By Clea Simon
Sunday, March 9 1997;

A few years ago I was dating a man who seemed both serious and sensitive. After we'd been seeing each other for a few months, I revealed my family's history of mental illness: Both my brother and sister suffered from schizophrenia. My brother killed himself when he was 30, and my sister has spent her adult life in group homes and hospitals. Their illnesses had all kinds of effects on me -- making me strong in some ways, afraid in other ways -- but it would always remain the dominant fact of my childhood.

One evening as we sat on my couch, he hit me with something that, as strange as it now seems to me, I'd never even begun to consider. "I've been thinking a lot about us," he said. "I even told my parents about you." This, I thought, was sweet, if a little odd -- after all, we hadn't been dating for that long. "The problem is," he went on, "I'm looking for someone I could get seriously involved with, and this schizophrenia thing really scares me. You see, I want to be able to have children, and you're too much of a genetic risk."

My first reaction was that he was an uninformed clod. Where he did he get off assuming that I wanted him to be the father of my children, anyway?

We stopped dating soon after this conversation, but as I thought about the issues he raised, I wondered: Just how uninformed was he? Was I really a "genetic risk," to use his cold phrase? His assertion -- and a new, more serious relationship with Jon, a man I plan to marry -- started me on a search for the truth. I wanted to find answers: for myself, for Jon, for the children we may -- someday -- have together.

Although I'm 35, I'd never really thought about the chances of schizophrenia affecting my romantic or reproductive life. In retrospect that seems impossibly naive. But for years, my relationships had never progressed far enough for me to consider having children, let alone decide whether I was too much of a risk to be a mother. As long as childbearing was merely theoretical, the stigma of mental illness could be sidestepped, the deeper issues avoided.

I had so many reasons not to think about schizophrenia, about the terror it caused me as a child. When I was six, I watched my brilliant brother change from an engaging 16-year-old to a zombie who stared into space for hours, sometimes wandering nude into my bedroom at night. Two years later, I saw my older sister turn cruel and loud, screaming for what seemed like hours. When our parents weren't around, she would torture my pets, once crushing my hamster to death. I was too young to know anything about schizophrenia, but I knew something was terribly wrong. Like many with this disease, both my brother and sister resisted treatment, resulting in my brother's leaping off a cliff to his death and in the regular recurrence of my sister's psychotic rages.

Schizophrenia isn't the multiple personality of movie stereotype, but it is a horrible mental illness, causing aural hallucinations and provoking paranoid delusions that can make peculiar behavior seem "normal" to the sufferer. It often can be treated, but it isn't yet curable. And although public awareness of mental illness has come a long way in my lifetime, it's difficult not to feel cursed by the shadows it casts. When I was young, people seemed to have the idea that I was somehow contaminated by my siblings' obvious strangeness. My parents effectively shielded me from a lot, and when my brother and sister left home -- first to hospitals, then to a cycle of halfway houses, group homes and treatment programs -- no new acquaintance knew of their existence unless we decided to inform them. While my parents' code of silence isolated me in some ways, it also protected me. Once people know my family's story -- no matter how far I distance myself from my sister and brother or how well I manage my own life -- they often treat me as if I am somehow damaged, too.

For much of my life, I have tried to believe that the madness was behind me. After all, my brother committed suicide 15 years ago, while I was still in college, and I've been out of touch with my sister for close to 20 years. They no longer inhabit my present life, but their illnesses haunt me, like ghosts.

Jon was a friend before he was my boyfriend, and so by the time we became involved, he'd known of my family history for a long time. We've been living together for three years now, and lately we've been talking a lot about getting married and having children. When we discuss the possibility of kids, he never seems as afraid as I am. Partly, he admits, it's because he isn't completely sure he wants to be a father, schizophrenia aside. And partly, I suspect, it's because he does not know how terrible the illness can be. He says we can deal with any problems when -- and if -- they arise. But for me, the conversation always comes back to one central question: Is the risk greater for us than for anybody else?

In other words, would I have a child with schizophrenia? Fortified by Jon's fearlessness, I begin to do some research. I soon learned that any children of mine would indeed have an increased risk of developing the illness that destroyed my siblings' lives. My kids would be as much as eight times more likely than the average person to have schizophrenia. But even for my children, schizophrenia is not a huge risk -- their chances range from 3 to 8 percent. In the general population, schizophrenia occurs in one out of every hundred people, according to Stephen Faraone, a professor of psychiatry at Harvard Medical School. He explains that first-degree relatives -- children or siblings of schizophrenics -- may have as high as a 12 or 13 percent chance of developing the disease. But for second-degree relatives -- grandchildren or nieces and nephews -- the risk seems to drop to about 3 or 4 percent (my children would fall into this category). Several scientists told me that other considerations -- such as the fact that both my siblings had schizophrenia -- may increase the odds. Another factor could be the severity of my siblings' illness: Both became wildly, uncontrollably ill.

Since scientists are only just beginning to find genetic links to some of the traits found in schizophrenia, there's much that isn't known. "Penetrance" is the name geneticists give to whatever it is that controls how often and how strongly a particular genetic trait comes through. There may be some reason that, in my family, the gene or genes that cause the disease become manifest at a higher rate or are more likely to result in a full-fledged form of the disease, rather than just a few symptoms. Perhaps we lack some genetic code that in others counteracts the disease or lessens its severity. I now wonder if my mother's mother may have had schizophrenic tendencies: She used to protest, for example, that the heaters were emitting poison gas -- but the family always talked about her behavior as if she were merely eccentric.

If we had more complete and accurate information about earlier generations of our family, we might be able to pin down the disease a little better. Of course, even considering the high estimate of an 8 percent risk, I still have very good odds of having a child with no mental illness. And this is what Jon focuses on when we talk.

These odds are all the scientists can offer me. Unlike some other hereditary diseases, the genes for schizophrenia have not yet been isolated; there is no test. All Jon and I can provide are our family histories; all we can get in return are percentages.

When I think about what I might be like as a mother, I can too easily envision a mixture of guilt and grief. Because of what I know about schizophrenia, my mothering could be polluted by anxiety. I might be forever on the lookout for early signs of illness in my child. Such caution could be seen as sensible -- after all, early intervention and treatment would result in the best prognosis for a child who did develop schizophrenia. But what kind of effect would such surveillance have on a child?

Sometimes, I am stopped cold by the realization that I might end up being afraid of my own child -- that she or he could grow up to be like my siblings, a child who would rage and scream and threaten me, as my sister once did. In this way, the fear creeps back in. That because of my past, I am dangerous, or at least not worthy of happiness. These insecurities are prompted by guilt, of course. I am the only one of us three who even has the luxury of making a decision about whether to have a child. At other times, I imagine that I would welcome a child with any problem other than schizophrenia, and I find myself making deals with God. I play with this idea of a bargain much as I play the percentages over and over in my head. Chances are, I say to myself, my child would be fine. I tell myself that if I keep waiting the chances are greater of having a child with Down's syndrome than a child who would have aural hallucinations or paranoid episodes.

We know that mental illness runs in families, but genes don't seem to be the only factor. Schizophrenia seems to be about 70 percent an inherited disease -- which means that 30 percent or, as Harvard's Faraone puts it, "a sizable chunk," is due to the environment. This does not mean bad parenting, as people used to think.

A whole range of other influences are being studied for their effect on vulnerable people. Perhaps some variable alters neuronal development during gestation and serves to bring the disease out of genetic latency: a slight fluctuation in the amount of oxygen the fetus receives or perhaps a virus or some element of prenatal nutrition. It might be that a trauma during delivery can serve as a trigger, or that a chain reaction of two or more factors must occur.

Ultimately, understanding environmental triggers may help the descendants of people like me -- even those who inherit a genetic vulnerability. Eventually, what Faraone calls a "protective environment" could be created -- maybe by doing something as simple as taking a nutritional supplement during a particular period of pregnancy, maybe by inoculating a fetus or newborn against a certain germ. The child would still be vulnerable, but the vulnerability would not be exploited. The genetic switch wouldn't be flipped.

If only the science were further along. Still, we try desperately to read our futures in the little information we have. The genetics of mental illness will be much better understood in 20 years, scientists say, but there isn't much chance of current research having practical applications within the next five years -- when it would be useful to me. In the end, I have to face the fact that no one can tell me whether a child of mine would be healthy or ill.

And so the dilemma remains, particularly for people like me who carry the memories of our siblings at the same time that we feel the pressure of encroaching age. We cannot wait for research to provide the answers. We must make our peace -- and our decisions -- with the knowledge at hand.

Clea Simon is an editor at the Boston Globe. This article is adapted from her book, "Mad House: Growing Up in the Shadow of Mentally Ill Siblings,"

For more information, or to purchase, this book see the following link:

Mad House: Growing Up in the Shadow of Mentally Ill Siblings by Clea Simon, Publisher: Penguin USA (Paper); (May 1998) ISBN: 0140274340