LAT: Ed Knight: "Don't Give Up Your Delusions Of Grandeur. Those Are Your Goals."

NYAPRS Note: Thanks to Laura Van Tosh, here’s a stirring 1996 news article providing some details of Ed Knight’s inspiring story and historic contributions to the recovery and peer support movements that came to transform mental health services across the nation. Please forgive some of the language.

Here are some especially inspiring details:

“I'm director of an organization that has started 500 mutual-support groups," he says. "I'm involved in research. I've published 16 articles."

“He has worked with New York state's mental health bureaucracy to give recipients a voice in designing the system that serves them.”

Because of Knight's organizing work, "thousands of people with mental illness are now sitting on committees, heading task forces, defining what they want, evaluating programs."

"Don't give up your delusions of grandeur. Those are your goals."

It's that kind of support that helps people draw upon their own strength to recover.

"I'm really not all that unusual," Knight says. "Anyone has the same chance at recovery as I did."

Schizophrenic Finds Way Out of Pain to Help Others

By Mary Esch  Associated Press  June 16, 1996

ALBANY, N.Y. — Edward Knight sat before the psychiatrists. He knew the questions. He'd been through the drill.

Was he ready to leave the hospital? Were his schizophrenic symptoms at bay? Would he end up back on the street, tormented by voices?

What did he plan to do with his life?

"Do scientific research on schizophrenia," he said.

Delusions of grandeur, wrote the psychiatrists.

"Start self-help and advocacy groups," he said.

More delusions.

"How about writing?"

Be realistic, they said. You've been in and out of mental hospitals for seven years.

"I was a back-ward patient," Knight says now. "I was never supposed to be able to do anything except maybe, if I was lucky, do filing, if I was able to concentrate on the ABC's.

This, despite his PhD in social research.

Paranoid schizophrenics don't recover. That has long been the prevailing belief in psychiatric treatment. Medication may subdue the symptoms, but sooner or later the mental demons will be back with a vengeance.

But the conventional wisdom has shifted in recent years, and Knight has played an active role in that change. He represents a new way of thinking, through his personal struggle as well as his work as a self-help advocate, researcher and champion of mental health care reform.

"I've been all the things they dismissed as delusions of grandeur," says Knight, 53, sitting in the office of the Mental Health Empowerment Project, which he founded eight years ago.

"I'm director of an organization that has started 500 mutual-support groups," he says. "I'm involved in research. I've published 16 articles."

Since his last release from a psychiatric hospital in 1983, Knight has crusaded on behalf of his fellow "recipients," as he calls those who receive psychiatric services.

He has worked with New York state's mental health bureaucracy to give recipients a voice in designing the system that serves them.

"He really helped create a change in attitude," says Andrea Blanch, an associate commissioner of Maine's Department of Mental Health who formerly worked for New York state.

"Before, it wasn't taken seriously that people with mental illness know best what services work for them," says Blanch. Because of Knight's organizing work, "thousands of people with mental illness are now sitting on committees, heading task forces, defining what they want, evaluating programs."

Knight also has engaged medical professionals in a discussion of the self-management of psychosis from the point of view of one who has been there and back, Blanch says.

"It's changing our thinking about mental illness and what the possibilities are for recovery," she says.

Knight is writing a book on how people draw on their own strengths as well as peer-support groups to overcome mental illness and avoid relapse.

"When somebody is treated only as a passive patient, that compounds feelings of helplessness and hopelessness," Knight says.

It was his own experience with schizophrenia that gave Knight the empathy and zeal he brings to his work.

In an interview in his second-floor walk-up office, Knight belies the stereotypical images of mental illness--images, he says, that reflect society's ignorance and disdain.

He is gracious and sincere. He has a professorial air as he dons heavy glasses to scan studies supporting a point. He speaks enthusiastically about academic and political issues, but is more reserved about his personal struggle with psychosis, homelessness and hospitalization.

"Some of it I just don't want to recall," he says. "It's so horrible."

Knight was first diagnosed with schizophrenia in 1969.

He was living in a crime-ridden ghetto on the South Side of Chicago, doing community organizing work. He was working toward his doctoral degree on scholarship. And his wife was dying of cancer.

"I was terrified I'd wake up and she'd be dead next to me," he says. "Everything in my life was uncertain."

He became paranoid that people were following him, and believed angels were helping him. "I began to hallucinate. I saw heaven."

Over the next seven years, he was committed to mental institutions many times. He went through homeless periods. Sometimes lost, sometimes lucid, he wandered around and did odd jobs like mowing lawns.

But between psychotic episodes, he completed his doctorate from the New School for Social Research in 1979.

He prefers to talk about incidents that brought him back into the light rather than those that spiraled him into despair.

"I remember being in a ward, sitting with a lot of schizophrenics and severe manic-depressives who rocked and smoked or paced the floors. Basically, we were all considered helpless," he says. "I made a conscious decision to find a way to help heal these people and myself."

He didn't find it until he hit bottom.

"I was walking a hospital corridor looking for ways to commit suicide," he says. "The emotional and physical pain was so bad that I had trouble putting one foot in front of the other." Death seemed the only relief.

"Then I just stopped in the hall and prayed. My prayer was simply, 'Help.' "

The next morning the pain remained, but the despair had dispersed. He started analyzing his condition and looking for ways to cope.

"I had been experiencing severe free-floating anxiety," he says. "I was terrified of everything and nothing. I had to deal with that."

Using a meditation technique borrowed from mystic Sufism, he learned to concentrate on his anxiety so he could figure out what triggered it.

"Then I began to have lots of bad memories," he says. "I'd feel like I was going to become symptomatic because I was overwhelmed by emotion."

So he used the same concentration exercise to take his attention off his feelings and onto something pleasant, such as nearby trees, until the flood of emotion and anxiety passed.

His psychiatrists dismissed his ideas about focusing attention on and off anxiety as a means of coping with it, Knight says. Now, he's teaching the technique to others and continuing to use it himself.

It was before his release from his last hospital stay in 1983 that the psychiatric review panel dismissed his career plans as "delusions of grandeur," Knight says.

But one psychologist took him aside and encouraged him. Knight was so moved by what the man said that he had it printed on T-shirts passed out at a recent self-help conference:

"Don't give up your delusions of grandeur. Those are your goals."

It's that kind of support that helps people draw upon their own strength to recover.

"I'm really not all that unusual," Knight says. "Anyone has the same chance at recovery as I did."

http://articles.latimes.com/1996-06-16/news/mn-15564_1_physical-pain/2