Bringing bipolar into the light

"It's shocking to me that we're still afraid to say 'bipolar' out loud, so I do often, clearly and without shame," Hornbacher said, sitting right there in the middle of a busy coffee shop. "You do know bipolar people _ successful, stable bipolar people -- and that's why you don't know."

To say that Hornbacher wasn't always successful and stable is a bit like saying that Angelina Jolie wasn't always a humanitarian. Her memoir, "Madness: A Life" (Mariner, $14.95), is a tough read, often nightmarish, as she tracks her ascent into manic episodes, with the descent always lurking in subsequent pages.

Hornbacher, 34, a Minneapolis writer, begins at the beginning, describing nights as a terrified 4-year-old screaming for her mother to shoo the goat man from her bedroom, shrieks that continue until her mother draws a bath, lowering her into the calming water.

Not until Hornbacher was 23 was her bipolar disorder diagnosed. Those 19 years are actually close to the usual time between onset of symptoms (typically around age 23) and correct diagnosis (about age 40). But Hornbacher was only a child, so no one thought that manic depression possibly could be the reason for her behavior.

That's why she's speaking Wednesday at the fourth annual National Ted and Roberta Mann Symposium About Children & Young Adults With Mental Health and Learning Disabilities, sponsored by the PACER Center and the Mann Foundation at the Sheraton Bloomington Hotel. She'll speak to parents and teachers at a free symposium about the challenges of correctly diagnosing mental illness in young children and teenagers.

'THE KINDLING EFFECT'

Early diagnosis is important because of "the kindling effect," in which the more manic episodes you have, the more you will have. "Over time, you start to lose the chemical ability to fight off episodes, so the earlier in a person's life we can diagnose, the better their chances of avoiding future episodes," she said.

Bipolar children may have other conduct disorders diagnosed, such as attention-deficit/hyperactivity disorder (ADHD). As they move into their teens, "the question becomes, 'What's hormones and what's brain chemistry?'" She once asked her mother how she coped, "and she said, 'We kept trying to expand the boundaries of normal.' Like, 'Maybe it will make sense if we do this,'" Hornbacher said.

Sure, her parents were in denial, "but I have to also say that there was such a lack of information." The term bipolar wasn't used until 1980. Most of the 5.8 million Americans with bipolar disorder have been misdiagnosed at least once. "Bipolar doesn't go away," Hornbacher said. It's in the DNA, a brain disease like Alzheimer's or Parkinson's. "It just gets a lot less funding," she said.

Researchers are still working to develop a medication specifically designed to treat bipolar disorder, which makes the challenge of medicating children even more difficult. Yet along with the medication essential to smoothing the peaks and valleys, Hornbacher said that it's crucial that entire families be involved in treatment approaches. That usually means adults need to be willing to confront some difficult history, to talk about "the odd Uncle Jims" in the family tree, and to do it without blaming. "A brain disease is faultless," she said.

She urges parents to involve their child in managing their behavior, as well, "because that's how independence is created," she said. "We need to help them learn about mental wellness. I mean, I have a really great, mentally well life, and I have a mental illness. There's a real empowerment in this that kids need. Assess, accept and heal. That's not our usual model. The temptation is to go into attack mode: 'We will fight this thing!'"

Hornbacher talked about the importance of kids finding "a peaceful place" in the world or in their head when they feel a looming lack of control. "I went down pretty hard before realizing I needed to make a greater effort to find a peaceful place," she said, a saga that unfolds in "Madness," but also was foretold in her "Wasted: A Memoir of Anorexia and Bulimia," which was nominated for a Pulitzer Prize in 1999.

Today, Hornbacher said her peaceful place "comes and goes, comes and goes." There is medication, yoga, meditation, the lake. There is lots of time spent with her friends and her family. Her mother lives two blocks away, her father five blocks.

Hornbacher said she's done with memoirs, "having bled over enough pages," she said wryly, and is working on another novel and a collection of poetry. But she doesn't regret baring her illness to the world.

"I've gotten thousands of letters from people saying, 'You told my story.' And that is the key to memoir writing: It isn't telling your story, but telling their stories by telling your own."

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