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Unrecognized Vulnerabilities
I USED TO BE FAMOUSLY NORMAL. According to an article I read in the New York Times several years ago, that was the quality that got me my job on TODAY in 1976. A former president of NBC News once said I had "the best mental health in the business." I became accustomed to being celebrated for the simple act of keeping my head on straight and having my feet on the ground. In fact, the aspect of my public image that squared most perfectly with my self-image was precisely that: being normal. Not that there was a lot of competition in network news for the title "most normal," but it seemed I had the territory pretty much to myself. Then, eight years ago, I was diagnosed with bipolar disorder. It was a stunning revelation at age fifty, but not a mystery. An unforeseeable—but irrevocable—medical mistake had been made. Medication prescribed for treating hives had "unmasked" a previously unrecognized genetic vulnerability to bipolar disorder. Where did it come from? There was no history of mental illness in my family—to my knowledge. But family history and family secrets might be the same thing, and even now I can only speculate. (Salman Rushdie writes, "Most of what matters in our lives takes place in our absence.") I never knew my father’s parents, or much about them. As children, my sister and I somehow got the message not to ask questions like, "Why doesn’t Daddy have a mommy and daddy like Mommy does?" I know now; it was such a sad story. Albert Pauley, my grandfather, died of leukemia when my father was only twenty-three. And just three months later, Margaret Pauley, my grandmother, was killed in a one-car smashup. I was grown up before I realized that my father had been driving the car. He didn’t talk about his parents much or even put their pictures on the mantel. It was such a surprise when I found a picture of my grandmother as a young woman and peered into deeply intelligent and distinctive-looking brown eyes. My youngest son has those same eyes! But if Daddy ever noticed the striking resemblance, he never mentioned it. Had I inherited something from my grandparents as well? I’ll never know, but bipolar is a disorder with a strong genetic component, and nine years ago my "genetic vulnerability" became an actuality.
IT STARTED WITH HIVES, A VARIETY THAT CAUSES SWELLING in soft tissue—typically the eyes and lips. Until swelling in my throat got me a trip to the ER in an ambulance, I’d never considered that hives could be lethal. I remember a doctor saying, "We have to smack them down!" Steroids are powerful, life-saving drugs and always used with great caution, gradually laddering up and gradually scaling dosages down again. Steroids are also "notorious mood looseners," according to an article on WebMD explaining what happened to me. I remember the "up" side as a remarkable period of high energy. I got a lot done! The down side wasn’t so great. I just kept going down. And down. Depression is a known side effect of steroids. So I was prescribed antidepressants for what was diagnosed as a "garden variety" case of clinical depression. It was another five months before I finally started feeling better. And better. By February 2001, I’d never felt better in my entire life! I was in terrible trouble. It was the very first day of a six-week sabbatical from NBC. I intended to make the most of it. My calendar was packed with meetings. And I planned to work on my book—a memoir. Sitting across from a doctor who knew me well, I filled the hour with enthusiasm and confidence and big plans. At last he said: "Jane, you seem to be racing." Recognizing the symptoms of hypomania (mild, nonpsychotic), he asked if I knew anything about bipolar disorder. I knew it was once commonly called manic-depression. I knew about Ted Turner. I knew it wasn’t good news. I didn’t know it was catastrophic. Those steroids and the subsequent antidepressants had been like a two-stage rocket booster, propelling me into low orbit. He said we’d hope for a "soft landing." When I left his office, the doctor called my husband and said, "Your wife is very sick." Garry was almost relieved. While everyone else had seemed delighted with my new energy and vivacity, he only grew more and more concerned. Every day it seemed I had a new plan. And there was the shopping. He didn’t know then that shopping and spending money is a weird signature symptom of hypomania (Mary Todd Lincoln once bought 300 pairs of kid gloves in a single shopping spree). I thought it odd when my doctor asked if I’d recently made any "major purchases." He seemed to swoon when I said, "I bought a house." I tried to reassure him that it was just a very little one—only a cottage. Then he broached the matter of who to tell and what to say, helpfully suggesting a well-intentioned cover story—that I was being treated for a thyroid problem, which was true—but not the whole truth. I recognized that shadowy "stigma" had entered the picture. But I was ready to take it on! My poor doctor. I told him as I was already at work on a memoir I called Skywriting, weaving bipolar into the narrative would be easy. But I knew I should get better first—taking a "soft landing" for granted. I had no idea what turbulence lay ahead for me...and my family.
WAITING FOR MY MOODS TO LEVEL OUT, I felt an irresistible urge to organize closets and kitchen cupboards, or rehang pictures at 8:00 in the morning. Reading the newspaper, which had been my favorite morning ritual, was no longer appealing. Several weeks before the diagnosis, I’d noticed that preparing for Dateline interviews had become a struggle. Reading a book was nearly impossible. I didn’t know why. Difficulty reading, it turns out, is one of the signature symptoms of hypomania. But I could write all day long. Garry had never been enthusiastic about this memoir project, but now he appreciated that writing gave me something to do during the day. My powers of concentration were impressive and my output prodigious. Some people say the high-energy phase is almost worth the devil that lurks behind it. I enjoyed a few weeks of high-octane creativity and uncharacteristic confidence, but after that it was just an idling engine on overdrive. The intensity of thought was exhausting. Living with me had to be very hard. Bipolar isn’t a cognitive disorder; I hadn’t "lost my mind." But I had no control over my mood state. My emotions were amplified. And my primary emotion was anger. Bipolar is an opportunistic disease, like a swarm of bees, and that anger looks for a target. Garry was mine. Our daughter leapt to her daddy’s defense like a little Athena. If I’d been diagnosed with cancer, the family would likely have regarded it as our shared enemy. That’s what makes mental illness so hard on families: I was the enemy. An angry wife and mother alienates the people she loves and needs most. Life had to go on with or—increasingly—without me. One morning, I overheard Garry sending the kids to school and asking if they had umbrellas. It hit me like a thunderclap because I’d always been "the weather parent." It felt like I was being replaced. Bipolar can be an isolating disease, and isolation is dangerous. Bipolar also can be a fatal disorder, related to more than 26,000 deaths a year in the United States—as a result of suicide. By coincidence, just several weeks before my diagnosis, I’d done a story for Dateline about a suicide attempt by a young woman, told by a family that hoped, by telling their story, to save other lives. She was a lovely teenager—a star athlete, good student, school leader—who drove to Maryland’s Chesapeake Bay Bridge one Sunday afternoon and dove off. Although it was the equivalent of leaping off a ten-story building, being an athlete, she entered the water like a diver and, incredibly, suffered no major injuries. What was nearly as incredible was that nobody had recognized the symptoms of severe depression. I never had suicidal thoughts, but that spring I’d been thinking about her. I was talking about her suicide attempt when my doctor asked if I might be "more comfortable in a hospital." Suicide can be a long-nurtured plan, as it had been for that young woman, but it’s often a completely impulsive gesture. My doctor was rightly unnerved by my sudden interest in the topic of suicide. He walked me home and left instructions that I wasn’t to be left alone. He was going to be a lot more comfortable when I was in a hospital. The next day I checked into the hospital for a three-week stay. That first night was my "hard landing." I realized that the nurse by the bed wasn’t going to be leaving, and when she told me I had to keep my hands above the covers, I think I faced the reality of mental illness for the first time. Mental illness was no longer an abstraction to me; I felt like an abstraction. My six-week sabbatical quietly segued into a six-month leave of absence. My family and all of our friends knew. The president of NBC News and the executive producer of Dateline were told right at the start, but the story never got out before I was well enough to tell it myself. I was glad to have a cover story after all—writing a book. Although, ironically, I began to lose interest in writing. Finally, I returned to work. The next day was September 11th. After that, the entire country was suffering from "unrecognized vulnerabilities." Slowly, life returned to normal—for all of us.
ONE EVENING, TWO YEARS LATER, Garry was unpacking a bag after a trip. "How was your flight?" I asked. "Fine," he said, "I had some good reading—your book." I was surprised, not remembering I’d e-mailed some sample chapters before my troubles began. I was even more surprised when he went on to say, "If you still think you have a story to tell, I think you’re equipped to tell it." Garry is the writer in the family. And I interpreted his blessing to mean, "You’re a better writer than I thought you were; I don’t think you’ll embarrass yourself." I went right to it. Sadly, my earlier prodigious creative output under the influence of hypomania was terrible, unusable. I started all over. When Skywriting was released in 2004, I was preparing for my first public appearances, and I asked Garry for some ideas. He suggested that I read something from my book, and the particular passage he had in mind was the one that most vividly described what it felt like when my brain was under the influence of hypomania. Only then did it occur to me that his encouragement to write my memoir had been far more than an endorsement of my writing ability. The "story" he alluded to was my mental illness. And he had encouraged me to tell it. After our third child went away to college, Garry and I downsized. One day, I realized that our new home had the same river view as my hospital room. A water-color of the African violets I’d tended there was hanging in my home. Wasn’t it interesting, I thought, that a period that might have been filed as "the worst of times"—wasn’t. I mentioned this to Garry, whose recollection of the episode is not quite as sanguine as mine. He thought about it and finally said, "You must have felt safe." I’m sometimes applauded for having the "courage" to tell my story, but courage had nothing to do with it. It began with feeling safe at home. Not everyone does. And being diagnosed with bipolar disorder at fifty is very different than being diagnosed at thirty—which is more typical. Also, as a journalist for more than thirty years, I knew about the power of personal narrative; I was always looking for some redeeming aspect to a story. From the beginning, not only did I know my illness would be a story, I also recognized its redeeming potential. Who, I confess to thinking, was more uniquely equipped to be a role model and advocate for other people with mental illness?
I LATER LEARNED THAT RE SEARCH HAS DEMONSTRATED that giving support is as therapeutic as getting it, and I can attest to that. It’s been a blessing to be able to talk openly about my illness. My goal has been to bring mental illness into mainstream conversation. Talking about my own experience is a way to get the conversation started. I call it "talk therapy." People sometimes ask me for medical advice. I don’t mistake personal experience for professional expertise, so the only advice I give is to "see a doctor." But I often have serious qualms about that. Neuroscientists tell me that bipolar disorder will probably come to be understood as a range of different illnesses. While they are learning more every day, for now, getting the right diagnosis can be a long, frustrating process of trial and error. And finding a doctor qualified to make the diagnosis can be a problem, too. A friend of mine takes antidepressants prescribed by her gynecologist. I know that mood disorders are prevalent in her family (her mother has bipolar disorder). Does her doctor know? I suffered the consequences of unrecognized vulnerabilities, but hers are plainly recognizable. Does he understand the relevance of her family history? Should some doctors be making referrals instead of writing prescriptions? As a journalist, I can only ask the questions. As a mental health advocate and patient, I have three modest goals: one is to help people with mental illness understand that we have a tough—but treatable—illness. Another is to encourage the rest of you to recognize that mental illness is a treatable medical illness. My third goal is to see the conversation about mental illness de-"stigma"-tized. The stigma is real, but I try to limit using the word in my public talks. I think it’s counterproductive. Just as it’s true that saying "don’t think about elephants" is a sure way to get elephants on the brain, invoking the word "stigma" opens the floodgates to the unconscious mind where a lifetime of stereotypes and negative associations with mental illness are stored. Instead of banishing these charged emotions, whenever we explicitly remind people of "the stigma," whatever our intentions, all of those outdated connections are refreshed, if not strengthened. When I was the guest speaker at an awards dinner at a mental health hospital, I made my argument to my dinner partner, the hospital director. "Wouldn’t a ‘stealth campaign’ against stigma be far more effective?" I asked. Perhaps there’s a better way to banish ugly, destructive attitudes and stereotypes—replace them with new connections and associations—positive ones. The news pouring in from research labs around the world is so promising—we have an unprecedented opportunity to change the narrative. Research about the brain has already filtered from the laboratory into the public consciousness. MRI brain scans are so ubiquitous in the media, I even used them on my daytime TV show. People are getting that, at its most basic level of function, the brain is wired. And this is profound because understanding the mechanics of the brain and drawing a line between brain activity and behavior is a huge step toward demystifying the brain—and de-stigmatizing mental illness. Our brains are made up of many working parts. One part that’s key in bipolar disorder is in the center of the brain. It’s a bundle of nerve cells called the cingulate that form a kind of chemical-electrical switch that controls moods. For people with bipolar disorder, this mood switch has a hair-trigger; it’s overly sensitive. It flips too readily, from depression to mania/from mania to depression. This kind of insight and understanding of how the brain works—or what happens when it doesn’t work normally—explains the organic roots of those erratic moods and unpredictable behaviors of bipolar disorder. It’s not all demons and vapors. We should take a page from cancer activists and change the narrative. I remember when people trembled at the mention of the word "cancer." But look at us today, wearing pink ribbons and running for the cure. Fear has been banished by the new narrative: hope. So that evening, the hospital director listened patiently to my argument until he had to excuse himself to move the program along—and wouldn’t you know?—the next item on the agenda was the annual "Stigma-Buster" award. Perhaps I’d made my point. He announced that next year they’d be calling the award something different. Change is possible.
Jane Pauley is a broadcast journalist with a television career spanning more than thirty years. In her mid-twenties, she began a thirteen-year tenure as cohost of NBC’s TODAY, and for more than a decade anchored the primetime newsmagazine, Dateline NBC. Pauley’s memoir, Skywriting: A Life Out of the Blue (Random House, 2004), was a New York Times bestseller. She is married to Doonesbury cartoonist Garry Trudeau; they live in New York City. This essay is adapted from Pauley’s keynote address at the Narrative Matters conference, "Patients and Policy Narratives: The Consumer Voice in Health Care," in September 2008.
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