Brave Girl Eating Page 17

  Maybe there’s something to Jaynes’s theory. In people with schizophrenia, who often hear voices, the corpus callosum is typically smaller and narrower than in those without schizophrenia. † I wonder if the demon might also be explained in terms of neuroanatomy. It certainly seems like Kitty’s experiencing an altered state of consciousness when the demon is at its loudest. It would be fascinating to see what areas of her brain light up at those moments.

  The next night we see a slightly different face of the demon. Kitty goes to her first gymnastics practice and comes home upset because she’s lost her skills. She’s thrust into that altered state where she spins around and around—in this case, over the fact that she’s lost her conditioning, she can’t do gymnastics, she’s no good, it was the only thing she’s looked forward to, it was the only thing she was good at and now she’s not. On and on she worries and obsesses. This time, maybe because I’m paying attention, I hear the moment when her distress over gymnastics flips into anxiety about eating. She goes from back handsprings to breakfast in one breath, worrying that if I make her have cereal the next morning, the milk will upset her stomach and then how can she possibly drink a milk shake tomorrow because that will also upset her stomach.

  “I’m serving eggs tomorrow morning for breakfast,” I tell her, hoping to allay a bit of the anxiety.

  “I’m afraid of eggs!”

  “Why don’t we talk about what’s really upsetting you?” I say.

  Out comes a gush of words. She says Jamie’s mad at her because she needs him to sit in the kitchen with her at lunch, and now we all hate her, she’s done nothing but cause us problems, she is stupid and fat and ugly. Oh, and why do I hate gymnastics when it means so much to her?

  “I don’t hate gymnastics,” I tell her. “I hate the anorexia.”

  In a flash her tone turns from self-pity to rage. “Well, the anorexia is part of me,” she says furiously, “and you hate the anorexia, so you must hate me!”

  “No, I don’t hate you, I love you,” I say as calmly as I can, but it’s like she’s Helen Keller and I’m no miracle worker. She doesn’t see me, she doesn’t hear me, she’s locked in, lost in her own terrible world, and I would give anything in my power right now to snap her out of it.

  “Why do you hate gymnastics?” Kitty cries. Then she leaps from the table, grabs a pillow from the living room couch, and starts stuffing it into her mouth. I grab it and yank it out; I don’t want her to make herself throw up.

  “I don’t hate gymnastics!” I yell. This is a lie. I do hate gymnastics, and gyms, and coaches, and leotards, and every last thing associated with the sport.

  Kitty glares at me. “Gymnastics isn’t to blame for my illness,” she yells. “I am! I’m stupid and fat and ugly! I’m a horrible person and everyone hates me!” She hits herself in the head, hard, with her open palm. I grab for her arm but miss. She hits herself two or three more times before I get hold of her. She’s much stronger than she looks—much stronger than she should be, and despite her frailty she could get away from me if she really tried. But she’s not trying.

  After what feels like an hour, but is probably three or four minutes, she collapses in my lap. “You want to take away the only thing I care about,” she sobs.

  “I don’t,” I say, stroking her hair. “But right now the most important thing is your health. That’s what I care about.”

  When she is finally asleep, I sit in the living room, lights off, feeling like a failure. I said all the wrong things tonight. I made things worse, not better. I yelled at my daughter. I couldn’t help her.

  Now I understand what the Maudsley people mean when they say it’s not helpful to cast blame. Blame makes you sit alone in the dark and feel like your skin has been flayed. Blame takes away your power and makes you into a small scolded child, when what you need is to get bigger. So big that you can reach down and swat away what plagues you. Big enough to stare down the demon no matter what form it takes.

  It’s self-indulgent to sit in the dark and feel sorry for myself when Kitty’s the one who’s got the demon inside her, who can’t get away from it. Who feels, as she said tonight, like it’s part of her, a notion that makes me sick to my stomach.

  That’s what most “experts” in this field seem to believe: once an anorexic, always an anorexic. That it’s like alcoholism, something you have to manage, actively or not, for the rest of your life. The day she diagnosed Kitty, Dr. Beth told us Kitty would feel much better in a year. She said she knows people who had anorexia in their teens and twenties, got better, and left it behind. Who didn’t feel it always lurking somewhere inside them. That was what I wanted to hear. But I wonder, now, if it was true.

  I’m relieved when Kitty decides not to go to the gym later in the week. She says she’s sore from the earlier practice. Instead, she volunteers with the Latin Club after school, and when I pick her up she’s smiling. This is what I want for her—this kind of social and emotional connection with the rest of the world.

  The next week the three of us meet with Ms. Susan to talk about the gymnastics team. I love this woman: after listening to Kitty talk about why she wants to join the team, she says, “There’s a lot of stress that comes from competing. I don’t think it’s a good choice for you right now.”

  “But I love competing!” says Kitty. “It’s not stressful!”

  “You love it, but maybe it’s not so good for you,” says Ms. Susan. She points out that any sport where you have to be in a leotard or bathing suit isn’t a good one for someone in recovery from an eating disorder, because it puts a lot of emphasis on the body, which is the last thing Kitty needs.

  “You want me to sit around and do nothing!” Kitty snaps. I’m glad she’s venting her frustration here instead of saving it for when we get home.

  Ms. Susan talks about the need to find a sense of flow in life, about the intersection between what you’re good at and what’s good for you. She tells Kitty this is her chance to explore other interests, to think about what makes her feel calm and centered. She tells Jamie and me that our instincts are good and that we should trust them. I think I want to marry her. Or at least get this on tape so I can play it every day.

  Ms. Susan speaks about using the anorexia as an opportunity for Kitty to go deeper, to look beyond the surface. For the rest of the session she talks to Kitty, and I really do wish I’d brought a tape recorder, because what she’s saying feels true and right, and I don’t think Kitty can hear it now. She’s still too impaired, too much under the spell of the demon and its distractions. Daniel le Grange told me about a mentor of his who used to say that if you do intensive psychotherapy with someone with anorexia, you wind up with an insightful corpse, because without enough glucose the brain can’t process or think properly.

  Sitting in Ms. Susan’s office, I can see that Kitty is on a path, as we all are, and that as much as I wish otherwise, anorexia is part of that path. I don’t believe it has to define her, now or later. But I realize I’ve been thinking about the eating disorder as something to get through and leave behind, and it may not be that simple. Even if Kitty gains the weight, gets well, and moves forward, this will always be part of her history and her journey.

  I can’t see the future and I don’t know what part anorexia will play in Kitty’s life. If all goes well, if we’re lucky, this will be it. But I also know from my own life how long-lasting the experiences of childhood and adolescence can be. The events of these years shape our lives in powerful ways. For better and for worse.

  Anorexia will be one of those events for Kitty, even if she’s never actively ill again. I think that’s part of what Ms. Susan is getting at: Kitty will have to integrate the whole of this experience—all the feelings and events, the terrors and the lessons—into the rest of her life. It’s a process that will take years.

  After the session, when the decision about gymnastics has been made once and for all, Kitty says she’s upset and angry. But she seems relieved. As if what she wanted all al
ong was for us to simply say no. Remember this, I tell myself. Remember to look past what Kitty says and into what she feels. Because clearly, they’re not always the same.

  In the third week of October, Kitty gains another two pounds. She’s now within eight or nine pounds of her target weight. Around the same time we also get the first bills for her treatment.

  The state we live in does not have mental health parity, and the federal parity bill is still several years in the future. Which means that our insurance company covers only $1,800 a year of mental health expenses. Back in June, when I started looking for a therapist, I paged through our plan’s provider list and wondered why I didn’t see any mental health listings. It took a while to realize that they were listed under “behavioral health,” a term that suggests that good mental health is merely a function of changing your behavior. It would be funny except for the deeper implication: that mental health is a matter of choice, and if you make the right choices, if you choose the “right” behaviors, presto! You’ll be healthy.

  This linguistic sleight of hand infuriates me, especially as I come to understand that we blew through our $1,800 “allowance” in the first month of Kitty’s treatment.

  Kitty’s visits to Dr. Beth are covered—with the usual copay, of course—because she’s a pediatrician, not a mental health provider. (Later I find out that Dr. Beth gets the same amount of money from the insurance company whether Kitty sees her once a year or every day, meaning that our weekly two-hour sessions are essentially freebies.) But everything else goes on the behavioral health balance sheet:

  Weekly visits to Dr. Newbie

  (whom the insurance company forced us to see): $220 each

  Visit to a nutritionist: $100

  The first therapist we tried: $150

  Weekly sessions with Ms. Susan: $135 apiece

  Apparently we’ve been on our own, financially speaking, since mid-August.

  On the other hand, Kitty’s five-day hospital admission, including two days in the ICU, was nearly all covered, all $12,000 of it. I suppose I should be grateful we don’t have to pay for that, too, but I’m pissed. Because I really don’t understand: Why is mental health care not covered the way physical health care is? We’re creatures of body and breath, blood and bone, not disconnected minds in jars. The brain is an organ, same as the liver or the heart. Your heart takes care of getting oxygen to your cells; your brain takes care of how you move, feel, and think. When it comes down to it, what’s the difference? Why does one bodily function deserve care while another doesn’t?

  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 t
he 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.

  { chapter eight }

  Watching Kitty

  I keep both eyes on my man. The basket hasn’t moved on me yet.

  —JULIUS ERVING

  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.