1. Who we are

We are Myron and Mary Siegel. We are both sixty-four. Myron was an accountant for thirty-eight years and Mary was an elementary school librarian for thirty, and we have lived in the same house in Cleveland Heights since 1966. We have two children, Amy and Richard.

Richard is thirty-five. In 1984, in his junior year of college, he was diagnosed with schizophrenia. For seven years after that we went through hospitals and medicines and long nights that we did not think we would come out of. Since 1991 he has been on a medicine that works for him. He lives in a supervised apartment program a few miles from us, works part-time at a bakery, and paints.

We are writing this together. Myron makes the lists and Mary tells the stories, which is how we have done most things in forty-one years of marriage. Richard has read every word of this page and has said it is all right to put it up. That was our first rule.

We are not doctors. We are parents who have had fifteen years of learning the hard way. If we can save another family even one of those years, this page will have been worth the time it took Myron to learn the HTML.

2. What schizophrenia is, and isn't

Schizophrenia is a disorder of the brain. It changes the way a person thinks, sees and hears things, and feels. It affects about one person in every hundred, all over the world, in every kind of family. It usually first appears in the late teens or the twenties, often a little earlier in young men than in young women.

The most common signs are:

• Hearing voices or seeing things that other people don't (doctors call these hallucinations).
• Firmly believing things that aren't true, and can't be talked out of them (delusions). Often they are frightening: being watched, followed, or sent messages.
• Thinking and speech that are confused and hard to follow.
• Pulling away from friends and family, losing interest and drive, and showing less feeling in the face and voice.

And here is what it isn't. We list these because we believed some of them ourselves in 1984, and because people still say them to us:

• It is not a "split personality." That is a different and much rarer condition. The "split" people talk about is between a person's thoughts and reality, not between two people living in one body.
• Most people with schizophrenia are not violent. They are far more often frightened, withdrawn, and the victims of other people. The ones you read about in the newspaper are the rare ones, and very often they are the ones who weren't getting treatment.
• It is not caused by bad parenting. When Richard first got sick, one doctor asked Mary whether she had been "cold" with him as a baby. There were still people then who blamed mothers. The researchers have long since put that idea where it belongs. Nothing you did at the kitchen table caused this.
• It is not weakness or laziness. Richard was not lying in bed because he didn't care. He was lying in bed because his illness had taken away the part of the brain that starts things.
• It is not hopeless. It is serious, and for most people it is lifelong. But it can be treated, and many people get better than anyone expected. Our son is one of them.

3. Richard's story (Mary)

Richard was a quiet, funny, bright boy who drew on everything. He drew on his homework, his sneakers, and once, memorably, the dining room wallpaper. He did well in school and went off to college to study art and history. His first two years, he called home every Sunday night.

In the fall of his junior year, the calls stopped. When I did reach him he sounded far away and careful, as if he were choosing every word from a list. His roommate finally called us in November. Richard hadn't been to class in weeks. He had covered his window with newspaper. He was sure that the radio station on campus was talking about him. We drove down that night.

The first hospital kept him three weeks. The word "schizophrenia" was said to us in a hallway, by a young doctor who had someplace else to be. We drove home in the dark and did not speak for the first hour. I remember Myron finally saying, "Well. We'll learn about it." And we did, though it took us much longer than either of us thought.

The next seven years were the hardest of our lives, and I won't pretend otherwise. Richard was in and out of the hospital six more times. He tried one medicine after another. Some helped with the voices but made him so stiff and slow he could barely lift a spoon. Some he stopped taking because of how they made him feel, and then he got sick again. He lived with us, then didn't, then did. There were nights we sat up in the kitchen listening for him. Amy was in high school through the worst of it, and we know now that she got less of us than she deserved. She has forgiven us more generously than we've forgiven ourselves.

In 1991, his psychiatrist, Dr. Heaton, who had been seeing him for two years by then, suggested clozapine. She was honest with us: it had helped many people the other medicines hadn't, but it needed regular blood tests, and it wasn't a miracle. Richard agreed to try it. It took months. There wasn't one day when we could say, there, it's working. But by that Thanksgiving, Richard came to dinner and sat at the table through the whole meal, and argued about the Browns with his sister's boyfriend, and laughed. I went into the pantry and cried into a dish towel.

In 1992 he moved into a supervised apartment program, his own apartment in a building with staff on hand, and he has lived there ever since. He works four mornings a week at a bakery, where he started out washing pans and now runs the bread slicer and stocks the cases. The owner, Mr. Laub, says he is the most dependable person he has ever hired. He still hears a voice sometimes, he tells us, but it's "more like a radio in another room" now. He knows what it is. He doesn't let it drive.

And he paints. He took it up again in 1993, in the art room at his day program, and now his apartment smells of turpentine and toast. With his permission, we have described some of his paintings on a separate page, since we don't have a scanner, and he has written a line about each one.

Richard is not the person he would have been. He knows that, and so do we, and some days it is a grief all over again. But he is our son, he is kind, he is good company, and he has a life that is his own. Fifteen years ago, we didn't dare hope for that.

4. About the medicines (Myron)

I am an accountant, not a pharmacist, so this is the general picture as we understand it. Every person is different, and every medicine decision belongs to the patient and the psychiatrist. Ask the doctor about any medicine, and never stop one suddenly without talking to him or her first.

1. The older antipsychotics. These have been used since the 1950s, and you'll know some of the names: Thorazine, Haldol, Prolixin and others. For many people they quiet the voices and the delusions. Their side effects can be hard: stiffness, shakiness, a terrible inner restlessness, and with years of use, a risk of movements that the person can't control. Many people do well on them. Richard was not one of them.
2. Clozapine (Clozaril). Approved in this country in 1989. It helps a good number of people who haven't been helped by anything else, and it rarely causes the stiffness of the older drugs. But in a small number of people it can cause a dangerous drop in the white blood cells that fight infection. So everyone who takes it must have regular blood tests, weekly at first, for as long as they take it. It also has other side effects (Richard is sleepy in the evenings and has the appetite of a teenager). For him, the blood tests have been a small price. He gets his on Monday mornings on the way to work.
3. The newer ones. Several newer medicines came out in the 1990s, including Risperdal, Zyprexa and Seroquel. For many people they cause fewer of the stiffness side effects, and some families we know have seen real improvement. They have their own side effects too. Ask the doctor which might be right.
4. Medicine isn't the whole answer. It made the other things possible for Richard: the apartment program, the job, the painting, his friends. But those other things matter too.
5. It can take a while. Finding the right medicine at the right dose can take months, sometimes years. Keep a written record. Be patient. Don't give up.

5. What helped our family

NAMI. The National Alliance for the Mentally Ill is a group of families and people with mental illness that started in 1979. In 1987 a nurse at the hospital handed Mary a flyer for a meeting of our local NAMI affiliate in a church basement. We nearly didn't go. We walked in and found thirty people who knew exactly what we were living, and nobody looked at us as if we'd done something wrong. We have hardly missed a meeting since.

Family-to-Family. NAMI's twelve-week class for families, taught by family members who have been trained to teach it. It is free. We took it a few years ago, long after we needed it most, and still learned things every single week: about the illness, about the medicines, about the brain, and about how to talk to Richard without making things worse. If it is offered near you, please take it. Take it early. Our class leader, Nancy, has a daughter with schizophrenia, and she taught us more in twelve Tuesday nights than we learned in our first five years.

A book. Surviving Schizophrenia, by Dr. E. Fuller Torrey. The first edition came out the year before Richard got sick, and we found it in 1985. It was the first thing we read that spoke to families as if we were intelligent people who needed to know things, rather than as part of the problem. There are newer editions now. Mary checked it out of her own library so often that we finally bought a copy so Myron could underline it.

A good psychiatrist. Dr. Heaton has been Richard's doctor for ten years. She listens to him. She talks to us, with Richard's permission, and she tells us the truth. If your family member's doctor won't speak to you at all, ask your family member to sign a release, and if the doctor still won't, look for another.

Each other. More marriages than you'd think come apart under this. Ours nearly did, around 1988. What saved it was deciding that we were on the same side and that the illness was the thing we were fighting, not each other.

Patience. More patience than we knew we had. Richard's recovery has been measured in years, not weeks. The little things count: the first time he called us just to talk, the first paycheck, the first painting he gave away.

Amy. Our daughter, who drives over on Sundays with her children to see their uncle, and who never once let him be anything less than her brother.

6. In a crisis

If you are a family just starting out on this road, we wrote a separate page for you: first steps, and questions to ask the psychiatrist.

And if you would like to write to us, we would be glad to hear from you. We answer every letter, usually together, usually after supper.

[email protected]

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since October 1998

Last updated Sunday, September 12, 1999
We are parents, not doctors. Please talk to your own family member's psychiatrist.