A tired and oddly romanticized yoke has been linking creativity and illness for a long time, particularly in those cases where the illness is a form of insanity and the creative person who’s afflicted is a “genius”–or, more precisely in our culture, a mentally ill person who’s earned a dollop of fame. An endless stream of articles, books and conferences have remarked on the appearance, in many notable lives, of the supposed fraternal twins of madness and creativity.

However, most severe mental illnesses are now known to be plain old physical illnesses in line with Parkinson’s, Alzheimer’s and epilepsy: brain diseases, period. And the acutely psychotic, like most other profoundly ill people, are in an agony that fills their every pore and leaves no room for what art snobs, social historians and psycho-dabblers call “creativity.” That’s not to say that disease and infirmity can’t have an effect on the creative impulse. But it’s more likely that most art and achievement of “genius” related to illness is made during periods of remission and convalescence–or, for the fortunate, after the illness has passed–than it is during illness’s full flower. Anyone who has faced the devastation of cancer and its treatment, of a grinding depression, or of a bone pain that no drug can allay–will tell you that when such an illness has its claws in deep, it’s impossible to even think about lifting a hand to write the book, compose the symphony or paint the masterpiece. Only during an ebb, however brief, is there hope enough to plant a bulb in the earth, make love or write a story idea on the back of an envelope.

It’s time to stop glamorizing the manifestation of “madness” as a conduit to creativity, and take a hard look at what the lives of the mentally ill are really like. If you really want the insider’s view on severe mental illness, toss aside your copy of Girl, Interrupted or The Bell Jar and read Ken Steele’s remarkable book detailing his bout with schizophrenia, The Day the Voices Stopped.

Oftentimes, it takes someone who has been to the other side and back to truly communicate how horrid severe mental illness is. It’s even more remarkable when this person can reach out to other people and effect social change. In this singular memoir, Steele documents his 32 years dealing with his schizophrenia. From age 14 he was plagued by voices urging him to kill himself, to burn himself alive–not thoughts, actually, but voices, like a radio station that can’t be turned off, voices that override and jumble together with the sounds of the real world. Steele’s book describes a life in and out of mental institutions, the abuse he suffered in substandard facilities, his loss of family and identity, and the fateful day that he entered a treatment program and was offered Risperdal, a new antipsychotic medication. Remarkably, several months later, his hallucinations stopped altogether.

It’s a riveting story, and Steele’s description of the day the voices stopped allows someone who has never experienced auditory hallucinations to appreciate the relief and fear that comes in such a moment:

One minute the voices were babbling away; the next they were gone–replaced by a persistent, mantra-like om from the living room air conditioner. Something must be wrong with it, I thought. … I turned the air-conditioner off … only to be accosted by a loud whir from the electric motor connected to my newly installed tropical fish aquarium and the drip-drip-drip of water, like the steady beat of a drum, trickling from the filter into the tank. … I was being bombarded by the everyday noises. … I turned on the television and the radio, switching from channel to channel and station to station in a frantic attempt to tune my voices back in. I wanted them to return! Even when I was homeless they lived with me. … Without them, I felt very much alone. … What lay before me? How would I deal with it? What if they were truly gone and, with them, the world as I’d known it for more than thirty years? What would I do? How would I function?

There is a moment in the film Awakenings when Robert De Niro is briefly released from his catatonia by an experimental drug. Imagine that this sort of awakening will soon happen to many schizophrenics like Steele: People who have spent their lives in institutions or on the street will suddenly be effectively treated after years of illness. It’s a miracle that can quite quickly turn into another type of hell, because it’s also something we’re not ready for. Where will these people go? Who will help them find places to live when their disability benefits disappear because they are no longer classified as ill and have to get a job? And how will they apply for a job and explain 5-, 10-, 20-year lapses on their resume?

From his remarkable experience and effective treatment, Steele saw that this future was coming, and he made it his priority to become one of our country’s most outspoken advocates for the treatment of the mentally ill. He founded a mental health advocacy newsletter, New York City Voices, and started the Voter Empowerment Project, which registered over 28,000 disenfranchised mentally ill voters in New York so that they could vote on policies that would directly effect their lives. He spoke publicly about his experiences to the mentally ill, their family members and to professionals. He started a support group called, appropriately, Awakenings. This peer-run support group helped those with schizophrenia and other psychotic mental illnesses live functional lives; deal with feeling abandoned by siblings, children and parents; and deal with explaining their medical history to their employers.

Ken Steele died suddenly of heart failure last October. In his book he wrote that he hoped to see his miracle become ordinary, and to see the suffering endured by the severely mentally ill and their families someday subside. Steele’s life, ravaged and nearly destroyed by schizophrenia, but given back to him by medication and his own grit, shows the most beautiful creation that can come from illness: the art of human compassion. Steele demonstrated that each life, no matter how wretched or hopeless it may appear at times, always contains this possibility. EndBlock