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Sunday 9 February 2014

The Problem With How We Treat Bipolar Disorder - Courtesy of the New York Times

The Problem With How We Treat Bipolar Disorder

Photo illustration by Daniel Gordon


The last time I saw my old self, I was 27 years old and living in Boston. I was doing well in graduate school, had a tight circle of friends and was a prolific creative writer. Married to my high-school sweetheart, I had just had my first child. Back then, my best times were twirling my baby girl under the gloaming sky on a Florida beach and flopping on the bed with my husband — feet propped against the wall — and talking. The future seemed wide open.

I don’t think there is a particular point at which I can say I became depressed. My illness was insidious, gradual and inexorable. I had a preview of depression in high school, when I spent a couple of years wearing all black, rimming my eyes in kohl and sliding against the walls in the hallways, hoping that no one would notice me. But back then I didn’t think it was a very serious problem.

The hormonal chaos of having three children in five years, the pressure of working on a Ph.D. dissertation and a genetic predisposition for a mood disorder took me to a place of darkness I hadn’t experienced before. Of course, I didn’t recognize that right away. Denial is a gauze; willful denial, an opiate. Everyone seemed in league with my delusion. I was just overwhelmed, my family would say. I should get more help with the kids, put off my Ph.D.

When I told other young mothers about my bone-wearying fatigue, they rolled their eyes knowingly and mumbled, “Right.” But what they didn’t realize was that I could scarcely push the stroller to the park, barely summon the breath to ask the store clerk, “Where are the Pampers?” I went from doctor to doctor, looking for the cause. Lab tests for anemia, low blood sugar and hypothyroidism were all negative.

Any joy I derived from my children was now conjoined with grief. I couldn’t breathe the perfume of their freshly shampooed hair without being seized by the realization that they would not always be under my roof. While stroking their backs, I would mentally fast-forward their lives — noses elongating, tongues sharpening — until I came to their leave-taking, until I reached my death and, ultimately, theirs.

I lost my sense of competence. If a colleague remarked on my intelligence, I mentally derided him as being too stupid to know how dumb I was. If someone asked what I did for a living, I would say, “Nothing” — a remarkably effective conversation stopper. I couldn’t bear the thought of socializing; one night I jumped out of the car as my husband and I were driving to a party.

Despite having these feelings in my mid-30s, when my kids were 8, 5 and 3, I was thriving professionally: I had recently completed my Ph.D. in geography, had just finished co-teaching a semester at M.I.T. as a lecturer and was revising my dissertation on spec for a respected university press. Yet several nights a week, I drove to the reservoir near my home, sat under a tree and, as joggers and their dogs ran past, thought about ending it all. There was a gun shop on the way to my poetry group; I knew exactly where to go when the time came.

My day, once broken by naps, gradually turned into lengthy stretches of sleep, punctuated by moments of wakefulness. My husband and I didn’t explain to the kids that I was depressed. “Mommy’s a little tired today,” we would say. A year or so earlier, a therapist told us to tell the children. “But they’re just kids,” we said. “What do they know?” “They know,” she said. When we eventually spoke to them, my oldest daughter came to me and asked: “Why did you keep it a secret? I thought all mothers were like you.”

After a few weeks of stopping at the reservoir, as suicide eclipsed all other thoughts, I finally told my husband about my worsening psychic pain. The next day I was hospitalized. It was June 1989. Even though we were living in Boston, we decided I should go to Chicago to work with the psychopharmacologist who, 15 years earlier, restored the health of my father, who had also been hospitalized for depression. As the cab pulled away from our house, I turned and saw three children’s hands pressed against the screen of an upstairs window. This is the way the world breaks.

The moment the psych-unit doors locked behind me, I was stripped of my identity as wife, mother, teacher and writer and transformed into patient, room number and diagnosis. I couldn’t open a refrigerator without permission. If I were on suicide watch, I had to ask before going to the bathroom. I was told when to sleep and when to wake, when to eat and when to go to group. My routine, which at home had cleaved so closely to my children’s, now revolved around the clattering sounds of the food trays being brought three times each day from the service elevators into our unit. With my husband and children nearly 1,000 miles away, I was severed from my fixed stars. I missed my children’s smells, the way they used to wrap their bodies around my legs when I was on the phone. I brought my son’s comforter to the hospital for my bed. I remembered him with one leg thrown across the covers, a small foot peeking out from his pajamas.

When my children visited, I had to resuscitate my maternal self, if only for an hour. I dragged myself to the shower, pulled on a pair of clean sweat pants and a fresh T-shirt and ran a streak of lipstick across my lips, hoping to look like a reasonable facsimile of a mother.

My doctor used my first hospitalization as a so-called washout, a period during which he planned to take me off the medication I was on and introduce several drugs in several different combinations. The prospect of polypharmacy — taking many drugs at once — seemed foreboding. I read about Prozac’s giving some people entirely new personalities: happier, lighter, even buoyant. “Who are you going to turn me into?” I asked my doctor.

“I’m not turning you into anyone,” he said. “You’ll be yourself, only happier.”

“I don’t think I even have a self anymore.”

“We’ll find your self.”

I was wary. “Just don’t turn me into Sandy Duncan.”

How much insult to the self is done by the symptoms of the disorder and how much by the drugs used to treat it? Paradoxically, psychotropic drugs can induce anxiety, nervousness, impaired judgment, mania, hypomania, hallucinations, feelings of depersonalization, psychosis and suicidal thoughts, while being used to treat the same symptoms. Before getting to the hospital, my daily moods ranged from bad to worse, each state accompanied by a profound depth of feeling. The first drug I was given was amitriptyline (Elavil), which, in the process of reducing my despair, blunted all my other emotions. I no longer felt anything. It was like going from satellite TV to one lousy channel.

While some medications affected my mood, others — especially mood stabilizers — turned my formerly agile mind into mush, leaving me so stupefied that if my brain could have drooled, it would have. Word retrieval was difficult and slow. It was as if the door to whatever part of the brain that housed creativity had locked. Clarity of thought, memory and concentration had all left me. I was slowly fading away.

I would try to talk to my doctors about my vanishing self, but they didn’t have much to say on the subject. Instead they focused on whether I could make eye contact or how much expression I showed in my face. They monitored my lithium and cortisol levels; they took an M.R.I. of my head. I received an EKG, was exposed to full-spectrum lighting and kept awake all night for sleep-deprivation therapy. Nurses jotted down their observations; my scribbled lines in art therapy were inspected. Everything was scrutinized — except the transformation of my self and my experience of its loss.

My current psychiatrist, William Scheftner at Rush University Medical Center, says this is typical when treating patients with acute mental disorders. The primary goal at the height of a mental-health crisis is symptom reduction. That means monitoring patients’ sleep patterns, appetites and responses to medications — not worrying about philosophical questions like who they are and who they will become. “The issue of self just isn’t there,” he told me, “because you’re so preoccupied with whether someone is actually improving or not.”

By August 1989, I was back in Boston with my husband and kids, having been discharged from the hospital almost three months after I was admitted. My children, like many people, mistook “discharge” for “recovery.” “Why did they let you out if you’re not better?” my daughter asked. I didn’t know how to explain the welter of factors that go into discharge: poses no threat to self or others; is functioning at a high-enough level to participate — however minimally — in the tasks of daily living. Recovery was not an end, I told her, but a process.

The trees were starting to change colors. Acorns dropped and exploded like tiny bombs. My car was in the driveway; my clothes were in my closet. But things felt ill fitting and unfamiliar. “Whose kids are these?” I wondered. “And when is their mother coming to pick them up?” Nowhere was my otherness more keenly experienced than at the driveway at the grammar school. Everyone knew that I had been “away,” and why. I tried to imitate the other mothers, their relaxed camaraderie, their confidence, the way they threw their heads back when they laughed.

Around Halloween, as our neighbors made wild-eyed pumpkins with crooked teeth, my children noticed that there were frightening things in our house, too. I had my first hypomanic episode. This was how my doctors confirmed that my depression wasn’t just depression — I had bipolar II disorder, like my father. With bipolar II, unlike bipolar I, the upward swing from depression stops at hypomania, not mania. Mania is having five grand pianos delivered to your house; trying to buy the Sears company; sleeping with the local baseball team. Hypomania is mania with a tether, and, while it might avert some of the financial and interpersonal disasters that unchecked mania may engender, it can still feel like a runaway train.

By that point my vestigial self had grown used to my depressed self, with her somber mood and tenuous hold on life. Now a newcomer arrived. I seemed to have split into three: my shellshocked self, my depressed self and a brazen hypomanic self. We could practically hear the new girl sizing us up, cackling. Under her reign, we slept two hours a night. We ate half a sandwich and two potato chips a day. We packed the children’s lunchboxes at 3 a.m. We began to study for the MCATs (the fact that we had never taken a biology or chem class seemed irrelevant). We telephoned long-lost friends. The hypomanic self’s activities, from relentless lunch dates and impulsive spending sprees, left my tattered and depressed selves saying, “That’s not us” and “We don’t do that.”

I no longer went to bed with my husband. Instead I stayed awake, scribbling in my notebooks. My wakefulness worried my son. “I had a bad dream,” he said. “You were downstairs working in the middle of the night. And while everyone else in the house was sleeping, the whole house fell down on you.”

“Oh,” I said, pulling him close. “That is a bad dream. Did anybody get hurt?”

“No, but the cats almost died.”

Every few weeks, I needed to buy smaller clothes. “What’s happening to you, Mommy?” my daughter asked. “You’re shrinking.”

Hypomania was consuming me. My doctor, in an effort to quash the hypomania, upped my lithium dose and catapulted me back into depression, back to Chicago, back to a locked psych unit, after New Year’s Day in 1990. A few weeks later, my kids came to visit. I met them in the lobby. The chair I was sitting in felt insubstantial; the walls seemed to bend. My son was excited. “I made a scientific discovery!” he said. “There can’t be a shadow in the darkness.” He understood depression better than my doctors, I thought. “Mommy?” he said a few moments later. He sounded miles away. I leaned back and fell asleep. I didn’t see them again for four months.

My medical records show that by the spring, I thought I was in a Canadian train station and that it was 1976. I lugged a suitcase stuffed with towels around the unit, looking for the departure platform. If my self had been assailed by depression, then psychosis was the final blow. My sense of boundedness — where I stopped and other people or the environment began — was sloppy, like a toddler scribbling outside the lines. I didn’t envision myself as human; I pictured myself as black vermicelli on an asphalt driveway. For a brief time, I could neither write nor speak. My journals show a perseverating pencil — a long string of Ts or entries in hypergraphic writing, alternating between conventional and unconventional language: “They will have a stronstrazzly negative reaction to them. I need held . . . In stortingitoat — plus, the idea of [X] a new set of residential pleomorph — exoskeleton weitropstite jejoined to be betters. blep.”

I hallucinated. The world was suddenly up for grabs; reality, an option. Rectangular rainbows streamed through the day-room windows. Nonexistent organ music pealed through the neighborhood on a Sunday morning. Peasants from a Jean-François Millet poster walked out of the frame and marched across the wall.

Some researchers say that in psychosis, the self persists, however tenuously. Sue Estroff, a professor of social medicine at the University of North Carolina, described it as “more of a foreground, background thing. During psychosis, the self recedes.” But, she told me, “you’re still in there.” I don’t think so. If I had been allowed outside, I would have doubted the reality of my shadow.

By early summer, the psychosis had run its course, and I returned to lucidity. The kids came to visit. They dragged me off the sofa and onto the carpet. We were laughing and crying simultaneously. I felt the surge of something primal.

Later that summer, after I became well enough to be discharged once again, we decided to move to the Chicago area so that I could continue working with my father’s doctor, whom I trusted, and be near our families. But seven months after moving into our new house, I was back in the hospital. I would be readmitted and discharged two more times over the next half-year. When I left the hospital for the last time in August 1991, I was 38, and while no longer intent on self-destruction, I was more accurately rescued, not restored.

Taking care of children and running a household seemed like a herculean task. My husband and I realized we needed a full-time housekeeper. We found a wonderful woman who knew just what needed to be done: cook, clean and be a surrogate mother. While appreciative of her help, I felt as if my role had been usurped.

I continued to see my doctor every week as an outpatient. But I was demoralized and failed to see much of a change. I asked him how he healed my father, maintaining him on only three lithium tablets a day, whereas I had experimented with about 100 different combinations and dosages of medications (including antidepressants like monoamine oxidase inhibitors, tricyclics and, later, S.S.R.I.’s). “Because,” he said, “your dad was a Ford. You are a Ferrari.” I didn’t know if this was a compliment or an insult.

The first few years after my last hospitalization, I spent a lot of time on the shore of Lake Michigan, near my home. I collected hundreds of beach stones and organized them by size, color, shape and heft. Soon I had dozens of shoe boxes full of them. Sometimes I talked to the Russian fishermen looking for smelt on the pier; other times I walked alongside older women and helped them look for sea glass. I took three-hour naps every afternoon, trying to remember to set the alarm clock, so I would be awake when the kids came home from school. Many times they met a closed bedroom door.

By 1995, I started to feel small changes. The medications were the same. I was still seeing my father’s doctor. I had the same support from my family and from my husband, who once, when I came home on a day pass, had pansies — my favorite flowers — planted along the path from the driveway to the house. The protective cocoon he made for me, along with time, allowed my self to regrow. I could feel my self filling in.

Gradually, I was able to fulfill more of my maternal role: helping with homework, driving to piano lessons, making the worst Rice Krispies Treats in the school. Our housekeeper, while still a tremendous support, was becoming more of a safety net than a primary caregiver. One of my favorite things was driving in the car with the kids, singing along to oldies, trying to answer their questions: “Is the sun going to fall on the earth?” “Where is the first car?” “Why are some books called a ‘turn-pager’?” I had lunch with family members and the occasional friend. With confidence easing its way back to my self, I volunteered at an anorexia foundation near my house. I lined the edges of my desk with stones. Writing was getting easier, words were unlocking. One day I was on the porch with the two younger kids, who were doodling with crayons, when I wrote down the word “pain.” Without thinking, I picked up a crayon and added the letter T to the end of the word. A half-hour later, we were at an art-supply store, buying brushes, tubes of paint and a canvas. We converted the unused third floor of our house into a cavernous studio. Passion had returned and, along with it, creativity.

One day, about eight years ago, it struck me that bipolar disorder was the hand I was dealt. I remembered what my father said to me when I moved from Boston: “Don’t look at what your disorder has taken away from you, try to find what it has given you.” I began speaking to family-education classes of the local chapter of a mental-health organization. I presented a paper at a conference. The more often I spoke, the less traumatic my experience seemed, the less sad, the less painful and, somehow, the less personal.

Over the years, I’ve talked to clinicians about why the self is rarely mentioned in treating patients who suffer from mental illnesses that damage their sense of who they are. If anything, it seems that psychiatry is moving away from a model in which the self could be discussed. For many psychiatrists, mental disorders are medical problems to be treated with medications, and a patient’s crisis of self is not very likely to come up in a 15-minute session with a psychopharmacologist.

Philip Yanos, an associate professor of psychology at John Jay College of Criminal Justice, in New York, studies the ways that a sense of self is affected by mental illness. He told me that when his work was under grant review, it was initially met with skepticism. Some thought that what he calls “illness identity,” which manifests in some patients as overidentifying with their mental disorder, was a topic of lesser importance in the face of other serious symptoms that patients experience, like cognitive impairment and thoughts of suicide.

Yanos told me that reshaping your identity from “patient” to “person” takes time. For me, going from patient to person wasn’t so arduous. Once I understood I was not vermicelli, part of my personhood was restored. But reconstructing my self took longer.

One reason that may have been the case, as Amy Barnhorst, a psychiatrist at the University of California, Davis, told me, is the unique set of challenges facing people who have experienced mania and hypomania. “The parts of the selves that may come out” in mania and hypomania, which can be horrifying, “are very real,” she said, making it difficult for patients “to reconcile those behaviors with their self as they have come to know it.” In mania and hypomania, the sick self has no accountability; the improved self has a lot of explaining, and often apologizing, to do.

For many people with mental disorders, the transformation of the self is one of the most disturbing things about being ill. And their despair is heightened when doctors don’t engage with the issue, don’t ask about what parts of the self have vanished and don’t help figure out strategies to deal with that loss.

Some in the mental-health field are beginning to recognize this need. Janina Fisher, a psychologist and the assistant director of the Sensorimotor Psychotherapy Institute in Broomfield, Colo., told me that there has been a “sea change” in the role the self plays in the therapeutic dialogue since the decades when I was sick. New therapies and treatment philosophies, founded mostly by clinical psychologists and other practitioners who are not medical doctors, recognize the role of the self in people with mental illness. Patients tell her, “I just want to be that person I used to be.” Fisher encourages her patients to recognize that their mental trauma is a part of their life, but shouldn’t dominate it.

In my own experience with Scheftner, whom I began seeing after my father’s doctor moved away, we talk about the self but only when I bring it up. That’s why I have enjoyed helping to run a support group for people with mental disorders, something I’ve been doing for the last three years. There are usually 8 of us, sometimes 12. We sit in the basement of a local library every Wednesday afternoon. Though we know one another’s innermost thoughts, we are intimate strangers, not friends. Like A.A. and other self-help groups, we’re peer-led: run by and for people with mental disorders. We talk one by one about the past week — small achievements, setbacks, doctor appointments, family conflicts. While the self is not always an explicit topic, the loss of self — or for those doing better, the reconstruction of the self — is a hovering presence in the group.

One day, not long ago, a middle-aged man came to our group. He told us that he spent the past year attending different grief groups, but none of them were right. “Why not?” someone asked. The man said: “Because everyone there was grieving over the loss of another person. I was grieving for myself. For who I used to be before I got sick and who I am now.”

During the 20-odd years since my hospitalizations, many parts of my old self have been straggling home. But not everything made the return trip. While I no longer jump from moving cars on the way to parties, I still find social events uncomfortable. And, although I don’t have to battle to stay awake during the day, I still don’t have full days — I’m only functional mornings to midafternoons. I haven’t been able to return to teaching. How many employers would welcome a request for a cot, a soft pillow and half the day off?

One morning, about five years ago, my husband and I were talking on the family-room sofa. I was still wearing my pajamas and had wool hiking socks on. As he rubbed my feet, he told me he was leaving. It was, at once, a scene of tenderness and savagery. A little later, he threw some clothes into a suitcase and moved out. But my self — devastated, grieving, angry — remained intact.

Today, my mind is nimble. Creative writing has crept back into my life. I’ve made a couple of close friends in Chicago. My greatest pleasure is still my children — they’re starting careers, marrying, on the brinks of their lives. I’m looking forward to grandchildren, to singing the 1950s favorite “Life Is but a Dream” while spinning those babies under the stars of a falling night on a Florida beach. This June, I’m turning 60. I’m having a small party to celebrate my ingathering of selves. My old self was first to R.S.V.P.

Linda Logan lives near Chicago. This is her first article for the magazine.

Editor: Maya Lau

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