From The Quarterly, Spring 2012
Like many donors to the Brain & Behavior Research Foundation, Janet and Myron Susin of Long Island, New York, have a compelling personal reason for lending their support. Twenty-five years ago, around the time the Foundation originally known as NARSAD was getting started, the Susin’s younger son, age 16, had a breakdown. What followed was a sadly familiar story of hospitalization, misdiagnosis, more hospitalizations and a family’s life turned upside down.
At the time, Janet was a teacher in the school her son attended. She remembers that during his first hospitalization, when his classmates began asking her where he was and what was wrong with him, she had wanted to come up with a calm, teacher-like response (“he’s being treated for a mental illness. I’m sure he’ll be better soon.”), but, she confesses, “mostly I just burst into tears
And there were other shocks to come. Brought up short by the dismaying environment surrounding mental illness—the stigma, the furtive silence, the inadequacies of information and treatment—her anguish turned to anger.
She dried her eyes and rolled up her sleeves, determined to change that environment. Today, as president of the Queens/Nassau chapter of NAMI, the National Alliance on Mental Illness, Janet Susin oversees a large and diverse array of programs that support, educate and advocate for hundreds of families living with the uncertainties and anxiety of mental illness.
“I became an advocate almost immediately,” she says. Naturally outgoing and trained in theater—she taught drama for many years and received a lifetime achievement award from the New York State Theater Education Association—she brought to her new task an ability to articulate, clearly and forcefully, the needs and goals of the mental health community. She lectures nationally, served on the NAMI state board for six years, including one year as president, and was named NAMI Outstanding Member of the Year in 2006. She chairs the annual NAMI fundraising walk in her area, one of the largest in the country.
Janet’s initial foray into the public arena was unanticipated. “The first thing that really shocked me and my husband,” she says, “was finding out about the huge disparity at that time between insurance coverage for mental illness as opposed to coverage for other illnesses.” It propelled her to write an outraged letter to the New York Times. Janet didn’t expect an answer, and when someone from the paper actually called, she assumed that “they wanted to sell me a subscription.”
Her letter prompted a major Times article by award-winning reporter Glenn Kramon titled “Mental Health; Psychiatric Care: Orphan of Insurance Coverage,” which appeared on Feb. 9, 1989. One reason cited in the article for the disparate insurance coverage was the lingering idea of mental illness as a failure of moral fiber rather than an illness of brain function. Another reason was skepticism that anything could actually be done to treat psychiatric problems. That argument was countered in the piece in a quote from President of the Brain & Behavior Research Foundation Scientific Council, Herbert Pardes, M.D., who was former Director of the National Institute of Mental Health and Chairman of Psychiatry at Columbia University at the time. He went on to become President and CEO of New York-Presbyterian Hospital, and is currently the Executive Vice Chairman of the Board of Trustees there. He has been an ardent supporter of and advisor to NAMI since its founding in 1979. It was as an offshoot of that affiliation that he became scientific leader of the Brain & Behavior Research Foundation, which at the time was a fledgling schizophrenia research group. He was a key figure in the founding and shaping of the Foundation and has served as president of its prestigious Scientific Council since its inception.
It was through NAMI, discovered soon after their son became ill, that the Susins learned about NARSAD. They immediately became supporters and their commitment has never lagged. They were keenly aware of the crucial need for brain research as the key to understanding and conquering mental illness. “It’s been an article of faith with my husband, Myron, and me,” Janet says, “that research is our hope for the future.”
Their faith was rewarded more quickly than they could have dared hope. When a powerful drug called clozapine (trade name Clozaril), was introduced for treatment of schizophrenia, their son turned out to be one of the lucky ones who responded positively to it. “After four hospitalizations between the ages of 16 and 19,” Janet says, “he hasn’t been in the hospital since he started on Clozapine.” The medication that has kept him stabilized and able to live a relatively normal life for the past 22 years was developed for use in treatment-resistant schizophrenia by Herbert Y. Meltzer, M.D., of Vanderbilt University, a founding member of the Brain & Behavior Research Foundation Scientific Council and three-time NARSAD Distinguished Investigator Grantee.
Now retired and able to devote herself full time—and then some—to the cause closest to her heart, Janet Susin is justly proud of the ever-expanding activities of her NAMI chapter. Among them is The Friendship Network through which people with mental illness can socialize in a safe and protective environment, travel, play sports and maybe fall in love. “Many marriages have resulted,” she reports. There are support groups that reach out to ethnic communities in which, traditionally, even acknowledging the existence of mental illness has been taboo. Newly begun is a training program, Crisis Intervention Team (CIT) for area police to help them deal with situations involving people with mental illness, including those who are suicidal.
Ever the teacher, Janet’s most lasting contribution from her work with NAMI may turn out to be a series of educational packages for the classroom use called “Breaking the Silence: Teaching the Next Generation About Mental Illness.” Whether out of ignorance or fear or uninformed elders, kids can be lethally cruel. The words “psycho” or “crazy” hurled at a child trying to cope with a mental illness can be devastating, and can lead to suicide.
“Breaking the Silence” grew out of Janet’s early experience with her son’s illness. When she couldn’t bring herself to talk about her son to his friends, she asked if the school’s guidance counselor would talk to them. The guidance counselor declined on the basis of “confidentiality.” She then went to the health teacher, who told her she didn’t teach about mental illness because of the subject’s sensitivity. “But,” Janet says, “she left the door open if someone would provide her with some lessons.” When Janet learned that no such curriculum existed, she and three other teachers who were fellow NAMI members, “plunged in.”
Written on three levels—for upper elementary school, middle school and high school—with age-appropriate stories, games, posters, role-plays and the like, “Breaking the Silence” is now used in schools in every state in the country and a number of foreign countries, and has even been translated into Spanish. The lessons give young people information and tools they can use to help fight mental illness stigma in themselves and others, to recognize the warning signs of mental illness in themselves and those around them, and, importantly, to understand that mental illnesses are treatable, just as potentially fatal physical illnesses like diabetes or cardiovascular disease are treatable.
Janet believes such awareness can only serve to high- light the importance of scientific research. As such, her NAMI chapter helped sponsor participation by NARSAD Grantees working at Zucker Hillside Hospital—the psychiatric facility of the North Shore-Long Island Jewish Health System—in the Brain & Behavior Research Foundation series of one-day national symposia called “Healthy Minds Across America 2010.”
Janet concludes: “One of the beauties of the Brain & Behavior Research Foundation is that it funds new investigators and research that may be risky. I know it’s that out-of-the-box thinking that’s going to make the difference in the future. We’re just so grateful that it exists. The Foundation and NAMI are joined at the hip in our commitment to a better life for our loved ones.”