Living with Voices: Ken Steele's Story
What is it like to go through life harangued by cruel voices?
Posted April 26, 2018
The Day the Voices Stopped by Ken Steele and Claire Berman describes Steele’s painful, sad, amazing life, and his progress over many decades from uncontrolled schizophrenia to managing his symptoms and eventually finding a medication that eliminated his voices. Though these voices plagued him continually from the age of fourteen, causing him to run from one situation to another, he managed to make friends and accomplish impressive work.
The voices constantly told him he was no good, he should kill himself, and variants on this theme. Though doctors more than once told his parents he needed psychiatric care, their denial was too deep for them to seek help for their son. Instead, when he turned eighteen, they sent him off to New York to make his way on his own.
In the city, despite the voices, he was able to hold a job for six months. When that ended and he had no way to support himself, he fell into the life of a male hustler controlled by a man he feared and loathed so much that before long he ran away from him. Intending to jump to his death, he found his way to the roof of a tall building and ended up being rescued and taken to Manhattan State Hospital on Wards Island in the East River. (This was the first of a long series of hospitalizations Steele experienced from New York to Hawaii, so many that he joked that he could have written The Schizophrenics Coast to Coast Guide to Psychiatric Institutions and Halfway Houses.)
At Manhattan State Steele was overmedicated and kept in restraints for months before being allowed to be with other patients in the day room. He became friendly with some of the attendants as well as another patient, revealing a gift for friendship that helped him many times over the years. His next stop was Harlem Valley State Hospital in upstate NY. There, after being raped so brutally he required surgery, he was placed in a locked geriatric ward to provide him with more protection. When he was well enough, he returned to Manhattan Hospital and improved until a social worker contacted his parents, who refused to play any role in helping their twenty year old son.
He had been finding ways to avoid swallowing his medication for months; after his parents’ rejection, his depression and voices overwhelmed him. He ran off, as he was to do many times, and hitched a ride to Boston, where he lived on the streets and in parks until he was again picked up by the police. By now he was not speaking, even to give his name. He was admitted to yet another hospital as John Doe and as he recovered began to create a fictitious persona as K Shannon Steele, whose parents had died in an airplane crash when he was eighteen.
Promoted from hospital to halfway house, he worked at a job in a nursing home, where he became friends with a nurse who suffered an assault and was badly injured. In the “psychotic storm” that followed, he again ran away. This time he wound up in Denver with Karl, a companion and lover who was supporting him, only to be devastated by Karl’s suicide. It was a sign of his progress in handling his illness that at this point he took himself voluntarily to the hospital.
After years of drama, hospitals and running, he arrived in San Francisco intending to kill himself. Instead, he soon made friends and found work as a cook. He even went voluntarily to a psychiatrist for a prescription for Trilafon, the med he had found worked best for him, another indication that despite all his troubles, he knew he needed help and was willing to seek it out.
After another major breakdown, he threw himself into Dianne Feinstein’s campaign for mayor of San Francisco, finding a sense of empowerment in this work. Later, when he had moved on to Hawaii, Shannon Steele told people he had attended Harvard College and business school and been Feinstein’s campaign manager. He was living then in a halfway house and volunteering at a Mental Health Center, where he came across the new term, mental health consumer. He wrote a paper on the difference between being a patient and a consumer, and then a grant proposal that won $60,000 for a new outfit, the Office of United Self Help, an umbrella for a number of self-help groups for mental health consumers in Hawaii.
Although at a certain level he believed the fictions he was living, he also feared being exposed, as his voices warned he would be. Once again he fled, this time returning to New York, again suicidal, again saved by the police. And so, twenty years after his first hospitalization he was back in the facility where he had first been hospitalized on Wards Island. Gradually he recovered enough to be able to live at Fountain House, a supportive residence for those with mental illness. He found a therapist he could trust, and as he grew stronger he even had connected with his parents. Finally he began to tell his therapist the truth: he was Ken, not Shannon. He wasn’t an orphan, he never attended Harvard or ran Diane Feinstein’s campaign for mayor of San Francisco.
At the same time he was putting out a newspaper covering mental health issues, New York City Voices. He also organized a campaign to register people with mental illness to vote, signing up 35,000 voters in New York City alone.
Most amazing of all, at the age of 47, in response to a new medication, he realized his voices had fallen silent. At first he was shocked and frightened. For months he didn’t tell his therapist out of fear the voices would return and because he didn’t feel ready to “face the challenges of a new life.”
Sadly, this breakthrough came when Ken Steel had lost his health. Over the years he had gained a great deal of weight and developed asthma, a weak heart and sleep apnea. He died at the age of 52 before the publication of the book that should inspire us all.