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Cynthia Boyd

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    'Journey Through Madness' author working to end the stigma of mental illness

    The horror of mental illness struck with a terrible thud in my life recently not once, but twice. 

    Stepping into a cab in Chicago just off Michigan Avenue a few weeks ago, I heard what I imagined to be a muffled gunshot and immediately turned to look. What I saw was a naked body dead or dying on the sidewalk only yards away.  A man apparently had jumped from a sixth-floor window… in full view of diners at a sidewalk café.

    The scene shocked and disturbed me, a TV cop show come to life and death: the epitome of madness.

    Then, driving along Interstate 35W outside of Minneapolis on a Sunday a few days later, I passed another death scene. Police reports suggested a man jumped from a pedestrian bridge, landing in a convertible passing on the highway beneath.

     

     

    So, when I learned that Elyn Saks was coming to Minneapolis, I knew I had to talk with her. I needed a better understanding of the kind of illness that could drive a person to his or her death.  A professor of law, psychology and psychiatry as well as a person with madness, Saks, the author of the autobiographical memoir "The Center Cannot Hold: My Journey Through Madness,'' will keynote the Ninth Annual Jewish Community Conference on Mental Health on Sunday.

    She's coming to demonstrate there is a good life out there in spite of mental health issues.

    Still, stigma clouds mental illness, and talking with her by phone from her office at the University of Southern California's Gould School of Law, I started out on tippy-toes, not sure how frank to be. I wanted to know about that word "madness,'' for instance, which she straight-up bravely uses in her book title. Does she regret calling herself "mad"?

    Elyn Saks
    Elyn Saks

    Saks, who has schizophrenia, said I wasn't the first to ask, putting me at ease with her openness.  Others have asked:  "Why do you use the word 'madness' in your [book] title? It's so stigmatizing, so frightening.''

     "I just wanted to be bold and concrete," she said." I don't mind the word mad, being called mad. I think the word is very vivid.''    

    "The concept? Gosh, it's scary as anything to be told you have a scary mental illness,'' she said. But stigma keeps people from seeking help or knowledge, she said. So she does her best to educate about schizophrenia and spread the word that there is hope.

     (And, just so you know, the conference Saks will speak at is billed as a Mental Health Education Project, an effort Laurie Kramer, MinnPost's membership director, founded some years ago. Kramer is also the conference coordinator.)

    Schizophrenia is a brain disorder that affects about 1 percent, or 3 million Americans, and the prognosis is often considered "grave.'' There's a shorter-than-average life expectancy.

     "I think I should be dead by now,'' scoffed Saks, now 54 years old and associate dean of her law school, a teacher and a 2009 MacArthur Foundation Genius Award winner. She is cited for expanding the options of those suffering from severe mental illness through scholarship practice and policy. 

    She sums up her outlook this way: "Expect everything you expected before you got ill. It may take longer, you may have to work a little harder at it.'' 

    Her mind disease she describes in poetic, understandable terms.  In lines now almost classic, they've been quoted so often in newspapers, online and on air, she wrote, "Schizophrenia rolls in like a slow fog, becoming imperceptibly thicker as time goes on.''

    The illness ranges in its psychotic episodes, varying from "little quirks" to full-blown "falling apart, flying apart, exploding psychosis.'' As a child, she suffered from night terrors, sure a murderer lurked outside her bedroom window. As a teen, she believed houses were sending her messages as she walked down the street at 16: "Look closely. You are special. You are especially bad.''

    As a law student at Yale, she urged her study group to climb out on a rooftop, then started singing and dancing and saying incoherent, delusional things.

    When she was a scholar studying philosophy at Oxford University, her disease worsened. She'd walk the streets gesturing and muttering only to herself, afraid to talk to others. Her inner voice told her: "It's wrong to talk. Talking means you have something to say. I have nothing to say. I am nobody, a nothing.''

    At times, she's imagined herself God. At times, she's sure she can kill people with her thoughts. "Psychosis is like a waking nightmare,'' she told me in her gravelly voice.  "The only trouble is your eyes are open and you can't make it stop.''

    Slowly, she realized she had an illness, but that with medication and psychoanalysis, she could and would reclaim her life; while she couldn't find a cure, she could find control. Her memoir details that journey.

    There is no "off switch" to her illness, only dimmers, like effective drugs, she said. Yet "it doesn't have to be a sentence to a bleak and painful life,'' she said. She sees her therapist four times a week and keeps close track of her medications.

    Saks plans to use the $500,000 grant from the MacArthur Foundation to write another book, this time about other successful high-functioning persons with severe mental illness.

    Her aim: to dispel myths, to give hope to those who suffer from mental illness and to give understanding to those who don't.  She says her life demonstrates that people with severe mental illness can live independently, be successful and find love. 

    Further, she says she's received "nothing but support and warm feelings and kindness" since she began publicly sharing the secret of her illness. She's helped me peek inside her head.   

    For more info

    Sunday's free conference, which includes an array of workshops on mental health issues, begins at 12:30 p.m. and runs until 5:30 p.m. Pre-registration info is appreciated but not required: online here  or by phone at 651-698-0767. The conference takes place at Temple Israel, 2324 Emerson Ave. S., Minneapolis. Nearly 500 are expected.

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    Cynthia Boyd
    Illustration by Hugh Bennewitz


    minnpost.com/cynthiaboyd



    Cynthia Boyd, a former reporter and columnist for the St. Paul Pioneer Press, covers education, mental health and other topics. Write her at cboyd [at] minnpost [dot] com.

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