Living with schizophrenia for 23 years, even when my mental health overrides my mental illness, say, for the last decade or so, has left a constant consciousness of my condition. I am fortunate, and ever grateful, that my symptoms disappear as long as I take Trilafon, or since the brand is now defunct, the generic perphenazine. So this consciousness is shaped not by the intruding voices I once heard, or by the flashing visions I once saw. It is shaped by an awareness of difference attuned to shrill and quiet notes sounded by the stigma and ignorance I encounter around me.
In the last three years, this feeling of difference has lessened as I married and gave birth to my daughter. After churning along in undercurrents of seeming otherness, I joined the mainstream of conventional expectation and acceptance. I can hold my own in discussions about working moms, toilet training or how much housework my husband does. But 23 years of my condition cannot be swept away. My consciousness remains. That is why, I think, I'm asking myself now, at my daughter's young age of two, questions that jab like a finger pointed in my face: When do I tell her I have schizophrenia? And what does she need to know? I look for answers and try to tell it straight.
The issue of timing is tied to what she needs to know. And what I think my daughter needs to know is based on current information. New research in coming years may create new knowledge and change my understanding. For now, I've decided, if the subject of my illness has not come up before my daughter is 10 years old, if she has not seen me swallow a pill and ask why, if she has not stumbled across articles I published, if she has not overheard a conversation with my friends, then I will introduce the topic of drugs and schizophrenia.
This is when she can understand discussion of drugs, in general, and what she needs to know about her health, in particular-that marijuana, cocaine and other drugs can increase the levels of dopamine in the brain, that excess dopamine is tied to schizophrenia, and that because I have the illness, her risks for the disease are higher than for the average population and it's better not to add to that risk.
Where we go from there is her call. She may want to know more, or she may not. As I've already learned in two short years, I take my cue from her.
The urge in me to protect her is strong, though, and there are things I want to say. Don't live in fear. It probably won't happen to you. If it does, ask for help. These are some symptoms to pay attention to: voices, critical, commanding and negative; cosmic thinking; messages from the media; withdrawal from friends. Know that treatments are better than 30 years ago and new medicines and psychotherapy approaches are evolving all the time. Your father and I will stand by you. Many people are living full lives with this condition. Be aware, yet don't dwell on it.
But I know I cannot protect her from whatever will unfold, cannot prevent her from feeling what she feels. I know, too, schizophrenia is one story in my life. I don't want to make it hers. Ultimately, all I have to offer comes to this: my love and deep trust that she will find her way, whatever it may be.