Brave Girl Eating (16 page)

Emma's room is dark and quiet, with two closed doors between her and Kitty's radiating misery. Yet I know Emma is hyperconscious of the drama playing out across the hall. I sit beside her on the bed, as I've done every night since she was a toddler. This is our talking time, in the dark, just the two of us. I want to help her process what's happening, but I don't want to make everything revolve around Kitty. So I try to follow her lead.

Tonight she wants to talk about the anorexia. “Is Kitty going to get better?” she asks.

“Yes,” I promise, hoping it's true.

“Are you taking care of her?”

Will you take care of me?
That's what I hear in Emma's anxious question. “Always and forever,” I say.

We sit quietly for a few minutes. Then Emma says, “I can see the anorexia in my mind. It's like a cartoon person, but it's not funny.”

“No,” I say. “It's not funny.”

“It's wearing all black and has spiky hair.”

“Blond hair, like Kitty?”

“No, dark hair,” she says. And suddenly I can picture it too, faceless. A walking black hole that sucks everything into its open, aching mouth. Including a lot of Emma's life.

My only consolation is that maybe watching Kitty go through this will somehow inoculate Emma against the possibility of an eating disorder. Craig Johnson, who directs the eating disorders unit at Laureate Psychiatric Hospital in Tulsa, Oklahoma, says that having a family member with anorexia nervosa makes a child twelve times more likely to develop it herself. In relative terms, the risk is still small, since only about 1 percent of girls and women develop the disease. But any extra risk is too much for me. I've heard of families with two anorexic daughters; a mother named Mary Ellen Clausen, who lives in central New York, started a nonprofit called Ophelia's Place after both of her daughters struggled with anorexia. I can't imagine what she's gone through—what their whole family has gone through. Then again, before anorexia, I could never have imagined what Kitty's going through now.

Back then, I wouldn't have thought it important to understand the inner reality of an eating disorder. People suffer in so many ways—it's not possible to get them all. Anorexia, I would have said, is one of many illnesses, and thank God it hasn't happened to my family.

I don't feel that way anymore, of course, because it
has
happened to my family. But self-interest is only part of the urge I feel to make people get it, give them a taste of what it's like to have anorexia. Only a small subset of the population is biologically predisposed to have an eating disorder. But we're all vulnerable in some way. I've had panic disorder for as long as I can remember, and the experience has shaped me profoundly. I've watched friends struggle with depression, bipolar disorder, anxiety disorder—the kinds of illnesses we all think happen only to other people. Advocates for mental health parity say that for every piece of parity legislation that's been introduced, there's a legislator with a spouse, a family member, or a close friend who struggles with some form of mental illness. We don't get it until it gets us. But one way or another, it gets us all.

The next day, I take Kitty for her weekly weigh-in. Dr. Beth schedules us as her last appointment of the day, and she often stays to talk with us long past closing time. As usual, Kitty's anxiety rises as the afternoon wears on. Getting weighed for her is a no-win situation. The demon wants her to lose weight, or at least not gain; the part of her that's separate from the anorexia wants to gain weight, both because she wants to please us and because she wants to get better. “I want my life back,” is how she puts it. “I have no life now.” If she doesn't gain weight, she suffers our disappointment, and her own. If she does, she suffers a cascade of anorexic thoughts and feelings, the wrath of the demon.

At the office, the nurse hands Kitty a cup and ushers her into the bathroom for the usual ritual. Then comes the moment of truth, when Kitty steps onto the scale, her back to the machinery, and waits for the nurse to nudge the metal weights into perfect alignment. I try to keep my face blank, though Kitty says she can always tell by looking at me whether she's gained or not.

Today the scale shows neither gain nor loss. My heart sinks, even though I know that metabolism is complicated and weight gain is not a linear process. But I need to feel like Kitty's moving forward, even at a glacial pace. Plus, some days I'm overwhelmed by the feeling of being way out here on our own. It's not just that no one is telling us exactly what to do, that we're more or less feeling our way through the dark and scary forest; we're actually going against the conventional wisdom. If we'd taken the accepted route, Kitty would be an inpatient now at a hospital an hour away. Instinct tells me that that wouldn't help her, that in fact it would harm her. But Jamie and I don't know what the hell we're doing. I'm not a doctor. What if my judgment is compromised? What if I'm just wrong?

Dr. Beth comes in with her usual smile. Tucking a strand of blond hair behind one ear, she looks over Kitty's chart and reassures me that by every objective measure, Kitty is improving. Her heart rate's up into the 70s; her pulse and blood pressure are good. Despite today's stagnant scale reading, Kitty has gained fourteen pounds in the last seven weeks.

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.