Breaking the silence: my family and schizophrenia

First my parents shared the responsibility, as well as the sorrow and guilt, of this unhappy homecoming, but after my mother died, in 1996, my father went on alone. He cooked every meal, laundered Barb’s clothes, and took care of the house and the yard, grimly determined to go on as if nothing were wrong. 

I helped, or tried to. I showed up with presents and food. I had him to my house for Sunday dinners. Barb didn’t come along on these outings, or on any – sometime in the late 1970s she’d stopped leaving the house. The one thing I couldn’t do, because my father wouldn’t allow it, was to get my sister professional help. He didn’t want to even talk about it. He didn’t trust … fill in the blank here …  doctors, psychiatrists, psychologists, social workers

What had started out as reasonable caution about consigning Barb’s care to a system that didn’t have a cure or even a compassionate care plan, became, in my father’s later years, a mania of secrecy and stubborn independence. He wouldn’t consider seeking outside help, and when people asked him what would happen to Barb when he died he’d get steely-eyed and say he planned to outlive her.

As it turned out, his plan didn’t work. I became my sister’s legal guardian.

It was after this, when we asked for help, that things started to change. I found a wonderful social worker that came to the house, and she found a psychiatrist who agreed to make a house call, and prescribed a tiny dose of Risperdal that changed everything. After the soul searching my brother and I did over whether to “put her someplace,” as everyone recommended, we found an extraordinary caregiver, yet another link in allowing us to make it possible for Barb to remain independent.

All of these changes and generous helpers took me completely by surprise. After living in the dark for so long, suddenly there wasn’t only a light at the end of the tunnel – there was light all around. Because I’m a writer and also because I wanted to share what I’d discovered in the hope it could help others, I wrote a book about it, After Schizophrenia.

What I wasn’t prepared for – or I should say yet another thing I wasn’t prepared for – was how writing the book would change my life again.

Before I wrote the book, my life was all about secrecy. Before, my family took it for granted that it was important not to talk about these things. People wouldn’t understand, we thought. I was afraid they’d think I was “crazy” too, or bad for not doing something drastic to oppose my father. Or they’d just think I was creepy somehow, marked with a stigma that would cling to me like the memory of a bad smell.

And the unspoken agreement in my family that we didn’t talk about Barb with outsiders wasn’t completely unfounded. People were often not that nice about it. If pressed, my father would say he had a “disabled daughter”. When people came to the house and met her – rare, but it happened – they were surprised. After my father died, I could tell by the way people spoke to me about Barb that some of them assumed she had a developmental disorder. When I told one of my father’s neighbors that I’d written a book about my sister, she said, “Oh – will you read it to her?”  I had to stop myself from saying, “She’ll read it herself, after she finishes rereading War and Peace.”

But when the book came out, secrecy was no longer possible, or desirable. For the first time in my life I understood the mental health maxim I’d never quite gotten before, 'You’re only as sick as your secrets'. Now, I wanted to talk about my sister and what we’d been through. I was proud of her, not only because she was getting better by leaps and bounds – and she was! – but also just because she was an interesting person. I didn’t want to keep secrets anymore. Now, secrecy seemed like some black and white version of a life that everyone else had been living in color. Forcing myself to tell the story, to go through the pain of remembering and trying to understand why my parents behaved the way they did, has made me more compassionate toward everyone (even myself.)

Now, when I speak about my book, people approach me to tell me about their family members and friends who have a mental illness – or about their own experiences. A couple months ago, when I was waiting at a pharmacy for something for my throat, the woman next to me and I began discussing our ailments. I had to make a speech, I whispered; I needed something to restore my voice. A speech about what? she said, and before I knew it someone else was telling me about her best friend from high school who’d disappeared into a mental hospital.

There’s so much pain out there, and so many people we neglect because we’re afraid or ashamed. What I’ve learned, beyond a doubt, is that the first thing we can do to help them, and ourselves, is to speak out.

Order 'After Schizophrenia: The Story of My Sister's Reawakening After 30 Years' on Amazon.co.uk 

Editors notes:   

• Do you have a brother or sister affected by mental illness?
  Sign up to our FREE national event on May 12th 2011 and get support, information and the chance to meet other siblings