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Health & Fitness Susan Doherty urges readers to show some kindness toward those in the grip of schizophrenia

Author Susan Doherty.

Tory Morton/Globe and Mail

Susan Doherty and Caroline Evans were playmates as children. But while Doherty went on to enjoy a career and family and become an award-winning writer, Evans joined society’s most marginalized, living in squalor and locked in an endless struggle with her own mind.

For Evans (a pseudonym), the onset of schizophrenia led to decades of suffering and countless losses, including that of her marriage, custody of her two beloved children, and her independence.

In her new book, The Ghost Garden: Inside the Lives of Schizophrenia’s Feared and Forgotten, Doherty retraces Evans’s life up to the present to provide an unflinching and intimate portrayal of how the disorder, which affects about one per cent of the population, affects patients and their families. Woven throughout are anecdotes featuring other individuals with schizophrenia, whom Doherty has encountered as a long-time volunteer at a psychiatric hospital in Montreal.

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“So many symptomatic people live far outside the boundary of acceptance,” Doherty says, noting the disorder can make them hard to love.

But, as she explains to The Globe and Mail, a little kindness and understanding can go a long way.

Tory Morton/Globe and Mail

What is the meaning of the “ghost garden”?

The title came to me from one of the men I volunteer with. He and I, for years, would meet for coffee every Thursday, and I would always call him the night before to confirm. One Wednesday night, he got on the phone and said he had spent the night with [actress] Jennifer Love Hewitt. I hadn’t heard that kind of breathy enthusiasm from him in forever. Of course, you and I would call what he said to me fictitious, but I said to him, “Tell me about it when I get there.”

At the café, he put his elbows on the table, and I asked, “Where did you meet?” He said, “Suzy, I met her in the ghost garden. That’s where I meet all the souls of the people I love.” It gave me chills. In that moment, I felt as though I’d been invited to the party – the party of understanding the roots of psychosis.

When Caroline says that [actor] Mel Gibson is the father of her children, what she’s really saying is she’s reminding me that at one time, she was beautiful and desirable. The ghost garden means we have to look beyond the delusion to identify the feelings behind the words.

So, how do you respond to the delusions?

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Andrea, one of the women in the book, loves [singer] Mick Jagger. But her negative delusion is that Mick Jagger came to her fourth floor window and raped her. You and I know that he did not come through the window. But that feeling of being violated is her truth, and maybe something else happened earlier in the day that made her feel that way.

So I listen sympathetically and I would never, ever say, “Well, of course Mick Jagger didn’t do that,” or “Of course, Mel Gibson isn’t your children’s father,” and “Of course, Jennifer Love Hewitt isn’t your girlfriend.” They’re metaphors for feelings.

You talk in the book about having mixed feelings about the reliance on medication to treat schizophrenia.

Don’t get me started. I’m not a medical professional, but here’s what I can tell you from my personal view: Drugs are the most expedient way out of a crisis. Hallucinations can provoke panic and desperation. So yes, with drugs, the psychotic experience is dulled, but so, too, are all emotions.

My problem is the overuse of medications. The fact that people are medicated for life. It’s just not necessary, in my opinion, and the side effects are so problematic. There’s weight gain, lethargy, brain fog, tardive dyskinesia, which is a movement disorder that is not reversible. There’s sexual dysfunction, constipation, diabetes.

And then there’s this whole idea that the biological component of schizophrenia has not yet been pinned down. That means the medications are speculative.

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One issue you raise, which could potentially save lives if more people knew about it, is how certain medications can cause individuals with schizophrenia to experience temperature dysregulation. What is it?

Carl was this truly lovely man who was in his early thirties. In his transition from hospital to group home, they bumped up his medication. What happened is Carl had heat stroke. He died on a hot summer day during a heat wave, and his core body temperature was between 42 and 43 C , but he didn’t show any signs of distress. He wasn’t sweating, he was in no discomfort. His thermoregulation was affected by his antipsychotic medication, and the real tragedy was that nobody around him knew about this problem, including myself. He’d be wearing this parka, and he’d ask me, “Suzy, do I look fat?” I thought he was wearing his coat because he was very self-conscious about his weight.

What are some ways our society can support families?

This is what Caroline said: “We need to make room for psychiatric survivors and their families so that we do not feel guilty about our lives.” She said, “My entire life, I’ve been crucified for having the symptoms of mental illness.”

The first step is to remove blame, and the shame that family members feel, and especially if a family has chosen to let go. Some families do walk away, and we can’t sit in judgement.

Have Caroline and her family members read this book?

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Her sisters Rosalind and Peggy have, and they both called me sobbing. They have been unflinching in their desire to get the word out about what it’s like. But there were other siblings who were afraid to have their shame reignited. And you know what? It’s dirty. There’s blood and maggots and bed bugs. It’s a dirty book.

What about Caroline?

Caroline doesn’t have the capacity to read any more. But will I give her a copy of the book? Of course.

When Caroline said to me, “Is the book over?” I had to say to her, “No, it will never be over.” She couldn’t bear for it to be over. She crawled into the sewers of her mind for this book, so if the book is over, it means another loss for her.

This interview has been condensed and edited.

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