A Million Stories

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 won’t go out in the day because he thinks people are threatening him. She refuses to eat because she thinks you are poisoning her. He doesn’t 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 won’t? 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?

Don’t 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 show’s 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 play’s 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. It’s 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, it’s 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 didn’t see any of this. His hands were like any man’s 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 didn’t 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 someone’s 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 doctor’s. 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 couldn’t 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 family’s 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 family’s 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. It’s 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.

Don’t 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 society’s disdain from society’s revulsion, from society’s 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 person’s 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 "That’s OK to remember the bad times, but it’s 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 café 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 people’s mistakes. Society has become too blaming, too acusatory, with no tolerance of eccentricity, no tolerance of behaviour that doesn’t 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 other’s 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.