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If I saw 6-foot, 400 lb. Kenneth Steele wheezing on the streets of Park Slope, I might think he was just a sick, fat man. Yet, thousands of people with mental illness consider Ken Steele's limitations part of his legend. Steele survived 32 years of schizophrenia and made "recovery" a household word. Before dying of a heart attack last October at age 51, he and Claire Berman wrote The Day the Voices Stopped: A Memoir of Madness and Hope (now in hardcover from Basic Books).

Ken Steele and I have a few things in common. We are both writers who grew up in Connecticut during the 1950s. And we both have been mentally ill. Yet, comparing my manic depression to his schizophrenia is like comparing a wood stove to a forest fire. I can feel his pain but only at a distance.

According to the National Alliance for the Mentally Ill (NAMI), 1 in 20 American adults has a serious mental disorder. Doctors estimate that, in a given year, 20% of Americans experience some symptoms of these diseases. However, 40% of sufferers avoid help even though effective treatments are available. If these figures don't make you paranoid, they should warn you that, in spite of improvements in mental health care, many of us still believe a stiff upper lip is the only therapy.

Voice for the Voiceless

Ken Steele spent his last six years in Park Slope. With therapy, medication, and his basic needs provided, Ken improved his condition dramatically. He became a leader in the ranks of mentally ill people who lead independent lives.

During that time, Ken registered 28,000 mental health consumers to vote, successfully lobbied for laws against discrimination, raised funds for research, published a newspaper for advocates, led support groups, spoke about his illness to a wide audience, and gave hope to consumers and their families across the country. The national media featured him and his vision of a more tolerant, integrated society. I believe Ken Steele could have been the first openly "crazy" man in Congress.

Erica Goode wrote in the New York Times obituary, "But Mr. Steele also took pleasure in the simpler rewards of his new-found stability. 'I have a home today,' he said last year. 'I never had a home in my life. I feel like a teenager growing up. I have this incredible appetite to do as much as I can and to grow as much as I can.'"

Dr. Rita Seiden is director of the Park Slope Center for Mental Health. She was Ken Steele's therapist for the last 10 years. According to Seiden, "Ken was born smart and compelling. He always got people to do the right thing….But even after his recovery he sometimes drove me and my staff crazy. ….When NBC television did a program about him, he gave out his telephone number. Ken answered every one of the [1500] calls for help. He didn't understand [the need for limits]. This was his whole life.…At his memorial, there was an incredible collection of people, from all walks of life, who Ken touched personally. A whole generation of consumers and [health] providers were affected by Ken….He ought to have gotten one of those genius awards."

Because the symptoms are so devastating and the stigma so great, schizophrenics rarely speak about their condition. Dan Frey, Ken Steele's successor as editor-in-chief of New York City Voices, A Consumer Journal for Mental Health Advocacy, said,"Ken was one of the few people I know who had the strength to go public with his illness."

Looking Back in Anguish

Ken Steele began hearing voices when he was 14. They were like the chorus of a Greek tragedy or the whispering ghosts in a Stephen King novel, insisting that Steele kill himself. After leaving home at age 18 for New York City, he was greeted with this diatribe:

"Now you are all alone, except for us [voices]….No one at home wants you back. There has been a death in your family, Kenny, it is you. In the big city, you can jump from buildings so high they touch the sky. Imagine the mess you'll make when you hit the street. Climb a tall building, Kenny. Then fly and die. We'll help…we'll help…we'll help. No one else cares. We'll help."

The voices played this cruel game with Steele again and again. He also experienced hallucinations and paranoia. Who wouldn't be depressed if their mind functioned like a rat in a maze. Without treatment, 15% of manic depressives commit suicide. Schizophrenics are much more likely to harm themselves than others. Ken tried suicide often and contemplated death atop several New York skyscrapers, Niagara Falls, and the Golden Gate Bridge.

Was his life more dangerous outside or in state mental hospitals? Wandering from New York to Hawaii, Ken was hospitalized at least 15 times, for as long as two years. He endured straightjackets, bed restraints, seclusion, shock treatment, rape, beatings, and abandonment by his family. Drugs such as Thorazine and Haldol disabled his body (with side effects) more effectively than they repaired his mind.

Up From Insanity

Thanking "a higher power" for his survival, Steele acknowledged the many "ordinary" people who helped him in and out of hospitals. Apparently this humility prevented Ken from recognizing gains made during his illness. He must have attracted these "angels" with his sensitivity, intelligence, and will. I learned from Rita Seiden that he organized patients to demand better treatment. No wonder he progressed from halfway houses and service jobs to independent living and public advocacy.

Unfortunately, his progress was uneven. "I soon found myself repeating an all-too-often pattern," he recalled. "One night, I walked away from house, job, and therapist for no discernible reason except that the voices told me to do it. They were a part of me, like the hair on my head, the nails on my fingers. I needed to prove they were right, to show that I was a failure at everything." By living on the streets of New York, Boston, Denver, San Francisco, and Honolulu, Ken punished himself more harshly than I can imagine.

Eventually, Ken Steele found Risperdal, a drug that stopped his voices. Ken was so overwhelmed by the silence he hid in the bathroom for three days. From that cocoon emerged a butterfly with the sting of a bee.

Love Me for My Mind

Is Ken less a hero because he depended for his good works on government-subsidized medication, therapy, housing, and jobs? I think he is more a human being because he got the help he needed.

Rick Sostchen, Director of Peer Advocacy at the Baltic Street Mental Health Board in Carroll Gardens, recalled Ken's work on the Voter Empowerment Project: "At Brookdale Medical Center [in Brownsville], he came in a wheelchair for a talk to consumers. Ken wasn't well then. I thought how much he struggled to get through. But he lit up, he was informative and funny, even took pictures [for NYC Voices]. Ken was at his best when helping people. 'Love you man' was how he ended a talk and he meant it."

Ken Steele believed anyone who struggles with mental illness is a hero. He left us to hand out the medals.