Strangers to Ourselves Page 2
The older girls seemed to consider me a kind of mascot, an anorexic-in-training. My ideas about food and the body were even more magical than theirs. I would eat a bagel but refuse a small bowl of Cheerios—one big O seemed preferable to three hundred or so tiny Os. When Hava and Carrie let me watch them play Go Fish, I wanted to know (but was ashamed to ask) what sort of fish they were referring to: Fish in the ocean? Or cooked on a plate? I didn’t understand that fish in the ocean became the type cooked on the plate, and, if they meant the latter kind, I didn’t want anything to do with the game.
I couldn’t keep up with Hava and Carrie, who spoke about their weight not just in pounds but in ounces, too. Although anorexia has a reputation as a reading disease, perhaps it is just as much about math. Mukai, the Japanese scholar, recalled that when she was anorexic she entered a “‘digitalized’ world, where everything was understood in terms of meters, centimeters, kilograms, calories, times, and so forth.” She wrote, “I no longer shared culture, nor social reality, nor even language with anybody. I was living in a closed reality where things did make sense to me, but only to me.”
I wasn’t sophisticated enough to do the math that the disease required, but I was drawn to the way that Hava and Carrie had adopted a new value system, a foreign mode of interpreting their physical sensations and assessing their worth. Whenever a new patient arrived on our unit, Hava noted the girl’s height and weight in her journal. “I need to wait my urges out for food and experience the high of accomplishment,” Hava wrote. “The high is so wonderful.” It seemed that she was disciplining her body for some higher purpose that she never named.
In her 1995 essay “The Ascetic Anorexic,” the anthropologist Nonja Peters, who was anorexic, proposes that the disease unfolds in distinct phases: In the beginning, the anorexic is propelled by the same cultural forces that inspire many women to diet. The process can be sparked by a trivial remark. Mukai decided to diet after she asked her mother if she would grow up to be fat like her grandmother. “Maybe, yes,” her mother replied. Mukai fixated on the comment, even though she recognized that her mother “was laughing. She was joking. I knew.” In her journal, Hava described the pivotal moment when a friend described her size as “medium.” Hava’s parents urged her not to listen to her friends, but Hava wrote, “If they think I’m fat then I’m fat.”
Eventually, an impulsive decision gathers momentum, becoming increasingly hard to reverse. “Once the ascetic path is taken, ascetic behaviour produces ascetic motivations— it is not the other way around,” Peters writes.
Several scholars have studied the parallels between anorexia nervosa and anorexia mirabilis, a condition of the Middle Ages in which young religious women starved themselves as a way of freeing their spirits from their bodies and becoming one with the suffering of Christ. Their loss of appetite, it was said, was a miracle. Their bodies became such powerful symbols of faith and purity that they struggled to begin eating again, even when their lives were at risk.
The historian Rudolph Bell has named this condition “holy anorexia,” concluding that these women had a disease. But the opposite argument also seems true: anorexia can feel like a spiritual practice, a distorted way of locating some nobler self. The French philosopher René Girard describes anorexia as being rooted in “the desire not to be a saint but to be regarded as one.” He writes, “There is great irony in the fact that the modern process of stamping out religion produces countless caricatures of it.” Once the course has been set, it is difficult to change the terms of engagement. In a diary that I kept in second grade, I wrote, “I had some thing that was a siknis its cald anexorea.” I explained that “I had anexorea because I want to be someone better than me.”
* * *
I WENT TWELVE days without seeing my parents. My mom did come to the hospital once to drop off pajamas, after I’d bled through my old ones when the IV needle fell out of my arm. I heard my mom’s voice and, though I’d been restricted to bed rest, I ran out of my room and down the hall toward her. Both of us were crying, but when I got within a few feet of her, the nurses held me back.
Three times a day, a nurse sat with me for thirty minutes while I looked at my meals without eating more than a few bites. Each tray of food contained three hundred calories. When the tray was taken away, the nurse monitored me for forty-five more minutes, to make sure I didn’t throw up. I hadn’t even realized that voluntary vomiting was physically possible.
After nearly two weeks, I finished breakfast and then lunch. I enjoyed what was served, macaroni and cheese, and found myself finishing the meal without realizing it. “I kind of look forward to the meals because sometimes I may forget myself and start to enjoy it,” Hava wrote in her journal. Perhaps I was caught by the same accidental pleasure. The nurse monitoring my meal congratulated me and told me I’d earned a privilege: I could call my parents. I remember walking to the telephone beside my bed and dialing my mother’s number. Once I heard her voice, I was so relieved that I couldn’t speak. I just laughed.
When my parents visited me, they were dismayed to discover that I had acquired a repertoire of anorexic behaviors. In addition to doing jumping jacks, I refused to sit or lie down until 9:00 p.m., my bedtime. My sister, who was eventually allowed to visit me, too, grasped the appeal of my new friends. “I had a little crush on Carrie,” she told me years later. “She was very pretty and cool, and I remember she had nice, smooth hair.” She added, “Those girls took care of you.”
My parents were angry that I had fallen under the sway of older girls versed in the illness. “Until then, it had been pure mental process—it was so internal to you,” my stepmom told me. “You weren’t reading magazines and didn’t have an image of what an ideal thin person looked like.” My mom said, “I don’t think you even understood ‘thin.’ You just, I think, didn’t want your stomach to protrude—as all children’s stomachs do.”
My father was the only one who rejected my diagnosis. “From a very young age you used to say, ‘You’re not the boss of me,’” he said. “That was the behavior that you brought to the table.” In an “Eating Attitudes List” that my dad was told to complete, one question asked whether “my teenager thinks about burning up calories when she exercises.” My dad crossed out the word “teenager” and wrote in the margins, “Did not know it then, now she does.”
* * *
ONCE MY PARENTS began visiting me, it was as if the spell had been broken. My goals realigned. To continue seeing them, I began eating everything on my trays. My mom and dad were allowed to visit separately every day, for a half hour each, as long as I ate my meals.
The windowsill in my room filled up with figurines from Pee-wee’s Playhouse, a show that my sister and I had watched every weekend. My dad brought a new character almost every time he visited: Chairry, the armchair; Reba the Mail Lady; Miss Yvonne, whom Pee-wee called the “most beautiful woman in Puppetland.” I now understood, thanks to Carrie and Hava, that television was for couch potatoes, and I no longer permitted myself this indulgence. But during my dad’s visits, I allowed myself to watch as he sat on my hospital bed, held a figurine in each hand, spoke in a high-pitched nasal voice, and acted out the show.
I had to reach fifty pounds to be released from the hospital—nine pounds more than I’d weighed when I was admitted. At night I went to the nurse’s station and requested small boxes of frosted shredded wheat. When I picked my nose, I put the boogers back in, so I wouldn’t lose extra weight. “Rachel began eating 900 calories on the twelfth day of hospitalization, and gradually increased her consumption to the point that she had little problem consuming in excess of 1,800 calories per day,” Koepke wrote.
My sister said that the last time she visited me at the hospital “they had fattened you up to the point that it looked like your sweatshirt was tucked in—it was just your body, but somehow it looked like extra material.” Carrie had also gained enough weight that she was preparing to go home. Hava’s recovery was more halting. “I feel so crazy
and weird after I eat—but nobody would understand if I can’t even explain it myself,” she wrote. “I wish someone could help me and just change my mind about everything.”
I was discharged from the hospital on November 9, 1988, six weeks after I arrived. Koepke seemed pessimistic about my prospects for recovery. “Given the intense hostility”—between my parents—“and severity of the disease, we are extremely guarded regarding the prognosis,” he wrote. He and his team suggested that a psychiatric hospital would be the “appropriate placement for Rachel.” But he wrote that my parents decided to hold off on “this recommendation for the time being.” My mom was shocked by the suggestion. “I feared once you’d gone into that system of psychiatric institutions, it may have been very difficult to pull you out,” she told me.
I returned to school the day after I was discharged. I asked my mom if I could tell my classmates that I had been hospitalized for pneumonia, but she wouldn’t let me lie. On my first day back, my mom came to the classroom with me and, as the other children sat in a circle on the rug, we explained that I’d been in a hospital. “It wasn’t a long discussion,” my mom said. “No one insinuated that you were different or sick in a mental way. I think the children probably understood it as sick in a physical way. And, indeed, you were in need of nourishment.”
Afraid of being a couch potato, I refused to sit at my desk or on the rug where we had circle time. Ms. Calfin allowed me to stand. “The way you would stand is with one of your arms at your side and the other holding your elbow,” Elizabeth, who is now a marriage counselor, told me. Sometimes students asked me to step to the side when I was blocking their view of the chalkboard, and I remember thinking that I wasn’t actually in their line of sight—that they just wanted to call attention to my unusual behavior. But I was never mocked, as far as I can recall, and after a month I began sitting down like all the other children. “You kind of blended right back into the mix,” Ms. Calfin said, adding, “I just wanted you to feel that you were part of this community again.” That spring, a psychologist wrote that my symptoms had lifted. Anorexia, he concluded, was a “coping style in dealing with the pressures that she has felt.”
Elizabeth and I began playing mancala again. Soon we called each other best friends. She often invited me to sleep over at her house and we started a New Kids on the Block club in her walk-in closet. Somehow in my memory Hava merges into Elizabeth: they both wore silky nightgowns, were thin and fragile, and were described by my mother as “ethereal.” “I want to be Elizabith,” I wrote in my journal. “I want to have a biger house. I want evry body to like me.”
When I was in fifth grade, my mom told me that she saw a girl who looked like Carrie, wearing camouflage pants, sifting through a garbage can in downtown Birmingham, where we lived. I can’t track down Carrie’s last name—our doctors don’t remember it either—so I’ve never been able to confirm if the person was her. I didn’t learn anything about Hava for several more years, until she was featured in an article in The Detroit News about identifying early signs of mental illness in adolescence. A photograph showed her standing in front of a lake, her hair down to her waist. She was still beautiful, but she looked slightly ravaged. The article said that she had spent her adolescence and early adulthood in and out of psychiatric hospitals. She’d had to drop out of high school. She considered her eating disorder the defining fact of her life.
* * *
A few years ago, I went to Sweden to report a story about a condition known as “resignation syndrome.” Hundreds of children from former Soviet and Yugoslav states who had been denied asylum in Sweden had taken to their beds. They refused food. They stopped talking. Eventually, they seemed to lose the ability to move. Many had to be given feeding tubes. Some gradually slipped into states resembling comas. One child told me that during his months in bed he’d felt as if he were in a glass box with fragile walls, deep in the ocean. If he spoke or moved, it would create a vibration, which would cause the glass to shatter. “The water would pour in and kill me,” he said.
Psychiatrists proposed that the condition was a reaction to both the stress of the migration proceedings and the trauma in the countries the children’s families had fled. But they couldn’t understand why the illness occurred only in Sweden—not in any neighboring Nordic countries, where refugees from the same countries had resettled. As I interviewed families, I discovered that many of the children diagnosed with resignation syndrome had known someone who suffered from the disorder, too. There were allegations in the Swedish press that the children were malingering, especially after Sweden established resignation syndrome as grounds for granting residency. But when I met the children, I felt sure that they were not pretending. They took weeks, sometimes months, to emerge from a nearly catatonic state, even after their families were told they could stay in Sweden. What began as a protest seemed to take on its own momentum. The children had become martyr figures, a role that at first seemed freeing, but it began to destroy them.
My conversations with families and doctors in Sweden made me reconsider my early experience with anorexia. Something about the mute, fasting children in Sweden felt familiar to me. For a child, solipsistic by nature, there are limits to the ways that despair can be communicated. Culture shapes the scripts that expressions of distress will follow. In both anorexia and resignation syndrome, children embody anger and a sense of powerlessness by refusing food, one of the few methods of protest available to them. Experts tell these children that they are behaving in a recognizable way that has a label. The children then make adjustments, conscious and unconscious, to the way they’ve been classified. Over time, a willed pattern of behavior becomes increasingly involuntary and ingrained.
The philosopher Ian Hacking uses the term “looping effect” to describe the way that people get caught in self-fulfilling stories about illness. A new diagnosis can change “the space of possibilities for personhood,” he writes. “We make ourselves in our own scientific image of the kinds of people it is possible to be.” In an essay about the children diagnosed with resignation syndrome in Sweden, Hacking refers to Pascal’s wager: to avoid the possibility of eternal Hell, we should behave as if God is real even though we lack proof of his existence. Over time, we may internalize the faith we’d been simulating; our belief will become sincere. Hacking proposes that for some illnesses a similar process is at work. We find a way to express our distress through imitation, until, eventually, we “have ‘learned’ or—better—‘acquired’ a new psychic state.”
* * *
AT SIX YEARS OLD, it still seemed possible that I could become someone else through sheer will. Had I stayed in the hospital longer or returned to a less welcoming school, I may have followed Hava’s path. “Labels aren’t so bad,” she wrote in her journal. “They at least give you a title to live up to … and an identity!!!!”
My stepmom, the most practical person in my family, has told me she was once doubtful that I’d make it to adulthood. I do have certain traits that make me susceptible to fasting for no reason, like an amorphous sense that self-restraint is a moral good. But I also wonder if I ever had anorexia in the first place. Maybe my limited exposure to the ideal of thinness prevented me from wanting it badly enough. To use the terms of the historian Joan Jacobs Brumberg, who has written eloquently about the genesis of eating disorders, I was “recruited” for anorexia, but the illness never became a “career.” It didn’t provide the language with which I came to understand myself.
This sense of narrow escape has made me attentive to the windows in the early phases of an illness, when a condition is consuming and disabling but has not yet remade a person’s identity and social world. Mental illnesses are often seen as chronic and intractable forces that take over our lives, but I wonder how much the stories we tell about them, especially in the beginning, can shape their course. People can feel freed by these stories, but they can also get stuck in them.
Psychiatrists use the term “insight”—a pivotal, almost ma
gical word in the field—to evaluate the truth of people’s stories about what is happening to their minds. In a seminal 1934 paper in The British Journal of Medical Psychology, the psychiatrist Aubrey Lewis defined insight as the “correct attitude to a morbid change in oneself.” A patient with the “correct attitude” recognizes, for instance, that spirits of dead people are not suddenly talking to her; rather, the voices are symptoms that medication can silence. Insight is assessed every time psychiatric patients are hospitalized, and it looms large in decisions about whether to treat them against their will. But the concept largely ignores how the “correct attitude” depends on culture, race, ethnicity, and faith. Studies show that people of color are rated as “lacking in insight” more often than those who are white, perhaps because doctors find their mode of expressing distress unfamiliar, or because these patients have less reason to trust what their doctors say. In the starkest terms, insight measures the degree to which a patient agrees with his or her doctor’s interpretation.
Fifty years ago, at the height of the psychoanalytic era, insight described a kind of epiphany: unconscious desires and conflicts became conscious. A patient was said to have insight if she could recognize, say, her repressed hatred for her father and the way that this forbidden emotion had formed her personality. Eventually, though, it became apparent that gaining insight into interpersonal conflicts, though intellectually rewarding, did not provide a cure.
Biomedical explanations of illness, which began to dominate in the eighties and nineties, did away with the need for this sort of insight. The “correct attitude” came to rest on a new body of knowledge: patients were insightful if they understood that their disorders arose from diseases of the brain. The biomedical approach solved a moral problem—that patients and their families were being blamed—and it has been celebrated for its potential to reduce stigma. The surgeon general’s first-ever report on mental health, in 1999, proposed that stigma arises from “the misguided split between mind and body first proposed by Descartes.” At a press conference, the surgeon general announced that there is “no scientific justification for distinguishing between mental illness and other forms of illness.”