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.