Elyn Saks has a story that millions of people hide from their friends, their co-workers and even their families. But she wants the world to know about it.
Saks suffers from a serious mental disorder. She has schizophrenia. “Everything about my past says I shouldn’t be here,” Saks says.
But here she is – a professor of law, psychology and psychiatry at the University of Southern California. She is a researcher, an author and the recipient of a $500,000 MacArthur Foundation “genius grant.”
Thirty-five years ago, however, Saks was first-year law student at Yale University suffering a terrifying mental breakdown. Studying with friends one night, she started speaking gibberish and singing the Florida “sunshine song.” Then she withdrew inside herself.
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That episode eventually landed her in the emergency room and led to five months in a psychiatric hospital. She was placed under restraints for up to 20 hours at a time. Her doctors described her prognosis as “grave.” Some expected her to live out her life in board and care homes, doing menial jobs – or living on the streets.
But with the help of a few close friends, her family, regular therapy and medication, Saks held her life together, and then some.
Her experience led her to become a leading opponent of the use of force to control people with mental illness, a practice she says is largely unnecessary. She also believes it is dehumanizing and probably counterproductive, because it keeps many people from seeking the care they need.
The first time she was “retrained,” Saks said, a sound she had never heard came out of her mouth: “It was a half-groan, half-scream, barely human and pure terror.”
Now she describes herself as a “very pro-psychiatry, but very anti-force.”
For a time she also railed against antipsychotic medications. But every time she tried to live without them, she relapsed into illness. She had delusions that she had killed hundreds of thousands of people with her thoughts. She thought she was God, or used to be. She had hallucinations, once seeing a man wielding a knife over her head.
“Imagine,” she says, “having a nightmare while you are awake.”
After one particularly bad episode, her analyst persuaded her to start taking the medication again. Since then she has remained mostly symptom-free, she said.
For most of her life, Saks kept her illness a secret from all but a small circle of close friends and associates. “The stigma against mental illness is so powerful,” she says. “The risk was too great.”
But about a decade ago, after gaining tenure at USC and feeling secure in her life, Saks decided to tell her story. The result was a best-selling memoir, “The Center Cannot Hold: My Journey Through Madness.” The book prompted an outpouring of support and led to her MacArthur grant, which she used to start the Institute for Mental Health Law, Policy and Ethics at USC.
Through her research and advocacy, Saks works to promote better, more compassionate care for people with mental illness, and she fights what she calls the “criminalization” of the disease. She is a champion of judicial initiatives that replace incarceration with treatment and support.
“It is a scandal and a tragedy that the Los Angeles County Jail is the biggest psychiatric facility in the United States,” she says.
Former state Senate President Pro Tem Darrell Steinberg, who made improving mental health care a focus of his legislative career, lauded Saks before a talk she gave last week to the Sacramento Press Club. Steinberg said he hopes that Saks’ story will show lawmakers that mental illness can strike anyone at any time, but with the proper care and support, people can overcome it.
Saks’ is a story of hope where policymakers see mainly despair. Nearly everyone, Steinberg says, knows someone with mental illness, “but the stories are still largely whispered.”
Not when Elyn Saks is around.
Daniel Weintraub is editor of the California Health Report.