Brave Girl Eating (22 page)

 

Kitty's anxiety waxes and
wanes over the first week or two of the new year. She's much more relaxed before school starts, and we briefly consider homeschooling her for the rest of the year.

But homeschooling would be so isolating. Jamie thinks it's good for her to go to school and see people, and I have to agree. Though social interactions are fraught for Kitty right now, they're also, sometimes, energizing. Ms. Susan asks her one day to think back to an earlier time, a time in her life before anorexia, and remember what made her happy then.

“Other people,” Kitty says promptly, and it's true. It's always been true. Even as a toddler, when other kids her age would play next to each other, not connecting, Kitty wanted to interact.

Some social situations aren't so good for her, though. Like Ms. Susan's eating group. Lately, Kitty's been coming home from group upset; a few times she's balked at eating a snack or dinner afterward. The last straw is the night Kitty comes home from the group, refuses her bedtime snack, and cries for an hour: she's the fattest girl in the group, she's the only one who's doing it this way, why can't she be like everyone else. She says again that she wants to go to an inpatient program, it would be so much easier if we weren't involved with this; we make everything so much harder.

Kitty is the only teen in the group whose family is doing FBT; the other girls (and they are all girls) are struggling to eat on their own. I wonder how many of their families have been told that's the only way to do it. I wonder how many have been scared off by one of the main criticisms of family-based treatment—the idea that most families can't handle it, that you have to be a very special family to pull it off. I don't think so. Our family is as flawed and dysfunctional as the next. We make a lot of mistakes. We get mad, we get sad, we get frustrated. If we can help Kitty through anorexia, other families can do that for their children too.

“Sometimes parents are just too afraid to actually challenge and disrupt the behaviors at the level they need to, and to do so
consistently,” says James Lock, professor of child psychiatry and pediatrics and director of the eating-disorders program at Stanford University. “Sometimes the parents' relationships may interfere with their ability to work together to do this. Sometimes other mental illnesses like severe OCD or depression can interfere. Sometimes there are other needy children in the family, so it's difficult to focus on this issue. There may be people whose parenting style is such that they just can't do it. It wouldn't sit with their way of being a parent.”

I can see that last idea reflected in our own family. For me, some of the hardest moments this year have come while we watched Kitty's illness unfold. FBT appealed to me because it's all about
doing
something, which fits with my parenting style. James Lock believes most families have the capacity and the impetus to do FBT. “It's really not rocket science,” he says. “Families just have to accept that it's going to be hard. There's going to be a lot of push-back. They'll be on, 24/7, until the behavior is disrupted.”

He's right, of course. But I wonder what he or any other doctor imagines goes on at home in between therapy sessions. I wonder if they can have any idea of how hard it really is.

In any case, our path at the moment is clear. I call Ms. Susan and tell her that Kitty will be taking a break from the lunch group, though she'll keep doing individual sessions. Maybe she'll go back to the group at some point. Or maybe, by the time she can see clearly again, she won't need to.

Without the overt triggers of the group, Kitty's eating goes a bit more smoothly. But there's still drama to spare at our house. One day in mid-January, when Jamie has a job and I have to go to work and Emma goes to a friend's house, Kitty stays home alone for part of the afternoon. Her anxiety spikes, and she spends much of the
evening in tears, which prompts Emma to make a rare outburst. “I'm sick of you always crying!” she shouts at her sister. “All you do is cry!”

Kitty immediately goes into paroxysms of apology. She makes a halfhearted attempt to run away, fumbling with the front door until Jamie leads her gently upstairs. I feel furious at Emma because I know that it will take hours to calm Kitty down again. I make Emma apologize, which she does, sullenly, and then runs to her room and bangs the door shut.

I sit at the kitchen table, tears of self-pity stinging my eyes. So much of the time now I feel like a bad parent to one or both of my daughters. I'm more or less checked out at work, doing just what's necessary; I'm lucky my boss is understanding. I'm sick of shopping and planning meals and cooking. I'm sick of thinking about food all the time. I've become obsessive about food myself, always checking calorie counts, always calculating in my head: Is this enough? How can I get more calories into this? I'm sick of it all. If I never cooked another meal, I'd be quite happy.

The truth is, I'm wrung out. Used up. Exhausted. I don't know if I can hang on until Kitty's better. How long will it be? We're only five months into this—many families spend years fighting the demon. I don't know that I have it in me. I really don't.

I sit at the kitchen table, where we spend so much of our time now. I've run my finger over every nick and dent in its chrome rim, memorized the patterns of black and white dots on its Formica surface. I've scraped oatmeal and ice cream, fried onions, bits of lettuce—every kind of food imaginable—from the space where the two halves of the table don't quite meet. I sit there for an hour, until Jamie wordlessly turns out the kitchen light, helps me out of the chair, and guides me up the stairs to bed.

When this is all over, I'm putting this table out on the curb. Let some other family use it. We're getting a new one.

 

And it's only two
or three days later—can that be true?—that we have a really good day, a stellar day, the best we've had in eight months. Kitty comes to work with me, and we spend a peaceful morning sitting side by side, each of us engrossed in her own task. Eating her pumpkin chocolate chip muffin after lunch, she asks, “Did you do something different with the recipe this time? It tastes much better than usual.”

I want to leap onto my desk and do a little dance because Kitty isn't worrying about what's in the muffin; she's enjoying it. She likes it! It tastes good to her! She still insists that she never feels hungry, that she hasn't felt hunger since sometime last spring. But this must be a first step. Eating as a sensual experience. Eating as pleasure. Not only that: what's different about these muffins is that I made them with butter instead of oil—an entire stick of butter, a fact I judge it best not to share with Kitty right now, because that would trigger her guilt and anxiety over eating. She doesn't need to know.

Critics of FBT would disagree with me here. They'd say I'm being dishonest, that I'm lying to my daughter. That I'm sneaking butter into her food, violating her trust, destroying any chance of an authentic relationship with her.

But I'm not lying to her, or sneaking anything; I'm taking care of her nutritional needs as I see them, which is precisely what she needs from me and what I've promised her. Most people don't know what's in the food they eat. I don't give Kitty a list of ingredients for everything I make because (a) she doesn't need to know, and (b) it
would derail her eating, which in turn would (c) impede her recovery. Besides, it's Not-Kitty who freaks out at the thought of eating butter. And I don't owe Not-Kitty, or the demon, a thing.

Don't ask, don't tell.
And don't confuse what we're doing now for pathology, or for a permanent arrangement. Right now, my job is to know what Kitty needs and provide it; her job is to eat what I put in front of her. If she recovers—
when
she recovers—we'll renegotiate.

That night, when Emma asks for her favorite bedtime snack, Kitty says, “Can I have toast with jelly too? That sounds good.” She'd eaten enough earlier in the day, so I make toast with jelly for both of them, and they eat it together at the table, giggling and licking strawberry jam off their fingers.

Later, as I sit on the edge of Emma's bed to say goodnight, she says, “Kitty had a good day, didn't she? When I heard her say she wanted toast with jelly, it made me feel really good.” She closes her eyes, settles herself, then says sleepily, “I know tomorrow might not be a good day, but today was. That's still really good.”

As usual, Emma nails it. It's so easy to focus on the anguish and misery; it's harder, somehow, to acknowledge the positive, maybe for fear of jinxing it, bringing the nightmare back down on our heads. The nightmare will come back; we'll have plenty of opportunities for endurance. But today was a good day. Today was a
good
day.

“Yes,” I tell Emma. “Yes, that's still really good.”

If you'd asked me
twelve months ago to come up with five words to describe Kitty, here's what I would have said:

Graceful. Poised. Verbal. Smart. Independent.

The words I'd choose now, in April, ten months after her diagnosis:

Brave. Anxious. Smart. Honest. Scared.

So much has changed over the last year. And so much will change, I hope, over the next few months. Things aren't nearly as awful as they were last summer or early fall; Kitty has made
progress, physically and psychologically. So why do I feel upset? I mean, I know why I feel distress; this whole year has been distressing beyond anything I could have imagined. But why
now
? Why do I lie awake nights, my stomach churning, my thoughts grinding around and around the same obsessive track? I should be feeling better, now that we're seeing more and more good days.

I catch myself thinking this—I should feel better!—and hear the words I've repeated to Kitty many times over the last year:
There are no shoulds. There's only what is.
It astonishes me, as it always does, that thinking a thing does not make it true, that feelings are, by comparison, so slow, so awkward, so necessarily painful.

Now that Kitty's getting better, my thoughts are reaching forward, toward the possibility of real recovery, real life. But my feelings are still stranded in last year's quicksand of terror and anxiety. It makes a kind of evolutionary sense. When you're in the midst of crisis, the past and the future fall away, allowing you to focus only on the task before you: this meal, this evening, this doctor's visit. Adrenaline carries you from moment to moment, deferring the shock, keeping you moving, changing, doing. But as soon as the emergency abates, you have time to sit down and think, to worry and contemplate and obsess. To feel the moment of impact—whether it's cancer or anorexia, an accident or a crime—again and again, the slow waves of pain beating against the shore of your self.

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 shining, 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—Japanese—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 decora
tions 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 pronouncement 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, reassuring 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 reassure 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
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 relationships with parents and kids. The pediatrician is like the first-base coach, keeping up a steady stream of chatter and reassurance, 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
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 constitute 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 constitutes 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 Institute 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 institute 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.

She's no longer at the bottom of the rabbit hole, but rather climb
ing 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 scrapbooking. 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.