Brave Girl Eating_ A Family's Struggle With Anorexia Part 12

There are more good days, but still plenty of bad ones.

Best of all, we see glimmers of the old Kitty. In late February, she goes on what's more or less her first date, to the freshman formal at school. The boy is someone she met through a friend-not a serious boyfriend, but not Martin or Garth, either. I'd worried that shopping for the dress would be traumatic, as Kitty no longer fits into a size 00. Her body has changed; she's still thin, but she's got a shape now. On our shopping trip, she tries on a strapless dress that brings out the green flecks in her hazel eyes. "You look great!" I say, and instantly wish I'd kept my mouth shut. Kitty's illness has sensitized me to how many comments we all make about other people's appearance. In Kitty's case, even the most well-intentioned compliment can trigger an anorexic reaction.

Today, though, my slip goes unnoticed. Kitty, admiring herself in the dressing-room mirror, says only, "I think so too."

On the night of the dance, the boy slips a corsage onto her wrist, and though Kitty rolls her eyes and pretends to be annoyed, she poses for Jamie's photo, her eyes s.h.i.+ning, her smile full and real and dazzling. After they leave to walk up to the high school, Jamie and I look at each other in amazement: Kitty has had a Normal Adolescent Experience, and so have we, for the first time in months. Maybe ever, actually. Anorexia has robbed both her and us of the beginning of her adolescence. And while we can never get that time back, we can move forward. Kitty is growing up.

We celebrate Kitty's fifteenth birthday a day early, since Jamie will be out of town on the day itself. She picks the restaurant-j.a.panese-and we order takeout, so she can eat at home, followed by carrot cake from her favorite bakery. There's plenty of cake left over, and my plan is to serve her another piece for a snack the next day. But at breakfast that morning she says, "I have a favor to ask." birthday a day early, since Jamie will be out of town on the day itself. She picks the restaurant-j.a.panese-and we order takeout, so she can eat at home, followed by carrot cake from her favorite bakery. There's plenty of cake left over, and my plan is to serve her another piece for a snack the next day. But at breakfast that morning she says, "I have a favor to ask."

"Anything, birthday girl," I say.

"Can I please not eat cake on my birthday?"

She asks so plaintively that I say of course. But this "gift" makes me feel sad. I remember going to the bakery with Kitty when she was five, spending half an hour leafing through a catalog of decorations while she tried to decide whether she wanted a gymnast or a horse decorating her cake, how many icing flowers would fit on top and what colors they should be.

I wonder if she'll ever look forward to a piece of cake again.

A few weeks later, in early March, Kitty goes to Boston for a weekend with her Israeli dance troupe. Two months ago, a trip like this would have been unthinkable, because we wouldn't be there to watch each bite she put into her mouth. We talk ahead of time about how it will feel for her to eat on the trip and acknowledge that she probably won't eat quite as much as usual. We pack her lots of snacks and tell her we want to know how things go, whatever happens.

Despite my nervousness about the trip I feel more relaxed, that first night, than I've felt in months. So relaxed that Jamie and I fall asleep at ten and don't hear the phone ring-Kitty calling to say goodnight. The next morning she calls at eight. "The eating isn't going so well," she says tearfully. "I'm not having any fun." I talk to her for a while, trying to soothe her with my voice the way you'd gentle a spooked horse. We hang up and I call the group leader, who tells me not to worry; she sat next to Kitty this morning and watched her eat a nice bowl of fruit for breakfast.

Now I'm panicking. A bowl of fruit contains maybe a fifth of Kitty's usual breakfast calories. I remind myself that she's doing well, that she wanted to go on this trip, that it's only two days out of the hundreds we've been refeeding her. Two days, it turns out, filled with emotional phone calls from Kitty, whose anxiety climbs as her eating diminishes. She's relieved and exhausted when she gets home late Sunday night, and she goes right to bed. And I'm proud of her: she managed. Not ideally by any means; she's a long way from being able to take care of herself. But the fact that she wanted to go, and went, despite the difficulties, feels positive.

Ms. Susan thinks so anyway. "As I've told you many times, I think people with eating disorders should make their lives as stress-free as possible," she tells us at Kitty's next session. "On the other hand, there's a lot to be gained from learning to cope with stress and anxiety, from coming away from the experience of being bored and anxious and learning to manage those feelings."

Dr. Beth agrees. For months she's encouraged Kitty to spend time with friends, join a club, hang on to as much real life as possible. Now she tells me, "I think Kitty's going to be in that one-third who make a complete recovery and just go on with their lives."

She smiles as she says this. All year we've been drawing on Dr. Beth's steady encouragement. These words, coming from her, mean more than any dry p.r.o.nouncement or study. She doesn't know the future, of course; no one does. But she does know Kitty, and she knows us. And I know she wouldn't lie.

I've described the demon in great detail to Dr. Beth because I want her to understand what Kitty's going through. And she seems to, as much as anyone can: she's never been punitive or angry; she's maintained her empathy for Kitty, spent many hours talking with her, rea.s.suring her, cheering her up.

But I also want Dr. Beth to know what refeeding entails because I know she has other patients with anorexia; in fact, I've talked with other parents, at her request, explaining FBT and encouraging them to look into it. And when those families try FBT, I want Dr. Beth and other pediatricians to prepare them for what they might encounter along the way. I've heard stories about kids who bang their heads on the wall until they break their own noses and black their eyes. Who leap out of moving cars or jump from second-story windows. Who kick and pinch and bite their parents-behaviors so completely foreign to their ordinary personalities that their parents panic, understandably, lose faith in themselves, believe their children are too sick to stay home. Behaviors that come from the damage starvation wreaks on the body.

But if parents know what's within the realm of possibility, they can prepare themselves, mentally and physically, do a better job of keeping their children safe. That's where pediatricians come in: they can rea.s.sure families who go through this that, yes, these behaviors are part of the recovery process, they will go away; your child's not crazy in any permanent or overarching way.

Pediatricians are nearly always the first doctors to mention the word anorexia anorexia to a family. They're the ones who describe the disease, who sketch out treatment, who refer families to shrinks and therapists and nutritionists. I don't understand why insurance companies insist that only psychiatrists can diagnose and treat eating disorders; pediatricians are the ones who have relations.h.i.+ps with parents and kids. The pediatrician is like the first-base coach, keeping up a steady stream of chatter and rea.s.surance, whereas a shrink is like the designated hitter, brought in late in the game to knock a home run over the fence. to a family. They're the ones who describe the disease, who sketch out treatment, who refer families to shrinks and therapists and nutritionists. I don't understand why insurance companies insist that only psychiatrists can diagnose and treat eating disorders; pediatricians are the ones who have relations.h.i.+ps with parents and kids. The pediatrician is like the first-base coach, keeping up a steady stream of chatter and rea.s.surance, whereas a shrink is like the designated hitter, brought in late in the game to knock a home run over the fence.

I know who I'm going to trust.

Pediatricians are best positioned to help a family. The trouble is, they get little to no training in how to treat eating disorders. Unless they're unusually motivated and responsive, like Dr. Beth, they know only what they were taught in medical school, which often consists of Hilde Bruch and not much else. When a child is as sick as Kitty was last summer, pediatricians usually recommend sending her away for residential treatment at a for-profit chain like Remuda Ranch or Renfrew, or to an eating-disorders center like Sheppard Pratt in Baltimore.

Places like Renfrew and Remuda boast sky-high recovery rates-but those are short-term rates, often measured on the day they leave. Kids usually do do gain weight at residential centers, but they rarely gain enough; typically they're sent home when they reach 90 percent of "ideal body weight." Which is about where Kitty is now. So I know that 90 percent of ideal body weight does not const.i.tute recovery. It's an improvement; it's medically stable. But it's too low to promote true psychological healing. The demon is still very much in the picture at 90 percent. When teens leave residential care, they nearly always lose weight. Unless there's someone at home who's willing to take on the task of making sure they eat and keep gaining weight, they backslide very quickly, losing ten or twenty hard-won pounds in a couple of weeks. "Recovery" over; back to anorexia as usual. gain weight at residential centers, but they rarely gain enough; typically they're sent home when they reach 90 percent of "ideal body weight." Which is about where Kitty is now. So I know that 90 percent of ideal body weight does not const.i.tute recovery. It's an improvement; it's medically stable. But it's too low to promote true psychological healing. The demon is still very much in the picture at 90 percent. When teens leave residential care, they nearly always lose weight. Unless there's someone at home who's willing to take on the task of making sure they eat and keep gaining weight, they backslide very quickly, losing ten or twenty hard-won pounds in a couple of weeks. "Recovery" over; back to anorexia as usual.

Which is not to say that residential care is never helpful; sometimes it can literally save a child's life. But it's usually a stopgap, a kick start to recovery, rather than recovery itself. Real recovery takes months, maybe years. It takes the regular application of food, lots of food, to break the self-reinforcing cycle of restricting, to alter the neurobiology that perpetuates the disease, to retrain the brain.

There hasn't been a lot of research on anorexia, but what little there is clearly shows that for kids eighteen and under, FBT nearly always const.i.tutes the best shot at recovery. The trouble is, there are very few FBT therapists in the United States today. Which is why families in our small city often drive three hours each way for treatment in Chicago. Or do what we've done-put together a treatment team that's open to FBT but not particularly knowledgeable about it.

And that's also why, in 2008, James Lock and Daniel le Grange created the Training Inst.i.tute for Child and Adolescent Eating Disorders and began offering workshops and supervision for therapists who want to become certified in FBT. It's the only way to make sure that therapists who say they offer FBT are actually doing it correctly. Le Grange has seen too many variations on the theme, including a therapist who, at a conference, encouraged parents to physically restrain young patients and force-feed them-a practice that's diametrically opposed to both the spirit and the letter of FBT. Her words appalled him so much that this dapper, soft-spoken man stood up and publicly corrected her. At least people like that can't say they practice FBT anymore.

As I write, the inst.i.tute has certified nineteen FBT therapists; many more are going through the several-years-long process. Five years from now, there should be more FBT therapists around the world. Still not enough, unfortunately. But a start.

In early April we raise Kitty's calories to four thousand a day, and she gains another four pounds. She's also grown another inch, so she's still below her goal weight. But she weighs twenty pounds more than she's ever weighed in her life. She gets her first period. In the second half of April, her weight seesaws-up two pounds, down two-even as she grows another inch. This drawn-out process feels torturous. I wish we could speed things up, but I'm not sure Kitty can physically eat any more. I wonder if I'm going to spend the rest of my life thinking up ways to get more calories into her. raise Kitty's calories to four thousand a day, and she gains another four pounds. She's also grown another inch, so she's still below her goal weight. But she weighs twenty pounds more than she's ever weighed in her life. She gets her first period. In the second half of April, her weight seesaws-up two pounds, down two-even as she grows another inch. This drawn-out process feels torturous. I wish we could speed things up, but I'm not sure Kitty can physically eat any more. I wonder if I'm going to spend the rest of my life thinking up ways to get more calories into her.

She's no longer at the bottom of the rabbit hole, but rather climbing her way laboriously up through the darkness. I want to reach down and pull her to the surface quickly, cleanly, in one motion. That's always been my instinct with my daughters-to spare them as much of the world's pain as possible. Of course I know I can't do that, most of the time-and that, in fact, I shouldn't. Without pain, they won't grow and change and become who they truly are. Kitty's life is her own and has been from the moment she was born. I respect that. I get it. I know she has to go through recovery at her own pace. It's just hard to watch her suffer.

Meanwhile, Kitty's made a couple of new friends this spring, girlfriends she goes shopping with. Girls who have nothing to do with the world of eating disorders. She's taken up sc.r.a.pbooking. She's been kinder to Emma, too, typing up an essay for her one night, helping her adjust the water in the shower another. Little things, but they mean a lot to Emma.

The outbursts, when they come, are often triggered by subjects other than food these days-usually school. Kitty's taking a full load this semester, with one study hall before lunch so she can come home and eat. It's a stretch. One night she falls apart while studying after dinner, saying she can't do her homework, she can't concentrate, she's falling behind and can't keep up. She wrings her hands, says her chest feels tight with anxiety, rocks back and forth in her desk chair, and nothing I say can comfort her. So I sit with her for an hour, until she's calmed down enough to go back to studying. A month ago, an outburst like this would have lasted the rest of the night. Progress? I think so.

Another night, faced with a doughnut for her evening snack, Kitty begs for something different-a yogurt, toast, anything. I stand in the playroom, wondering what to do. Should I insist on the doughnut? If I don't, am I pandering to the anorexia? If I give in to her fear, does that set her back? How much of her preference is "normal"-whatever that means, at this point-and how much is eating disordered?

The answer to that last question comes quickly, as the demon's twisted words begin spilling from my daughter's mouth. "You're trying to make me fat!" she says. "This is disgusting. I feel greasy just looking at it. I can't eat this, it makes me feel sick."

On and on she goes. I stay calm, as I've learned to do, until she looks up and says, with real fear in her voice, "I'm afraid I'm going to be built like you!"

I stand there, the plate in my hand, my heart hammering in my throat. I'm glad in a way she's said it, because I've felt her thinking it for months now. I've seen it in the way her eyes sweep down my body and then her own, the pucker of anxiety that appears between her brows. Shame steams through me, hot and bitter, scouring away every other thought and feeling, leaving me immobilized in the face of my daughter's judgment. It's good that she's expressing her feelings, It's good that she's expressing her feelings, I tell myself mechanically. I take away the doughnut and bring out a plate of cookies, and Kitty eats, not meeting my eyes, then goes silently to bed. I tell myself mechanically. I take away the doughnut and bring out a plate of cookies, and Kitty eats, not meeting my eyes, then goes silently to bed.

That night in bed, I wonder if all daughters think that at some point. I don't want to look like you. I don't want to look like you. Girls rebel against their mothers; it's part of how we figure out who we are. We push away from the flesh and blood that carried and bore us so we can move toward our own future, ourselves and not just another version of our mothers. We reject our mothers, body and spirit and soul, so we can find ourselves. I know all this, I really do, but still Kitty's words rise up in the s.p.a.ce between us. And they hurt. Girls rebel against their mothers; it's part of how we figure out who we are. We push away from the flesh and blood that carried and bore us so we can move toward our own future, ourselves and not just another version of our mothers. We reject our mothers, body and spirit and soul, so we can find ourselves. I know all this, I really do, but still Kitty's words rise up in the s.p.a.ce between us. And they hurt.

At Dr. Beth's the next day, Kitty's weight is the same as it's been for four weeks, next day, Kitty's weight is the same as it's been for four weeks, and and she's grown a bit. Four weeks of four thousand calories a day and she hasn't gained an ounce. In fact, if you consider the height change, she's lost weight. And she's still eight or ten pounds shy of her current target. she's grown a bit. Four weeks of four thousand calories a day and she hasn't gained an ounce. In fact, if you consider the height change, she's lost weight. And she's still eight or ten pounds shy of her current target.

How is it possible that Kitty can eat that much food and not be gaining weight? Except for trying to make herself throw up back at the beginning (and, luckily, not succeeding), Kitty hasn't done any purging; I know, because we've stayed with her in the critical hour after every meal and snack. It's not unusual for someone with anorexia or bulimia to throw up, use laxatives, or overexercise compulsively to get rid of the calories consumed. Last summer Kitty did hundreds of sit-ups in her room each night; that was purging. Since then we've kept a pretty close eye on her bathroom and exercise habits. But maybe we're missing something. Dr. Beth suggests another possibility: maybe Kitty's energy is going toward growing taller at the moment rather than gaining weight. Or maybe all of these are true to some extent.

I think, for the thousandth time, about what a mystery anorexia is. How many times have I heard the expression "Calories in, calories out"? It's usually offered in the context of dieting-that is, if you want to lose weight, eat fewer calories or burn more. But this, it turns out, is a gross oversimplification, and not necessarily true. Gina Kolata, a science reporter for the New York Times, New York Times, explored some of the paradoxes of human metabolism in her 2007 book, explored some of the paradoxes of human metabolism in her 2007 book, Rethinking Thin Rethinking Thin. She wrote about a study done by Ethan Sims of the University of Vermont, who turned Ancel Keys's Minnesota Experiment on its head: Sims made volunteers fat in order to understand the physiological changes involved in gaining weight and keeping it on.

Sims expected to find a variation on the "calories in, calories out" theme; he confidently hypothesized that by letting his volunteers eat as much as they wanted, he could quickly and easily make them fat. And they couldn't cheat and jog off the calories because they were prisoners in the Vermont penal system whose actions were closely monitored.

Sims did make his volunteers fat, but it was a lot harder than he expected. The process took four to six months and required feeding some of the men a staggering ten thousand calories a day. When Sims did the math he discovered that each man gained weight at a different rate, despite the fact that they were eating the same number of calories. Not only that: the men who had been thin before the study began needed almost twice as many calories to maintain their higher weights as they had to sustain their ordinary lower weights.

Sims's experiment highlights the fact that each person's metabolism has a kind of set point, a natural range. Trying to alter that range-making a thin person fatter, or a fat person thin-takes nearly superhuman effort and blows the calories in, calories out theory right out of the water.

Maybe one of the effects of anorexia is to reset a person's metabolism to an unnaturally low range. Which might explain why it's so hard for Kitty to gain weight, despite eating large numbers of calories. And why even a very minor dip in calories seems to make her fragile and volatile.

The next morning, as she gets ready to leave for school, I ask if she has her midmorning snack with her. "I always pack it," she says. I tell her I want to see it. I'm not in the habit, these days, of checking up on her. But my intuition is rarely wrong. And it's not wrong this time: Kitty says she forgot to pack it, just this once. She pops a protein bar in her bag and runs out the door. But will she eat it?

I want to lie down and weep with weariness. Our friends have been commenting on how good Kitty looks, how much happier she seems. "She's doing so well!" they say, and I want to say yes, but she still wrestles with the anorexia every single day. Yes, but if we let up for a few days, she'd go right back down the rabbit hole. Yes, but she's not safe yet. Nowhere near it. Before, the illness was visible on her face, in her body. Now only Jamie and Emma and Kitty and I know the real distance between how she looks and how she feels. "You must be feeling so much better!" they say. I muster a smile and say as little as possible, because I have neither the energy nor the heart to tell them the truth.

If you fall ill with pneumonia, the treatment is fairly straightforward: a course of antibiotics. And so are the signs of recovery. You're recovered from pneumonia when you feel better, when there's no fluid in your lungs, when your blood count returns to normal. Three simple measures. with pneumonia, the treatment is fairly straightforward: a course of antibiotics. And so are the signs of recovery. You're recovered from pneumonia when you feel better, when there's no fluid in your lungs, when your blood count returns to normal. Three simple measures.

But when are you recovered from anorexia? I mean really really recovered, not the 90 percent of ideal body weight that insurance companies and many doctors hold up as a goal. Some doctors talk about weight restoration as a mark of recovery-getting a child back to the weight she was before she started restricting. The trouble is, teenagers are still growing. They're supposed to put on weight even after they stop growing vertically. So the healthy weight for an eighteen-year-old is unlikely to be the same as it was for that same child four years earlier. recovered, not the 90 percent of ideal body weight that insurance companies and many doctors hold up as a goal. Some doctors talk about weight restoration as a mark of recovery-getting a child back to the weight she was before she started restricting. The trouble is, teenagers are still growing. They're supposed to put on weight even after they stop growing vertically. So the healthy weight for an eighteen-year-old is unlikely to be the same as it was for that same child four years earlier.

The whole question of target weight is complex and much debated. Experts in the field often refer to body ma.s.s index, BMI, as a measure of restored health. But BMI is a crude measure, a simple ratio between height and weight. It says nothing about a person's body type. Athletes score high on the BMI chart because muscle weighs more than fat and tissue; you can be "normal" on the BMI chart and still lack enough fat and ma.s.s. Kitty, for example, now has a BMI of 18.8, which puts her-barely-into the "normal" category for her age on the BMI chart. By this one standard, she'd be considered recovered. But it's clear to both Jamie and me that she's not.

Dr. Beth says the best way to gauge a child's weight is to plot her height and weight since birth, find her natural growth curve, and aim to get her back on it. It's sensible advice, especially compared with the gobbledygook of BMI charts and percentiles of ideal body weight. It's not always enough, though. Kitty at thirteen was still on her growth curve. She didn't fall off it until she lost five pounds, last April or May. And Kitty now, having gained twenty-five pounds, weighs far more than she ever did, and still has five or six pounds to go. For her it's less a question of weight restoration than it is a question of weight correction.

Carolyn Hodges, a nutritionist and director of the Sol Stone Center in Elmira, New York, suggests that each person has a kind of magic number, a weight that signals true recovery for her. "Below that body weight, the thought process is very obsessive," she explains. "I've seen this in several patients. Above that weight, they are much less obsessive; one to two pounds below, they will be very obsessive."

We've noticed this with Kitty. And it's not all about weight gain, especially for teenagers. There have been times over the last nine months when the number on the scale has stayed the same but Kitty's grown taller, putting her further from her target weight. Every time, her mood has deteriorated and she's seemed sicker again.

Another measure of recovery often suggested for women is menstruation. When body fat drops below a certain level, menstrual cycles stop. The problem is, this happens at a different point in the process for everyone. One teen may lose her period at 90 percent of her goal weight, while another may continue to have it even at 75 percent. Some women with anorexia never stop menstruating.

Maybe I'm deluding myself, but I have a sense that I'll know when Kitty is really well again. I probably am am deluding myself, because even the experts don't seem to have a good grip on who is and isn't recovered. This has ramifications not only for the patients themselves but for the ongoing research, much of which compares people who are actively ill with recovered anorexics. Often, the criterion for recovery is "being weight restored for a year." But it all depends on what you mean by weight restored, doesn't it? Who's measuring, at what age, and how much growth has taken place? Pediatricians and doctors seem inclined to lowball weight. They're often all too willing to settle for keeping a kid on the edge of normal; I suspect this is because everyone's so obsessed with obesity in children these days. Doctors, especially, have internalized the notion of "thinner is better." Whereas I think for a child like Kitty, having an "extra" five pounds is insurance against relapse. deluding myself, because even the experts don't seem to have a good grip on who is and isn't recovered. This has ramifications not only for the patients themselves but for the ongoing research, much of which compares people who are actively ill with recovered anorexics. Often, the criterion for recovery is "being weight restored for a year." But it all depends on what you mean by weight restored, doesn't it? Who's measuring, at what age, and how much growth has taken place? Pediatricians and doctors seem inclined to lowball weight. They're often all too willing to settle for keeping a kid on the edge of normal; I suspect this is because everyone's so obsessed with obesity in children these days. Doctors, especially, have internalized the notion of "thinner is better." Whereas I think for a child like Kitty, having an "extra" five pounds is insurance against relapse.

Physically she looks healthy and strong, if still on the thin side. She's developed more of a womanly shape. Her hair, which fell out in clumps all last summer and fall, is now s.h.i.+ny and long. Her eyes sparkle, her face is nicely full; she's alive again.

She still says she feels no physical hunger; she says she can't remember the last time she felt hungry. It's been well over a year. Does she truly feel no hunger, or does she just not connect the physical feelings with the idea of appet.i.te? I think of people with brain injuries, who, if given a math problem, say they don't know how to solve it even as their hand writes the correct answer; they've suffered some crucial disconnect between speech and motor movements. I wonder if it's that way for Kitty, if malnutrition has broken the connections between body and mind, and, if so, if they will ever be healed. I wonder if Kitty will ever feel hunger again, ever feel comfortable with her own appet.i.te, or if eating will forever remain a necessary but unpleasant ch.o.r.e.

Emotionally she's still volatile, still p.r.o.ne to anxiety attacks about everything from homework to friends to how she looks. But she smiles more these days; she laughs. After months of ignoring the three-year-old across the street, Joe, she now makes a fuss when she sees him. One day in early May she tells me she feels happy some of the time now-a huge improvement over ten months ago.

She's come along in other ways as well. She sees Ms. Susan by herself, and she seems a little more open, more willing to talk about the eating disorder. One day she says she's trying to keep the eating disorder in check by not "talking e.d." Two months ago, she didn't have the self-awareness to make a comment like that.

By mid-May she's eating her afternoon snack alone in her room every day, at her request. Once a day, at least, she seems able to marshal her inner resources and overcome the inner compulsion not to eat. I'm pretty sure she's actually eating it because in the last month she's gained another four pounds, which puts her close to her goal weight.

And I think that compulsion to not eat is growing weaker. She hasn't talked as much about needing us to watch her, though she still asks me to measure out her portions at breakfast and dinner. One morning I ask whether she'd like cereal or granola for breakfast. "Granola," she says, and then, with real anguish, "Oh, no, I could have had cereal and it would have been fewer calories!"

"Not true," I say at once. "I would have served you more cereal so you got exactly the same number of calories."

So the anorexic thoughts are still with her. But they are-dare I say it?-beginning to lose their power.

On Mother's Day, we do not go for a family bike ride, as we did so disastrously last year. We stay in, because it's raining, and Kitty and Emma put on a treasure hunt for me, complete with clues hidden all through the house and coupons for foot ma.s.sages and breakfast in bed. We laugh. We play Scrabble. We spend hours reading together in the living room. We eat j.a.panese takeout for dinner and ice cream for dessert. do not go for a family bike ride, as we did so disastrously last year. We stay in, because it's raining, and Kitty and Emma put on a treasure hunt for me, complete with clues hidden all through the house and coupons for foot ma.s.sages and breakfast in bed. We laugh. We play Scrabble. We spend hours reading together in the living room. We eat j.a.panese takeout for dinner and ice cream for dessert.

We do not say the word anorexia anorexia all day. all day.

More ups and downs follow in the next few weeks, as they have all year. Kitty comes home from school one day and reports that a girl in her Latin cla.s.s brought in a cake shaped like the Parthenon, and that she ate a piece. She actually ate a piece of cake that we did not serve her or insist she eat. That we didn't even know she was eating.

"Are you proud of me?" she asks.

I grab her hand and squeeze it, feeling how solid and warm and strong it is, feeling the tingle of electricity that pa.s.ses between one human being and another. To anyone else, this would be a non-event. But she knows, and I know, that the paradigm is s.h.i.+fting. The demon is in retreat.

It hasn't disappeared entirely. There are still days when Kitty balks at eating, when she castigates herself and, once, lies to me about drinking an Ensure. She has panic attacks, which she never had before. Her relations.h.i.+p with food is still fraught, though it's better. So much better.

I don't believe in fairy tales, but still, I want a happy ending. I want the child I knew before. Before starvation and longing, before guilt and terror. Before these interminable months of heartbreak and misery and woe.

One night I dream that I'm in a big Victorian house, searching for Kitty. I run up and down steep flights of stairs and finally find her taking a dance cla.s.s on the second floor. From outside the room I signal her frantically-Come here, get out of the cla.s.s-but she ignores me. I vault a railing, grab her, and yank her angrily out of the room. I'm furious in the dream, and getting angrier by the second.

"What did you eat for dinner last night?" I bark. Not-Kitty smiles, a nasty, insincere smile, and says nothing. I shake her by the shoulder. "You didn't eat dinner last night, did you?" I shout. "What did you have for breakfast?"

Not-Kitty leers at me. "A teaspoon of air," she says prettily. I wake with my heart pounding, my arms trembling as if I really was shaking her.

I want a happy ending, but life isn't that clear-cut. It's only when we look back over a period of time that we see-or think we see-an orderly shape emerging from the chaos of everyday living. Except for death, the only endings we get are the ones we impose on ourselves and the world.

So maybe it's enough for me to say that Kitty could have died but didn't. That all year she's been unspeakably brave; she has done the most terrifying thing imaginable to her, over and over and over. That if there's no happy ending, there's no unhappy one either.

And then one morning in June-just about a year after Kitty's diagnosis-I answer the phone at work and hear her voice sing out, "I'm hungry!" I'm speechless. But I don't need to say anything, because Kitty's so excited. She knows what this means as well as I do. She says she can't wait for me to come home for lunch-can she drink a can of Ensure now? I tell her of course, I'll come home early. I'll bake cupcakes in her honor. I tell her, in June-just about a year after Kitty's diagnosis-I answer the phone at work and hear her voice sing out, "I'm hungry!" I'm speechless. But I don't need to say anything, because Kitty's so excited. She knows what this means as well as I do. She says she can't wait for me to come home for lunch-can she drink a can of Ensure now? I tell her of course, I'll come home early. I'll bake cupcakes in her honor. I tell her, I'm so happy for you I'm so happy for you. What I want to tell her: Thank you for telling me. Thank you for sharing this moment with me, after all we've been through. Thank you for not hating me, for still trusting me. Thank you for telling me. Thank you for sharing this moment with me, after all we've been through. Thank you for not hating me, for still trusting me.

Now I could weep with grat.i.tude. But I don't. I turn off my computer, grab my car keys, head for home. For now, this is as close as we're getting to a happy ending. I could weep with grat.i.tude. But I don't. I turn off my computer, grab my car keys, head for home. For now, this is as close as we're getting to a happy ending.

{ epilogue epilogue } } Relapse, Recovery, Renewal Fall seven times, stand up eight.

-j.a.pANESE PROVERB As I wrote this book, I became conscious of how many times I mentioned Mother's Day-how much a part of this story Mother's Day has been. It happened to be Mother's Day when our family took the bike ride that alerted us to trouble, when Kitty shared her anxieties for the first time. Mother's Day was the beginning and so became a landmark, a measure of time gone by and progress made, or not made. book, I became conscious of how many times I mentioned Mother's Day-how much a part of this story Mother's Day has been. It happened to be Mother's Day when our family took the bike ride that alerted us to trouble, when Kitty shared her anxieties for the first time. Mother's Day was the beginning and so became a landmark, a measure of time gone by and progress made, or not made.

It's fitting in a book like this, about a family's struggle with a child's mental illness. So many narratives on this subject wind up focusing on mothers, and not in a positive way. Every serious illness that affects a child affects his or her whole family, whether the illness is cancer or AIDS, cystic fibrosis or depression or an eating disorder. Every family that goes through such an illness is changed by it. Every family that comes through that fire presents a different face to the world and to one another.

We live at a time and in a culture that seems obsessed with establis.h.i.+ng cause and effect, and in some ways that's good, feeding the spirit of inquiry that fuels scientific progress. If Alexander Fleming hadn't become curious about what made a dish full of Staphylococcus Staphylococcus turn blue and why the bacteria beside it were disappearing, we wouldn't have penicillin. But sometimes our urge to know, to a.s.sign blame and responsibility, backfires. Families aren't petri dishes, and the millions of events and interactions that make up a family's collective life are not easy to categorize. Bad things happen in families, certainly; so do good things. So do many things that are neither bad nor good but just are. turn blue and why the bacteria beside it were disappearing, we wouldn't have penicillin. But sometimes our urge to know, to a.s.sign blame and responsibility, backfires. Families aren't petri dishes, and the millions of events and interactions that make up a family's collective life are not easy to categorize. Bad things happen in families, certainly; so do good things. So do many things that are neither bad nor good but just are.

Nearly every family whose child must deal with a mental illness knows the experience of being dissected and a.n.a.lyzed, taken apart with an eye toward judgment and blame. The thing is, the experience of being judged also changes a family. It makes parents feel defensive. It makes parents behave in ways they might not ordinarily. Blame and judgment change the dynamic nearly as much, sometimes, as the original illness.

When anorexia chose Kitty, it also chose me, and Jamie, and Emma. It chose our family; it called into question many of our deeply held beliefs and traditions. It challenged our a.s.sumptions, our way of being with one another. When it built walls between us, we put in doorways. When it let grief into our house, we opened every window and shooed it out. When it called us names-jailer, torturer, liar torturer, liar-we answered mother, father, sister mother, father, sister. Kitty was the one diagnosed with anorexia. But it happened to all of us.

After that terrible year of refeeding, things got better-for Kitty and for the rest of us. She took up her life again. She spent time with friends, acquired and then de-acquired a boyfriend, found a new sport. She seemed happy some of the time, and when she wasn't, her sadness or anger or angst seemed like normal teenage emotions to Jamie and me. of refeeding, things got better-for Kitty and for the rest of us. She took up her life again. She spent time with friends, acquired and then de-acquired a boyfriend, found a new sport. She seemed happy some of the time, and when she wasn't, her sadness or anger or angst seemed like normal teenage emotions to Jamie and me.

It took us longer to recover. For months I burst into tears for no reason. I flinched at any mention of eating disorders. My panic attacks, which had been under control for years, started up again.

One night I dreamed that Kitty was sitting next to me on our living room couch. One of her arms had turned into a kind of flipper grafted onto her shoulder, with three fingers attached to it. Her other arm was crooked at an odd angle, fingers dangling uselessly, just the thumb c.o.c.ked and moving. In the dream a disembodied voice said, "Isn't it great-they were able to save part of both hands!" My screaming woke Jamie, who put his arms around me and said maybe the dream represented my anxiety that Kitty was not fully recovered, that something was still wrong. True enough. But far worse than the damage to Kitty's arms and hands was the voice telling me I should feel grateful, even happy, about something I could view only with horror.

I will never be grateful for anorexia or its legacy.

At times the shadow of the demon did seem to pa.s.s over Kitty again. That December, for instance, when she'd been at a healthy weight for six months, we took a ski trip to the Porcupine Mountains, on the edge of Lake Superior in Michigan's Upper Peninsula. It's gorgeous country and very isolated; the only place to eat was our hotel, which served mediocre food, and the rustic ski lodge, which served snacks.