Another study compared brain activity in women who were recovering from anorexia with brain activity in healthy women. The participants played a computer game where they won money for guessing correct answers. In healthy women, areas of the brain tied to emotional responses lit up differently when they won money than when they lost. In women with a history of anorexia, there were fewer differences; winning and losing felt very much the same. Kaye suspects this neurological effect applies to eating, too. “For anorexics, perhaps it is difficult to appreciate immediate pleasure if it does not feel much different from a negative experience,” he told a BBC interviewer. By contrast, the part of the brain that links actions to outcomes and planning lit up far more in the recovering anorexics than in the healthy women, reflecting high levels of anxiety about making mistakes and worries about negative consequences.
“There are positive aspects to this kind of temperament,” Kaye points out. “Paying attention to detail and making sure things are done as correctly as possible are constructive traits in careers like medicine or engineering.” Taken too far, though, such traits can hurt more than they can help.
The language of neurobiology describes the nexus between brain chemistry and behavior. It’s observational and nonjudgmental, a far cry from the pronouncements of Minuchin, Bruch, and so many others. What it boils down to, in Kaye’s words, is that “circuit-based abnormalities” lead to changes “related to appetite, emotionality, and cognitive control.” Cause and effect (though it’s hardly that simple), seen as a series of system malfunctions, glitches in the hardware that affect the software. There’s no blame or shame attached, just descriptions of where the system gets wonky or goes astray.
On the other end of the spectrum from Walt Kaye, some researchers are investigating parallels between anorexia and autism. Nancy Zucker, a psychologist at Duke University Medical Center in Chapel Hill, North Carolina, believes that both people with anorexia and people with autism show impairments in what scientists call social cognition—attachment, anxieties, and interpersonal relationships. She published a paper in 2007 suggesting that looking at the social deficits of people with anorexia might help researchers devise better treatments for the illness. But since so many of the “social impairments” seen in anorexia are a function of long-term malnutrition (think of the volunteers in Ancel Keys’s study, who became depressed, anxious, withdrawn, and aggressive), I’m not sure how useful this line of research can be. And I don’t see how comparing anorexia to autism helps people with either disease. The last thing people with anorexia need is another stigmatizing label slapped on them.
One of the most intriguing theories about what causes anorexia comes from Shan Guisinger, a psychologist in Missoula, Montana. Guisinger wondered why anorexia nervosa developed in the first place, what biological function it fulfilled, and why it’s persisted, given its high mortality rate. She came up with what she calls the adapted-to-flee-famine hypothesis, which explains the illness in terms of evolutionary biology.
According to Guisinger, the symptoms of anorexia—the inability to see one’s own extreme thinness, the hyperactivity and restlessness, the aversion to eating, the ability to function on very little food—make sense if you think of them as strategies for surviving famine. Thousands of years ago, she suggests, before humans started farming, they were nomadic, often traveling great distances to find food. In times of famine, malnourishment made people lethargic, weak, and depressed—unable to forage successfully. Guisinger theorizes that the whole group benefited from having a few members who reacted paradoxically to starvation. These evolutionary outliers stayed energetic, becoming restless rather than lethargic during times of scarcity. They didn’t see themselves as dangerously thin and, therefore, stayed optimistic and motivated to survive. All of these qualities made them natural leaders in times of food shortage, leading the drive to find greener pastures. In this context, says Guisinger, the characteristic abilities of anorexics to work hard, delay gratification, and ignore suffering to achieve a goal would have been essential to the group.
To support her theory, Guisinger points to a number of factors: The fact that anorexia nervosa appears across cultural, ethnic, and socioeconomic lines, which suggests that it is biological rather than cultural. The fact that anorexia seems most common in peoples who were more recently nomadic—Hispanics, Caucasians, and Native Americans—and least common among Asians and African Americans; in Africa over the last hundred thousand years, Guisinger argues, “it was probably better for starving people to stay put, conserve energy, and keep searching locally for food, as traveling could result in encounters with hostile neighbors.” Finally, the fact that anorexia affects primarily women. In other primate species, says Guisinger, males who wander from their own territory are typically killed, but females are often accepted and integrated into a new group. So females make the best migrators, in a way.
If the adapted-to-flee-famine theory is true, says Guisinger, maybe one reason anorexia recovery rates are so low in our culture is that the illness was designed to be “switched off,” so to speak, in a social context that no longer exists. “In the radically individualistic western culture, it may be hard to imagine the social pressure that is brought to bear on deviant individuals in tribal cultures,” she writes. Once the tribe settled into a new area where food was more abundant, ritual prayers, thanksgiving celebrations, and food sharing might have pushed anorexics to begin eating again. She points to the fact that recovered anorexics in our culture often say that support from friends and family helped them beat the illness.
By contrast, many therapists and eating-disorders specialists still believe that psychodynamics cause eating disorders. Much of the literature emphasizes the way starvation unsexes a teenage girl, shrinks the budding breasts, damps down new sexual feelings. Therapists like Hilde Bruch wrote about girls (and boys) with anorexia who are afraid of the complexities of adult sexual relationships and so choose to starve themselves back into childhood to avoid them.
To me this feels awfully contrived. Primitive people observed lightning and thunder and came up with a story to explain them: the gods were angry. They looked for intention and meaning in the world around them because that’s what humans do; our brains seek to make order out of chaos, narrative out of random occurrences. Theories like Bruch’s are equally unscientific; they conflate correlation—things that happen at the same time—with causation. It’s true that eating disorders often start at adolescence, but we could come up with a dozen theories that “explain” that correlation—say, eating disorders are physiologically triggered by hormones. It’s just as likely as the ambivalent-about-growing-up theory, to my mind.
Guisinger’s theory seeks meaning in the illness too, but her conclusions seem more genuinely aligned with reality—though it’s a reality that no longer literally applies.
At the end of the day, of course, no one knows what causes anorexia, and no one is likely to know for a long time, if ever, which is yet another reason why family-based treatment appeals to me: in the clamor of competing theories and hypotheses, the Maudsley approach says simply, “We don’t need to know in order to treat the illness.” FBT emphasizes recovery over etiology, results over theories. Human lives over intellectual jousting.
As a journalist, I want to know what’s behind this deadly disease, what makes young women and men starve themselves, what are the causes and risk factors. I follow the research, collecting scientific articles the way some people collect baseball cards. I go to conferences, look up medical terminology, try to teach myself the essentials of anatomy so I can understand what the insula does, why tryptophan is important, how ketosis works. I read and reread descriptions of metabolism and appetite, hunger and satiety. My curiosity is piqued by the mystery that is anorexia.
As a mother, I care about only one thing: my daughter. The dead look in her eyes makes me feel dead inside. What drives me is the terror that she will never come back. That her life will be a wasteland without landmarks or topogr
aphy. That Kitty’s face, more known to me than my own, will harden and set into the mask of Not-Kitty, and that when I look into her eyes years from now I’ll see the demon looking back.
Or worse: I’ll see nothing, because she’ll be gone.
One night I sit at the computer and explore a Web site called somethingfishy, which is dedicated to people with eating disorders. I read some of the threads in the chat room for families and feel ill at the despair and hopelessness expressed there. But the most disturbing part of the site is a page of memorials to people who have died from eating disorders. I scroll through screen after screen of candles, each marked with a name, a date, a fragment of a story:
Christy Henrich, died July 26, 1994, from anorexia. Number 2 gymnast in the USA in 1989.
Jane, died December 26, 1995, from anorexia and bulimia; she is survived by her husband, Andy, and their 14-month-old son.
This is in prayer to light a candle for Baby Angella Hope, born September 17, died December 2, 1996. She is the result of a practicing bulimic.
Heidi Guenther, age 22. Died of a sudden fatal heart attack on June 30, 1997, in California on her way to Disneyland.
Deborah Simone Fradin. Debbie died from anorexia nervosa after battling this disease with every fiber in her being for 18 years. The disease ravaged her body, but not her gentle soul.
Candle after candle. Name after name. Story after story. She struggled with this disease for a year, for five years, for twenty-five years. Bright shining girls who should be giggling with friends in the halls of high schools and colleges, studying Latin and microbiology and dance. Girls who should have been walking through fields of light and dark, who instead fell into shadow. They died of heart attacks in bathrooms, in beds, in hospital rooms. They died at home, at school, alone. They died with their parents crying over them, their friends confused. They died before they had a chance to live, because once the demon moves in they’re not really living. I know. Believe me, I know.
Tears stream down my face, tears I haven’t been able to shed for my own bright shining daughter because I haven’t been able to face the fact that she might have died this summer. She still might die. I hope she’s on the road to recovery, that she’ll have to walk this particular stretch only once. But the numbers are against her. The statistics say she’ll come back this way again and again, her body getting weaker and more adapted to starvation until it comes to feel natural and right to her, until her very cells learn the pattern and shape and feeling of constant gnawing hunger. Until that skull face in the mirror looks like her face. Until it is her face. Until it has obliterated her real face not only in her own eyes but in ours.
And that’s when my fury rises. Between our reality—where Kitty’s life hangs in the balance—and the theories about why she is sick and how to help her lies an enormous chasm. I have no idea how to get across it. I don’t even know if it’s possible. And all the research is no help. It exists only on paper, tidy and two-dimensional, disconnected from the messy, dangerous, three-dimensional world we’re trapped in.
Every paper I read, every doctor I talk to, seems to have a different explanation for and approach to anorexia. No wonder the field has such a lousy track record. A higher percentage of people with anorexia die than people with schizophrenia or bipolar disorder or depression or any other mental illness. Of those who survive, only half truly recover.
You’d think numbers like these would inspire a little more soul-searching among the professionals. You’d be wrong.
A heart surgeon who used outmoded techniques would be barred from the operating room. Yet eating-disorders therapists cleave to theories from sixty years ago as if they represented the most up-to-date thinking, and they defend their beliefs with the self-righteous vigor of zealots. Maybe this is because so many of the people who treat eating disorders had (or still have) the illness themselves. On one hand, this gives them great empathy. On the other, it weds them to a particular narrative—their own personal story line. For instance, if they recovered by finding God—which isn’t that unusual; one of the biggest residential treatment chains, Remuda Ranch, offers a twelve-step, Bible-based approach—they’ll push their patients in that direction. If, as is all too common, they themselves still struggle with disordered eating, they’re likely to believe, and to communicate to their patients, that full recovery is impossible, that anorexia is an illness you have to manage for the rest of your life. They will, however inadvertently, convey a sense of hopelessness and resignation based on nothing but their own experience.
What I want is what’s commonplace in every other area of medicine: best practice. Evidence-based treatment, based on the most up-to-date research and clinical practice. It doesn’t seem a lot to ask, to advise patients out of knowledge rather than belief. That’s what doctors do, isn’t it?
Not in the world of eating disorders. Not yet.
When Kitty was four or five, she went through a fairy-tale phase. Every night Jamie and I read her parables about good and evil, usually featuring a young girl in mortal danger who, in the end, lives happily ever after. So I know how fairy tales work. Events unfold according to a formula known or intuited in advance. They have a predictable story line, complete with warnings and foretellings, symbols and metaphors that make them both universal and compelling. Which, now that I think about it, might be why Kitty loved them so much. She’s always been the kind of child who likes rules, who needs to know not just what to do and how to do it but what not to do and how to stay out of trouble.
If our story were a fairy tale, there would be a magic needle, a bridge rising out of the mist, a talking fish that would whisper instructions in my ear about how to trick our way across that chasm. And we would cross that chasm. We would overcome all obstacles, real and supernatural, and make our way to safety.
One of Kitty’s favorite childhood books was a gorgeously illustrated retelling of the Russian firebird myth. The main characters are a dim but handsome young prince named Dmitri and his wise talking horse. Together they face dangers, pass through trials by fire and water, and pit their wits against the machinations of an evil king. Each time they face a seemingly insurmountable obstacle, Dmitri runs crying to the horse, wringing his hands, sure that he’ll fail. And each time the horse says, “The trouble is not now. The trouble is still to come,” and then tells Dmitri what to do. Those phrases—The trouble is not now. The trouble is still to come—become a refrain in the book, and over time they’ve become a kind of family motto for us, a joke we tell each other to remind ourselves that we can handle it, whatever it is.
Toward the end of the book, Dmitri must leap three times into a cauldron of boiling water without getting scalded or drowned. When he runs to the horse, anxious about this final test, the horse replies, “The trouble is now.” It comes as a shock because you’ve been lulled by the reassuring leitmotif: The trouble is not now. The trouble is still to come. Of course, thanks to the horse’s quick thinking, Dmitri passes unscathed through the boiling water, vanquishing the evil king and winning the hand of the woman he loves. Happily ever after for everyone, including the horse.
I want someone to tell us not only what to do and how to do it but that we can do it. I want to live inside a fairy tale, where good triumphs over evil and love overpowers greed, envy, resentment, and fear. Because the one thing I know for sure is that the trouble is now. The water is boiling, the demon is laughing, the young woman’s life is in mortal danger.
If I can’t have a talking horse, I at least want a guide, someone who’s traveled this road and knows how to make it across the chasm. Who will talk us through the scary parts. The trouble is now and the trouble is still to come. And I don’t know if we’ll be all right.
{ chapter six }
September
Through all my growing up, and through all my marriage and through all the tough times, I was always trying to measure up, or trying to be somebody else. And all of a sudden you said, “I just love you. I don’t need you to be well. It d
oesn’t matter.”
—BETSY HALL, who has struggled with anorexia and bulimia for much of her life, quoted in a film made by her daughter, Hope Hall
To mark the end of the first week of school—a week that’s gone pretty well for both Kitty and Emma—Jamie and I make plans for Sunday afternoon. We’ll take our kayaks to a nearby lake and paddle around, then hang out in the park onshore. Our last family outing was the opera in the park concert back in July. The night Kitty ended up in the hospital.
We’ve avoided going out since then because Kitty has needed to stay close to home. Eating is beginning to seem easier, but the prospect of eating a meal in front of other people still sends her into a panic. And I’ve come to realize just how much socializing is based around eating. Every party and backyard get-together includes food, and even when the focus isn’t a meal—say, a graduation party, even a neighborhood meeting—food is almost always on the table, literally and metaphorically. I think of Shan Guisinger’s comment about how social pressure facilitated eating in primitive societies and wonder if the urge to share food is an instinct coded into human DNA because it helps us build community.
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