We talk about Kitty’s increasing anxiety, some of which is likely a by-product of refeeding. The psychiatrist bumped up Kitty’s dose of fluoxetine a few weeks ago, because she was feeling more anxious, and now Dr. Beth wonders if the meds are part of the problem. “Try cutting back to the previous dose,” she suggests—good advice that I suspect would never have come from the psychiatrist. In fact, as I later learn, study after study shows that antidepressants like fluoxetine don’t help people with anorexia. Which doesn’t stop psychiatrists from prescribing them.
Dr. Beth makes me feel like we’re doing OK. So many of the doctors and therapists we’ve seen since this began have exuded some level of blame or anger or annoyance—toward us and toward Kitty. Even when their words are neutral—Anorexia is no one’s fault, it’s a biological illness—their body language, the look in their eyes, convey a subtle sense of criticism. It strikes me that both doctors and ordinary people project all kinds of judgments, feelings, and desires onto people with eating disorders. Since getting sick Kitty has been both admired and scorned for her perceived stubbornness, envied for her emaciation, belittled for her feelings. The praise she’s received for her extreme thinness comes with a dollop of prurience, a sense that she’s accomplished something both meaningful and shameful.
I don’t believe anorexia is a response to environment, but I do wonder about its relationship with culture. Once you develop anorexia you become not just a person with an illness; you come to represent something here and now, in this time and place. You become the anorexic, your identity inextricable from the illness. Other diseases have carried a sense of stigma and judgment over the years—cancer, for instance, which was rarely mentioned or discussed when I was growing up. People with cancer felt a sense of shame and isolation, as if they were to blame for their illness.
But the stigma of anorexia, bulimia, and other mental illnesses goes beyond that. Even the way we talk about them is different. People with eating disorders lose their identity; they become anorexics or bulimics. We conflate them with the disease, as if whoever they were before the illness disappears when they’re diagnosed. Whereas there’s no one word to define someone with cancer or heart disease. A patient with lymphoma isn’t a lymphatic; he or she retains a sense of individual identity. It’s a small point, but it matters, because language shapes the way we think about the world. Calling someone “an anorexic” suggests that anorexia is all there is to her, that it is her and always will be, that there is no extricating the person from the disease.
Sometimes, while Kitty is at school or asleep, I take out our photo albums, filling my eyes with her face and body and essence before: Age eleven, standing in front of Lake Superior, pants rolled up, beside Emma, each of them holding up handfuls of rocks collected along the beach. Age three, on the dock of the house we rented in northern Wisconsin that summer, grinning beside her friend Cinda, a bulky orange life preserver around each of their necks. Age four, holding a newborn Emma, her blond hair falling protectively over the baby in her lap. Age nine, sitting at my mother-in-law’s kitchen table, totally focused on a stack of homemade pancakes.
I won’t mistake the disease for my daughter. I will remember Kitty as she was before anorexia and as she will be again when it’s gone.
I know I’m hypersensitive about this. What I want is for people to treat Kitty as though she’s not just another anorexic, one of the thousands who say the same things and look the same way and struggle with the same compulsions. I want people to see the girl beyond the disease, with her habits and charms and failings. Her idiosyncrasies, not anorexia’s.
But Kitty seems to feel relief at meeting other kids with eating disorders. She comes home from Ms. Susan’s first lunch group practically gushing. “No offense, but you guys don’t know what it’s like,” she tells me. “Mom, they really get it.”
I’m standing at the kitchen counter, scooping Häagen-Dazs into the milk-shake maker a friend sent over. “Honey, I’m so glad,” I tell her.
Kitty leans against the doorjamb, staying outside the kitchen as I prepare her food. “They totally get it,” she repeats. “I can be myself around them.”
I want to ask, Which self? But I’m afraid of what she might say, or imply. I don’t want her to take on the identity of anorexic. Maybe it’s inevitable. Maybe, in fact, it’s already happened, and I’m trying to close the barn door after the horse has galloped off. Still, one of the reasons I look forward to our appointments with Dr. Beth is that she seems to see beyond the disease. She talks to my daughter as if Kitty is an ordinary teenager. She asks about school and friends, boyfriends and movies. She brings a feeling of joy into the exam room, the joy of ordinary life, which we all have been missing for months.
Over the next few days, Kitty brightens visibly. Maybe cutting back on the meds helped. Maybe it’s the new lunch group. Or maybe it’s the weight gain. She seems engaged with the world in a new way. Or, rather, an old way, one we haven’t seen since last winter. She tells me she’s going to join Latin Club; Latin’s her favorite class, because she loves the teacher.
A few days later, as I walk Kitty up the hill to school, I ask, “How was Latin Club yesterday?”
Silence. Then she says, “I didn’t go.”
“Why not?”
Her eyes fill with tears. “Because they serve brownies at the meetings,” she says. “And I would want one, but I’d be afraid.”
“Afraid of what?” I think I know the answer, but I want to hear what Kitty says. Sometimes she seems incredibly unaware of how she’s feeling and acting. I wonder how she sees things in moments like this, when the demon has subsided below the surface.
“If I choose to eat something I don’t have to, then I’m bad,” she explains. If I choose to eat something I don’t have to. Anorexia is a prison sentence for a crime you didn’t commit, a crime that fills you nevertheless with guilt and dread.
I look at Kitty, pride and sorrow welling up in my heart. Sorrow over the claustrophobic, obsessive world she inhabits, and pride at her astonishing candor. These dispatches from the land of anorexia take a kind of bravery few people understand.
“You could go to the meeting and not eat anything,” I say, but she shakes her head, and I understand: Not yet.
The next day I get another lesson in just how hard things are for my daughter, when we go downtown to do errands. As we walk by a new Ben & Jerry’s store, she says, “If I were required to have another snack today, I would want to have it in here.”
I open my mouth to say “What?” and then close it again. I pick up on her cue. “You know, I’ve been reviewing your day’s calories, and you need an extra snack this afternoon,” I tell her.
I expect her to say no, despite the invitation she’s extended. Instead, she pushes open the door and goes inside, where she spends five minutes deliberating about what to eat—not freaking out, not panicking, but deciding what she’s in the mood for.
I have a good idea of how many calories Kitty’s eating every day—between twenty-five hundred and three thousand—and so far today she’s on track. I’m astounded by the fact that the harsh taskmaster that flays her with guilt and fear and misery could be rendered harmless by such a transparent charade.
But this charade only strengthens my instinct that Jamie and I are at war with the voice in Kitty’s head, the one that tells her not to eat, that she’s fat, that she’s loathsome and worthless. We hear only a fraction of its awful words, but Kitty gets up with it in the morning and goes to sleep with it drumming in her ears. We sit in Ben & Jerry’s and I watch her dip her wooden spoon again and again into a dish of frozen yogurt. Her face is open and unguarded and, yes, happy. I’m struck by the power of words—in this case, my words, which have rendered the voice in Kitty’s head mute and harmless. For the moment.
And I am amazed and grateful that this is so. All my life I’ve heard people say that love is powerful. This is the first time I deeply, truly believe it. Love can overcome the demon—for the moment.
I know it will come back, in ten minutes or an hour or a day. The demon’s voice will roar in Kitty’s ears and spew out of her mouth and nothing we say or do right then will make it stop. But there will be other moments like this one, when our voices drown its insidious refrain. More and more moments, I hope, until, like the Wicked Witch of the West, the demon melts away.
I know that time is a long way off. I know the trouble is still now and the happy ending is yet to come. Earlier today I saw my doctor for a physical. When she walked into the room, I surprised both of us by bursting into tears. It felt good to cry; these days I am mostly numb and disconnected. I can’t afford to feel pain because once it starts it might never stop, and then what good would I be to anyone? There will be plenty of time to process all this later. After Kitty’s recovered. When, not if.
In fairy tales there is often a cleansing ritual, a symbolic expunging of dangerous magic. I want there to be a ritual for us. I want to walk through the house with a bundle of burning sage, a braided candle, a stick of incense. I want to wipe away the confusion and misery and suffering. But for rituals to work, you have to believe in them. And I don’t. I believe in the marriage between the mind and the body, thought and feeling. I believe in the body’s need to be nourished and the mind’s ambivalence about doing it. I can’t afford to feel powerless and helpless; that’s a luxury, that kind of thinking, and it won’t help Kitty one bit.
That night I sit with Kitty as she gets ready for sleep. Six months ago she would say goodnight and close her door, and that was that. Since the anorexia, we’ve resurrected our old bedtime routines. Now she lies on her stomach and hikes up her pajama top, and I put my hand against her back. I can still see the knotted rope of her spine, but now the vertebrae are covered with smooth flesh. Three months ago, I hated feeling the rude skeleton protruding through her icy skin. The claws of her hands. Touching her left me bruised and anxious.
With the tip of my index finger I trace letters against the warm skin of her back: I. L. O. V. E. Y. O. U. We started this ritual when she was learning to read, when putting letters together into words was a magic act she never tired of.
After a while I get up. “Don’t go,” says Kitty. “Don’t leave me all alone.”
“I won’t,” I say, easing myself down on the bed again. “You know I won’t.”
By the third week of September, Kitty’s weight has plateaued. Jamie and I confer with Ms. Susan and raise her calories to thirty-five hundred a day. That’s a lot of food.
Eating large amounts upsets Kitty’s stomach—eating any amount seems to upset her stomach, actually—so we try to reduce the volume and make sure everything she eats is calorie efficient. Our kitchen becomes High-Calorie Central; Paula Deen is my new literary muse. We go through so many sticks of butter that I dream about unwrapping them in my sleep, peeling back the translucent paper, dropping them one by one into an enormous metal bowl.
Which leaves Kitty with a meal plan something like this:
Breakfast: a large bowl of nutty granola mixed with vanilla yogurt and raspberry jam
Snack: a high-calorie protein bar
Lunch: a large sesame bagel slathered with 3 to 4 tablespoons of almond butter; chips; a piece of fruit
Snack: a milk shake made with 2 cups of Häagen-Dazs ice cream and a little milk
Dinner: a large serving of whatever we’re having; bread and butter; milk
Snack: three or four pieces of toast, buttered and sprinkled with cinnamon sugar; or a large (4 to a pan instead of 12) pumpkin chocolate chip or banana nut muffin
One of the challenges in refeeding Kitty is the fact that she feels no hunger. So she says, and I believe it. It’s still there—coming out in her continuous and obsessive thoughts about food, her need to plan every bite—but her brain and her body have become disconnected when it comes to eating, which makes sense in a way. If starvation is a function of, say, famine or war, if there’s no food available, then constant hunger pangs would be a pointless torment. Loss of appetite, in that case, is both a blessing and a self-defense mechanism.
Hunger is a function of a complex set of chemical interactions we don’t yet understand, involving hormones like ghrelin, which is produced in the stomach and makes its way to the brain, rising before a meal to trigger eating. People with acute anorexia have high levels of ghrelin. Another hormone connected with hunger is leptin, made by fat cells, which tells the brain you’ve eaten enough, shutting down hunger. People who have lost weight have low levels of leptin, which pushes them to eat more.
We need hunger in the same way we need pain: a stimulus that makes us behave in ways that preserve ourselves and our species. Without hunger, eating is a chore dictated by the clock, a literally unpalatable task to check off a list. Eating without hunger can feel punitive, the introduction of foreign matter into a body that does not welcome it. It’s easy to forget to eat without the relentless goad of stomach pangs, when food doesn’t look or smell good.
And hunger does more than just get us to the table. It determines, in part, how we metabolize what we eat. In the late 1970s, Swedish researchers fed two groups of women—one Swedish and one Thai—a spicy Thai meal. The Swedish women absorbed only about half as much iron from the meal as the Thai women. When the meal was mushed up and served as a paste, the Thai women absorbed 70 percent less iron than they had before—from the same food.*
The researchers concluded that when we eat a meal that’s unfamiliar or unappetizing, we don’t get as much nutrition out of it as we otherwise might. Why? Because some of the digestive and metabolic processes don’t take place in the gut. The smells, looks, and sensory gestalt of a meal we’re looking forward to trigger a series of processes in the brain, which in turn tells the salivary glands to kick into high gear, producing more saliva, and the stomach to secrete more gastric juices, both of which help digest the food.
Maybe this explains, in part, why it’s so hard for Kitty to gain weight. Maybe refeeding is not just a matter of calories in, calories out; maybe the anticipation and experience of eating helps determine how much of the meal Kitty’s body hangs on to. In which case this process is going to take a long time.
Physically, Kitty is making progress. Slow progress, but still. Mentally—that’s another story. At Dr. Newbie’s urging we start her on Zyprexa, a new-generation antipsychotic, and after two days she perks up, acting like herself again, with a certain alertness and outward-looking perspective that’s been gone for months. She says she feels better too, that she still has all the anorexia thoughts but the guilt isn’t as strong. Unfortunately, she develops a side effect called akathisia—jitteriness, agitation, and anxiety—and Dr. Newbie says we have to take her off the Zyprexa, that the anxiety will intensify to unbearable levels. When I tell Kitty, she protests, “But it makes the voice get quieter.” The voice in her head, she means. The voice of the demon.
I’m frustrated enough to cry. This is the only medical intervention that’s helped Kitty at all, and now she can’t take it. No shortcuts; we’ll have to do this the hard way.
When I look back even a month, though, I see how far Kitty’s come. Dr. Beth agrees. At our weekly appointment, Kitty asks when she can stop trying to gain weight and go on a maintenance diet, and Dr. Beth says, “Now!” When she heads down the hall to get something, I follow her out.
“I thought Kitty had to gain another ten pounds or so to reach her target weight,” I say.
“I think she can gain weight more slowly now,” says Dr. Beth. “Maybe a quarter pound a week.”
A quarter pound a week? I think about how long it took to get Kitty started gaining weight. I don’t understand why Dr. Beth wants us to slow down now that she’s actually got some momentum. Why go back to prolonging the misery?
“I’ve seen people overshoot their goal, and that wouldn’t be good,” she explains.
I want to ask, “Why not?” But I’m conscious, suddenly, of the fact that I weigh thirty pounds more than the charts say I should. Self-conscious
. I don’t want to hear Dr. Beth say, “Because I don’t want her to be fat like you.”
To be fair, I have no idea if that’s what she’s thinking. What I’m thinking is, Wouldn’t it be better for Kitty to be a little “over”—whatever that means—than to chance falling down the rabbit hole again? We know the risks of her weighing too little; what, exactly, are the risks of her weighing five pounds “extra”?
I don’t say any of this, partly because I feel such self-consciousness. Instead, I tell Dr. Beth that I think Kitty heard the words “You don’t have to gain any more weight” and ask her to clarify. When we go back into the room, Dr. Beth tells Kitty she can up her activity level a bit and stay at the same calorie count. “So your weight gain will slow down,” she says. This is still a mixed message; for the last month we’ve been telling Kitty that she’s going to feel better when she’s gained enough weight, that our goal is to get her there as quickly as is practical and possible. We’ve told her to hang on, that things are going to get better. Now she’s hearing, more or less, this is it. This is as good as it’s going to get. I see the ambivalence on her face: the anorexia thinks this is fabulous news—you can stay thin! The part of Kitty that’s not thinking like an anorexic is not so sure this is a good idea.
I’m with her.
This will happen again and again over the course of the next seven months: not just Dr. Beth but Dr. Newbie and every doctor we see will be quick to tell Kitty that she can back off, not gain any more weight, based on the numbers on the chart. No one asks whether she still has anorexic thoughts and feelings. No one asks us what her behavior’s like, how hard it is for her to eat. They tell her she’s fine when we can see clearly that she’s not.
Once more I think of Daniel le Grange’s comment about how anorexia seems to infect everyone around the sufferer too. And I can’t help but wonder how much the current angst about obesity and the general culture of fatphobia affects doctors’ attitudes. Still, we’re lucky to have our treatment team, even if I don’t agree with everything they recommend. Today, for instance, toward the end of this appointment, Kitty asks if she can fast on Yom Kippur, two weeks away. I hold my breath, wondering what Dr. Beth will say.
Brave Girl Eating Page 15