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Research Gives People Hope
No one knows better than the Garatt family how far research in mental illness has come – and how far it still has to go. Thirty-three years ago, when Sean Garatt was diagnosed with schizophrenia, his mother, Marcia, was told that she was the cause. The “bad mothering” theory eventually collapsed under an avalanche of research pointing to schizophrenia as a biological illness, opening the door for more treatment options.
Sean was 17 years old at the time of his first psychotic break. He remained seriously ill, his life a shambles, until the age of 31, when he was given Clozapine, an antipsychotic drug developed in the late 1980s under the leadership of the Brain & Behavior Research Foundation Scientific Council Member Herbert Meltzer, M.D. With medication Sean got better; not totally well, but mostly free of mind-imprisoning psychosis and able to live an ordered, if limited, life. “Now, he knows what day it is,” Marcia says.
Even before Sean’s diagnosis, the Garatts were no strangers to mental illness. Paul, Marcia’s husband of 53 years, has been battling anxiety and depression most of his life, including a close brush with suicide. The family’s experience has made them outspoken advocates for better understanding of mental illness and ardent supporters of the Brain & Behavior Research Foundation.
Young couple faces mental illness together
Absent mental illness, the Marcia and Paul story would have read like the quintessential American dream: idyllic rural childhood, committed marriage, good jobs, two wonderful, devoted sons. The couple grew up in the small farming community of Candor, in upstate New York, dated in high school and married after finishing college. That is, Marcia finished college. Paul dropped out. Although bright and articulate, with a wide range of interests and abilities, Paul’s “noisy brain,” as he calls it, made it impossible for him to focus on his studies. “I married him anyway,” Marcia says. “We were so young and innocent, and he was so enjoyable and funny.”
Without work or prospects, Paul joined the Navy and thoroughly enjoyed seeing the world while chasing Russian submarines. On entry, he had tested so well that he had his choice of specialty. He chose electronics, and military structure and discipline kept him on task. After his four-year tour of duty, Paul’s training served him well when he returned to civilian life.
Marcia, who had majored in social work, became a probation officer, working with child offenders the courts were trying to keep out of prison; children that others in the system were convinced couldn’t be helped. Marcia saw it as “a wonderful challenge.” She set up a volunteer program that over the years provided many such youngsters the chance to do things they’d never done before: farm, swim, fish. Her 18 years of service earned her an award from the state of New York and the satisfaction of knowing she had helped turn around some very troubled young lives.
Despite these triumphs, mental illness always hovered over the Garatts’ lives. When Paul’s early jobs in computer testing and quality control became boringly routine, he taught himself computer programming. In a burgeoning industry, he soon landed a very good, more demanding job in North Carolina. As it turned out, it was too demanding. He went to bed at night worrying about work and woke up to the same worries.
“I just could not, as the saying goes, lock my toolbox,” he remembers. “I had taken a job I couldn’t do, I hadn’t enough training for. The pain went on and on and I couldn’t unhook my brain. So one day I stopped my car on the railroad tracks. I knew the train would be coming soon, and then it would be over. But what happened instead, other cars pulled up, and when the guy behind me honked, I drove on.” He drove home, and when he told Marcia what had happened, she said, “We’re going to the hospital.”
They went to Duke University Medical Center, where Paul received state-of-the art treatment that included both medication and cognitive behavioral therapy. When back on his feet but concerned about his future, a therapist encouraged him to go back to his boss and ask for a less demanding job. To Paul’s surprise, the boss agreed. Later, when the company was downsizing, they made him the proverbial offer he couldn’t refuse, and he took early retirement.
From denial to action
Paul is ever conscious of and grateful for Marcia’s steadfastness through many trying years. Marcia acknowledges that she has often felt pushed to the edge of despair. Both admit they were, for a long time, “in denial” about their son Sean.
Scientists are now pretty certain that genetic pre-disposition combined with some environmental factor – possibly maternal infection or trauma during pregnancy – triggers schizophrenia in many instances. Despite its early seeding, however, full-blown symptoms typically don’t erupt until adolescence or early adulthood. There can be a gray period before then – what’s called the prodrome – when the child’s behavior begins to become worrisome. But when dealing with a rebellious adolescent, how is a parent to know, except in hindsight, whether, as Marcia says, “you have a bad child or a mad child?”
By the age of 14, the once cheerful, responsible Sean had grown angry and argumentative, hiding away in his room. The Garatts could later recall some startling earlier clues to his – and their – impending reality. They remember a day when 12-year-old Sean, browsing in the Encyclopedia Britannica, looked up and said, point blank, “I have schizophrenia.” More painfully unforgettable, at the age of five he told them that he felt “like I have a tangled Slinky toy in my head.”
Sean’s years in the wilderness, until he was finally stabilized, were marked by earnest if futile efforts to live a normal life: failed attempts to hold a job, an ill advised and short-lived marriage, a baby son neither he nor his violent, addicted wife could handle. (The child was subsequently raised by his maternal grandmother.)
Seven years ago, Marcia and Paul moved to Paducah, Kentucky, to be near their younger son, Geordie, an attorney, and his family. Sean moved with them, but lives on his own. Each morning he calls his parents to reassure them he has taken his meds. He takes halperidol (Haldol), an older, so-called typical antipsychotic, in combination with Clozapine. Among the things clinicians and researchers have learned is the importance of tailoring medications to the individual patient. One size does not fit all. Once, when a new doctor took Sean off halperidol, he crashed.
Atypical antipsychotics like Clozapine can have some serious side effects. A common side effect is metabolic syndrome, marked by weight gain, high blood pressure and the risk of diabetes and cardiovascular illness. Because Sean has put on weight, every day he and Marcia go to a fitness center. He also attends diabetes prevention classes. Looking toward the time when they will no longer be there for Sean, Marcia and Paul update a plan every year, a list for Geordie of his older brother’s needs.
In addition to helping the Brain & Behavior Research Foundation, the Garatts have been active for many years with NAMI, the National Alliance on Mental Illness, a grassroots, self-help, support and advocacy organization. Paul and Marcia both taught a course for caregivers of people with severe mental illness in NAMI’s family-to-family program. They were instrumental in establishing NAMI in North Carolina, and Paul served as its second president. Currently, Marcia and Sean have been working with their local NAMI, teaching people how to set up a crisis plan: the steps to take when a family member with mental illness encounters difficulties.
While teaching for NAMI, the Garatts often clipped items of interest from Brain & Behavior Research Foundation publications to distribute to the class. “We’re most appreciative of NARSAD Grants,” Marcia says. “When I read what their scientists are doing, I’m just amazed. As I try to keep up with things that are going on in research, I get the feeling that this Foundation is way ahead of the curve.” Says Paul: “Research gives people hope.”