Abandoned to the Streets

It's been a hard year. I would not have been able to tell you most of the time where my daughter was how she spent her days, or with whom. Carrie is a grown woman, attractive and kind-hearted; but she also suffers from the most debilitating of mental illnesses: schizophrenia. Too many nights I had no idea where she was sleeping. Part of the time Carrie lived on the street. She ate at the downtown missions and associated with the homeless transients that populate the meanest streets of the city. Like Carrie, many of them are also mentally ill. She drank with them, dressed like them, and thought like them; and she was in great peril. She started down the dreadful spiral that led to the street soon after her diagnosis a year and a half ago. No, it really started long before that for Carrie. I guess that's the way it is many times for people with mental illness. Life just doesn't go right. One of the cruelest aspects of the disease is that the sufferers so easily alienate those closest to them before anyone knows that they are ill. It effectively robs them of the love and support that are vital in dealing with the devastation wrought by mental illness. Relationships are torn apart, home and families are lost, and anticipated futures evaporate. Respect is eroded and a person is often left with nothing and no one and at a point in their lives when they are the least capable of helping themselves. If they are fortunate, there will be at least one person who doesn't give up, one person who does not retreat in the face of a mind in chaos. But trusting that person is another matter. When delusions and hallucinations implicate their loved ones in sinister conspiracies, they feel alone in the most fundamental of ways. It's understandable that many people give up hope and make decisions based on the need to ease the pain of the moment. My efforts to seek help for her were hampered by laws that demand she must be dangerous to herself or others before being committed against her will. As the months went by, the gentle soul I had known was swallowed up by the twin demons of schizophrenia and alcoholism. I became the enemy in her mind, and was therefore powerless to help her. My daughter recoiled from even the touch of my hand, and her eyes seemed empty of all feeling. Carrie was slowly killing herself and there didn't seem to be a thing I could do. The more helpless I felt, the more hopeless the situation appeared. ...I began to attend support meetings and discovered that I was not alone. I also began to learn how to be an effective advocate for my daughter. I read all the literature that I could find about the disease that had devastated our family. And I began to explore the mental health care system. An opportunity finally came to get Carrie to the Crisis Centre and I seized it. I now knew the requirements, all the criteria. It's still a difficult step for a parent to take, but no one else is likely to do it. As expected, Carrie reacted with anger and took it as proof that I was a traitor. I knew the odds were not in our favour and indeed, it did not go smoothly. But I persevered, and we did finally get a hearing. I testified and prayed that the judge would see that Carrie was a danger to herself. Thank God, he did. With her involuntary commitment, things began to turn around for Carrie. Slowly at first, as her anger abated, and then in subtle ways. Two-minute visits with harsh words turned into five-minute visits of nervous conversation. Gradually she began to take notice of the world outside her troubled mind. She started to comb her hair and take an interest in how she dressed. I didn't trust the new direction at first. I wondered if Carrie was putting on an act to impress the doctors. She may have been doing that at first. But the improvement continued the longer she was there. After six weeks, it was possible to have a pleasant conversation with my daughter again.

My biggest fear was that the hospital would release her too soon. Her new medication was doing its part, but Carrie needed counselling and education before she faced the challenges of life on the outside again. I knew if she were released prematurely, she would discard her medications, as she has in the past, and return to alcohol and eventually to the streets. It's a familiar pattern with schizophrenia. Her father and I met with the doctors and with the social workers and found them to be receptive to our concerns. The system is giving Carrie a real chance this time, and she is making great progress... No one I've talked to expects this to be the end of Carrie's problems. I don't either. She will need help to make it on the outside. She will need a family who cares. Carrie will have that. She will also need a community that does not turn away from those with mental illness. She will continue to need dedicated professionals who will help her learn to deal with the complexities of her life. But in the meantime, I have my daughter back. Carrie hugged me yesterday and said, "I love you." Treatment works.
WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

Accused of Witchcraft
Hi. My name is Jennifer and I was diagnosed with schizo-affective disorder 10 years ago. I was 19 when I was first diagnosed with schizophrenia, and was admitted to a mental institution. Life has been a battle for me since I was 17, but it has also been very good much of the time and I feel blessed about that. I believe that my faith in God is what has kept me going, and saved my life, and still does, as well as some wonderful friends in my life who motivate me and keep me going. I also know that medication is imperative to leading a normal productive life, and I thank God for it and for the doctors who understand. When I was 21, I was very unwell, and my mother was beside herself trying to help, but she didn't believe in medication; so she was talking to one of her cousins who told my mother that I wasn't sick, but that I was possessed by demons. She came up from Detroit, USA to visit her family, and while she was visiting, she came over to my mom's house and tried to cast the demons out of me. She also said I wouldn't need medication anymore, so I listened to her and went off it. All that happened was that I became worse, and then everyone blamed it on me. I even jumped in the freezer downstairs to hide from them. They also looked through my room, and took all the things in my room that meant a lot to

me, that they felt were given to me by relatives in my life who were involved in witchcraft, and burned them. I was upset about that, but I was too sick to even really care at that point. Once I got back on my medication, I did feel a lot better again, and I went to college for the first time. I was very happy about that, and I did very well for quite a while. It took me a long time to stop believing that I was evil or something, but I know now that I am not possessed by demons, and neither are other people who are plagued with mental illness. It's just a condition and people are ignorant, or they can't understand, because they haven't experienced what we have. Presently, I am going to college for upgrading, and I plan to take Early Childhood Education in September. I am doing great right now! I would like to say to anyone who suffers from mental illness, and your families, and anyone else: don't be discouraged-God is always with you, even when He seems so far away; and do not let what you cannot do interfere with what you can do. God loves YOU! Love from a friend. P.S. Live one day at a time.
WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

The Joy of Recovery

[Remarks to a conference by a Philippines family member] ...I stand before you as an advocate and torchbearer for mental health and the role of psychosocial rehabilitation with the family at the core of the intervention. That, in fact, patients who suffer from chronic depression, emotional dysfunction can be well even after a long wait of more than two decades. In my case, a sister, a professional who suffered the pain of psychosis and not unlike Rip Van Winkle woke up to our world after sleeping and not remembering what happened and why. This happened in 1972 while in a special training on drug addiction rehabilitation. My sister had a nervous breakdown which caused her to cut short her stay in England. Her companion psychiatrist suggested she return home without any treatment, viewing the psychotic break as primarily culture shock. Her swift return became a nightmare to the family. No one had an explanation on the whys and wherefores of her mental aberration. Her behaviour was such that she could no longer effectively discharge her duties and functions as head of a child welfare institution. A priest psychologist described her bizarre behaviour as "climbing the walls". For example, she would eat morsels of food found on the floor. She prayed a lot, read the Bible and gave away her food, clothes and took little care of how she looked. Most of all, she lost her capacity to communicate verbally. She would just nod or shake her head or just smile. She shunned eating with the family, and more so attending social functions. It cost her her job. My mother tried to get her cured or healed through various indescribable means. She blamed us for not caring. She was quite right for we were uncomfortable with the situation and did not quite know

what to do. She was just there, a sick or unwell sibling. None of us knew how to deal with the problem until now. In understanding the pain from inside, we have to realize that the person in pain does not see the rules and regulations of this world applying to her except as to their ability to interfere with her internal world. The exterior world, that regular individuals deal with day to day, holds little or no interest to her. Punishment and pain are less likely if she does what the family decides she should do. So she does these while dealing with the world that is more critical to her at the time. Without medicine this is usually the inner world. Skills don't necessarily have to be retaught like to a child who has never learned them. But the inner world must be made peaceful enough for the patient to deal with the less critical outer world. The next thing that must be understood is that the inner world of the patient has the upper hand. This means that no matter how much the family may want her to deal with the outside world, unless the patient is good and ready, this will not happen. The third thing that must be understood is that the inner world is as real if not more to the patient as the world most people deal with. There are terrible physical pains, there are screaming, threatening people. And it is all exacerbated by a real world that adds to these pains with drugs that make you feel awful, leave you helpless and in psychic pain and stress fight or flight? And one often enough gets fight. "Leave Me Alone" "There is nothing wrong with me". The fourth thing that must be understood is that the patient, when she is doing "nothing", is just sitting trying to deal with this inner world, without guidance or help. The fifth thing is that patients need evidence as much as regular people. Will her behaviour be evidence that she is good or not? When she gets approval and affirmation from family, it means being good. To do otherwise is to be perceived as evil. The sixth thing that must be understood is that the world of psychosis is very complicated. She must learn to recognize that she is powerless against them and does what needs to be done to reduce the pain inside through medicine, rest, distraction, biofeedback, etc. A close friend of my sister volunteered to accompany her to Dr. Lourdes Ignacio to try once more, having failed with two previous psychiatrists. She was distracted by weekly special trips with a sibling every Wednesday, where bonding must have taken place, going to church, eating out, going to the movies and visiting with family and friends. Weekends were for me to drive her to places like church, cemetery and shopping malls and connect her to places and people she had lost in her inner world. She took her medicines assiduously supervised by a string of caregivers other than family members. She saw the psychiatrist weekly, later less and less. She was sick at 39 and got well at 60. She has since travelled abroad to Asia and the US and parts of the Philippines. She works, is active in church and community organizations. She does ballroom dancing and enjoys going to the theater and attending parties. Up to now no one could explain why she got sick. But we can explain why she got well. It is because we understood her pain and she was ready to face the rigors of recovery. The family knew that unless we were part of the solution we would continue to be part of the problem. It continues to offer moments of blessing; moments of celebration as I witness the joy of my sister's recovery.

I have come up front to speak before you as a testimony that there is hope, and when you have hope you have everything, for without hope there can be no faith and no charity. Sometimes it takes a long time. Ours took 21 years.
WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

Still Learning
This story, by Penny Frese, is excerpted from her talk at the WFSAD Biennial Conference in Kyoto 2002. Like most people, I grew up knowing almost nothing about mental illness. No one I knew was mentally ill although I had heard my parents speak in hushed tones about some distant relative who had to go to the hospital for a while and how sad it was. His wife had divorced him. There was a man in my neighborhood who wore several coats in the heat of summer and talked aloud to himself. When we children saw him outside, we crossed the street and then secretly made fun of him. That was what I knew. Fred and I met in graduate school the spring before my final year. He was on the science side of campus and I was on the art side. We became friends over the summer when most of the students had gone home and we stayed on to work on our dissertation proposals. I admired his intellect, his "vacuum cleaner mind", his deep faith, and his wonderful sense of humor. I could speak to him about anything and he seemed to understand. It was in the fall, just before the new school year resumed again, when I learned Fred's secret. In some ways I forced it from him. I had noticed that he never spoke of personal things and someone had warned me darkly that he was divorced. It seemed strange to me that he never mentioned this and I was suspicious about his intentions in our relationship. The next day we went for a walk in the forest which surrounded our campus. When we had walked about an hour, Fred began his story with a deep sigh. He told me that at the age of 26, as a Marine Corps officer, he had had a breakdown and had been diagnosed with schizophrenia. Other breakdowns had followed, and he still wrestled with the illness. His marriage had failed because his wife was also diagnosed with schizophrenia. There had been a child, a little girl. This was not what I had expected to hear. After the word "schizophrenia" everything got blurred. My heart pounded and I felt like I could not breathe. All I could think was "I have just walked for an hour into the woods with a man who is telling me he is insane. Oh, God, get me out of these woods alive!" That was 25 years ago. We are still very much alive, but I am not yet sure that we are out of the woods. Fred and I were married in the spring of the next year. But I still had a lot to learn; in fact 25 years later I am still learning. Coming to terms with mental illness in our lives has been a process. I suspect every family who must cope with this illness goes though a similar one. I would like to share with you some things about that process so far. You may find they resonate with your own experience. Or that you have some insights to share that I have not yet attained.

Like many people my first response to Fred's illness was denial. Of course, I could not deny that he was diagnosed with the illness. That had happened ten years before and it continued to give him problems. I entered into another stage of denial: bargaining. I thought that perhaps if I were as good a wife as I could be; if I was loving and faithful, supportive and did not complain, that God would take this illness away. I did my best and it took me about two years to realize that the bargain had never been struck. I did my part, I thought, and the illness remained, and I was not very happy about it. When Fred developed his "Aspects of Coping", he listed denial as the first aspect. When he showed me this, I told him that I did not think denial was a way of coping. "Yes, it is," he told me. I have come to understand that denial is for many of us our first response, our first coping mechanism. It is not a good one, but it is often the first. There are many reasons for this. Mental illnesses are long term. For years, families have been blamed for "causing" the illness. There was little hope for recovery. Surely, our loved one, our family member could not be mentally ill. It must be something else - lack of will power, a character flaw. We are good people, why would this happen to us? Not only families try to cope by denying. Whole peoples shun the need to deal with mental illness. We hide the mentally ill away in institutions where we cannot see them, and when we cannot hide them away, we turn away as we walk by them in the street. We exclude them from medical insurance; we cut their services when the economy is poor. We cannot talk about it, and if we do talk about it, we blame someone else for their condition. Unfortunately, we are learning the tragic, and sometimes deadly, consequences of our failure to face these illnesses, especially in our children. Eventually, I had to face the reality that there was mental illness in my family, it was not going away, and I was going to have to deal with it. That was the beginning of my recovery. Penny Frese has a Ph.D. in psychology and is Past-President of Summit County Mental Health Association, Akron, Ohio, USA. She is married to Fred S. Frese, III, a former Director of Psychology, Western Reserve Psychiatric Hospital. She has toured extensively with her husband giving valuable advice to family members and the general public.

WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

The Dream of Hope House

By Jess Mackintosh We all have dreams, big dreams, small dreams and many impossible dreams - it's the same with wishes - we wish many things, sometimes for ourselves - more often for those we love. And sometimes when the dreams and wishes become one and materialize, it's almost too much to believe - that this dream, this wish - has come true! When WFSAD asked me to write an article about Hope House, I knew that all of you reading this would understand how desperate I became to realize my dream and I sincerely hope that this will

encourage those of you, who are still dreaming, to pursue the dream and make it happen-make it come true. I have a daughter, Lindsay--my third and much loved youngest child. Her story is sadly so typical. She was a very bright, attractive, high achiever--both academically and on the sports field, well liked by her colleagues, a graduate in physiotherapy, when she became ill with schizophrenia. Like other families who have experienced similar adversity, we were devastated. We knew nothing of mental illness - there had been no family history, why us? Lindsay was in and out of the local mental hospital. Sadly she was resistant to the medication, and her stays became longer and longer. Her last admission was for 18 months. After she had been hospitalized for over a year in the high security section, the team of doctors caring for her suggested a one on one companion. The norm for her had become very ill, and they wanted to break this. After receiving permission from the Department of Health, I found Zainab, a young ex teacher, who felt she had a calling to look after those incapable of looking after themselves. This was the start of Lindsay's new life. Three months later, she was moved to a less secure ward and Zainab started teaching her handicrafts. This became her savior. By using the crafts, Lindsay learnt a tool, a tool that she could use to help with one of the most debilitating symptoms of schizophrenia, auditory hallucinations. Three months later Lindsay was discharged on the strong recommendation that she should stay in a secure environment with 24 hour care. But where? Cape Town offered nothing in this area. I heard that in Port Elizabeth a former social worker was running a group home where the residents were occupied productively during the day. I flew to meet with him and came back motivated - this was what Cape Town needed, what so many young sufferers of schizophrenia needed, what my daughter needed. I can remember the very first meeting in my lounge, a group of concerned people, discussing how we were going to make this happen. I remember us choosing the name "Hope House Trust" for our organization, working on the business plan and eventually the fundraising. I felt so proud of the group - two of us the mothers of sufferers, the rest wonderful friends wanting to help - a teacher, a lawyer, an accountant, friends of different ages, different walks of life. We got the immediate support from the psychiatric hospital and their psychiatrists. At many of the fundraisers, we spoke about mental illness, educating the public and making them aware of the high percentage of people suffering from mental illness - hoping to make them understand and not fear the mentally ill. Everything started falling into place. In October 2000 Hope House Trust was registered as a charitable Trust and thereafter as a non-profit organization. In January 2002 we received Government approval as a public benefit organization. We continued fundraising. We commenced our search for an ideal house, facing many disappointments. And then in December 2001, we bought 32 Peak Drive, Pinelands, our first Hope House! We did not have enough money, but we could not wait any longer and knew that somehow we would find the money. On 15th July, after extensive renovations our first female residents moved in. It was a very emotional day. We are very blessed with Hope House. We have two homes on the property. The old family home where our 4 female residents stay and a substantial cottage, which accommodates our 3 male residents. The property has a lovely large peaceful garden. Our full time housemother, Gill, stays in the cottage. She is like a mother, ensuring that the residents are cared for and supported. Zainab comes in daily to assist the residents with handcrafts and other forms of occupational therapy. We are putting her through her diploma in auxiliary social work and she loves her studies. Her work is very important as she keeps the residents motivated and busy. We have the support of Valkenberg Psychiatric Hospital and their Senior Occupational Therapist has used Hope House in her outreach program. The house is run on a strict but simple routine. Residents are encouraged to assist in the household chores, as well as in the garden. We have encouraged the

residents to feel that this is their home. There is a wonderfully happy atmosphere - the girls in the activity room, sewing, laughing, with the radio blaring the latest musical hits and the male residents working in the garden, cleaning the pool. Domino, the resident dalmatian adds to the family feel, as does Lady, the mother of six adorable kittens and the budgie, Blue Boy. Recently we asked the residents what their feelings were about Hope House - here are a few replies: Maurice: "I enjoy the company and being cared for." Rene: "I enjoy living in Hope House and I have learnt a lot - sewing." Bekki: "It's a lovely place to stay and the people are very special." And my Lindsay: "I feel very privileged and lucky to stay in Hope House, and I want to say thank you, and I also feel I have grown from the experience." And so it has happened - the dream has come true - with the help and generosity of so many, many people, Hope House is now a reality - a home where people suffering from chronic schizophrenia live in harmony, support each other, and are treated with the respect they deserve. I visit Hope House a few times each week and always have a humbling and wonderful feeling - the kind you want to shout from the rooftops: "ITS HAPPENED, IT WORKS, THANK YOU!!"

You can write to Jess Mackintosh, Chairperson, Hope House Trust, c/O WFSAD or email her at: hopehouse@kingsley.co.za
WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

Dealing with Schizophrenia: My Path to Understanding

By Maria Charina Pinky Rodriguez
I always wanted to understand my illness, be with other sufferers of schizophrenia and have the support of a psychiatrist. Most of all, however, I wanted to be close to my family - I have a sister and three brothers. I am only close to my mother who, unfortunately, has developed Alzheimer's disease. I consider my doctor, Dr. Marissa de Guzman, my best friend. When she invited me to attend a twoday conference hosted by the World Association for Psychosocial Rehabilitation - Philippines, it was an honour to accept. I asked my sister, who was the first of my siblings to reach out to me, if she would come with me to the conference. The World Fellowship for Schizophrenia and Allied Disorders President at the time, Jim Crowe, was one of the speakers at the conference. This was my first introduction to WFSAD. The conference and speakers were so inspiring to my sister that she decided to form a family support group. With the help of my doctor, she did just that. I met a friend who also suffered with schizophrenia and we found others to join our group. We were now five in number. Dr. de Guzman was the organizer and visited our group to speak about schizophrenia, despite the four-hour drive. My sister acted as the leader for our group. Her role was to find community links and speak to family members. Dr. de Guzman and my sister both spoke to the rest of the family. These conversations all went very well.

My problems began when my sister had to leave the Philippines to be with her child overseas. We continued to meet as a group, but we could not find anyone to take over the position my sister had vacated. I was working through depression with my doctor and unfortunately our support group could not continue. To deal with my depression, my doctor suggested that the solution could be in prayer. My prayers were slowly answered through the internet. I was able to find a lot of information on schizophrenia and gained a better understanding of my illness. I also used email to communicate with my brother and sister abroad, as well as with WFSAD. I was impressed with the responses WFSAD sent me and the fact that they said my sister loves me and cares for my well-being. This really made me happy. When WFSAD sent me pamphlets, I felt like a real person again. I immediately went to see two of my past local psychiatrists and gave them copies. They liked them too and are willing to give us referrals. One of the psychiatrists is part of another world organization and invited me to their conference. I also now felt comfortable enough to approach a friend of my sister, who is a pediatrician licensed to prescribe anti-psychotic drugs. She is also a family member and wanted to renew her commitment as a leader. I had found a replacement for my sister for our group. Throughout all this, I am starting to become closer to my father and brothers as well. My mother is also getting better. One of my brothers was so impressed with my recovery that he suggested I speak to the public about how family members like himself can help their relative who suffers from mental illness. My whole family no longer feels shame. Neither do I. Maria Charina Pinky Rodriguez
WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org

A Million Stories
WORLD HEALTH ASSEMBLY 14 MAY, 2001 Opening Day Keynote Address to Ministers of Health Diane Froggatt, Executive Director, World Fellowship for Schizophrenia and Allied Disorders. Imagine you had a son or daughter in their late teens or twenties. Little by little you realize that things are not right, in fact they are very wrong. He is talking to himself; she is staying in her room curled up in the blankets. He wont go out in the day because he thinks people are threatening him. She refuses to eat because she thinks you are poisoning her. He doesnt seem able to think straight; she habitually gets up in the middle of the night and turns the radio on loud to try and drown out the voices. Everyone in the family is uneasy, then alarmed at what they hardly dare to acknowledge a fearsome possibility of schizophrenia, of mental illness. You stand at a crossroads. Will you seek treatment for your loved one? Is the stigma so entrenched that you wont? Will you get treatment if you seek it? If you get it, will you be able to get help for yourself to enable you to manage the new reality. Will there be any help in coping with a person with a disturbed mind in the bosom of the family?

Dont forget, they are closing the mental hospitals, not because there are no more new cases of mental disorder but because these hospitals are a symbol of all that is restrictive of the old "custodial care". And we know that many are restrictive and many are still custodial care, although many are offering valuable state of the art services. You are educated. You understand about such conditions, or think you do, but can you come to terms with the emotional desperation that will reveal itself as a physical sense of unease, even a physical pain in your heart? You will never have experienced anything like this before and you will rarely have felt so uncertain of what to do. You even feel helpless and ill equipped. And this feeling is of long duration, maybe for many months or years. I know this for I have experienced it and know thousands like myself. On several occasions I have met psychiatrists in clinical practice treating schizophrenia whose own teenage children have developed this illness. At each of these moments those professionals said "I thought I knew all about mental illness now I know that I knew nothing. So let us continue to imagine the same scenario but move into the experience of one family, my family the story of a million families. I have thought long and hard about how I could possibly get across to you how it feels when you finally become absolutely sure that your son is in the midst of psychosis. We had gone to the theatre, we were watching a play. In the interval the shows director came out on stage and introduced an Arts Delegation from the Soviet Union who were visiting theatrical productions in Canada. Three rather burly men stood up, smiled and nodded their heads to the audience. At the plays end my son turned to me and said: "The Russians are here because of me." He appeared anxious and nervous and kept looking over towards where they had been sitting as we left the theatre. My heart seemed to plummet into the base of my stomach and a fire of anxiety swept over my body. Later, when my husband, my daughter and I began to learn about psychosis, my deepest wish as a parent was to understand what my son was feeling and what he thought was going on inside his mind to be able to share his experience, even if it were vicariously. When you have a neurotransmitter disorder, a disturbance in your brain, schizophrenia, you find confusion, even terror, in the average bustle of the average day. Filtering out all the messages coming in becomes an intensive struggle that never lets up. Changing the perception of a terrifying life becomes impossible. My son sought respite and solitude and often could be found, late at night, sitting at the kitchen table, silently drinking tea. On one of these occasions I joined him and thus began our "late night talk shows". If you had been able to "tune in", you would have found it compelling. "Look at my hands, Mum. Its horrible". He stretched his arms out to me and looked down at them turning them palms down, then palms up. What could he see? "The meat, the muscle, the blood, its all there and it reaches half way up my arms When I was in the hospital my feet and legs were like it too and the further it stretched into my body the more terrified I was. If it would take over my whole body, then life would be over for me." This was his reality, feeling that his body was disintegrating meant complete and permanent madness body and limbs looking like something out of a medical text book or a road accident. I had to tell him that I didnt see any of this. His hands were like any mans hands and his arms were firm and strong. "Does it stay like this for you?" I asked him and he replied that he looked at his hands to see how well or ill he thought he was. And he told me how sometimes it was as though his whole body was encased in a crust of paint making him feel rigid and constricted. And he had strange ideas that I sometimes could not grasp. He could not take a shower for fear of integrating with the water and washing his body away. How can you imagine what this would be like?

And so night by night, month by month, year by year we talked - or we didnt talk - under the light of the kitchen lamp and this picture of us is ingrained in my memory as, despite continuing treatment, the illness relentlessly continued. I learned what it is to truly listen to someone and to wait as long as it takes to hear what he has to say. I learned to restrain my own need to be heard in favour of my need to understand. He truly felt that he could take someones persona into his own; that he could know the feeling of others and that he could transmit his thoughts to others. At times during the day when he would stare uncannily at me, I would know that he was trying to tell me something by some kind of thought transmission. He told me that for him a walk along the street carried the continuing apprehension you might have if you were always about to meet a ferocious dog. One day I could not take him for his regular appointment at the doctors. We planned how he would go by bus. Not long after he set out I heard the front door open and he was back. What happened? "I got on the bus", he said, "but everyone was staring at me. Their eyes were piercing me. I couldnt stand it so I got off and came home". There were months of recovery from acute psychosis, that would be dashed by exacerbations of illness and months in the hospital, which would again be replaced by more months trying so desperately to get better. Altogether my son has had twelve hospitalizations all lasting over two months, some as long as four in a country where it is often difficult to get into hospital and where discharge from hospital often comes much too soon. He has needed his family like we all do when we suffer serious illness, like we all do, all the time. And his family has stood by him. During his early hospitalizations we would visit him daily. He says he still remembers vividly me walking down the length of the ward to be with him wearing my distinctive woolly coat! If he still remembers now then the familys love must have been very important to him. And I recently spoke of this to La Nacion in Buenos Aires where families are not allowed to visit for several weeks after their loved one is admitted to hospital. How inhuman! As his friends dropped away from him the family tried to take their places, becoming his peer group. As his ability to manage his life in society drained away, it was his family who took him to the theatre, took him to the country, took him to his doctor, his dentist, and as he drifted further from a coherent social life it was his family who bought his clothes, his shoes and continued to care for him. But he was a man now and we had respect for this and while he relied upon us for so much, we had to recognize his adulthood and in some way preserve his self respect. This, of course, is not my story alone nor my familys story alone; it is the story of hundreds, thousands and millions of families who have been faced with the same. And you can find us, the families, in all parts of the world. And we have faces in Tokyo and Toronto, in Bangalore and Budapest, in Ankara and Kampala. And many times we have suffered abuses from words and physical action and yet our love, our duty, our responsibility and our hope for our loved one carries us through these destructive times. Two months ago my friend Mehmet, who lives in Izmir in Turkey, said "I am not under the ground yet. I am here and I will fight on for my son." What stamina he and his wife and others like them have what courage to accept what they must do whether in violence or in quiet. Sixteen years of a disorder. It robs your family of the lives that might have been, yet gives you something special back and makes you a person you would never have been if schizophrenia had not come to your family and to your first born. For many years there appeared to be no help and because I felt helpless I joined the family movement and went to work to fight for better care and to try to alleviate some of the suffering of others. But in the first years I could not share with others because of

the strong grieving emotions that welled up if I should talk about it. Only later have I become and advocate for the mentally ill and their families. And since 1987 I have had the honour to run the World Fellowship for Schizophrenia and Allied Disorders as its executive director; an organization incorporated in 1986 by Bill Jefferies who received the Order of Canada for his work with families whose loved ones had developed schizophrenia. The aim of the organization is to strengthen families through empowerment; to help build self help organizations which will assist families to learn about these illnesses and be skilled enough to work with their relative towards stabilization and improved functioning. Now, 25 countries have national family self-help and advocacy organisations. You can see if your country belongs to the World Fellowship at our small display outside. And at least 25 to 30 more countries have regional or local family organizations, some of which were founded with the help of WFSAD. The family movement is already nearly 30 years old and the oldest family organization comes from Japan. Its called Zenkaren. It is also one of the largest, as is the National Alliance for the Mentally Ill in the United States. Both these organizations count themselves among our membership. And the smallest organizations are in Uganda and Kenya, where brave people, Walunguba Thomas, a psychiatric nurse in Kampala, and Lilian Kanaiya a retired nurse and mother of two people with schizophrenia in Nairobi, started national family organizations. Standing here and talking to you I feel some distress that the recognition given to me as a family member by the World Health Organization is built upon the misfortune of my son. My only reason for accepting the honour of talking to you is that you will go away from here with compassion and understanding in your hearts for those who struggle to overcome the mental anguish of mental illness and for their families who support them. That you will go away with the determination to raise mental illness from the bottom of the political and social heap. No politician ever won votes by opening a residence for the mentally ill, no matter how useful or beautiful it was. Yet, by focusing on the appropriate care of your mentally ill population you enhance the standard of living of your country. You may not win votes now but by telling the true story you may be able to win them in the future. The provision of good medical care for those with mental illness, in general hospitals and clinics is as important as providing such care for patients with heart disease, cancer, or any other major illness. Dont imagine by destroying your mental institutions you will somehow destroy mental illness itself. With every day that goes by more people develop brain disorders like schizophrenia and many of them will have difficult symptoms. They will not be able to function well in society unless they have appropriate treatment and a high level of support not only from their families but from government services and non-government organizations together. While psychiatric conditions are responsible for little more than one per cent of deaths, they account for almost 11 per cent of disease burden world wide. Of the ten leading causes of disability world wide in 1990, measured in years lived with a disability, five were psychiatric conditions including schizophrenia. Altogether, psychiatric and neurological conditions accounted for 28 per cent of all years lived with disability compared with 1.4 percent of all deaths and 1.1 percent of years of life lost. You cannot sweep the area of mental illness under the rug any more. There are too many of us raising questions and raising them too often for them to be disregarded or given lip service. With every question we ask to every politician we open the doors for mental illness wider and wider and let in more and more light so that in the end no one will be ashamed. No one will whisper in the corner; no one will hide their relative away. People with mental illness themselves will not bear the internal stigma that comes from societys disdain from societys revulsion, from societys neglect. Like cancer came out of the closet in the 60s and AIDS came out of the closet in the 90s, schizophrenia will come out of the closet in the next few years. And we help this trend by speaking out ourselves and pay

homage to those people with mental illness who have had the courage to tell the world what they have suffered. I am reminded particularly of Ian Chovil, with whom I shared a Schizophrenia Society award several years ago. Ian runs a website, is articulate and advocates for timely treatment and care. I have never been ashamed of what has occurred. I knew from the start that schizophrenia is an illness like any other and not the fault of anyone. And I salute my close friends and those with whom I have shared my thoughts when I was low. They have sustained my family, not least of all my son, for they have been kind. For there is severe disruption of your household as each family member finds his own method of living from day to day. And it takes months before any treatment plan emerges whether or not you live in the most or least developed country. During that time you, the persons best resource, are completely without support even to the point of isolation. You may lose days off work trying to contain an acute psychosis, or days off work attending court sessions when your relative may have thrown a punch while defending himself against what he perceives as a threat. You may use up days searching for your son who has gone missing. Before I finished writing these words I read them to my son. He said "Thats OK to remember the bad times, but its better now. Times are good. Look, I have begun to go to work for this past month." And he is right. After all these years of illness he is able to work just one afternoon a week in a caf that is supported by a government grant as part of the mental health system in Toronto. This past weekend he asked me how long he should work there. He is beginning to think in terms of getting a real job. But I know that this is not going to be so easy. Half a day working in an enterprise that recognizes the worth of working with recovering psychiatric patients is not the same as a five day week among people who rarely make allowances for peoples mistakes. Society has become too blaming, too acusatory, with no tolerance of eccentricity, no tolerance of behaviour that doesnt fit the current pattern. And this makes it difficult for us all. So I will tell you that, yes, times are good for a family who measures success in millimeters. We enjoy each others company; we joke, we laugh, we accept life as it is and continue to hope that we are valued and that we can continue to nurture love, happiness, health and serenity in our lives. At least once a week I say the Serenity Prayer to myself: Lord, grant me the strength To change the things I can, To accept the things I cannot change And the wisdom to know the difference.

WORLD FELLOWSHIP FOR SCHIZOPHRENIA AND ALLIED DISORDERS Mail only: 19 MacPherson Avenue, Toronto, Ontario, M5R 1W7, Canada WFSAD's office is now virtual. Please contact us by e-mail or by post. E-mail: info@world-schizophrenia.org Website: www.world-schizophrenia.org