A Lonely Desert Island

By Carole Petcher and Raymond Petignat

Against ignorance: the suppressed reality of mental illness and the consequences for those affected and their families
by
Carole Petcher & Raymond Petignat

The widely held ignorance in the field of mental illnesses provided the major impulse that prompted the writing of this book. Most people are completely lacking in knowledge, although mental illnesses, in this case schizophrenia and bipolar disorder, are really not as uncommon as many would like to believe. In our judgment, widespread information and education are desperately needed, also because our so-called Opinion Leaders often present this subject in completely the wrong light. When a spectacular case comes into the public spotlight, this ignorance, a hard but unfortunately justified word, is horrifyingly obvious even in the well-educated. This is apparent in television discussions and newspaper articles, where hypotheses and theories are quoted as indisputable truths. The general knowledge about diseases such as cancer, through AIDs to circulatory complications and malaria, is considerably greater than the understanding of the forms of mental illness. We would like to make the general public aware of the serious associated problems faced by families, to provide these families with our support and sympathy, to remind the media and the lawyers of their power that can be used for good or evil and to sensitise the psychiatric profession to the wider picture and the danger of dogmatism. In this vein, we are ambitious; only you can judge if we are over-ambitious.
Although we touch on the subject of the obsessive-compulsive disorder, the main theme of our book concerns schizophrenia and manic-depression (bipolar disorder). These are serious but and this may be a source of amazement to many treatable illnesses, if the patient meets certain requirements and adequate resources are available. The stories that follow show that this is unfortunately not always the case, particularly when the picture is distorted by the idea of the family and environment as causative factors. It must also be said that immense steps have been achieved in the last twenty years with regard to the treatment of the patient and in the approach of the medical profession to the family. Schizophrenia, and this often goes unrecognised, is the most expensive illness of all, as it results in not only direct but also indirect costs, such as inability to work, pensions, financial support by the families.
In summary, this book primarily confronts the often grim experiences of relatives with the inadequate knowledge of a major section of the broader population, concerning the existence of mental illnesses and the social problems involved. Secondly, it aims to provide some basic information on the current thinking about mental illness and to offer some practical advice on dealing with it. Thirdly it challenges the professional world with the still existing divisions between medical knowledge and everyday practice. Early diagnosis, with conscientious preliminary investigations, and the education of young parents in this field seem to us to be particularly necessary. In short, we do not aim to alleviate the situation of the relatives, but to improve the living conditions and perspectives of people that suffer from a serious mental illness. The equation is eminently simple: when this is achieved, the relatives will also benefit!

• Language: English
• Publisher: Xlibris US
• Release date: Oct 19, 2006
• ISBN: 9781465320902

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Copyright © 2006 by Carole Petcher and Raymond Petignat.

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Contents

A LONELY DESERT ISLAND

THE UNAVOIDABLE INTRODUCTION

My battle with mental illness

The freedom to suffer mental illness and

its consequences: a story in many acts

How a rolling stone becomes an valanche

Mental illnesses: The blot on the landscape of modern health consciousness

Scapegoats on the way to a partnership:

the family

Facts, theories and statistics on mental illness in the form of schizophrenia and bipolar and obsessive-compulsive disorders

[References (14), (19), (20), (21)]

A crumpled copy of Time Magazine

Hands off drugs!

A short life

The dark cupboard

Everything has its place

The destructive power of schizophrenia

The highlights and the lowlights

Childhood paranoia

Folie à trois?

A burden shared is a burden halved

Closed curtains

A partner with schizophrenia—

A husband’s perspective

In sickness and in health

The light at the end of the tunnel

Psychiatry as an instrument of succour:

the dilemma

Psychotic and above the clouds

And suddenly everything was different

It was so difficult to find help

Involuntary Treatment:

a family perspective

A moral and ethical imperative

(with our thanks to Cannonier)

After twenty years:

Cornelia’s story, a sequel

Everyday practice for those dealing with mental illness, particularly in the case of schizophrenia

Help yourself: the support group . . .

What I would like!

A Day in My Life by Cannonier

Schizophrenia—

Adrift In An Anchorless Reality

by Janice C. Jordan, Schizophrenia Bulletin, Volume 21, No. 3, 1995, First Person Account series

Advice to the families: our conclusion

REFERENCES

ACKNOWLEDGMENTS

Dedication

Dedicated to our families and the friends who accompanied us and supported our work on this book, also to all those people with mentally ill partners, daughters, sons, brothers, sisters, mothers, fathers, nephews and nieces, who are determined, despite all the setbacks this may involve,

never to lose hope for a better future for the ones they love

We gratefully acknowledge the financial contributions made by both the Basel and Basellandschaftliches Lotteriefonds in Switzerland and the cover page done so magnificently by Cruze.

A LONELY DESERT ISLAND

The couple are totally unprepared. Their children are grown up; two sons and a daughter have flown the nest. She is the second oldest and lives in a commune with other young people. It’s a family like thousands of others.

One day, completely without warning, there is a phone call from the police, We have picked up a young woman. She refuses to talk to us. She has a savings book with her in the name of Cornelia F. Is that your daughter? Sophie and Walter are in a state of complete shock. What on earth has happened? They collect Cornelia from the police station. Sophie can hardly believe it when she first catches sight of her daughter: Cornelia’s once beautiful long black hair hangs in lank rats tails over her face and she is wearing frayed espadrilles, a dirty, flecked, full skirt of an indefinable colour, and a sweater full of holes. Back at home, the father also fights back his tears. The savings book shows a clearer story. The parents know that Cornelia has given up her job some months ago, after she had successfully finished her apprenticeship. For weeks, she has been making withdrawals from her savings account, regularly a few pounds here and a few pounds there, as though it’s a piggy bank that will never be empty.

Visits to the doctor, tests and the committal to a psychiatric clinic follow. Cornelia’s friends all speak out against this—Sophie and Walter are now confronted with the anti-psychiatric movement. They soon recognise the extent of the conflict in which they are unexpectedly involved. Cornelia is of age. The people in the commune are quick to point this out and tell them that they have no right to interfere. For Sophie and Walter though, it’s clear that their daughter (and she is after all still their daughter) urgently needs help. They learn that Cornelia has been completely isolating herself within the commune. For hours, she has sat in front of a candle, meditating. Her companions think that everyone has a right to behave like this whenever they feel like it. Cornelia’s parents, however, do not believe that she is exercising any such right but that she is seriously ill. She is hearing voices that threaten and torment her.

After just over a week, Cornelia leaves the clinic. She is like a different person and can once again carry on a conversation with her parents. However, the clinic personnel think that she is suffering from a schizophrenic-type illness and provide this cautious medical diagnosis. Her parents acknowledge this with mistrust and astonished disbelief. Suddenly their existence up till now, with its small day-to-day pleasures and problems, is interrupted by a state of affairs that they never thought that they must confront: Schizophrenia—such a foreign concept, a lonely desert island, shunned by all, with unhappy people who have little or no contact with the outside world. At first, the parents are happy and reassured by the results of Cornelia’s treatment in the clinic. Their hopes are raised and they firmly believe that this incident is to lie outside what they can normally expect to experience, particularly as Cornelia simultaneously seems to be involved in an unhappy love affair and this may have been a precipitating factor. They have no idea that a long painful path is opening in front of their daughter—this must not always be so but for 70 % of the patients is indeed the case. On this journey they must accompany her most of the way; they have no other choice, unless they desert her completely, which they cannot accept.

Now they have to realise that almost everything they have invested in the upbringing and education of their daughter has been more or less for nothing. Instead, they are confronted with their apparent responsibility for Cornelia’s condition. A doctor, whom Cornelia consults after a further (her third) stay in the clinic, tells them, Every family needs a scapegoat. After this revelation, they return home full of feelings of guilt and insecurity. What on earth have they done wrong? So they leaf through their photo albums and hunt for a clue in their souvenirs from Cornelia’s childhood. They search in vain!! All that they find are pictures of a loveable and happy child.

THE UNAVOIDABLE INTRODUCTION

The widely held ignorance in the field of mental illnesses provided the major impulse that prompted the writing of this book. For families, the initial encounter with this problem often leads to events similar to those described in the preceding chapter. Most people are completely lacking in knowledge, although this illness is really not as uncommon as many would like to believe. In our judgment, widespread information and education are desperately needed, also because our so-called Opinion Leaders often have no idea on the subject at all. When a spectacular case comes into the public spotlight, this ignorance, a hard but unfortunately justified word, is horrifyingly obvious even in the well-educated. This is apparent in television discussions and newspaper articles, where hypotheses and theories are quoted as indisputable truths. The general knowledge about diseases such as cancer, through AIDs to circulatory complications and malaria, is considerably greater than the understanding of the forms of mental illness. We would like to make the general public aware of the serious associated problems faced by families, to provide these families with our support and sympathy, to remind the media and the lawyers of their power that can be used for good or evil and to sensitise the psychiatric profession to the wider picture and the danger of dogmatism. In this vein, we are ambitious; only you can judge if we are over-ambitious.

Although we touch on the subject of the obsessive-compulsive disorder, the main theme of our book concerns schizophrenia and manic-depression (bipolar disorder). These are serious but—and this may be a source of amazement to many—treatable illnesses, if the patient meets certain requirements and adequate resources are available. The stories that follow show that this is unfortunately not always the case, particularly when the picture is distorted by the idea of the family and environment as causative factors. It is important at this point also to say that many of the cases we describe could be regarded as extreme and almost certainly could have been avoided by adequate therapy. The last thing we want to do is increase the stigmatisation of the mentally ill, as so many have never been violent or required involuntary treatment in a clinic. Immense steps have also been achieved in the last twenty years with regard to the treatment of the patient and in the approach of the medical profession to the family. Schizophrenia, and this often goes unrecognised, is the most expensive illness of all, as it results in not only direct, but also indirect, costs, such as inability to work, pensions, financial support by the families.

In summary, this book primarily confronts the often grim experiences of relatives with the inadequate knowledge of a major section of the broader population, concerning the existence of mental illnesses and the social problems involved. Secondly, it aims to provide some basic information on the current thinking about mental illness and to offer some practical advice on dealing with it. Thirdly, it challenges the professional world with the still existing divisions between medical knowledge and everyday practice. Early diagnosis, with conscientious preliminary investigations, and the education of young parents in this field seem to us to be particularly necessary. In short, we do not aim just to alleviate the situation of the relatives, but to improve the living conditions and perspectives of people that suffer from a serious mental illness. The equation is eminently simple: when this is achieved, the relatives will also benefit!

SECTION 1

THE ISOLATION OF THE DESERT ISLAND:

Problems, worries, information

This section begins with the story of a young woman who describes her battle with mental illness and her firm resolve to master her own life. Here the author has taken control of her illness and not vice versa. This is the situation for which we all wish. Next, the extremely stressful experiences of a mother with her schizophrenic son are described in the form of a drama with seventeen acts. The individual details have parallels for many families. A summary of the reactions of the media to the events described is also presented. Both of the stories confront the reader with the reality of mental illness today and serve as an introduction to the lonely desert island.

We then consider the development of psychiatry in the second half of the 20th century and past events in the mental health area. This is very important in order to understand the stories in the second section. Subsequently, follows a text about the problems and concerns of the relatives that also examines their human inadequacies. In this respect, they are no different from other people. Our standpoint is clear: no more apportioning of guilt to the family. Severe mental illnesses are just that, illnesses whose causes are largely unknown.

This first section ends with a short summary of facts, theories and statistics in the mental health field we are considering, based on sources such as the Internet and literature. It presents a general overview and is not comprehensive.

My battle with mental illness

Monica Zaugg-Laube tells her story

Even if there is a suspicion at the back of one’s mind that something is wrong, the first experience of a psychosis probably makes the greatest impression because it is so completely bizarre and unexpected. I have been psychotic twice in my life, the second time as a consequence of the crazy assumption that the disease had been conquered and would never reappear. Between the two attacks, I managed for two years without medication.

The path to the first psychosis and the family

Just as there is a path out of a psychosis, there is a path that leads you into it.

I am the fourth of five children and I come from a family of academics. My father was, for twenty-five years, chief consultant in the surgical department of a teaching hospital. My two older sisters studied at university, another older sister is mentally handicapped and I have a younger brother.

I was a bright, intelligent, active child with a lively imagination, which much appealed to my father. I was out-going, amiable and eager to help though I kept my ambition and pride well concealed in my heart. From this short description, it’s clear that with this constellation lack of success at school would bring problems. The expectations were placed too high, both by me and also by my father, from whom I continually sought recognition. My father disguised his affection for me, as he was afraid that he would put my siblings at a disadvantage.

The failures at school were caused by dyslexia that was only discovered by the school psychologist at a late stage, along with the resulting depression. I wept with relief that finally my suffering had a name. The fear, that I was in some way abnormal, disappeared. I was told that I was of above average intelligence and that it was a wonder that I had managed to get so far at school with this handicap. This knowledge helped tremendously, but was not enough to ameliorate the depression. I attended a therapy for dyslexia, which, though well meant, was not much assistance and was another strain on my school timetable. In addition to the increasing difficulties, I also developed an over-weaning perfectionism that, in part, was caused by the school environment, where more was always demanded than I could achieve. I told myself that the more I practised and more effort I put into my work, the better things would be. My life was filled with worry about my academic progress, which had become for me a question of survival. Only the music lessons kept my head above water.

The depression remained untreated, as my parents did not accept its existence: it was unknown in our family. I isolated myself more and more. I no longer found a prop in the Catholic faith, with which I had grown up, as I could no longer believe in it. As basically a religious person, I couldn’t stand the idea that it was hypocritical and false. This conflict in my beliefs was strengthened by the fact that, as a student at a Catholic school, I often had to attend the religious services.

I had the impression that my father was responsible for my difficulties. He had a talent for humiliating me even if this was not his intention. If I wrote to him, he pointed out my spelling mistakes and ignored the content. Consequently, letters from me were rare. He was also disturbed by outward appearances, such as my clothes and my hair, which was impossible to tame and stuck out all over my head so that I looked like Jimmi Hendrix. This hurt me and gave me the feeling that I was not OK as I was. He brushed my concerns under the carpet and made light of them. I was advised not to take myself so seriously and to be more relaxed about life in general. I worried about the environment and the Third World and felt myself to be responsible in some way. My parents insisted that this was an exaggeration and that things were not really that bad. This only served to increase my concern and destroy my trust in my parents.

I was now at a Catholic teacher training college. The music lessons were becoming less satisfying and I had a mathematics teacher who was harassing me. I began to have ideas of suicide and to hate myself. From college, I telephoned my mother, with whom I had always had a good relationship as she could empathise with me. I said that I couldn’t guarantee what I would do next. She realised how distressed I was and came to collect me the next day. Apart from her, no-one showed any sympathy at home, although my conduct was tolerated. My brother wanted to put me on the right track and to send me back on the spot. All I craved for was some understanding.

The family convinced me that the teaching course would provide me with a solid grounding and a range of possibilities for a future career, so I was prepared to return, this time to a different college. There, I could live off-campus with the family of an uncle and play in a youth orchestra, which meant a lot to me. Here too, I felt victimised by certain teachers. I never addressed the question of my own performance and aims that were clearly too ambitious and were complicating my life. In this way, I slowly slipped into the psychosis that was, in reality, an attempt to save myself from an impossible situation. I was completely over-stretched and over-worked, which I often complained of, but apart from evasive answers, I was given no help.

The first psychosis

The final exams were approaching. I had problems with sleeping and insisted that, if I yawned widely and stretched properly, that was equivalent to an hour’s sleep. My uncle realised that I was not well and recommended a psychiatrist. The reason that I had not already searched for a good psychotherapist lay in the fact that my father had always made a joke of this profession and didn’t recognise its value. My aunt thought that I should wait until my exams were finished and that the problems would then sort themselves out. I myself felt schizophrenic, even looked up the word in a dictionary and made the self-diagnosis of schizophrenia. This was never confirmed by a doctor.

The increasing constant tension and fear resulted in disturbing dreams, changes in my sense of reality, persecution mania and imagined voices. I hardly needed any more sleep or food. I felt as though I was a genius and full of energy, that I could read people’s thoughts. The sharpened sensations and seemingly endless strength provided me with an indescribable feeling of exaltation. I was teetering on a high wall with a deep ditch on either side and was not afraid of falling. Increasingly however, this emotion became tinged with anxiety and paranoia, apprehension that someone wished to kill me. On one occasion, I threw an apple core at the windscreen of a car that was driving slowly by me, because I thought that the driver wanted to hurt me and I would be unable to prevent him. The driver stopped the car, got out of it in a fit of temper and advanced towards me. I calmly let him come within a few metres, then gestured disrespectfully and shouted, Get lost. I proceeded to point at his car with outstretched finger and hissed again, Get lost, immediately. The man shook his head in disbelief and climbed back into his car. This reaffirmed my belief in my power and, at the same time, confirmed to me that my suspicions were correct. My thoughts were full of contradictions: I felt simultaneously extremely strong and very weak.

The final exams were taken and passed in a fully psychotic state. At the end, there was a test in first aid where I thought that the practice puppet figure was a living person, although I could clearly see that was untrue. I underwent the oral exam in a fantastic condition, in the true sense of the word. My situation showed no improvement and my relatives lived through such frightening times with me that, when my parents collected me, my uncle told them that I might never enter his house again. I think they had had many sleepless nights because of me and other problems, which I had apparently caused but was not aware of at the time. My parents packed my cases into the car and we drove away. The radio was playing and I felt as though I was being pursued: I was part of the radio transmission and thought I was centrally important for the whole world, its fate depended on me. That sounds ludicrous but, in view of my experiences, you can perhaps imagine the stressed and unwell state I was in at that point.

At home, I sat in an armchair in front of the television and expected at any moment to see my image moving across the screen. Although this never happened, I was convinced that the programme was focussed on me. I was afraid of my parents. My mother appeared to me to be a wicked witch and my father a dangerous wizard; both intended to destroy me. That night, my younger brother told my father that I was not sleeping. My father came downstairs and wanted to give me something to help me to sleep, which I knocked out of his hand in a rage.

Committal

A cruise had been planned for the whole family and my father recognised that it was not possible for me to accompany them. He asked a psychiatrist friend if he knew of a good clinic. The next day, he put me in the car and I imagined that we were driving to one of his patients that I would heal by the laying on of hands, so that it would not be necessary for him to perform a surgical operation. I still felt that I had unbelievable power but was simultaneously like a raw egg with no shell, a nothing.

Father actually was taking me to the clinic. There I had to wait whilst he spoke to the consultant and then I was asked questions whilst my father stood and listened. I tried to turn the tables on them and said that my father was the doctor and not the man who wanted to deliver me to the clinic. They should keep him there. The clinic personnel tried to persuade me to stay but I refused. It took three to four adults to drag me to the closed ward as I put up such a fight. In this way, my father committed his daughter for the first time to the clinic, a step that from his view-point was absolutely necessary.

First clinic experiences with medication

At that time it was crystal clear to me that I didn’t want to take medication; therefore it was necessary to force me to comply. In a psychotic condition, a patient believes that everything that he or she experiences has its own validity and other people must also be able to comprehend this world. This can be a monumental strain on relationships with the family. It’s comparable to the fantasy world of a child. A mother can encourage a child to come to the table and eat a meal by behaving in a sensitive way and weaving her wishes into a game. In this way, the child can be led to do what the mother wants. The same applies to a person with a psychosis. If there is a feeling of rejection and an unwillingness to understand the person involved, the insecurity and fear are increased. Medication should reduce this anxiety, assuming that the patient is prepared to admit that an illness exists, which is not always simple.

I soon came to the realisation that I could change something for myself, even if it was not possible to alter other people, who for me represented an impregnable authority. If I was to survive, I had to co-operate. So, I swallowed large quantities of tablets (I remember 12 tablets per meal), even though my main aim was to reduce the dose as soon as I could. I saw my illness and suffering only in terms of the effects and side-effects of the medication: nausea, a dry mouth, sensitivity to the sun and all the symptoms that accompany a deep depression, such as lack of energy, pleasure and interest, sleep disturbances and, at the same time, continual desire for sleep, backache and so on. I could have kept the tablets in my mouth and spat them out in the toilet but I never did. Somehow I always hoped that the pills would help me.

Home again

As my parents brought me home again from the clinic, my first task was to cope with the daily routine and to find my way back to a satisfying future. As I’d lived for over twenty years as a child at home and had no close circle of friends and relationships of my own, I was completely dependent on my parents. This I found very unpleasant. Most of all, I wanted to be financially independent, which was a long way away. The simplest chore, such as getting up and dressing, was an enormous effort for me. My mother encouraged me to come walking with her. I could only move forward at a snail’s pace and wanted to rest at every bench. I found my father almost unbearable and could hardly sit down with him at the same table. As he was seldom at home during his active working life, somehow I managed to get through. When I tried to work out exactly what it was about him that irritated me so much, I could hardly find a reason. Of course, I would have loved to be as accomplished, successful and immune to stress as he was. He was unable to understand why I was so irritable and difficult to be with. It didn’t occur to me to change the psychiatrist—after all my parents were contributing to the costs and he was a friend of the family—although he wasn’t really to my taste. However, I tried to avoid the visits and finally told my parents that he didn’t suit me.

Soon my parents had had enough of my hanging around the house and my father thought that I could work as a nursing assistant in the hospital. As he himself had worked about 120 hours in the week when it was busy, he thought that a full-time job was reasonable and could be expected of me. By now I had found another psychiatrist and he convinced my father, on the basis of vegetative neurological tests, that this sort of job was impossible, that I was suffering from a provable illness and not lazy or simply imagining everything. My father was convinced that I had a dementia and would slowly but surely deteriorate intelligence-wise. He expressed this concept to my psychiatrist and again made me feel angry and hate him, emotions that I always tried to rationalise and diminish.

Training for a career

In the meantime, my psychiatrist had convinced me of the necessity to continue to take neuroleptics (anti-psychotic medication) regularly and my state of mind had slowly improved. I worked as a nursing orderly, consulted a career’s officer and applied to a school for physiotherapy. On the advice of my psychiatrist, I didn’t