Split by Illness, United by Love

Written by Kate Gurnett

Twins hope shared memoir will open minds, ease stigma of schizophrenia

Identical twins Pamela and Carolyn Spiro seemed to read each other's minds. But they veered down different paths. Pamela began to hear voices on the day President Kennedy was killed.

Will you kill you Pam Spiro, Spam pam pam. She was 11.

Schizophrenia tightened its grip over the years, but Pam graduated from Brown University and wrote award-winning poetry. She also endured 60 hospitalizations, shock treatments and self-mutilation.

Carolyn became a psychiatrist. In a Connecticut hospital in 2000, she spotted a pudgy woman gesticulating wildly in the hall. She'd gone to visit Pam. But she didn't recognize her own twin.

To the rest of the world, she realized, Pammy is nobody.

Their memoir, "Divided Minds: Twin Sisters and Their Journey Through Schizophrenia," takes readers through their 1950s childhood: summer camp, eating disorders and sibling rivalries.

Pamela Spiro Wagner and Carolyn S. Spiro, now 52, will give the keynote luncheon address at the Mental Health Association in New York State's annual conference at the Albany Marriott on Friday.

In one book passage, Pam melts down in her apartment. Paramedics arrive. As they tighten restraint straps around her wrists as she lies on a stretcher, she whispers, "I'll be good, I promise." Later, she wrote, she felt useless and despised, "something they want to dump as soon as possible."

The memoir answers questions many have about mental illness.

Why, for example, do so many people quit taking their medications?

Side effects are often worse than the symptoms, Pam said in a telephone interview this week. Today, on better drugs, she sleeps a lot but is able to write, she said. "I don't think beyond the present."

In high school, Pam was considered the brighter star, expected to excel in academics, while Carolyn, then called Lynnie, planned to become a dancer.

The memoir helped Carolyn explore misconceptions and family frustrations involving schizophrenia.

Weathering her twin's psychotic rants and cursing wore her out.

"After a while you get tired of always having to be the one to hold back," Carolyn said. "I'd hang up the phone and I'd start screaming. Then call her back the next day."

Nurses and doctors also grew weary of Pam's abusive behavior.

"I told them this over and over and over again," Carolyn said. "It's coming out of nowhere, and it has such a drivenness and a power behind it -- and you know ... it's psychotic."

On their book tour, the sisters hope to help other families battling the terrors of brain diseases.

Readers tell Pam: You've written my experience; I couldn't put it into words.

People are "coming out of the woodwork," Carolyn said. "We've been living with this for so long and we haven't been able to talk about it with anyone," they tell her. "Given how perplexed and crazed I have been by the system (as a psychiatrist) and how intimidated even I have been, I don't have any idea how the ordinary person figures out what to do," Carolyn said.

"It would be nice to get people to realize that you can say the word -- 'schizophrenia' -- even though there's much more of a stigma than with bipolar disorder or depression," she added..

Schizophrenia affects about 1 percent of the population. She encourages patients and families to seek help as early as possible. "The point is, first, to get the 'mental' out of mental illness and get people thinking about the brain. And stop making fun of people who have diseases in the brain. They may look funny or do funny things, but they shouldn't be made fun of any more than people who have cerebral palsy or mental retardation."

As they collaborated on "Divided Minds," Carolyn watched her sister climb from her deepest depths to reach her highest functioning state. "I've never seen her look so good, sound so good, in our entire adult life," she said.

The important message is there is some recovery from serious mental illnesses such as schizophrenia, said Glenn Liebman, chief executive officer of the Mental Health Association in New York State.

People think schizophrenia "is like a life sentence. (But) people can get better and lead productive lives," he said. "There are all kinds of different formulas. There are vocational programs, there are education programs. I've seen some amazing stories."

next: A Glitch in Brain Chemistry