Brave Girl Eating (8 page)

These are the conclusions I draw from observing Kitty. To me they seem reasonable; given the history of eating-disorders treatment, though, they're downright revolutionary. Back in the 1600s, people thought you could catch a mental illness by touching someone who had one. We haven't come very far from that idea. We treat people with mental illnesses like lepers, stepping over them in the street when their disorders lead to homelessness, poverty, drug addiction; we shun them when they turn out to be people we know. A few psychiatric disorders have lost a little of that stigma—for example, people talk more openly now about depression and bipolar disorder. But with few exceptions we still don't want to hear about
the most severe cases of depression, or about the inner lives of people with schizophrenia or personality disorders. Once the label is slapped on, you enter a world made nightmarish not just by whatever disorder you've got but by the stress of being marginalized in a society that fears and loathes any hint of mental differences.

Classifying eating disorders as mental illnesses piles even more stigma and judgment onto sufferers. This categorization shifts assumptions around cause and treatment from the realm of the physical to the psychological. And it paints someone like Kitty all one color—the color of mental illness; whereas I see her as a complex person whose thinking and behaviors are distorted in certain crucial areas, but whose mental processes are working fine in others.

Semantics? Maybe. But the words we use to think and talk about the world often shape the way we see it—literally. I decide right here, standing in front of my closet, that I will never refer to or think of Kitty as mentally ill. She has an eating disorder. She, Kitty, the whole person. The eating disorder is a small part of her. It doesn't define her, even now.

 

One afternoon about five
days after Kitty comes home from the ICU, I'm sitting on the end of her bed, holding a frozen protein shake, the kind she ate in the hospital. Kitty sits propped up on pillows, crying. “Come on, Kitty,” I say encouragingly, moving the spoonful of chocolate shake closer to her. I want her to take the spoon and feed herself, but so far she hasn't. In the last half hour I've managed to get three spoonfuls into her mouth. The shake has long since melted; chocolate now stains the front of my pants and Kitty's blanket. My hands aren't all that steady these days.

I'm waiting for Kitty to be able to eat, but she says she can't eat, she can't drink. She says her throat is closing, she's a horrible person, she's going to get fat, she's the worst person in the world. She says she's never felt this way before. “What way?” I ask, still holding the spoon.

Kitty's hand shoots out, knocking the spoon to the floor. “I'm sorry!” she cries. “I can't help it! It's pressing on me!”

“What? What's pressing on you?”

But she's done with words, she's curled up on her pillow, sobbing, as the milk shake melts in its paper cup. I sit on the end of her bed, stroking her foot, waiting for the tears to pass.

I've spent so much time over the last few weeks waiting. Waiting for Kitty to have her IV changed. To cry herself to sleep. To finish chewing, with exquisite slowness, an infinitesimal bite of bread or egg or tomato. Waiting for that tiniest of bites to pass between her lips, down her throat, into her stomach. For the calories in that bite—two? five? fifteen?—to seep into her bloodstream, to circulate through her body and into her brain. To make her better. I'm so tired, I'd love to curl up on the end of her bed and sleep myself. But then where would we be? Still right here, with Kitty starving.

I force myself to sit up, let a little edge slip into my tone. “Kitty,” I say firmly, “you have to drink this milk shake. The doctor said so. Come on now, sit up. I'll get you a straw. It's melted anyway.”

Amazingly, Kitty sits up. She lifts her tear-streaked face toward me and I nearly drop the spoon. I know my daughter's face far better than I know my own. I've stared at it, examined it, admired it, loved it for fourteen years. I know every look in her repertoire, every expression. But I've never seen this face before. Her eyes have gone blank; her mouth turns downward in almost a carica
ture of a pout. Her tongue pokes out, and for a second I think she's sticking it out at me. Then I realize with horror that it's flicking like a snake's forked tongue.

Then she opens her mouth, and her voice, too, is unrecognizable. She speaks in a singsongy, little-girl tone, high and strange and chillingly conversational, the creepy voice of the witch in a fairy tale. “I'm a pig,” she says, not to me, exactly; it's almost like she's talking to herself. “I'm a fat pig and I'm going to puke. I'm going to puke up everything because I'm such a pig.”

I can't say anything because my teeth are chattering. The hairs on the back of my neck stand up as the words pour from Kitty's mouth. No, not from Kitty's mouth, because this is not Kitty. It's not my daughter who looks out of those dead eyes, who rocks on the bed, her bone-arms wrapped around her flat chest, who says the same words over and over as if her brain was reduced to a single thought. Somehow I'm up and off the bed, calling for Jamie, and then the two of us listen in horror and incomprehension as Not-Kitty spews a sickening litany of poisonous, despairing threats.

I don't know how long it goes on. A long time. I pray that Emma, in the next room, stays asleep. Over and over Jamie or I put our arms around Not-Kitty. We speak quietly in her ear, we shout, trying to break the hypnotic trance, trying to get her to see us, hear us. But it's as if we're talking to a ghost. No matter what we do, Not-Kitty keeps rocking and talking, her tongue flicking in and out.

Hours later, her eyes close suddenly and she doesn't so much go to sleep as fall out of the world. The veins in her neck stand out, as if even exhausted and unconscious she's straining against something. That's how it seems to us: as if the Kitty we know is being held hostage by—what, exactly? We don't know.

We creep out of the room without speaking, taking the long-
melted milk shake with us. We lie together in bed, trembling. Was I wrong about Kitty? Is she, in fact, deranged, possessed, mentally ill beyond our ability to help her? The next time she opens her eyes, who will we find: our daughter, or the demon who now seems to possess her?

 

In the morning, unbelievably,
Kitty is back to her normal self, or rather back to the version of normal we're getting all too used to. She eats breakfast without complaint and goes off to work with Jamie. I'm too rattled to go in to the office. Thank God for a boss who understands about families, because I need this job.
We
need this job, not just for the salary but because it supplies our health insurance. Such as it is.

That night, Emma's theater camp gives a performance of
Midsummer Night's Dream
. Kitty doesn't want to attend, but we insist. We're trying to maintain some vestige of normal family life, especially for Emma, who stood with us at her sister's bedside in the ICU. Who sits at the dinner table, hearing the poisonous words that pour from her sister's mouth. Whose life has already been profoundly altered by anorexia.

Jamie takes Emma to the theater early, and Kitty and I arrange to meet them there. In the car on the way over, Kitty tells me she feels funny again—dizzy, tight in the chest, floaty. It's been another hundred-degree day, suffocatingly humid; we're all feeling a little ill. In her fragile state, Kitty's probably dehydrated and overheated.

I could turn the car around and take her home, but I know how disappointed Emma would be. And suddenly I'm angry—no,
enraged
—at the idea of upsetting Emma. She's important too, damn it, and I'm not going to let her down. I pull in to the parking lot,
grab Kitty's hand, and half-pull her into the building, where I jam change into a vending machine. “Drink this,” I say, handing her a twenty-ounce bottle of fruit punch.

“I'm not thirsty—” she begins, but I interrupt her.

“This is not negotiable,” I say, my voice tight. “You will drink this, all of it, and then we will go inside. And if we need to go back to the hospital, we'll do it after the play is over.”

Kitty's mouth opens in surprise and hurt. Tears spring into her eyes and roll down her cheeks. Remorse prickles in my chest; I ignore it. “Drink,” I say. She drinks, all of it, as we stand outside the theater, watching families stream in, laughing and talking, going about their lives on an ordinary summer night.

By the time Kitty finishes, my anger has dissipated, leaving me both appalled at my behavior and encouraged by its results. I take the empty bottle from Kitty's shaking hand and put my arm around her shoulder. “You did good,” I tell her. I put two fingers on the artery in her neck, the way the nurses in the hospital taught me, and take her pulse: forty-one beats per minute. We'll call the doctor. But not until after Emma's show.

In the auditorium, I wind up sitting next to an old friend, Lisa. Kitty took dance classes with her at ages four and five. I wonder if Lisa knows what's going on with Kitty. We haven't kept it a secret, but we also haven't broadcast the news. I'm grateful when the lights dim and the show begins, and I can sit in the dark, my face hidden, and focus on something other than anorexia for an hour.

The show is a success, and Emma, a fairy swathed in bright gauzy scarves, has a moment in the spotlight playing the harp. She's been taking lessons for six months, and it's thrilling to see her absorbed in the music. And a relief to hear her pull it off without a wrong note. Jamie snaps photo after photo from the audience. At
the end of the show, as the cast take their bows, Kitty and I slip away; Jamie will wait for Emma and bring her home, where we'll celebrate her stage debut.

Before that, though, I call the pediatrician's office and find that Dr. Beth, bless her, has left instructions for just this scenario. I ply Kitty with Propel and ice cream and rub her back until she falls asleep. When Emma and Jamie get home, the three of us eat chocolate ice cream and giggle at Emma's backstage stories. For a little while we are a family again, though we each feel Kitty's absence.

Later, as Jamie sleeps beside me, I think about what I learned tonight. The last three months have been one long and painful lesson in inadequacy—our inadequacy in the face of our daughter's mortal danger. Tonight, out of fury and despair, I stood up to the eating disorder and won, at least for a moment. Tonight I learned that I'm not helpless.
We're
not helpless.

The last day of
July is Emma's tenth birthday. Kitty's been talking about it for a week now—not because she's excited to celebrate her sister's birthday but because she knows there will be cake. She bar
gains with us: if she doesn't have to eat a piece of cake, she'll eat an ear of corn, an extra slice of bread.

But underneath the drumbeat of Kitty's anxiety, Jamie and I both hear another note, a whisper of longing that surprises me, then horrifies me
because
it surprises me. In just a few months, I've grown used to the idea that Kitty fears and hates food, that she doesn't like to eat. I have, without meaning to, changed the way I think about her and eating.
Of course she doesn't want cake. Of course she doesn't want butter on her bread, or cheese in her sauce, or any food with more than fifty calories.
I'm already thinking about Kitty's fears as if they're perfectly understandable, if not rational—like Emma's picky-eater aversion to chili. Some of my reaction is an instinct to avoid conflict, a strategy I can no longer afford; we've been forced into conflict, like it or not. Some, I see now, is a kind of insidious accommodation. I, too, am a “good girl” personality, given to internalizing rules and playing by them.

Suddenly I can see how the very human propensity to make order out of chaos, to come to terms with change, to adjust, can inadvertently enable an eating disorder. Kitty's been sick for only a few months, but already it's as if I've forgotten who she is without the anorexia.
Of course she doesn't want cake.
Months from now, Dr. Daniel le Grange will tell me, “There's something about anorexia that makes parents and clinicians think in different ways than they would have. I don't know what it is about this illness that gets us to think,
It's not such a bad illness
.”

I wonder if our twenty-first-century ambivalence about food is to blame. I can't think of a single woman friend who has never dieted, never deprived herself of food in the name of something bigger than appetite—health or fashion or sexual attractiveness. And where do we draw the line between anorexic food restriction
and other kinds of restricting? We live in a culture where many of us feel shame over eating anything but grilled chicken, lettuce, and fat-free dressing. A friend once told me she wished she could scrape the taste buds off her tongue, so she didn't have to choose between the pleasures of eating and being thin. I'm guessing she's not the only one who feels this way.

When I look at the rich dark chocolate cake, I feel not only Kitty's fear and shame and longing but my own. Kitty wants to eat the cake
and
she's afraid of it. In a fundamental way, I know how she feels. Doctors harangue us about eating too much and being too fat. TV, movies, and magazines present stick-thin women as attractive, and after a while, we begin to buy in to that image. We reinforce it in casual conversations in the grocery store, on the phone, at our children's schools, at restaurants, walking around the neighborhood:
I'm so bad—I ate a piece of cake
. Or
I'm such a pig!
Or
Look at these thighs. It's a wonder I don't break the chair.

Food as an object of fear and loathing is a strangely seductive idea. Which reminds me of a Yiddish folk tale I heard as a child, about a miser, a miserable old coot who kept a dog to protect the gold coins hidden under his mattress. Being a miser, he was always looking for ways to spend less. One day he had a brilliant idea for how to save money; each week, he would feed his dog a little less than the week before, so the dog would get used to eating less, bit by bit. He did just that. Each week the dog became weaker and hungrier. Eventually the miser stopped feeding the dog altogether, and not too long afterward, the dog keeled over, dead. And the miser lamented:
Just when I'd trained him to live on nothing at all, he had to up and die on me!

I realize how deeply we as a culture have fallen for the notion that food is a regrettable necessity. As if the ideal, the holy grail
we are all working toward, is to do without food altogether—and as if we not only should but could attain this state, were we good enough, determined enough, strong enough. As if that's what we should want.

So I tell Kitty no bargain; she has to eat a piece of cake. We
all
have to eat a piece of cake. Still, I'm shocked when she does, spending half an hour over a small slice of dense chocolate ganache. Afterward she weeps in my arms. “That was scary, Mommy!” she cries.

When Kitty was four, she scrambled onto the back of an enormous quarter horse for a walk around an indoor ring. When the horse reared, she held on without a sign of panic. I asked later if she'd been scared. “Not really,” she said. “Can I ride again?”

This is the child who is now terrified by a slice of chocolate cake.

Later that night I prowl the house, unable to sleep. I pad into Kitty's room and lean over her bed, wanting to see her face relaxed even a little, free of the shadow that haunts it when she's awake. She stirs at my approach, rolls her head from side to side, and says clearly, “Make it go away.” Her eyes are squeezed tight, her mouth drawn down in a rictus of pain. Physical pain? Emotional pain? I have no way to know.

Make it go away.
The shadow is always with her now, even in sleep.

 

The next day, I
decide to run errands before heading to work. For the last month and a half, everyday life in our house has pretty much stopped; the only trips we've taken lately have been to the grocery store and the doctor's office. Emma needs new shoes and a
haircut, but she says she doesn't want to go out with me this morning. “I need some time to myself,” she says, blowing the bangs out of her eyes. I know what she means: time in the house without Kitty (who's at work with Jamie), or the endless discussions about food that seem to take up every waking moment these days. I kiss the top of her head and lock the door behind me.

At the library, I pay for a stack of long-overdue books, then force myself over to the new books section—not that I have the time or the energy to read. But I always cruise the new books at the library, and right now I'm hanging on to any shred of life as it used to be. As I stand unseeing in front of the New Nonfiction shelf, one title jumps out at me: a book called
Eating with Your Anorexic
, by Laura Collins.

This book is not like those despairing memoirs I couldn't read. It's written by the mother of a fourteen-year-old with anorexia, who was dismayed at the treatment options offered; she found another treatment, one I haven't heard of before. I read the whole book, sitting on the floor in the library, and by the time I'm done I have a glimmer of real hope for the first time.

That night I spend hours online, digging up everything I can find on family-based treatment for anorexia. FBT—or, as it's often known, the Maudsley approach—draws on the work of Salvador Minuchin, who more or less developed family therapy in Philadelphia in the mid-1970s. Minuchin discovered that when he treated anorexic teens with family therapy, about 86 percent recovered—a staggeringly high number, given that typical recovery rates were then (as now) closer to 30 or 40 percent. He reasoned that dysfunctional families must cause eating disorders, and much of his work thereafter focused on “fixing” family problems to help teens with eating disorders recover.

Around the same time that Minuchin was experimenting, three therapists at London's Maudsley Hospital—Gerald Russell, Ivan Eisler, and Christopher Dare—noticed how nurses on the hospital's inpatient unit were able to get anorexic patients to eat by sitting with them, rubbing their backs, talking kindly to them, encouraging them, often for hours. “They made it impossible for someone not to eat,” recalls Daniel le Grange, director of the eating-disorders program at the University of Chicago Medical Center. “They were consistent and persistent.” I called Le Grange after stumbling across information on an anorexia study at the University of Chicago, three hours away from us; treatment is free if you're enrolled in the study. Maybe Kitty will qualify.

Le Grange trained with Eisler and Dare at the Maudsley Hospital in the mid-1980s, and, along with Dr. James Lock of Stanford University, wrote the clinician's manual on FBT. Now he tells me that the Maudsley therapists also noticed that no matter how kind the nurses and doctors were, being hospitalized was traumatic for both teens and their families. “We were still inevitably giving parents the message, ‘You've failed at something that most parents succeed at, which is to feed your kids,'” he says.

Patients at the Maudsley Hospital ate and gained weight. But once they went home, they invariably relapsed, because parents were traditionally told not to sit and eat with them. In fact, eating-disorders specialists often recommended (and many still do) “parentectomies,” physical and emotional separation between parents and a child with anorexia. Parents are still advised by therapists like Dr. V. not to pressure their child to eat, not to talk about food, not to be the “food police,” to find other subjects to discuss. They're told to butt out, stand down, give their teenager space and autonomy.

They're told, in essence, to watch their child starve to death.

Anorexia, parents are often told, isn't about food; it's about control. Their children need to feel that they're in control of their eating, or, more likely, their noneating. They'll eat when they're ready. They'll eat when the underlying issues that caused the anorexia in the first place have been resolved.

Except a lot of them die before that happens. If it ever does.

Like Salvador Minuchin, both Chris Dare and Ivan Eisler are family therapists. They believed from the start that families played a key role in the recovery process. Unlike Minuchin, they didn't assume that families therefore caused eating disorders. On the contrary. “[Dare and Eisler] always had the whole family present,” explains Le Grange. “So there's the kid who has anorexia, but you also see the other two who are perfectly healthy. It's not that the parents don't know how to raise their kids and feed them; something just went awry with this one.”

I think I understand what Le Grange is getting at. For the last two months Jamie and I have been trying to get Kitty to eat, mostly without success. The process has felt adversarial—us against the anorexia—rather than supportive, both because we've been told by therapists like Dr. V. that we're not supposed to get involved with Kitty's eating and because we feel like we screwed up in the first place. That sense of self-blame and disempowerment is part of what's preventing us from being effective. But what if we approach Kitty's eating from a different point of view? What if we, like the nurses at the Maudsley Hospital, make it impossible for her not to eat?

That was Dare and Eisler's idea. Patients in the hospital ate with the support and encouragement of nurses; teens at home could eat if their parents supported and encouraged them. Parents love their children, and they have an enormous stake in their child's recovery.
No family's perfect. But maybe they don't
need
to be perfect. Maybe they just need to be able to get the job done.

This perspective marked a paradigm shift in the treatment of eating disorders. Historically, anorexia has been viewed as a biological “solution” to a psychological conflict: a teen starves herself in an attempt to resolve emotional issues, including loss, family conflict, fear of independence, and confusion about sexuality. This case history, cited in 1984 by Pauline S. Powers, M.D., professor of psychiatry and behavioral medicine at the University of South Florida in Tampa, is pretty typical:

I wonder if there's a mother anywhere in America who has actively supported every single one of her daughter's choices.

Or how about this case history, also cited by Powers:

More recently, here's what clinical psychologist Richard A. Gordon, author of
Anorexia and Bulimia: Anatomy of a Social Epidemic,
has to say about eating disorders: