (dura), an urgent surgical intervention is needed, and a so called evacuation procedure is performed to relieve the pressure. The injured brain tissue can also bleed (contusions), and in that case, it needs to be removed immediately in order to stop the build up of pressure on surrounding tissue. These surgical treatments may need to be repeated several times during the first critical days following the accident. In addition to these treatments, a pressure gauge must sometimes be implanted in order to measure the degree of pressure that is developing. The treatment of choice depends on the degree of pressure in the brain. In some cases, large sections of the patient’s skull must be removed in order to allow the hard brain membrane (the dura) to expand and give the brain room to swell. This was the case in Tobias’ accident. The second part of treatment involves neurological intensive care. That is where the swelling of the brain is treated and where the breathing function is managed by a respirator because of damage to the brain center that controls breathing. During this treatment, the a u t h o r n o t e s t h a t To b i a s wa s g ive n t h e m e d i c a t i o n thiopentothalnatrium, one of whose functions is to put the brain to sleep. It also works to minimize pressure in the brain and decreases its need for nutrition. The additional sleep medications that are mentioned in the book include midazolam and propofol. In Tobias’ case, these medicines were used in the final stages of treatment when the doctors wanted to awaken him gradually and stop the use of the stronger thiopentothalnatrium. Not surprisingly, most patients who are the victim of serious head injuries have stress reactions. The blood pressure medications, clonidin and metoprolol, are used to handle these reactions. For the treatment of pain, a morphine-like preparation called fentanyl is used. Swelling usually worsens during the first 3-5 days after the injury, and then gradually decreases. After 7-10 days, the patient can usually be woken up, although this phase sometimes lasts longer. During the first hours and days, it can be almost impossible for doctors to give a prognosis as to whether or not the injured person will survive. It is even more difficult to predict the extent of permanent

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injuries. We are only able to use careful phrases, even though there may be a few cases in which one feels a greater degree of certainty about treatment outcomes and long term prognosis. It is important to remember that every head injury is unique to that individual in its combination of injured area(s), swelling and other risk factors. Tobias injury include the following damaged areas: Nose and damaged skull The language center controlling speaking and understanding Movement and tactile sensation are also affected, on the right side A MRI (Magnetic Resonance Imaging Test) was taken a few hours after the accident. This is a brain scanning technique that can produce an image of the entire brain. One of its advantages is that it can show cross sections of the brain at different depths. The left side of the brain and its frontal areas are involved in the ability to use language and understand what is said. In the middle sections of the brain are areas that control the movement and sensation on the opposite side of the body. The back part of the brain also includes an area involved in the use and understanding of language. The MRI showed clearly that you would expect Tobias to have difficulty with all of the functions mentioned above. In other words, he would have difficulty understanding and producing spoken language (aphasia), and he would have paralysis and lack of feeling on his right side. These effects are described in the chapters entitled, "This is a Very Serious Injury" and "I’ll Put the Newspaper Here". Tobias can understand what he hears, but isn’t able to articulate his response. The front section of the brain’s language center is more seriously injured than the back section. Farther down towards the base of the skull, the MRI shows an extensive injury to the left temporal lobe, which can also cause speech difficulties as well as serious memory problems, especially those related to language. Bleeding from the ear is common and results from a skull fracture over the area of the middle ear (a skull base fracture). One can also see that the skull has been damaged higher up, where it has been pushed against the left side of the brain.

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Picture caption: MRI image after the first operation: The swollen brain is compressed from the swelling on its right side, and a section of the skull has been removed.

The figure below shows the corresponding slice following the operation.

The broken skull has been removed, which gives the brain room to swell without forcing the interior pressure to increase. The section of the skull is saved so it can be reinserted in reconstructive surgery, which usually takes place 3 to 6 months later. You will notice that in the picture the swelling is so significant that, in spite of having relieved the pressure surgically, the right side is still somewhat pushed out (distended). Tobias received his skull back later, see the chapter “Longing for the Operation.” Patients with serious head injuries are generally treated for 8-14 days in the neurological intensive care ward. After that, they are moved to the ward specializing in medical rehabilitation (Sörbo och Rydenhag, 2001). As this book clearly illustrates, recovery takes place 189

over a long period, often several years. And no one can say for sure when the possibilities for additional recovery are over. Bibliography Eker C., Ásgeirsson B., Grände P-O., Schalén W., Nordström C-H. Highlights the improved outcomes after severe head injury as a result of a new therapy focusing on the attempt to regulate brain volume and preserve microcirculation. Crit. Care. Med. 1998; 26: 1881–1886. Naredi S., Edén E., Zäll S., Stephensen H., Rydenhag B. Discusses the clinical results of standardized neurosurgical/neurological intensive care therapy directed towards vasogenic edema after severe, traumatic brain injury. Care. Med. 1998; 24: 446–451. Sörbo A., Rydenhag B., Focuses on the finding that a team approach to treating patients with brain injuries results in a better prognosis for severely injured patients. Läkartidningen 2001; 98.

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Color Insert On Thursday, Tobias Devotes Himself to Painting During the spring, we made an attempt to paint together at home. Tobias quickly covered his pallet with dark blue and black, then he didn’t want to paint anymore. I interpret this as a quick rejection of difficult feelings. Instead, he used a pencil to draw some typical boy’s superheroes with wide jaw lines and exaggerated muscles. It is a superficial youth style which Tobias could produce without needing to deal with his inner thoughts. All of the pictures are done with his left hand. Before the accident Tobias was right handed. The following pictures are painted in an intuitive process. When Tobias begins his pictures, he doesn’t seem to have any idea about his finished product. It can take three to six classes (some twelve hours) to finish a picture, depending on how much inspiration he has. Sometimes a picture remains unfinished for a while, before he finds the inspiration to finish it. When he actually chooses to finish it, he is very sure of his choices of color and form and his strokes are administered quickly! He usually works on two to three products at a time. The pictures presented up until the year 2000 are interpreted first by me with Tobias then confirming my interpretation. Since the fall of 2000, Tobias sometimes has AHA experiences as to the meaning of his work during its production and he can find the words to describe the pictures himself. I Still Life, 1997 (painted 14 months after the accident in a day center). Tobias has just started participating in a painting group at the activity center Dalheimer’s House, under the direction of John Shelton. Tobias’ ability to depict an egg, an onion and a piece of wood is tested. This is the first picture he does at the activity center.

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II Fire Inside, 1998. This picture seems abstract, but Tobias says that the “fire” is central. Could it be his own burning desire to reach out?

Development, 1997. This seems to depict different bodily positions, which might be a child’s, especially the bottom and top figures. The lopsided figure on the right side of the picture also shows how he experiences his body after the accident, with weak musculature and sagging on the right side. Between the three figures and the large one there is a small squarish object. Could it be the cement block that caused his head injury? It could be an unconscious defense against feelings of inferiority. Or is it a sign that Tobias himself floated over his body, on the night of the accident? The color purple in the art usually symbolizes spirituality.

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Future, 1998. Tobias is living on the hope that the future will recreate that which now seems lost. He doesn’t yet have much insight into his mental and physical limitations. Imagining a future must mean that he wants to live, right?

Aphasia, 1999. Tobias paints letters. I can only see this as a desire to understand letters. He can’t write, but here he allows himself to depict, color and play with the forms of letters, in the way that he is able to.

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The Accident, 1999. Vertically to the right is something which looks like a bicycle chain. The black and red contrast each other and depict strong emotions. I see the red as active intensiveness or blood and the black as unadulterated sorrow. The pine tree like figure in the middle is making fun of the situation. Tobias points to it with an expression that I interpret as: “And now we are going to celebrate Christmas and be happy, as if nothing has happened!” He says I am correct in my interpretation.

III Stavstropp, 1999. Tobias was very sure of what he wanted to call this picture. “What is a stavstropp?” wondered his assistants. “Mom knows!” answered Tobias. I don’t.

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Step Forward, 2000. Tobias described this himself: a step forward, a tornado, the ocean. He also means that the ladder is a ladder to the moon for the Dalheimer’s group. I think it is about hope, which in Tobias’ case can manifest itself in fantastic symbolic expressions.

NASA, 2000 Tobias worked on this acrylic for a long time. He also named it “ten small negroe boys”, as in the detective story, where one after another disappears. Tobias is very occupied by the United States which he considers fascinating and great, while at the same time he is against consumerism and fashion.

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Vicinity, 2003. This is painted after the original publication of this book. This is how Tobias imagines his neighbourhood from above. The second green func house in the bottom is where he lives.

Calm worry, 2000. Here, for the first time, Tobias uses clear and clean primary colors. There are four trees on the top of the hill. The picture reminds me of a photo of our family, where we stand on the top of a mountain and are happy. One of the tree trunks deviates from the others. Could this be Tobias himself? He also named this picture: Octopus with audience.

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Painted 2004. This is from a period when Tobias is longing very much for a girlfriend, for love and sex. There is hope, dynamics and expectations.

Sun and black holes, 2001. The universe and the movie, Star Wars, is sometimes reality for Tobias. He sometimes has strong fantasies about changes in the globe, for example that it is growing and we have to escape. He identifies with the main characters in the movie and is afraid that he himself is evil. Last summer, we realized that he thought “evil” meant “bad” regarding his brain injury. This understanding helped us explain to him the difference between the two.

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ALOM EDITORES S.A. DE C.V.

TÉCNICAS concierto para cuatro cerebros en psicoterapia, quince años después por Teresa Robles Te invitamos a que conozcas un libro ya clásico en español sobre psicoterapia ericksoniana, que es la referencia obligada, no sólo para los estudiosos del tema, sino para todo público interesado en conocer nuevas propuestas para mejorar su calidad de vida.

terapia cortada a la medida. Un seminario ericksoniano con Jeffrey K. Zeig por Teresa Robles Trascripción del seminario impartido por el Dr. Jeffrey K. Zeig en la ciudad de México, que propone una comunicación más eficiente, cortando las intervenciones a la medida de cada paciente y envolviéndolas para regalo (conversación hipnótica). la magia de nuestros disfraces por Teresa Robles En este libro la autora muestra las bases teóricas que sostienen intervenciones ericksonianas, aparentemente muy simples. Está escrito de manera que nos lleva a reconocernos en cada párrafo, en cada página y abre las puertas al cambio. compartiendo experiencias de terapia con hipnosis editado por Elizabeth Méndez Recopilación de nueve capítulos escritos por terapeutas ericksonianos latinos, de los cuales dos son de corte teórico y los siete restantes presentan técnicas originales que se pueden aplicar en distintos estilos de terapia. hipnosis y terapia sexual por Daniel Araoz Este libro, establece un puente entre la terapia sexual y la hipnoterapia. Propone el concepto de autohipnosis negativa, así como un método para transformarla en positiva. El autor presenta su esquema de trabajo, junto con numerosas técnicas, fáciles de aplicar por cualquier terapeuta. destrezas teatrales psicoterapéuticas por Pedro H. Torres-Godoy con la colaboración de Mario J. Buchbinder y Elina Matoso A partir de una interesante experiencia con un grupo de actores, este práctico libro te enseñará cómo aprender amenos ejercicios que te

permitirán desarrollar habilidades teatrales que podrás utilizar en la terapia y en la vida diaria. la psicoterapia, un proceso de autoconstrucción: I. los cimientos por Yolanda Aguirre Primero de dos volúmenes. Un libro de texto sobre Epistemología constructivista y Teoría de Sistemas que ilustra las explicaciones racionales con cuentos, haciendo que el lector aprenda con sus dos hemisferios cerebrales.

la psicoterapia, un proceso de autoconstrucción: II. la propuesta por Yolanda Aguirre Este segundo tomo nos presenta una propuesta psicoterapéutica que utiliza la capacidad creadora que todo ser humano tiene, y la posibilidad de ponerla a nuestro servicio en la construcción de nuestro propio ser. jardineros, princesas y puerco espines, construyendo metáforas por Consuelo Casula Este primer libro de la autora en español es un verdadero tratado sobre la metáfora, uno de los elementos esenciales del lenguaje hipnótico, para ser aplicada tanto en la psicoterapia como en la enseñanza. Los distintos lectores y estudiosos del lenguaje hipnótico, de la comunicación indirecta, encontrarán en este libro justo lo que les interesa. MANUALES ERICKSONIANOS DE GRUPOS manual del grupo de crecimiento por Teresa Robles El primero de una serie de manuales de técnicas ericksonianas para trabajar con grupos, escritos en forma tal que cualquier terapeuta puede aplicarlos. En cada capítulo se ofrece con conversación hipnótica una visión original sobre el tema que trata así como ejercicios para trabajarlo. CASOS CLÍNICOS salir del túnel y olvidar, hipnosis ericksoniana con sintomatología psicótica por Cinthia de Gortari Este libro muestra en cada sesión, cómo la actitud cercana, la mirada compasiva del terapeuta y las técnicas ericksonianas, pueden resolver problemáticas frente a las que otras psicoterapias se muestran escépticas. ELIZABETH Y MILTON H. ERICKSON homenaje a Elizabeth Moore Erickson, mujer extraordinaria, profesional, esposa, madre, compañera por Marilia Baker

Te recomendamos este primer libro de la serie que se crea en conmemoración del padre de la terapia breve, la hipnosis moderna y de su compañera de vida. La obra nos muestra la contribución de Elizabeth a la obra del Dr. Erickson a través de la sinergia de una pareja que duró cerca de 16 mil días, uno tras otro. Publicado en inglés y español. seminarios de introducción a la hipnosis, California 1958 por Milton H. Erickson Este seminario, dictado a un grupo de médicos en la época de madurez de su trabajo, muestra paso a paso su forma de hacer hipnosis. Es así un excelente punto de partida para principiantes, y aclara ideas a quienes ya trabajan con hipnosis. estrategias psicoterapéuticas de Milton H. Erickson por Dan Short El autor propone una sistematización de las estrategias psicoterapéuticas del Dr. Erickson, ilustradas con casos clínicos. Se incluye un capítulo de la terapeuta italiana Consuelo Casula donde explica dos conceptos Esperanza y Resiliencia, que marcaron la obra del Dr. Erickson. Milton H. Erickson, un sanador americano editado por Betty Alice Erickson y Bradford Keeney Es un honor y un placer contar con la publicación de este libro en español, porque además nos ofrece una visión diferente del Dr. Erickson. Una visión que propone que su trabajo era también espiritual. Y esto queda claro a través de las aportaciones de las personas más cercanas a él, y de sus amigos, discípulos y colaboradores.

NUEVOS PARADIGMAS DE LA CIENCIA tejiendo sueños y realidades, aportaciones del paradigma holográfico a la psicoterapia ericksoniana por Guillermina Krause La autora nos presenta en forma sencilla las últimas propuestas de la física cuántica para entender el Universo. Estas propuestas fascinantes, ofrecen una explicación a los cambios “milagrosos“ que se dan a través de la psicoterapia ericksoniana. Es un libro de interés general que nos lleva a expandir la conciencia. AUTOAYUDA - Libros revisando el pasado para construir el futuro por Teresa Robles A partir de elementos autobiográficos, la autora nos presenta en lenguaje cotidiano, conceptualizaciones teóricas, junto con sencillos

ejercicios de auto hipnosis. Lectores y lectoras se reconocen en estas páginas constando que, si bien somos únicos e individuales, en el fondo somos muy parecidos. síndrome de pánico, una señal que nos despierta por Sofía Bauer La autora menciona que el síndrome de pánico o crisis de angustia, es una señal que aparece para que cambies tu estilo de vida. Si escuchas su mensaje, puedes curarte. Ofrece ideas y ejercicios prácticos para disminuir la ansiedad. la granja de la esperanza, transformando las huellas de la vergüenza editado por Cecilia Fabre La vergüenza es universal y puede surgir a partir de distintas experiencias que generan una maraña de emociones. Este libro de cuentos terapéuticos para niños y grandes te ayudará a manejarla mejor. abriendo puertas con amor, caminos en la educación de los hijos y en la prevención de problemas futuros por Angela Cota Guimarã es Mendonça y J.Augusto Mendonça Es un libro dirigido especialmente a los padres, psicólogos y educadores, donde a través de relatos sencillos, sobre temas universales, los autores ofrecen ejemplos prácticos y útiles de su vida para enfrentar situaciones de todos los días. guía de auto-preparación para el parto que sueñas tener por Armelle Touyarot Este libro es una guía de auto-preparación para el acontecimiento “nacimiento” y está construido como un programa. El objetivo de la autora es que tengas una buena experiencia de tu parto utilizando la hipnosis ericksoniana. En la medida que vayas avanzando en su lectura podrás darte cuenta si responde a tus dudas, si tranquiliza tus miedos, si te da las herramientas que necesitas para sentirte lista para ese momento. Incluye un CD de audio con ejercicios de autohipnosis para ayudarte a entrar en el estado mental que necesitas para vivir tu parto como tú lo estás soñando tener. Audio Y si quieres trabajar contigo mismo, evitar la terapia o salir de ella en poco tiempo, prueba nuestra serie de audio presentada en CD y en audiocinta. El CEM, a través de Alom Editores, promueve esta serie con ejercicios sencillos, seguros, protegidos, paraquepuedastrabajarencasa.

recupera tu fuerza de vida por Teresa Robles Es como un servicio general que todas las personas deberíamos hacernos de vez en cuando para estar bien en la vida, como hacemos servicio a nuestros coches y aparatos. música para entrar en contacto contigo producción Francisco Robles Dos versiones producidas a partir del Canon de Pachelbel, que te ayudan a entrar adentro de ti. Una, con instrumentos musicales mexicanos. Otra, con el sonido del mar y un sonido producido con diferentes cantos de sanación. Esta música es el fondo de los otros materiales de audio. Al escucharla, se reactivan y refuerzan los procesos desencadenados con los ejercicios que realizaste con ellos. Yo Soy sanando por Teresa Robles Estamos en nuestro lugar cuando disfrutamos la vida y tenemos paz interior. Yo Soy Sanando te ayuda a encontrar tu lugar, cumpliendo tu Misión, resolviendo las dificultades que encuentras en el camino y despertando tu Sabiduría Interior. escuchando mi cuerpo, mis emociones y mi espíritu por Iris Corzo El ser humano es integral: es mente, cuerpo y espíritu. Si vivimos como un todo unificado, obtendremos la armonía. Esta grabación te invita a atender estos aspectos para favorecer tu bienestar. salud y enfermedad por Iris Corzo Salud y enfermedad son partes de la vida. Este audio te invita a enfrentar la enfermedad de una manera diferente, participando activamente en tu curación, recuperando tu independencia y autonomía, utilizando tus recursos internos. para quererte tú a ti justo como necesitas por Teresa Robles Aprendemos a mirar hacia fuera y olvidamos mirarnos a nosotros mismos. Dejamos de percibir las señales de nuestro cuerpo, tragamos nuestras emociones. Este CD te ayudará a reconocer tus emociones, escucharlas y digerirlas. Es ideal para personas que sufren de depresión, ansiedad y/o estrés. la herencia. música que desata imágenes producción Francisco Robles Esta música compuesta te lleva a entrar adentro de ti, desencadenando los procesos naturales que requieres en este momento de tu vida. Contiene una introducción de Teresa Robles para proteger el proceso y un final para facilitar que te pongas nuevamente en contacto con el mundo externo.

ejercicios de liberación de la energía negativa y el estrés por Margarita Ramos Elorduy En este audio aprenderás ejercicios para manejar mejor tus emociones a través de golpecitos en distintas partes del cuerpo. Verás cómo puedes ponerlos en práctica desde el primer momento. para relacionarte mejor contigo y con los demás por Teresa Robles Si la vida es una escuela, las relaciones con los demás son la universidad. Este compacto constituye un servicio general a tus relaciones para ayudar a pasar al postgrado donde nos toca disfrutar la vida con paz interior. para volver a dormir como antes por Montserrat Ramos Los sueños son parte de nuestros mecanismos para digerir las emociones que vamos acumulando día tras día. Cuando tenemos muchas indigestas, viene el insomnio. Este disco compacto te ayudará a digerir las emociones viejas y nuevas de forma agradable y protegida mientras descansas y vuelves a dormir como antes. construye tu realidad y ayúdanos a construir un mundo mejor por Teresa Robles Hoy en día, la Física Cuántica nos dice que el mundo que consideramos real es una proyección, algo como una ilusión y que nosotros construimos la realidad material. La construimos con nuestra intención, nuestro deseo y la imaginación. En este CD, aprenderás algo sobre estos temas, pero sobre todo te invitaremos a hacer un pacto entre tu parte humana y el Dios adentro de ti, para construir tu mundo a tu estilo y ayudarnos a, entre todos, construir un mundo mejor. cuentos terapéuticos para chicos y grandes por Cecilia Fabre Los cuentos abren la puerta a una comprensión diferente de los problemas abriendo opciones más saludables para contactar con nuestras emociones y con nuestras experiencias de vida. Con este CD verás que los cuentos permiten que tanto adultos como niños se conecten con vivencias pasadas de una manera segura y protegida, poniendo a distancia los problemas mientras de manera cercana se resuelven, aprendiendo de ellos, cómoda y protegidamente. FASCÍCULOS textos selectos abriendo puertas con amor por Ángela Cota Guimarães Mendonça y J. Augusto Mendonça

Los terapeutas ericksonianos sugieren y proponen a través de contar anécdotas de su vida. Este fascículo es una selección de textos dirigidos a maestros y padres de adolescentes, donde los autores narran sus experiencias como padres y como terapeutas. manual del grupo de crecimiento por Teresa Robles Asómate a este ameno fascículo que te encantará y en donde encontrarás una manera diferente de ver la vida, que corresponde a la manera de hacer psicoterapia que estamos construyendo en el Centro Ericksoniano de México, incorporando otros marcos de referencia. aprendiendo a caminar por la vida por Teresa Robles Desde sus primeras páginas, este práctico fascículo te enseña, de manera segura y natural a utilizar los instrumentos necesarios, que de alguna forma ya conoces, y poderlos aplicar efectivamente en tu vida diaria. ideas prácticas para el manejo de conflictos y algunas reflexiones por Teresa Robles Es un texto que te invita a mirar y cambiar los aprendizajes que nos hacen competir por el primer lugar, tratar de ganar aplastando a los demás. Te enseña a colaborar en lugar de competir, a establecer negociaciones donde todos ganen y a entrar en contacto con tu Sabiduría Interior y la de los demás. para detectar y prevenir la anorexia y la bulimia entre tus seres queridos por Adriana Barroso y Raúl D Ángelo La anorexia y la bulimia son padecimientos que pueden ser mortales y aparecen cada vez más y más temprano en nuestros adolescentes. Te invitamos a leer este fascículo que te ayudará a conocerlas y detectarlas con la ayuda del cuestionario que se incluye al final. DICCIONARIOS diccionario breve en psicología: psicología activa por Guillermo Flores Primer texto de la serie Diccionarios. Este sencillo y práctico texto resulta un excelente apoyo para todo estudiante de la materia, así como para la gente interesada por conocer más sobre esta fascinante disciplina, ya que proporciona la definición de los términos más utilizados dentro del campo de la psicología.

TESTIMONIOS Victoria de las Mercedes por Laura Elena Barrientos La biografía de una niña que, a pesar de graves errores y negligencia médicos, gracias a su extraordinario apego a la vida, la dedicación de sus padres y las “mercedes” de los amigos, ha salido victoriosa sobre diagnósticos derrotistas. voces abiertas al Amor Testimonios del Premio Nacional Victoria de las Mercedes l999, editado por Laura Elena Barrientos. Si te interesó el primer libro de esta serie, te cautivaremos con el segundo de la colección, en donde convergen veinte testimonios de vida, veinte vivencias y experiencias de seres humanos (cuidadores, familiares, discapacitados) que han aceptado el compromiso de vivir con orgullo y con valentía una existencia que la vida les deparó o que ellos eligieron como Misión. HELIOS-VESTA los maestros ascendidos escriben el libro de la vida Un texto de Metafìsica y para aquellos lectores que no comulgan con estas enseñanzas, es un bello cuento de hadas que, al leerlo, va abriendo puertas, estableciendo conexiones, acercándonos a una realidad y a una sabiduría diferentes, a través de un camino que va por rumbos distintos de la lógica racional. encuentra tu misión por Alicia Rodríguez La presidenta del Comité Internacional de la Bandera de la Paz, organización no gubernamental de Naciones Unidas, nos relata cómo entró en contacto con este símbolo sagrado universal, así como su significado e importancia para el momento actual, para ayudar a generar la paz al interior de cada ser humano. tu alma gemela llamada Dios por Ivonne Delaflor Es un libro que realmente produce cambios internos al leerse y al ejercitar sus diez visualizaciones prácticas. Representa el símbolo del nuevo movimiento espiritual: un despertar que se está dando en todas partes. Publicado en inglés y español. tu alma gemela llamada Dios II por Ivonne Delaflor Si te interesó el primer tomo, asómate a esta segunda obra en la que encontrarás pensamientos de amor a Dios, a la vida, con el recorda-

torio siempre positivo de que tú tienes la capacidad de elegir lo que quieras vivir. Publicado en inglés y español. la Maestría de la vida, co-creando una realidad de Amor, a través del poder del Compartir por Ivonne Delaflor Tan interesante como sus obras anteriores, ésta es una recopilación en la Internet que la autora realizó de tres años de compartir experiencias con personas de diferentes tradiciones, lugares y religiones a través de un boletín inscrito en la Internet. transfórmate en Bandera de la Paz, claves para lograr ser una persona armónica y saludable, por medio del Símbolo de la Bandera de la Paz por Alicia Rodríguez La presidenta del Comité Internacional de la Bandera de la Paz, organización no gubernamental de Naciones Unidas, nos ofrece ideas prácticas y ejercicios para ayudarnos a ser una persona armónica y saludable utilizando el significado de paz que nos ofrece este Símbolo sagrado universal. en alas de Luz I por Ronna Herman Este libro forma parte de una colección de cuatro libros que tratan sobre la esperanza. A través de sus páginas nos transmite mensajes sobre el amor: el amor a uno mismo, amor a la vida y cómo disfrutar de la experiencia de ser un ser humano potencialmente espiritual. El libro reafirma nuestra creencia en la unidad ya que sus mensajes nos ayudan a entender quiénes somos y cómo crear nuestra realidad perfecta, y ayudar a otros a hacer lo mismo, compartiendo la experiencia de la sabiduría y el amor. LITERATURA el viaje y la luna por Ariel Sánchez Joven hacedor de audaces entreveros poéticos, Ariel Sánchez amalgama en un solo río tumultuoso ficción y realidad, lucidez apasionada y desgarramientos existenciales que asoman a honduras inexploradas del alma.

TITLES IN ENGLISH TECHNIQUES A Concert for Four Hemispheres in Psychotherapy by Teresa Robles If you want to know what it is the ericksonian psychotherapy, you can start reading this book. On it, Teresa Robles, Ph. D., shows us her own style to make therapy, in a simple language, clear and with many examples. As it happens with all her books, its reading takes you inside of you, something change and it makes you feel well. There Is Someone in There by Susana Carolusson This is a book about a perfectly healthy 23 year old who acquires a lifelong disability. It is about the greatest fear parents have concerning their children, that their child will be the victim of an accident and will be deprived of their ability to think, move, speak or do anything we associate with the ability to live a full life. ELIZABETH & MILTON H. ERICKSON A Tribute to Elizabeth Moore Erickson, Colleague, Extraordinaire, Wife, Mother and Companion by Marilia Baker This book show us the contribution of Mrs. Elizabeth Moore Erickson to the work of his husband, Dr. Milton H. Erickson, through the synergy of a couple that spend together about 16,000 days, one after the other. HELIOS- VESTA The Soulmate Called God, Vol. I by Ivonne Delaflor This book it is divided in five sections. In the first, named Inspirations, 54 poems are presented. The second contains nine creative visualization exercises. The third corresponds to a series of messages. The fourth contains affirmations of the Twin Soul and the last one, daily contemplations to inspire the hearth. The Soulmate Called God, Vol. II by Ivonne Delaflor In this book you will find love thoughts to God, to Life, with the reminder always positive that you have the capacity to choose what you want to live.

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