August 23, 2005
Traditionally, twin studies have been important statistically for understanding genetic predisposition to schizophrenia, but a new book, authored by twins, provides a unique exposition of the illness.
Divided Minds: Twins Sisters and Their Journey Through Schizophrenia is a memoir by Pamela Spiro Wagner, now in her 50s, who began hearing voices in 6th grade. Her chapters alternate with ones by her sister, Carolyn Spiro, M.D., a psychiatrist, who even with her medical training, did not recognize her sister's illness for years. Neither did their father, a professor at Yale Medical School.
Pamela and Carolyn are scheduled to be interviewed on Good Morning America (ABC-TV) on Wednesday, August 31, 2005 (check local listings). They also are scheduled to speak at NAMI state conferences in Massachusetts and Pennsylvania in October, as well as to NAMI Westchester County, N.Y.
This is not the first time Pamela has shared her perspective as a person living with mental illness. As part of Mental Illness Awareness Week in 1993, NAMI Connecticut and others honored her with a media award for an article she published in the local newspaper, entitled "Mentally Ill People Deserve Equal Health Insurance Coverage." It also was carried on the newspaper's national wire service.
"NAMI is probably the most active and helpful group around and the award I won…remains one of my proudest moments," Pamela says. "I had barely heard of NAMI before that time, but I knew then I'd have to find out more. What I learned was that NAMI has single-handedly worked to curb stigma and fear of psychiatric patients, and to treat families and friends as allies in the struggle."
"A few decades ago biological brain diseases like depression, bipolar disorder, OCD and schizophrenia were still taboo subjects," Carolyn adds. "NAMI has helped bring them into household conversation. The Alliance has done extraordinary work in combating stigma and prejudice by educating the public about these illnesses."
Today, Pamela is an accomplished writer and poet. She was the winner of the 2002 BBC International Poetry Award, and her work has appeared in the Midwest Poetry Review, Tikkun and the Trinity Review. Although hospitalized several times for what was diagnosed as depression, Pamela graduated magna cum laude from Brown University in 1975. She made it through two years of medical school -- her rivalry with Carolyn playing out even as her life came apart. They walked different paths, but remained intertwined.
In the 1980s, one psychiatrist finally gets the diagnosis right -- telling Pamela that her struggle is with schizophrenia. For the first time, she is able to "tell another person everything: about the voices and the Strangeness, about my experience of the other dimensions and alternate reality."
"I know I'm evil," Pamela told the doctor. "I'm Hitler's spawn, that's what the voices say. I think I may have killed JFK. I know that Gray Crinkled Paper is the secret to the universe and I know no one understands."
"Pammy psychotic?" Carolyn recalls reacting. "Oh, come off it…No way! Schizophrenia happens to other people. I'm a psychiatrist for God's sake…I know schizophrenia and I know my sister doesn't have it…Don't say anything I don't want to hear."
NAMI families will identify with the push and pull of emotions between the sisters, and the tumultuous events in their lives. The illness affects both of them. At the same time, their relationship is as ordinary as that between any siblings. Following a divorce, Carolyn recalls that Pamela was unable to attend her wedding because she was hospitalized. "Oh, Pammy, would you have sensed the way you used to that I was taking the wrong road? Once upon a time you thought what I thought and felt what I felt. What happened to us?"
"Divided Minds is an important contribution to our understanding of the experience of severe mental illness for families. It is rare in the literature of psychotic illness to have the experience of hallucinations, delusions, and the struggle for health and acceptance so beautifully written by the ill family member," said Virginia Holman, author of Rescuing Patty Hearst, a memoir of her mother's untreated schizophrenia, which won a NAMI National literary award in 2003.
"Pam Wagner shows her valor on every page."
The book deserves to be publicized broadly, beyond the mental health community, to educate others about the realities of mental illness and its human dimensions. In 2005, Pam's and Carolyn's journey has not ended and they are not naïve about difficulties that still lie ahead.
"I can never really know the hell in which Pammy lives," Carolyn writes. "When I hang up the phone, hell disappears. But she knows nothing else. Hell is her life."
For her part, Pamela closes with the observation: "Life has a will of its own…I can live only the now, happy to be well for the time being, and alive -- not overly attached to the possibilities of tomorrow."
To inquire about possible speaking engagements, NAMI leaders and others may contact Diane Lewis at Common Sense Consulting Book Publicity at 860-657-9522 or Diane.Lewis@cox.net.
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