I play my trump card, the one Jamie and Dr. Beth and I agreed on when Kitty came home from the ICU. “OK,” I say. “Go on upstairs and pack your bag.”
“What?”
“We have to go back to the hospital for a feeding tube if you can’t eat,” I say matter-of-factly.
I’ve heard of kids with anorexia who don’t mind feeding tubes. Who ask for them. I’m counting on Kitty’s fear of the hospital and the feeding tube, but I’m aware that this delicate interaction could go either way.
In the silence that follows I watch a range of feelings pass across her face: Her fear of the tube and the hospital. Her wish to please me. Her true terror of the food that’s been set before her. And under it all, the deep and powerful hunger she doesn’t recognize but that I can’t help seeing in her eyes, in the tremor of her hands, in the birdlike hunch of her bony shoulders.
I remember Sarah, the girl who talked to my neighbor and me, and imagine Kitty’s angel and devil, locked in a fierce and vicious fight. They roll on the ground, their claws raking my daughter’s skin, their fangs slashing, shrieking and bellowing in my daughter’s ear. She can’t look away, she can’t not hear them, and in my pity and horror and love all I can do is make myself as powerful as I know how and stand beside her, touch her, be present with her suffering.
Kitty picks up the spoon, loads a tiny bite of cereal into its silver bowl, and lifts it toward her mouth. The spoon shakes in her hand, and a flake falls off. She lowers the spoon, carefully scoops up the fallen flake, and lifts it once more. Go on, I think. Keep going.
And she does.
Breakfast takes a full hour. Afterward, Kitty writhes on the living room couch, crying, berating herself on and on for eating the whole bowl. I’m both encouraged and disturbed by the fact that her inner monologue is now made manifest. I sit with her, stroke her hair, and talk, words spilling out of me without thought or pause: I love you, you’re my girl, you had no choice, I made you eat the cereal. At this last her head comes up, and I catch a glimpse, the first in weeks, of the child I’ve known and loved for fourteen years. The real Kitty, whose look of sly but innocent mischief used to make me laugh, whose wide-set, velvety brown eyes popped open at birth as if she couldn’t wait to be part of the world. For a while as an infant the only way she could fall asleep was if Jamie held her along his arm, facedown, and whizzed her around. She never wanted to sleep; she never wanted to miss a thing.
I think of everything she’s missing now: friends, sports, sleepovers—the ordinary pleasures of a fourteen-year-old girl. I think of everything she’ll miss if she doesn’t recover: Love. Friendship. Meaningful work. Her whole life, really. The life she’s meant to lead. The life she deserves.
We sit together on the couch until Kitty falls asleep, exhausted, and then I slip away to the kitchen to start making lunch.
We start on a Monday in early August, just over a month after Kitty’s diagnosis. For the first three days I call in sick to work—it’s not a lie; I do feel sick—and we spend virtually every waking moment taking on anorexia. I cook and Jamie sits with Kitty. I sit with Kitty and Jamie takes Emma to a movie, away from the anxiety (ours and Kitty’s) that saturates the air. Breakfast blends into lunch, lunch into afternoon snack, snack into dinner and bedtime snack. Three meals and two snacks, and each one takes at least an hour. In hospitals and residential clinics, patients with anorexia have to finish eating within a set amount of time—half an hour, usually. As long as Kitty’s eating, I don’t see the point in making an arbitrary limit. That would just put more pressure on her, and there’s enough already.
Sometimes we sit there for an hour and Kitty still doesn’t finish. If she’s eaten at least part of it, we give her a bottle of Ensure Plus to make up the calories.
On Day Three I take Kitty to the pediatrician’s office for her weekly appointment. She has eaten everything we’ve put in front of her—not easily, not happily, not quickly. But she’s eaten. Dr. Beth, as usual, greets Kitty warmly, touching her lightly on the shoulder, and Kitty offers a rare smile back, a tight little moue that brings tears to my eyes, for the dissonance between this and her old smile, wide and direct and full of joy. Her eyes full of light. One day, I swear, I’ll see that light again.
But not today. When Kitty steps backward onto the scale, wearing a paper gown, I’m horrified to see that she’s lost a half pound. How is that possible? I know Kitty’s been eating. I’ve seen it with my own eyes. And I know she’s not purging, because either Jamie or I stays with her for an hour after each meal or snack.
As Kitty gets dressed, Dr. Beth motions me out into the hall, where she explains that during starvation, the body’s metabolism slows down, trying to conserve energy. It becomes superefficient, wringing every drop of energy out of each calorie that comes its way. When the food intake increases, the metabolism revs up, way up, in response. It becomes less efficient, spending more calories than before for the same activities. That’s what’s happening to Kitty right now. “It can take a lot of calories to get weight gain going,” says Dr. Beth.
Over the next few months we will learn just how many calories it takes—at least twice as much as the average teenage girl eats. Unfortunately, Kitty’s psychiatrist, Dr. Newbie, doesn’t seem to understand the vicissitudes of metabolism. At our visit to her the next day, she takes me aside to say that if Kitty loses any more weight—even a quarter pound—she’ll have to hospitalize her. “Her heart could be in danger,” she tells me.
I try to explain what Dr. Beth explained to me. “Kitty’s eating now,” I tell Dr. Newbie. “If you put her in the hospital, we’ll lose momentum.”
But Dr. Newbie stands firm. It would be too dangerous, she says; Kitty’s heart needs to be monitored if she loses any more weight.
We don’t tell Kitty. And that night we bump her daily calories up to eighteen hundred. Kitty complains that her stomach hurts, she’s bloated, she can’t physically eat this much, her stomach will explode. I’m torn. I know she’s eating more than she has in a long while, but she’s gotten here slowly, and eighteen hundred calories doesn’t seem like that much. Dr. Beth says to keep going, so we do. We try putting a heating pad on Kitty’s stomach after each meal, but it doesn’t seem to help. Other tactics work better. We watch a lot more TV than we ever have before because Kitty says it’s easier to eat while she’s watching. And after a meal, TV or movies or books on tape help distract her from the guilt of having eaten.
I expect this influx of calories to produce, if not a miracle, then at least a quick change. And we do see changes. Kitty’s eyes don’t look quite as sunken; her skin is a little pinker. She gets mad at me one day, and I’m thrilled; until now, she’s had neither the confidence nor the energy for anger.
But she’s still anxious about eating. Anxious doesn’t begin to cover it, actually. Kitty’s obsessed with food—how many calories it has, how I’ve prepared it, how it’s arranged on the plate. Before each meal she gathers a veritable arsenal of silverware: her baby spoon, its looping silver handle tarnished; an odd hors d’oeuvre fork, half the size of a regular fork; a child-size butter knife. After she eats, especially at night, she berates herself for hours. “I’m so fat, Mommy,” she sobs. “I feel so guilty for eating.” She often cries herself to sleep, with Jamie or me sitting beside her, rubbing her back the way we did when she was a baby.
And in many ways what we’re doing feels like taking care of an infant: We feed her, many times a day. One of us must always be with her. We spend a fair amount of time comforting and entertaining her. She’s even dragged her mattress into our room, positioning it on the floor beside our bed because, she says, she sleeps better when we’re close. That suits me, too; I need to know that she’s not doing a thousand sit-ups in her room in the middle of the night.
In our culture, children are supposed to grow up in as many ways as possible, as early as possible. We expect them to sleep on their own, feed and toilet themselves, tie their own shoes, and make their own peanut butter s
andwiches as soon as they’re physically able. If they don’t, we think there’s something wrong with them. We make no allowances for children who need to go slower or stay closer; instead, we pathologize them and accuse their families of unhealthy enmeshment. I’m sure that sometimes too much closeness can be unhealthy. But sometimes a helping hand is just a helping hand, and not a symptom of parental neglect or developmental delay.
Kitty’s current regression, for instance, feels appropriate. She is fighting for her life—body and mind and soul. I think it’s an excellent sign that she is letting us take care of her, however difficult it may be.
And it is—in fact, it’s the hardest thing we’ve ever faced as a family. As the first official week of refeeding blends into the second, Jamie and I see more and more of the alternate personality I think of as the demon. I’m aware that this sounds strange; I know there’s no literal devil inside Kitty, no supernatural force. But giving the illness a face other than hers helps me separate our daughter from the forces that torment her.
Day after day, we live under the tyranny of the scale. I’m almost as anxious as Kitty as her second weigh-in approaches. Please don’t let her have lost weight, I think. To put her back in the hospital now would be to undo the painful, painstaking work of this last week. When Kitty steps on the scale at Dr. Beth’s, I hold my breath. Which will it be—back home or to the hospital?
“A quarter pound up,” announces the nurse. “Good girl!” She smiles encouragingly at Kitty, makes a note in her chart, and whisks out of the room. I let out my breath in relief.
That’s when all hell breaks loose.
“I gained weight! Oh my God!” cries Kitty. She folds over on herself and begins a kind of moaning chant: I’m a fat pig, I’m gross and disgusting and lazy. Look what you’re doing to me, you’re making me fat. I should never have listened to you.
She lifts her head. Mascara streaks her sunken cheeks. “I’m never eating again,” she hisses, and now it’s the demon talking. “I won’t let you make me fat.”
I’m shocked to see the demon out in public. I can’t think of what to do. So I don’t think. I take Kitty’s sharp chin in my hand and look into her dark eyes, which blaze with rage and, yes, fear. “I won’t let you die,” I say, slowly and loudly. “Do you hear me? I won’t let you starve. I will keep you safe.”
Tears squirt from Kitty’s eyes; her mouth is open in a silent scream. But she’s not really fighting me. I have to believe that somewhere inside, she can hear me.
I let go of her chin. She tucks her head down into the bony scaffolding of her arms and begins to cry, softly this time. The demon has receded. For now.
And that’s how I come to understand the true nature of my daughter’s prison. What we have to do to set her free.
We are walking a delicate line between truth and delusion, between confrontation and collusion, because our daughter is trapped between us and the demon. There are times when we have to face it down, in words and actions, take a public stand against anorexia. There are times when Kitty needs to hear us do that. But there are other times when the pain the demon inflicts on her will be too great to bear. I imagine the terror and agony she lives with and I want to scream. So sometimes we’ll have to appease the demon with words, to spare Kitty.
Weighing in, for example. Kitty gets weighed in a hospital gown, standing backward on the scale, so she doesn’t know the number. Now I ask the nurses who weigh her to refrain from any comment at all, explaining that if they tell her she’s done a good job, she feels so guilty that it’s hard for her to keep going. Best not to say anything at all, or show any emotion. We’ll all try to be matter-of-fact, downplay the number on the scale, at least outwardly.
Yeah, right. I’m the least matter-of-fact person I know. Which is why it’s all the more important to create a bland, superficial persona—The Mother—and stick with it. The Mother, I hope, will block the empathetic connection Kitty and I share. Kitty has to believe that I am calm and in control. She has to believe I can keep her safe. The Mother will speak in platitudes and generalizations, telling Kitty, for instance, “Everything will be all right. I promise.” That’s not a promise I would normally make, even before anorexia; and even if I did, Kitty would never buy it. But she has to buy it now. She has to trust me and Jamie to override the demon in her head. She has to trust us to be stronger than the demon, which hates every quarter pound she gains because it’s one tiny step toward freedom. And somewhere inside, Kitty wants to be free. She’s relying on Jamie and me to let her out of the prison she inhabits. I believe this, deeply, passionately, truly.
We will make many mistakes. The trick will be to keep going.
On our last eighteen-hundred-calorie day, I get a call from an acquaintance, Mary, who has a daughter Kitty’s age; they took dance classes together for a couple of years. She’s calling to say that she spotted us the week before in a store and was shocked at Kitty’s appearance. “I didn’t recognize her,” she says. She didn’t want to approach us, so she called one of our neighbors, Delia, whom she also knows, and Delia told her that Kitty has anorexia.
And what am I supposed to say? “Yes, I know my daughter looks like a walking skeleton”? I haven’t even talked to Delia about it. Anything she knows comes secondhand at best. How dare she spread this kind of news?
I hang up as soon as I can and go out on the porch to glare at Delia’s house. I’m ready to storm across the street and tell her off, but Jamie stops me. “She cares about Kitty,” he says.
“Well, it doesn’t feel that way to me,” I snap. “It’s none of her business.”
Jamie gives me the look, the one he’s been giving me for the eighteen years we’ve been married: kind, steady, reassuring. Usually it calms me down. But not today.
We’ve told a few close friends what’s going on, but we haven’t broadcast the news of Kitty’s anorexia. For one thing, it’s her life, her illness, and she’s made it clear that she wants as few people to know as possible. For another thing, both Jamie and I also feel a sense of stigma and shame. People judge you when your child has an eating disorder, rightly or wrongly. Which is why I react so strongly to this bit of gossip.
I know I’m being defensive. But I can’t let myself feel anger toward the demon, because right now the demon inhabits Kitty, and that would mean getting mad at her. And I’m not mad at her, not really. Sometimes I feel angry—when she’s been sitting in front of a plate of chicken stir-fry for forty-five minutes, for example, picking out all the cashews. But it’s not her flinging the nuts off her plate in disgust. I have to remember: that’s not Kitty.
That night, we eat a late dinner; the temperature has been in the nineties for days now, but eat we must. Kitty uses a baby spoon to scoop up tiny bites of mashed squash (into which I’ve mixed butter and honey). One minute she’s fine, or what passes for fine these days: she’s not crying and she’s eating. Then she looks up from her plate and I can literally see her flip from Kitty to Not-Kitty. I feel a jolt of adrenaline. And sure enough, when she opens her mouth, the demon’s voice emerges, spewing its usual litany of self-loathing and rage.
“Why don’t you take your plate onto the porch?” Jamie asks Emma. We’ve been trying to protect her from the worst of the poison. Emma gets up from the table, but before she can make it out the door, Not-Kitty says, “I just want to go to sleep and never wake up.”
Emma freezes. Jamie and I look at each other. My heart turns over in my chest—literally, that’s what it feels like, a heaviness revolving under my breastbone.
Not-Kitty says it again, louder this time: “I want to go to sleep and never wake up! I don’t want to be alive anymore!”
Emma drops her plate and bolts from the kitchen as Not-Kitty begins to shout. I grab a bottle of Propel from the refrigerator, put a straw in it, and plunk it in front of my daughter. “Drink,” I hiss, and run after Emma.
I find her downstairs, crying hysterically at the bottom of the laundry chute. When the tornado sirens soun
d and we head for the basement, this is where Emma goes to feel safe. I put my hand on her back and she rears up out of the pile of dirty clothes, furious. “Don’t touch me!” she shouts. “I hate you! It’s your fault Kitty is sick!”
Her words smack the breath out of me. I try to suck in a lungful of air, but something inside me is paralyzed. Maybe I’m having a heart attack. Maybe the stress is killing me, right here in a pile of rumpled underwear. Don’t air your dirty laundry, my mother used to say. Don’t be so quick to tell everyone your business. This, then, will be my punishment for failing both my daughters.
Emma cries, her face contorted in grief and pain, and then I’m crying too, because I don’t know what else to do. We kneel side by side and howl ourselves hoarse.
Eventually Emma blows her nose and says, “I don’t want to go to my sister’s funeral.”
I put my arms around her, and this time she doesn’t pull away. “I don’t either,” I tell her, and hope my intention can magically keep the worst from happening.
{ chapter four }
The Country of Mental Illness
If you’re going through hell, keep going.
—WINSTON CHURCHILL
Anorexia is possibly the most misunderstood illness in America today. It’s the punch line of a mean joke, a throwaway plot device in TV shows and movies about spoiled rich girls. Or else it’s a fantasy weight-loss strategy; how many times have you heard (or said yourself) “Gee, I wouldn’t mind a little anorexia”?
The symptoms of anorexia nervosa are detailed in the Diagnostic and Statistical Manual of Mental Disorders, known familiarly as DSM-IV, the so-called bible of psychiatric illnesses. And the first item on the list of diagnostic symptoms is “a refusal to maintain body weight at or above a minimally normal weight for age and height.” Notice the word refusal rather than inability. No wonder anorexia is so widely perceived as an illness of choice or lifestyle; the psychiatric profession defines it that way.*
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