Brave Girl Eating (19 page)

Of course I know the real reason insurance companies don't cover mental health care: because they don't have to, at least in states like ours that don't have parity. Even in states like New Jersey, which has a mental health parity bill, insurance companies look for ways to weasel out of paying. They divide brain disorders into what they call biologically and nonbiologically based illnesses. In this ridiculously random categorization, schizophrenia is biologically based; eating disorders are not.
^*

The mental health profession unwittingly reinforces this kind of discrimination, especially when it comes to eating disorders, by maintaining that anorexia and bulimia are caused by psychodynamics. These “experts” who insist that eating disorders are psychological in origin play right into the hands of insurers, who use this to put eating disorders firmly into the “nonbiological” category.

Even if eating disorders
were
psychological, so what? They damage the body, sometimes beyond repair. They cause physical pain and suffering. People die from them. Do we somehow believe that people with mental illnesses deserve to suffer? That they don't deserve to get better? Because that's how we act. We act like it's OK for families whose children have autism or schizophrenia or anorexia to bankrupt themselves trying to get care for their kids or watch their children deteriorate because they can't afford treatment.

I plague our insurance company with complaints. I cry on the phone—out of frustration, mostly, but they don't know that. Eventually our behavioral health “consultant” grants us another $400—
$400
—for which I must kowtow at every opportunity.
She now begins all our conversations by reminding me how generous the insurance company has been to give us this “extra” coverage, which frankly will take us through another week and a half and then dump us right back on the road to financial ruin. If Kitty winds up in an inpatient residential treatment center, then we're really screwed: one to two thousand dollars a day, of which our insurance will cover six days.
Six days,
out of, say, a forty-five-day admission. Thirty-nine uncovered days at the conservative estimate of $1,000 a day equals $39,000. Where would we get the money?

And we're in good shape compared with other families. I'm probably not going to lose my job because of Kitty's illness. If I worked elsewhere—at a law firm, say, or a 7-Eleven—I'd have been fired long ago or would have had my pay docked. We're lucky, relatively speaking, but the situation is still unfair. Besides, these months of guerrilla warfare against an enemy I can't see or understand have left me spoiling for a fight.

And so I make phone calls to the insurance commissioner, the president of our insurance company, our legislators, the local branch of the National Alliance for Mental Illness. I call Kitty Westin, who brought a lawsuit against her insurance company, Blue Cross Blue Shield, after her daughter, Anna, was denied treatment for an eating disorder and committed suicide. Westin settled out of court in June 2001, and part of the settlement was that BCBS in Minnesota must now cover eating disorders the way they cover broken legs and other undeniably physical ailments. After the settlement, several other big insurers in the state voluntarily changed their coverage too, afraid of similar suits they couldn't win. Westin, who created a foundation in her daughter's name, encourages me to push for legal action. “That's the only way things will ever change,” she tells me.

The president of the insurance company doesn't return my calls, surprise surprise; neither do the legislators. I tell someone at the insurance commissioner's office about Kitty Westin, and he tells me we have no case. Minnesota has mental health parity laws; our state doesn't. Our insurers have fulfilled their legal obligations and then some. “So that's it?” I say. “We have no recourse? We're supposed to go home and be grateful we're not in debt for $100,000?” Pretty much.

The only thing left to do is file a grievance with the insurance company and ask for an appeals hearing, which they have to give us. Dr. Beth says she'll come to the hearing if she can. But the insurance company gives me only a few days' notice, and she can't rearrange her schedule.

So on the appointed afternoon I drive thirty miles to the company's brand-new world headquarters, which looks incongruous in its cornfield, on the outskirts of a small rural town. And at the appointed time I am ushered in to a conference room and seated at the head of a table full of people, none of whom introduce themselves. I've got ten minutes, so I talk fast. I roll out facts and statistics: average length of illness is five to seven years, average anorexia patient requires multiple hospital admissions, a third become chronic. I detail the high costs of treating chronic anorexia. I hand out copies of research studies and scientific papers, making the case that eating disorders are physiological, not psychological, and should be covered the way pneumonia and every other disease is covered. I recount an urgent, abbreviated version of Kitty's illness. I describe family-based treatment, contrast the thousands of dollars spent on Kitty's hospital stay with the relatively low cost of FBT, and suggest that covering a few thousand dollars of therapy now will save them money in the long run.

Once or twice I look up from my notes and see people nodding thoughtfully. I have no idea who they are. I've been told there are several doctors in the room, a “patient advocate” (though as far as I can see no one at this table is on my side), some administrators, and I don't know who else. I finish in exactly ten minutes, because an impatient-looking man near the head of the table is looking at his watch and I have the feeling he would take great pleasure in cutting me off midsentence. I stand up, collect my papers, thank the roomful of anonymous faces, and walk out on trembling legs.

The next morning—
fifteen hours later
—I get a letter from the insurance company saying they have “carefully considered” our case and have denied our appeal. Which means that the denial letter went out within an hour of my leaving the office yesterday. Considering that someone had to fill in the blanks on the form letter, print it, sign it, and mail it, that letter must have been ready to go before I walked into the room.

For all I know, that room was full of actors who populate grievance hearings for a living.

Either way, the whole thing was a sham. An exercise in futility. We'll find ways to pay for Kitty's treatment. But what about the families who can't, whose children go untreated because they can't take time off work to refeed them, whose insurance doesn't cover other treatments? Or the families who bankrupt themselves paying for two or three or five stints in residential treatment, who whip through their retirement funds, who take out second and third mortgages on their houses, who run up their credit cards and wind up so deep in debt it would take several lifetimes to dig out?

I don't have an answer. But I know right from wrong. And this is wrong. Very wrong.

In some ways, Halloween
is the perfect holiday for anorexia: it's about collecting candy but not necessarily eating it. After the ritual acquiring of the candy, the traditional counting, organizing, and trading of the candy are an obsessive's dream come true: arranging seventy-five or a hundred candy bars and bags in concentric semicircles, their cellophane wrappers festive against the dark wood of the living room floor. Long before anorexia, Kitty and her friends would set out their candy according to their own mysterious hierarchies. They would line up the Snickers bars, the Milky Ways, the Oh Henry!s and Baby Ruths, the Skittles and packages
of jelly beans, the little red boxes of raisins (always at the bottom of the heap). They'd pick them up, put them down, rearrange them, square them into neat rows. They'd bargain with one another, swapping the rejects for their favorites. Then they'd eat one or two and dump the rest back into a pillowcase or bag, to be stored in a kitchen cabinet, picked through over the next few months, and finally, a month before next Halloween, tossed out.

I wish Kitty wanted to go trick or treating, but I'm not surprised that she doesn't. I
am
surprised when she throws herself into putting a costume together with Emma, who wants to be Anne Boleyn. The girls spend all afternoon in Kitty's room with the door closed, improvising from the dress-up box, and emerge before dinner laughing and excited, with Emma in a long green cape and flowing white gown, her hazel eyes lined with dark pencil, her lips a glowing red. Her whole face shining with the pleasure of having her big sister pay attention to her.

And I'm even more surprised when Kitty announces that she wants to take Emma around. The three of us go out, leaving Jamie behind to hand out candy. Kitty walks behind Emma, holding up her trailing cape, encouraging her to tackle another block, and another. When we spot a couple of her friends, Kitty runs across the street to talk to them. “Why don't you walk around with them?” I ask. “Emma and I will be all right on our own.”

“But I want to stay with you!” says Kitty, looping her arm through Emma's. This isn't the clinginess of anxiety or terror; it's the pleasure of being with people you love. We cover the last block arm in arm, like Dorothy et al. in
The Wizard of Oz
, and I feel a wave of gratitude. An hour from now Kitty might be sobbing on the couch, or the demon might be raging through our house. Or the rest of the night could be just as magical as this.

Anorexia is teaching me to live in the moment. When the moment is awful, as so many moments have been over the last months, I can't imagine how we're going to survive it. When the moment is sweet, like this one, there's nowhere else I'd rather be.

When we get home, Kitty asks if she can take over candy duty. I hear her at the door, talking to the children who ring our bell. “You must be Madeline!” she cries to a small girl from down the street. “What a great costume!”
This
is the Kitty we've known for fourteen years—outgoing, sparkling, kind. I haven't realized until now how much I've missed this side of Kitty, the part of her that's so good at reaching beyond the borders of her self.

Later, she sits on the floor with Emma and inspects each piece of candy with her, turning it over in her hand, setting it neatly into its appointed spot. She's tender with Emma, and attentive. The two girls lean their heads together—one blond and curly, one dark and straight. Kitty pulls her curls up into a ponytail and whispers in her sister's ear. Emma bursts out laughing, her face open and vulnerable. Despite everything that's happened, she trusts her sister, a fact that astonishes and humbles me.

That night, tucked into bed, Emma says, “I like my hair, my body, and my feet.”

“Good,” I say. “Because you're perfect just the way you are.”

“But what if I had feetalimia?” she continues. “What if I thought my feet were too fat, and I cut off all the circulation to them, on purpose?”

I look at her in the light from the hallway. Eyeliner smudges each cheek, like the dark half-circles football players draw under their eyes. I worry about Emma, who doesn't say nearly as much as she feels.

“What if you did?” I say. “What do you think?”

She slides one leg out from under her blue-and-green biscuit quilt and considers it, turning it this way and that, looking at her pale toes, the slight swell of her calf muscle. Finally she says, “I think that would be ridiculous.”

“Me, too,” I say. I tuck her leg back under the quilt, smooth the fabric under her chin, kiss the spot on her forehead where her hairline dips into a heart shape. Emma has always had this knack of holding a mirror up to reality, showing us her own quirky, frank take on whatever's going on. She's only ten, an age when children are still literal thinkers and trauma can overwhelm their psyches. Plus, I haven't forgotten that Emma's more vulnerable to developing an eating disorder herself. So I'm not just amused by her analogy; I'm relieved. She gets it, and maybe that will keep her safe on both fronts.

Of course, I thought Kitty would be safe because she'd written a research paper on eating disorders, because she knew so much about them. Now I wonder if
knowing
can actually trigger anorexia in kids who are susceptible.

Keep Emma safe,
I think—to myself, to the universe, to anyone who's listening.

 

From the beginning of
this refeeding process, Jamie and I have been watching Kitty, day and night. We watch every bite she puts in her mouth and every bite she doesn't. We watch her in the bathroom after meals—that is, we require that the door be partly open if she uses the bathroom, and one of us hovers nearby, listening. We watch to make sure she eats, she drinks, she doesn't hurt herself. We check on her to make sure she's not exercising at 2:00
A.M
. We watch because we've learned the hard way that the demon will
exploit any moment of inattention or trust, like that day in the park when Kitty tried to throw away part of her protein bar. I'd guess there have been other moments we've missed.

On the whole, Kitty accepts our watching. On some level she seems to realize she's not capable of making good decisions, at least when it comes to food and eating. On some level, she still trusts us. Not just trusts us but
relies
on us to keep her safe.

One of the biggest criticisms of the Maudsley approach is that no teenager would willingly give up so much autonomy (or should be asked to), especially to her parents. And if you believe that anorexia is a choice, the last resort of a growing child who's been denied self-determination, then I can see how the refeeding process might seem like a further violation of a child's independence.

But I think this perspective fundamentally misunderstands the nature of anorexia. When I observe Kitty at the table I don't see a child who's expressing herself, who's exerting control over her environment. I see a child who's the prisoner of compulsions she doesn't understand—that no one understands—and that she can't control. I see a terrified hostage yearning for rescue. And there's no cavalry on the way. Only us.

If I need persuading (which I don't), the gradual shift that starts at the end of October—about three months into refeeding—convinces me we're on the right track. As eating has become easier for Kitty, Jamie and I have backed off a little in our scrutiny. If I'm sitting with her at the table, I might get up and stir something on the stove, leaving Kitty at the table for five or ten seconds. I'm still in the room with her, just not at the table. But one afternoon during snack, when I get up to get the newspaper from the living room, Kitty puts down her fork.

“You left,” she says when I reappear. “Where'd you go?”

“I had to get something. I'm back now.”

Kitty picks up her fork and resumes eating, turning the pages of her book with an apparent lack of concern. We say no more about it. But the next day I re-create the experiment. At breakfast I dish up her oatmeal, wait for her to stir in brown sugar and whole milk. After the first few bites I get up and begin rummaging in a cabinet, my back to Kitty for a few seconds. When I turn around, I see that she has indeed stopped eating. I give her an oblivious smile. “How're you doing?” I ask cheerfully, and she starts eating again.

Later that day, I pick Kitty up at school for an appointment with Dr. Newbie. After she climbs into the front seat, I hand her a protein bar. “You'll have to eat your snack in the car today,” I say.

She tears open the paper wrapper and takes a bite as I pull into traffic. She chews for a second, swallows, and says, “You're watching me, right? I can't eat if you're not watching. You can see me out of the corner of your eye, right?”

“Yep,” I say, my eyes firmly on the road. “I see every bite you take.”

Over the next few days Kitty asks again and again whether we're watching, and I know what she's really asking:
You're making me eat this, right? I don't have any choice here. Do I?
She needs us to take the responsibility for her eating because the compulsion to
not
eat is still so powerful.

Which is why, I realize, more traditional treatments are not just ineffective—they're cruel. It's cruel to insist that a child in the throes of anorexia “take responsibility” for eating, and absurd to suggest, as many therapists and treatment programs do, that unless a person with anorexia “chooses” to eat, she can't recover. Kitty's reactions make sense to me now. What wouldn't make sense would
be to turn my back on her. To have her life hinge on her doing something she cannot do.

Because I believe this with all my heart:
Kitty cannot choose to eat.
Not yet. The time will come when she'll have to do that, of course, when she'll have to maintain her weight and her health herself. And when that time does come, I think we'll know. She'll tell us, just as she's telling us now that she's not ready to go it alone. Just as she told us when she was ready to go away to camp, stay home alone, stay up a half hour later. All along she's been telling us, through words and action, what she needs in order to grow and become more independent. All we have to do is listen.

 

Kitty's spirits have improved
as her weight has inched up. And I've learned I can occasionally head off the demon by refusing to acknowledge it. On Halloween night, for instance, Kitty asks if she needs a snack. She hasn't collected or eaten any candy. I say yes, she needs to eat two ice cream sandwiches. “Do I really need two?” she asks. “My stomach hurts.” I hear the beginning of an edge in her voice.

“Yep, that's what you need,” I say matter-of-factly, and turn away deliberately to talk to Emma. Kitty eats the ice cream sandwiches, and the moment passes.

This strategy doesn't always work. A few nights later Kitty erupts into a sudden rage when I bring out her bedtime snack. The plate flies across the room and breaks, a shower of yellow shards. When I jump up to get the broom and dustpan, she bolts out the front door, yelling, “I'm going to run away!” Jamie finds her down the block, on her bike in the dark, and half carries her back to the house, bike helmet and all.

I feel blindsided and stupid, shocked all over again. It's been a few weeks since we've seen the demon, and already I'm forgetting its claws and fangs, its flicking tongue. How quickly the face of anorexia came to seem normal to us, and now I see that the opposite is true too: on a superficial level, at least, we're slipping back into something resembling ordinary life. Not our old life, which was more fragmented, less organized, more spontaneous. The new normal includes shopping, cooking, and supervising three meals and two snacks a day for Kitty. It includes more time spent as a family, sitting at the table or in the living room, driving to doctors' appointments, playing board games, talking before bed. It has its pleasures, this new life. Kitty taking Emma trick or treating, for example—that's something she wouldn't have been willing to do last year, or able to do six months ago. Last year, of course, Kitty was hanging with her own friends; next year, I hope, she'll be doing that again.

I'm puzzled by the fact that the demon is still so close to the surface. When Kitty doesn't get quite enough to eat, or when she goes more than a couple of hours during the day without eating, her mood plummets predictably. But she's nowhere near as thin as she was three months ago; in fact, her weight is now within a normal range for her height. That is, someone her height who had never had anorexia might be healthy at this weight, though clearly, Kitty has a ways to go. She's been eating three thousand to thirty-five hundred calories a day for weeks now, but both her physical and emotional well-being are still intensely frangible. She has no equilibrium point; she swings from feeling good to falling apart with frightening fluidity.

When we started refeeding Kitty, Jamie and I told each other and her that food was her medicine, that it would cure her, body
and mind. I still believe that. But I thought we'd see change more quickly. Before we began, Kitty ate very little, but she was chipper, competent, tireless. She practiced three hours a day at the gym, and, as we later discovered, spent hours at night in her room on conditioning exercises. I understand now that hyperactivity is a hallmark of anorexia; back then, I thought Kitty's stamina meant that she
was
getting enough food. Some people need less sleep than others; I wondered if some people need less food.

I can see now how my own attitudes toward food and eating blinded me to reality. I am the miser who expects his dog to not just survive but thrive on little or no food, only in my case it's not cheapness that informs this skewed perspective but my own ambivalence about food. I can't remember a time when I didn't feel conflicted about eating. The message I've gotten all my life, from a variety of sources, is that food is dangerous.
Enjoying
food is dangerous, because it might lead to eating too much, and the goal is to eat as little as possible and still survive. Because the worst thing you can be in this culture is fat.