Kay Redfield Jamison: A Profile In Courage

By Jacqueline L Salmon







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One of the foremost experts on bipolar disorder speaks out about her work and her journey.

By Jacqueline L. Salmon

The small woman in the black sweater sitting near the podium at the Depression and Bipolar Support Alliance (DBSA) annual conference in Norfolk, Virginia, was intent on her notes, preparing for her keynote address to the crowded auditorium.

One by one, her admirers appeared. They lined up to ask her about medications and doctors, or to vent their frustrations about a medical system that often seems to little understand their illness. And one by one, Kay Redfield Jamison, PhD, listened patiently and answered their questions.

With her blond hair, upturned nose, and girlish cotton skirt and sandals, Jamison looks much younger than her 62 years. She raises her eyebrows when told that she had been expected to be more subdued. “I’m not a quiet person,” she says with a laugh.

Lively and sharp-witted with almost a bird-like quality to her, Jamison sat for a brief interview with bp Magazine at the DBSA meeting in September 2008. It’s tough to get Jamison alone at such a gathering. She is continually bombarded with admirers; she listens to their stories, nodding sympathetically to tales that must seem woefully familiar to her by now. After a few minutes, she slips away from one conversation, only to be wrapped up in another.

At a reception the evening before her address to the DBSA conference, Jamison carefully slid her chair out from against a wall with a practiced gesture so she wouldn’t be trapped if she needed to move away from questioners. The public attention Jamison faces is constant—she received 30,000 letters following the publication of her bestselling 1995 memoir, An Unquiet Mind, a raw and honest story of her own battles with bipolar.

Indeed, the author of five books and more than 100 scientific articles about bipolar disorder has become the public face of the illness because of the book’s impact, and also from her appearances on popular television programs like The Oprah Winfrey Show and Larry King Live.

Those suffering from bipolar illness certainly see her as one of them.

“Her book was very inspiring,” says Susan Millikan of Concord, New Hampshire, who attended the DBSA meeting in Norfolk, marveling at “all that she went through, and she came out from it.”

Recent years have brought significant challenges to Jamison. Her mother, Dell, with whom she was very close, died in 2007. Her husband, Richard Wyatt, chief of neuropsychiatry at the National Institute of Mental Health and “the major support” in her life, died in 2002. But Jamison and her friends say she has rallied from these losses. Moreover, the lithium that she has been taking for more than three decades continues to curb her illness. Despite a “rough patch” last summer, Jamison tells bp Magazine that she is feeling well. “I’ve been very, very fortunate,” she says.

“How she manages is an inspiration,” says Myrna Weissman, PhD, professor of epidemiology and psychiatry at Columbia University and chief of the Department in Clinical-Genetic Epidemiology at New York State Psychiatric Institute, who has known Jamison for years. “She has great intelligence, great spirit, and a wonderful family, and her personal qualities attract many friends who love and support her when and if she needs it.”

During the bp interview, Jamison illustrates her points with rapid gestures, arguing, for example, that “manic-depression” is a more appropriate term for the illness than “bipolar,” which she calls offensive because she believes it minimizes the illness. “The term ‘manic depression,’” she insists, “is the most scientifically accurate, most historically descriptive [term].

“When we say bipolar, it kind of implies there is mania over here,” Jamison adds, moving one hand in one direction, “and depression over here”—she sweeps her other hand in the other direction. “That they are on opposite poles. [But] the ancients made the argument years ago that, in fact, mania was just a severe form of depression. … [the term] bipolar is way too tidy.”

Whatever the illness is called, Jamison is hopeful that its stigma will fade with the strides that have been made in treatment.

“Ultimately, destigmatization comes about through treatment and research,” she states. “If you look at the destigmatization of epilepsy and cancer, it was tied to treatment. AIDS became much less stigmatized when it was no longer believed it was always related to death. Cancer began to be treatable … epilepsy the same way when treatments began to be available. Now we have treatments for depression and, increasingly, they exist for bipolar.”

Jamison’s own resistance to treatment is a major theme of An Unquiet Mind. In 1974, a colleague she had been dating diagnosed her as manic-depressive. The diagnosis came shortly after she joined the UCLA faculty as an assistant professor of psychiatry.

At the time, Jamison was in the middle of a major manic episode. She worked tremendous hours and did not sleep; she couldn’t follow the path of her own thoughts. She engaged in profligate overspending, for example, scooping up 20 books published by Penguin because she thought it would be nice if the penguins would form a colony. She bought expensive jewelry, provocative clothing, and a dozen snakebite kits because she had information direct from God that an infestation of rattlesnakes was imminent.

When Jamison was prescribed lithium, it had only recently been approved for use in mania. The standard medical practice then was to maintain patients at considerably higher blood levels of lithium than is prescribed nowadays. As a result, Jamison had terrible side effects from the drug—severe nausea and vomiting, and slurred speech that at times made her appear drunk and threw off her coordination. Mentally, she had impaired concentration and memory and an almost complete breakdown in her ability to read—devastating to one whose life revolved around ideas and research. In order to understand anything, Jamison had to read the same line repeatedly and to take copious notes. For an entire decade, she didn’t read a serious book of fiction or nonfiction.

Even worse than the side effects, however, was the self-denial, she recounts in An Unquiet Mind. Somehow, Jamison thought she was an exception to the research that shows that the illness not only comes back—but that it comes back more severely and more frequently if left untreated. Like other manic-depressives, Jamison was loath to give up the intense highs. Life seemed less intoxicating, less interesting when she was “normal,” she recalls in her book. Despite the fact she knew the risks, she went on and off lithium for years.

Jamison says part of her reluctance to stay on lithium was her family background. “I was always brought up to be independent. I was brought up in the military—none of these things augers well for taking anything that resembles a crutch, or in any way acknowledges that you can’t just sail through,” she comments during the interview with bp Magazine. “It just wasn’t done in my family. It’s easier now, but it’s still hard for people.”

Between the manias, Jamison had crippling depressions: At the age of 28, she tried to commit suicide by taking a massive overdose of lithium. She was saved when she picked up the ringing phone. Her brother, Dean Jamison (recently retired professor in the anthropology, history and social medicine department at the University of California, San Francisco), was calling from Paris to check on her.

Jamison used that experience in writing Night Falls Fast: Understanding Suicide. She says she decided to write a book about suicide after being shocked by the number of people who came up to her after her book readings for An Unquiet Mind to tell her about their own suicide attempts or the suicide of loved ones—particularly young people.

“There is a huge relationship between suicide and being under the age of 30, but that’s exactly the age group that is least likely to be compliant in taking medication,” Jamison points out.

It was only after the sudden death of her lover, a 44-year-old British psychiatrist, when Jamison was 32, that she settled down to taking lithium regularly and then, several years later, was able to lower the dose and the side effects faded.

Jamison has said she is grateful that lithium continues to work for her. Indeed, with greater mood stability, her creativity and productivity increased exponentially—as did her capacity for happiness.

Fearing that disclosure would damage her academic and hard-won professional career, Jamison kept her illness secret from even her closest associates. She did inform her bosses, however, and received nothing but encouragement from them, she

related to the packed auditorium at the DBSA meeting in Norfolk.

Her big break professionally came when Frederick K. Goodwin, MD, research professor of psychiatry at George Washington University—who was one of the few who knew of her illness—asked her to coauthor the textbook Manic-Depressive Illness, first published in 1990. Goodwin says he requested Jamison as his coauthor because he knew she could understand the illness in a way he never could and therefore would add a deeper dimension to the book. The pair recently updated this textbook, and it was re-issued in 2007.

Only after the publication of Manic-Depressive Illness and Touched with Fire, her 1993 book about the link between creativity and manic depression, did Jamison decide to write a book about her own illness. She had grown weary of hiding her secret and was tired of “the hypocrisy and tired of acting as though I had nothing to hide.”

Colleagues say Jamison was shrewd to wait to make a public revelation until after she had established her professional credentials with Manic-Depressive Illness. “She wasn’t well-known, and the book gave her a kind of a scholarly anchor,” says Goodwin.

“She was smart in terms of taking care of herself [first],” adds Kenneth Duckworth, MD, medical director of the National Alliance on Mental Illness (NAMI) and assistant clinical professor of psychiatry at Harvard Medical School.

Written for a general audience, An Unquiet Mind caused a sensation in her own field, as well as among the public, catapulting Jamison into her now familiar role as a well-known figure and authority on bipolar. The honors came thick and fast—she was named one of the Best Doctors in the United States, and was chosen by Time magazine as a “Hero of Medicine.” In 2001, she won a MacArthur Foundation “genius” grant.

Today, a major figure at conferences and public events, Jamison urges those with bipolar who approach her to stay on their medicine, although she points out that resistance to treatment is a factor with other illnesses and medicine as well.

“It’s not unique to psychiatric patients and it’s certainly not unique to bipolar,” Jamison tells bp Magazine. “You can’t get people to stay on a 10-day course of antibiotics. … So why [some individuals] think that people should stay on medication indefinitely, with very serious side effects that are stigmatizing, cost money—very often that they don’t have—is beyond me.”

These days, Jamison works mostly out of her home in Washington, DC, and travels one day a week to teach at Johns Hopkins University School of Medicine in Baltimore, where she is professor in the Department of Psychiatry and Behavioral Sciences. She also travels regularly to coastal Scotland, where she is honorary professor of English and neurophysiology at the wind-swept University of St. Andrews. Here she found a source of peace and creativity after spending a year there while an undergraduate at UCLA.

As always, Jamison uses her personal experiences to fuel her work. She is currently writing a new book—a sequel to An Unquiet Mind called Nothing Was the Same, which is due out in the spring. She tells bp that it will focus on the differences and similarities between grief and depression, as well as her recovery from her husband’s death.

Jamison says she wants to speak out for those suffering from bipolar who—because of a lack of information, poor medical advice, stigma, or fear of personal and professional reprisals—do not seek treatment at all.

“I think pharmaceutical companies have sort of made it a much more benign-sounding illness than it is,” she tells bp Magazine. “It remains a very severe illness.”

Meanwhile, officials of groups advocating for the rights of the mentally ill say they are grateful for Jamison’s support of their organizations and her visibility.

“Mental illness is a club that nobody wants to belong to,” says Duckworth of NAMI. “And when you find attractive, compelling, amazing people who are in the club—who are successful and likeable and brilliant—it makes it easier to contemplate joining. So every time Mike Wallace, Jane Pauley, or Kay Jamison says, ‘You know, I’m in this club, too,’ that’s very powerful information because a lot of people spend a very long time fighting being in the club.”

In her DBSA speech in Virginia, Jamison gave a powerful defense of the illness and what it can offer those who suffer from it.

“To suffer is to have learned,” she told the rapt crowd, pointing out that creative geniuses like Anne Sexton, Robert Lowell, Virginia Woolf, and Edgar Allan Poe (“never really chipper even on a good day”) used their suffering for their work.

All of us should learn from the turmoil and pain in our lives, Jamison told her audience. Manic-depressive illness, she reminds, “is not a gentle or easy disease.”

“I believe that curiosity, wonder, and passion are defining qualities of imaginative minds and great teachers,” she continued, “that restlessness and discontent are vital things; and that intense experience and suffering instruct us in ways that less intense emotions can never do. … It is important to value intellect and discipline, of course, but it is also important to recognize the power of irrationality, enthusiasm, and vast energy.”

For her fans, who gave her a standing ovation, Jamison continues to speak for them.

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Tips from an expert

Here are suggestions from Kay Redfield Jamison, PhD, professor of psychiatry at Johns Hopkins University School of Medicine, above.

Stay on your medication.

Get regular sleep. “[This is] far and away the most important thing next to medication.”

Get psychotherapy if you can afford it.

Get involved with a support group, such as those available through the Depression and Bipolar Support Alliance (DBSA).

Read and learn about your illness. Go to good Web sites such as www.dbsalliance.org and www.nami.org.

Go in with a list of questions when seeing your doctor. “Never assume competence until it’s demonstrated. Question, question, question. Badger, badger, badger.”

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Printed as “Kay Redfield Jamison: A profile in courage“, Winter 2009