Q. What made you want to write this book about your son, whose name you changed in print to protect his privacy?
A. I had always wanted to share our family’s story. One of the things that was so hard for us is I felt so alone - like nobody else’s kid had a mental illness, what’s wrong with my son, what did I do wrong? I wanted to spread the message of exactly what families go through and that recovery is possible, and some of the ways to deal with things.
Q. Your son wasn’t diagnosed until years after he started acting oddly and had psychotic episodes that potentially damaged his brain. Do you resent the fact that he wasn’t diagnosed sooner?
A. A lot of symptoms of mental illnesses overlap. I look back now [at the] typical pattern of gradual onset schizophrenia, and my son hit every single point: from extreme brightness, to being slightly anxious as a child, to having difficulty organizing his thoughts, to mood swings, and then to isolation from his peers. But if you look at any of those symptoms, it could be plain old adolescence, it could be drug use. There’s no way to test [for] it.
Q. Mental illness can also be a financial catastrophe as well as an emotional one for a family. Did you experience that?
A. My son’s college fund went to cure symptoms of an illness I didn’t know was there. A lot of families [facing mental illness] say you either have no money and the system can help you, or you have money and the system will help you when you’re out of money. Medications alone can be $6,000 a month.
Q. Have the medications been helpful for him?
A. Without the medications, my son would be homeless or in jail or in an institution for the rest of his life. The medications rebalance his brain to bring him closer to where he’d be without the illness. He can work, he can go to school and begin to grow up again.
Q. But you write that Ben has trouble sticking to his medications - he doesn’t like them?
A. He does not believe he has an illness. That is a documented feature of many mental illnesses - it’s a lack of insight into knowing you have the illness. If he doesn’t believe he has an illness, I can’t convince him he needs the medication. He’s had three relapses over eight years and all were when he went off his medications.
Q. Ben had a relapse recently, after he was moved out of supported housing because he was doing too well. But, though he’s living at home again at 29, he’s still a schizophrenia success story, holding down a job and going to school.
A. He runs a canteen at our local zoo. The cash register balances out to the penny and he loves being with people. He’s quite the charmer. He’s always there behind the voices. He’s just hard to reach if the schizophrenia is more in control.
Q. A lot of people have friends or family members going through traumas similar to what you went through, but it’s hard to know how to help. What would have been most helpful to you?
A. I think the main thing is to not blame the parents. Give them the same empathy you would if the child had cancer. To show that there is support, not stigma - that’s one of the main things.
Interview has been edited and condensed. Karen Weintraub can be reached at karen@karenWeintraub.com.