A most precious thread

Simon Champ, BA, GradDip(Vis. Arts)

Australian Mental Health Consumers Network, Rozelle, New South Wales, Australia (in 1998)

ABSTRACT: For me schizophrenia severely ruptured the relationship that I had enjoyed with myself prior to the illness. My sense of being in the world, my thought processes and, indeed, the very way my senses perceived the world would go through involuntary changes. I was plunged, at times, into a confusing and frightening world ruled by my own paranoias and delusions. Living with the ever-changing experience of schizophrenia over 23 years has changed my relationship with myself many times and in many ways. In this paper I want to describe a few of these changes that have helped me deal with schizophrenia and to reveal a little of an ongoing communication with myself that is a large part of my process of recovery. The nurses I most valued at that time were those who, rather than imposing their reality on me, helped me to explore where reality and well-being might exist for me.

KEY WORDS: consumerism, personhood, recovery, self.

In Eastern religion there is a metaphor that says that one cannot step into the same river twice. Just as there is, in a sense a new river, changing from moment to moment, so the flow of perceptions, thoughts and quality of being that is the experience of schizophrenia is in constant flux, evolving and never quite the same. There may be patterns to my delusions and remissions, but each time I am psychotic the delusions change, perhaps informed by the real events of my life. Schizophrenia continually affects me in new ways, changing in its intensity and forms. At times it has seemed to have currents and seasons hut I have learned that it has no rules. I have learned that there is not one strategy for minimizing the impact of the illness, but that my interventions need to be different and sometimes used in conjunction with one another.

UNCERTAINTY

With my first major psychotic episodes came many questions that have stayed with me in one form or another through all these years. I sometimes think that professionals underestimate the psychological dislocation caused by even a single psychotic episode. If your mind has played tricks, making you believe delusional thoughts, hearing or seeing things that are not real, then the first time you go into remission there can be a profound crisis. Prior to developing schizophrenia the workings of my mind had been unquestioned. Suddenly, I was being told by a psychiatrist that I could not trust my thoughts and senses. I felt that my mind had betrayed me. How could I ever trust it again?

If the realities I had lived in for some months were unreal, how could I believe that the reality that I was being addressed in was not another delusion? In the doubts and confusions of that period of adjustment, I was profoundly troubled by the implication that somewhere there must be states of mind that were ‘normal’. If I had been 'insane' where was 'sanity'? As I looked out on the world after my delusions it looked a very strange place with its starving millions, threat of nuclear accidents, ecological crises and the surreality of consumerism and popular culture -- with its violence and materialism.

The medications had changed how my very being felt. They dulled my thoughts and robbed me of familiar emotions and feelings. The post-psychotic world seemed colourless in comparison with the world I had known before becoming ill. To try to decide what was normal or sane was like negotiating a foreign city without a map. I felt like a stranger to myself.

Over the years, I have come to realize that there is no 'normal' state. Rather there are cultural conditionings and consensus views on what constitutes reality. Instead of these, I have sought states of mental well-being and ways of being in life that are meaningful for me. But in the confusion of my first episode, I searched for measures of sanity that were the opposite to the states of illness I had known. That search for some measure of 'normality' was doubly confusing as each health worker I encountered would tend to see the indicators of my progress differently. I had yet to learn for myself just how arbitrary are the standards by which people who do not experience a mental illness measure sanity. Just as many value judgements were inherent in my treatment at the hands of health professionals, and in the measures they used to assess my quality of life.

INHABITING REALITY

Beyond the crisis of deciding which reality I would inhabit and wondering where sanity lay for me, the other profound challenge to my relationship With myself came from lack of help to integrate the material that had manifested in my psychotic states. To go into remission after a psychotic episode was to gradually realize what I had thought, believed and done while I was ill. Gradually my memories of events would return and I was faced with seemingly bizarre, embarrassing and sometimes frightening thoughts. The first few times, I had a hard time coming to terms with what had passed through my mind or how I had acted. It was like recalling a nightmare, except that I had lived it out by manifesting it in the world. My thoughts and actions seemed so out of keeping with my character as I had known it that it was very hard to accept that I had actually experienced them. With much pain, I had to realize that these thoughts and actions were my own, even if they arose out of unknown places inside me.

I have learned over the years that it is only by owning and embracing the strange world within from which schizophrenia arises that I have any chance of controlling its manifestations or preventing it from overwhelming me.

If a person has a powerful dream, particularly if it is a frightening dream, they tend to share it at breakfast with family, lovers or friends. Talking about dreams is an acceptable practice and sometimes provides psychological insights that can diminish some of the fear the dream holds for the dreamer. However, symptoms of mental illness so frighten our colleagues and family that the contents of delusions are still rarely shared or explored. The domination of the biochemical theories of illnesses like schizophrenia have further stifled discussions about the often frightening content of psychotic episodes. As a result people with schizophrenia are often encouraged to repress the fears they feel from their symptoms or have the whole experience lost in the mental fog of higher doses of medication. I found that I needed to talk about the contents of delusions to dissipate the fear they held for me. The best staff allowed me to go over my psychotic experiences gradually diffusing the power they held over me, and they helped me to integrate my delusions into some sense of being whole and earthed again. I desperately needed to understand what psychosis was and to extract some kind of meaning from my experiences. This I could achieve only by talking about my experiences many times over.

RADICAL CHANGE

If the onset and early years of living with schizophrenia radically changed me, my relationship with myself was further changed by the treatments I received. When I was psychotic, I often perceived hospitalization and medication as a threat. Sometimes, as in one delusion when I believed that the hospital I was being held in was a concentration camp where I was going to be gassed. I was terribly traumatized by the very interventions and professionals that were supposed to be helping me. Even when I went into remission, I often thought of my treatment as a punishment for being different.

The experience of hospitalization gave me lasting negative messages that took me years to work through. Those messages were that I was unacceptable to society, that I was bad and that I had little power of my own. For me, these feelings are forever symbolized by the euphemistically called 'time out' room. Just at those times when I was least able to cope with the terrible fears I was experiencing because of paranoia, I was in solitary confinement away from other human beings who might have reassured me or genuinely cared for me. Such experiences taught me that society wanted to lock away and isolate what I was most afraid of, extreme states of mental anguish. I firmly believe that the act of putting me in solitary confinement in itself confirmed my sense of being an outsider. The experience of being locked away left me bitter and deeply alienated as did the rest of my first hospitalization. Solitary confinement enhanced my feelings of guilt and the shame I felt at having a mental illness.

During the early years of living with the diagnosis of schizophrenia I had to struggle with my self-image. I was constantly putting myself down and having my negative feelings reinforced by the stigma society confers on people who have a mental illness. At times I even believed that my schizophrenia was a punishment from God for sins I had committed but could not remember. This idea was reinforced by some Christians I met who told me that schizophrenia was, indeed, a punishment for sin. Some Christians went further by telling me that my illness was a form of possession.

Such experiences were certainly a low point in my life but even at such times I somehow managed to keep a journal, a record of my days. Now as a national speaker on mental health issues, I consider the words I use carefully and try to encourage politically correct first person

language when talking about consumer experiences. So it is with much sadness for my younger self that I read my constant descriptions of myself as being 'a schizophrenic' in the pages of those early diaries. Now if I have to consider my illness as relevant to who I am, I would say 'I am a person who experiences schizophrenia'. Never again would I just label myself 'schizophrenic'.

Beyond my ideological sensitivities, what saddens me looking back to when I called myself 'a schizophrenic' is that in those early stages of adjusting to schizophrenia my image of myself was dominated by the fact that I experienced the illness. For some time my illness was central to my identity. I felt the illness would determine my life and most of my energies were consumed in a daily struggle with positive and negative symptoms. Sadly I became my illness and disempowered myself by allowing myself to be described as a 'schizophrenic'.

So often I recall the period when all that changed. This was the beginning of a long period of change in which I came to understand my relationship with schizophrenia. At the time, I was so depressed about my prognosis that I read about schizophrenia. My reading led me to think that I would live my life as an experiment. That is, I would try not to absorb the negative messages about people who lived with schizophrenia that I was reading about, but would try to find out for myself what this diagnosis could mean for my life. This was the beginning of a tum that led me to re-establish my life and to find a more accurate sense of self.

CELEBRATION

For some time this change actually took the form of seeing people who experienced schizophrenia as being special. For me, they were specially sensitized individuals who could experience dimensions of human consciousness 1and spirituality that others, not affected by schizophrenia, were not privilege to. At the time, I wore the label 'schizophrenic' with pride and as a mark of distinction. I began something of a one-man crusade to redefine the term and to give it dignity. 

During this period I celebrated the culture and history of people who had experienced schizophrenia and generally had a much more positive image of myself. However, my image of myself was still dominated by the fact that I had schizophrenia. In reality I was having episodes of my illness every 3-6 months. Often I would proudly introduce myself with these words, 'Hi, I'm Simon and I'm schizophrenic'. My intention was to challenge the people I met to come to terms with schizophrenia. I ended up redefining myself in the process.

POLITICAL REALIZATION

Gradually, I came to the political realization that it was damaging to refer to myself as 'a schizophrenic'. As time passed, extended periods of remission, study at an art school and being involved in raising awareness about schizophrenia gave me a much fuller life and I had a greater sense of control over my symptoms. I was recovering my personhood, and saw my illness as an influence on me rather than as something that defined me.

At that stage, I began to see that while I might not be able to always control my illness, I could control the attitude I had towards it. I began to see strong links between my quality of life and the attitude I had to my illness. I became increasingly concerned about the language and attitudes of members of the Schizophrenia Fellowship of NSW, an organization I had helped start. The constant reference to people who experienced schizophrenia as 'sufferers' and 'victims' of illness seemed offensive to me. While I was the first to admit that schizophrenia had dominated my life for many years and that it could be a terrible disease, I also knew that I had only really made progress in my own recovery when I stopped seeing myself as a 'victim' and relinquished more passive roles in my treatment. To me 'sufferer' was part of the language of victims and was a word that lacked dignity.

In this way, illness became an aspect of a whole me, not my core self. By changing the focus of the illness in my life, my self-management of my illness was further strengthened. I was, indeed, a person who happened to experience schizophrenic episodes but I refused to be described as a 'sufferer'.

This taught me that even the souls of people facing psychiatric disabilities can flower with hope. Hope is an essential ingredient for recovery. When I began experiencing schizophrenia it was a great struggle to revive a sense of hope in my life. I felt spiritually abandoned by any notion of God that I may have had. Life seemed hopeless for long periods and my despair was exacerbated by my constant struggle with symptoms.

So many of the images of schizophrenia in literature, films and popular media gave me little hope. Often when I met aged people who had experienced schizophrenia their lives seemed depressing, lacked fulfilment and they hardly offered me inspiration. It was only later that I

realized that rather than seeing the long-term effects of illness, I was witnessing the effects of attitudes towards mental illness. I became aware that, in their impoverished lifestyles, I was not seeing the manifestation of a kind of bum-out from schizophrenia, but the degradation of the spirit that comes from poverty, neglect, stigma, over-medication, institutionalization and lack of opportunity. At first, I did not understand, and the older patients I had seen in hospital and met in boarding houses depressed and frightened me. If I was looking at my future, I did not want to live. At that time my dilemma was that I was still afraid of death. It seemed then that the earth had become my purgatory.

Hope comes in many forms - some surprising, some hard won over the years. In the absence of hope, I tried to manufacture it. Depression came as a result of my psychosis, in part as a natural post-psychotic depression, in part as something that had its origin in the disappointment and grief I experienced. Such depressions could last months and I would desperately try to revive hope at those times. Gradually, I have learned techniques to revive hope and have used them as a resource in my life in a kind of accountancy of the spirit.

EMPOWERMENT

These inner dialogues with myself defined who I am and influenced my relationships in the world. While relationships with mental health professionals sometimes helped this inner evolution, another influence has grown in significance for me over the years. My contact with people who have experienced a mental illness has profoundly influenced my relationship to myself.

When I was first experiencing schizophrenia I would often feel alone and different. However, meeting others who experienced schizophrenia taught me that I was part of an important minority. Seeing others manage symptoms that troubled me gave me hope. It was a relief to be able to share aspects of my life and inner feelings that others knew from first-hand experience. It really helped to have my feelings validated. These friendships with other consumers helped me to become more accepting of myself and gave me valuable insights into the process of recovery.

Much has changed in mental health over the past 15 years, especially how consumers see themselves in relation to services. It has been said that 'the personal is political' and for me meeting other consumers ignited a passionate indignation at the social injustice faced by people who experience mental illness. This sense of outrage has led to something of a career for me as an adviser and activist in mental health.

It was in the company of consumers that I really began to understand how stigma, poverty and the lack of rights, services and opportunities constrained my self-concept. When I became involved in the empowerment of consumers, I was still trying to overcome the limited notions of self I had absorbed from society. Politically, consumers were stepping out of the shadows of shame and prejudice, but I was surprised at how many places inside me were still darkened by my internalization of society's negative attitudes.

They say of some depressions that they are expressions of anger turned inwards, but I have discovered that by expressing anger it is possible to free hope. As I worked through the anger I felt at the treatment I had received, I experienced a renewed sense of hope for my own life.

Schizophrenia has changed my relationship with myself and forced me to face challenges. Two specific areas of my life that went through a redefinition were issues of my identity in relation to work and my concept of my own masculinity.

In the early years of living with schizophrenia, I experienced major disruptions to my life and was unable to do any regular work. Like many people who experience long periods of unemployment, my sense of self plummeted until, eventually, I began to redefine myself in relation to work. So often in our society we fall into the trap of seeing ourselves in terms of what we do for a living rather than as who we are as a person. I had become not only a person who experienced mental illness, but also a recipient of welfare, unable to work. My sense of worth and value to society declined until I began to feel that I could contribute to life in other ways.

Now I enjoy work and have found much fulfilment in finding ways to employ my talents. But having a disability has changed the way I view myself as a worker in society and redefined the role and value I attribute to work in my life. I am certainly not alone in this transition, for in these times of high unemployment many people are forced to redefine their relationship to work through no fault of their own.

Finding myself breaking down and losing control of my emotions has expanded my notions of masculinity. I have discovered that real men not only cry hut also experience a whole range of emotions that need to he expressed to maintain true mental health, especially if one has the additional stress of a schizophrenic illness.

Many men who experience mental illness are emasculated in their own eyes and in those of their peers. I believe this sense of emasculation contributes to the high level of suicide among young men. I have found some support for this evolving concept in the writings of the men’s movement where there is a growing recognition that traditional masculinity may actually exacerbate health problems. Certainly, this is an area that requires more research.

CONCLUSION

Here I have described some of the changing concepts of self I have experienced through the many years I have been in recovery. Slowly, I have come to see that one does not simply patch up the self one was before developing schizophrenia, but that one has to recreate a concept of who one is that integrates the experience of schizophrenia. Real recovery is far from a simple matter of accepting diagnosis and learning facts about schizophrenia and medication. Rather, it is a deep searching and a questioning, a journey through unfamiliar feelings to embrace new concepts and a wider view of oneself. Recovery is not an event but a process that is, for myself and many others, a life-long journey. I am lucky that I have always had an interest in journal writing. Both have helped in my communication with myself. In closing, I would like to re-state that the best professionals involved in my care have, like me, opened themselves to the mystery that is schizophrenia. They have gained my trust, sharing and supporting my inner search for meaning and for an understanding of the relationship between myself and my illness.

This article appeared in the Australian and New Zealand Journal of Mental Health Nursing (1998) i, 54-59