Brave Girl Eating (20 page)

Like every parent, I want to save my children from pain and suffering, especially the pain and suffering I've experienced. So when Kitty announced she would eat no more desserts, I thought
Good for her
instead of
What's going on?

I go back to Ancel Keys's Minnesota Experiment, this time focusing on what happened to the volunteers toward the end of the study, after twelve weeks of refeeding—about where we are now with Kitty. The volunteers still struggled with stomach pains and constipation, exhaustion and swelling. They ate vast quantities of food—five or six thousand calories a day—but most continued to feel tired and weak. “We were rather surprised,” wrote Keys, “at
the slow rate of overall recovery, including recovery in the psychological aspects.”
^*

Researchers interviewed the men one more time, eight months after they'd started refeeding. Most had gained back all the weight lost and were more or less back to normal. Keys commented that both psychological and physical recovery from starvation “required many months of unlimited good diet.”
^†

I feel a little better knowing that the volunteers recovered—eventually. That the punishment starvation inflicts on a human being, body and mind, can be overcome in time. More time than I'd like, maybe, but it can happen. It will happen.

Meanwhile, because of Kitty's continuing stomach pain, Dr. Beth schedules her for an endoscopy and a colonoscopy, to make sure there's no underlying disease. The worst part about the test is that Kitty has to fast for about thirty hours. Dr. Beth agrees that the fasting is unfortunate, but says we have to make sure there's nothing else going on. “I had a nineteen-year-old patient with stomach pain once who turned out to have colon cancer,” she tells me. “Not that I think Kitty has cancer. But we need to rule it out.”

The tests are scheduled for a Monday, so Kitty doesn't have to fast on a schoolday. Not that she would mind. She says she likes the way fasting makes her feel: clean and light and virtuous. She says she hasn't felt hungry in many months, since long before the diagnosis. As Sunday wears on, her mood improves; mine deteriorates. After everything we've been through, I can hardly bear to watch her not eat. It feels wrong on every level.

The next morning, the nurses let me hold her hand as they insert
the IV and start the anesthesia. “You know,” she murmurs sleepily, “it's going to be hard for me to say I'm hungry when we get home.”

I hear what she's saying under the words:
I will be hungry. I am hungry. Please feed me. Please take care of me.

I smile. “No problem,” I say. By the time they wheel her out of the waiting room, she's asleep. And thankfully, the tests show no cancer, no Crohn's disease. Nothing to worry about. I never thought I'd be grateful that my daughter “only” has anorexia.

When we get home I make Kitty a coffee milk shake, put on a Harry Potter movie, and sit beside her on the couch as she drinks. At her weigh-in later that week, she's down a pound—not surprising, given the long fast, but still upsetting. Her progress has been meandering—up two pounds, down one, stay the same for two weeks, up a quarter. It's taken three months for her to gain fourteen pounds, but five of those came in the first three weeks. So she's basically gained three pounds a month. At our appointment later that week, Dr. Beth says she'd rather have Kitty gain the weight slowly; she says we shouldn't worry, things are moving in the right direction. We have to be patient but steady, keep doing what we're doing.

“Well, I hate what you're doing,” Kitty interrupts her. She folds her arms. “I don't
want
to gain weight,” she says.

I glance at Dr. Beth, who after all spends most of her professional life dealing with adolescents. Her face is watchful, nothing more. “I know,” she says to Kitty, then turns to me and asks, “Any questions?”

I do have questions, actually, but I already know they have no answers. How do we tell the difference between anorexia and, say, ordinary teenage behaviors? The full-fledged demon is unmis
takable. But what about moments like these, which we see with increasing regularity? Maybe they're like the rumblings of a dormant volcano that's about to erupt again. Or maybe they represent emotional progress. I've noticed how anorexia and the refeeding process sent Kitty back to infancy in many ways. As she recovers, she seems to be moving forward, recapitulating the developmental stages of childhood. Right now it feels like she's hit age two.

I remember Kitty in the hospital, too weak to sit up, let alone resist, and take this stubborn crankiness as a good sign. Maybe we can teach Kitty to stick up for herself, stop worrying about pleasing others and figure out what makes her happy. Maybe, in an odd way, anorexia's giving us all a second chance. And what parent hasn't wished for a do-over somewhere along the line?

 

Over the next few
weeks, Kitty's weight gain stalls, and her mood continues to deteriorate. Dr. Beth suggests cutting out dairy to see if that helps with the stomachaches. The trouble is, it's awfully hard to get in enough calories without the daily milk shake, the lasagna, the macaroni and cheese. And it feels like the very act of restricting anything—even for medical reasons—reinforces the anorexia.

I realize how much ground Kitty's lost one afternoon in mid-November, when she appears in the kitchen to ask what she's having for her bedtime snack, six hours from now. “Why do I need to eat anything for snack?” wheedles Not-Kitty. “I ate so much today already. I feel really fat. I think I'll skip dinner and snack tonight.”

Standing at the sink, wrist-deep in soapy water, I say nothing. That's the best way to deal with the demon.

“I won't eat,” persists Not-Kitty. “You can't make me.”

No, I can't,
I think. I can't physically put food in her mouth, make her chew and swallow. I wouldn't do that even if I could.

“No school until you eat,” I say, not turning around.

“I don't care,” says Not-Kitty. This shocks me as much as anything. Part of her goal of going to Columbia and then to law school has been not missing any school—and, of course, excelling at it.

It would be best to say nothing. Best not to argue with the demon. But I open my mouth and out come words I haven't planned on saying: “You'll never get to be a lawyer if you die from anorexia.”

I think this is the first time I've mentioned the idea of dying from anorexia to Kitty. No, I know it's the first time, because I've been careful to stay positive and hopeful.
She's
said the word a few times, as in “I'm going to die if I have to eat one more bite!” And of course there was the night she said at the dinner table that she wanted to go to sleep and never wake up. But this feels different. Something about the juxtaposition of the illness with Kitty's hopes for the future strikes home, for her as well as for me.

For the rest of the day, Kitty eats. Quietly. Unhappily. More slowly than usual. But she eats, afternoon snack, dinner, and bedtime snack. And no more is said, for the moment, about not going to school.

The next afternoon is, if anything, worse. The demon takes over at the lunch table and the rest of the day is a disaster. Trying to figure out why, I sit down and calculate calories—something I've stopped doing, thinking we had the hang of it. I write down as much as I can remember of her recent meals, ingredients and quantities, and realize, in horror, that for the last week, she's been taking in fewer calories than I thought—more like twenty-five hundred a day than three thousand. I can't believe we let this happen. No
wonder she's been antsy and anxious; twenty-five hundred calories is nowhere near enough for her right now.

Then another thought strikes me: I wonder if she's grown? Or is growing? At her next weigh-in I ask the nurse to measure her, and sure enough, Kitty's nearly an inch taller. Now the whole picture begins to make sense: just as Kitty's body began to need more calories, for growing, we inadvertently cut back. Those two processes, plus the physiological and psychological effects of restricting, combined to strengthen the demon within her.

Ms. Susan agrees. She says restricting—even the tiniest amount—quickly takes on a life of its own for someone with anorexia. Starvation over a period of time creates actual neural pathways in the brain. And now even the most minor echo of starvation—a slight reduction in calories, nowhere near the danger zone—reactivates those pathways, brings back the emotions and obsessions of true starvation. The reason lies in the brain's malleability—what researchers are beginning to refer to as its neuroplasticity. Psychiatrist Norman Doidge, author of the book
The Brain That Changes Itself,
compares the brain to a snow-covered sledding hill. Because snow is soft and easily shaped, the first time you sled down the hill, your sled carves a path. Each time you go down after that, your sled tends to run along the same path, digging it deeper and making it harder to steer your sled elsewhere. It's the softness of the snow, ironically, that creates a rigid, well-defined pathway. Doidge argues that it's the same with the brain: the brain's very flexibility, its ability to create new neural pathways, also makes those pathways hard to break away from. Each time Kitty restricts, no matter how slightly, it's as if she's sledding down that hill again, wearing the old groove ever deeper in the snow.

Neuroplasticity doesn't cause eating disorders, of course; it's just
part of what makes them so tough to overcome. In Kitty's case, I suspect a confluence of events last spring pushed her into full-blown anorexia: a growth spurt, restricting, and a prepubertal hormonal shift. And it's going to take time, and many thousands of calories, to reverse.

In any case, I know what we have to do, and I know, now, that we can do it. We push Kitty's calories back up to three thousand a day. I buy a big bottle of Maalox and start making milk shakes again. We pull out the Ensure Plus from the basement. We carry on.

By Thanksgiving week, Kitty's gained two more pounds. She's calmer, though still fragile, still quick to fall apart. Dr. Beth wonders if Kitty could use some individual therapy right now. I think it's a good idea. Of course we've used up all our mental health benefits. But the amazing Ms. Susan calls our insurer and extracts extra “transitional” funding, enough to cover about six weeks of individual therapy. All I have to do, she says, is call Melanie, our behavioral health “consultant,” and make nice.

I very nearly don't manage that, because the first thing Melanie says when I call is “You've used up all your benefits,” making it sound like I'm the grasshopper from Aesop's Fables, blithely romping through summer, failing to prepare for the winter ahead. Her attitude reminds me of the
last
round of health-care debates, when the buzzword was
choice,
as in “Make wise choices about how to spend your health-care dollars.” Whatever the hell
that's
supposed to mean. Should we
choose
not to treat Kitty's anorexia because, gosh, we'd use up too many health-care dollars? Or should we choose instead to not have Emma's broken arm set? Or maybe we're supposed to choose not to get sick or hurt at all.

I know I shouldn't argue with Melanie. I know she is the gate-keeper and I need to have a good relationship with her. “If my
daughter had diabetes, you wouldn't just cut off the benefits part-way through her treatment,” I say.

“Your employer chooses the plan,” she says. “It's not our fault if your employer buys a health plan that doesn't cover this.”

True enough. But I work for a small company that doesn't have to give me
any
health insurance. I'm lucky to have this plan—and I didn't get any choice about it. Jamie and I work hard, pay our bills on time, and pay plenty for our insurance, such as it is. Our daughter is sick, with an illness neither she nor we caused, an illness that requires care. An illness with a high mortality rate. An illness that could take her sanity and her life.

What we need is help. What we get is the message that we're unreasonable, freeloaders or criminals, or worse: negligent parents who are to blame—and therefore must pay the price—for our daughter's illness.

In the end, despite my argumentative comments, we are granted six more weeks of therapy with Ms. Susan. It won't be enough. It won't even be close to enough. But it's the best offer we're going to get from the insurance company. We'll take it. But I refuse to be grateful.

Years ago, when I
was pregnant with Emma, I had to decide whether to have amniocentesis. I was old enough that there was a fair risk of Down syndrome and other chromosomal abnormalities, but I was pretty sure I wouldn't have an abortion, no matter what I learned about the child I was carrying. I wasn't keen on the idea of the test, which in itself can cause miscarriage. But my obstetrician encouraged me to have it.

“It gives you time,” she said. “Time to let go of the fantasy of
the perfect child. You have to grieve the child you're not going to have before you can embrace the one you are having.”

I had the amnio, which was normal. And I've thought of her analogy often these last few months. Jamie and I have had to let go of a certain image of Kitty in order to focus on how she is right now. I think about parents whose children have cystic fibrosis, spina bifida, sickle cell anemia, any of the thousands of ailments that will never get better and will never go away, that make a child's life painful, one way or another, and may ultimately end it. We're lucky, really; Kitty has a chance to make it through, to come out whole on the other side.

But that doesn't make things any easier. The obstetrician was right; this is a process of grieving and letting go, acknowledging that the fantasy not only isn't happening right now but will never happen. Intellectually, I get it; emotionally, I'm lagging way behind.

I can see, now, that I've been going through Elizabeth Kübler-Ross's famous stages of grief.
Denial:
then, when I thought Kitty couldn't have anorexia because she hadn't lost a lot of weight, when I tried to talk the doctor out of transferring her to the ICU; and now, when I believe (because I want to) that Kitty's fine and that we can slack off on watching, observing, recalculating.
Anger:
breaking a stack of dishes on the kitchen floor; pulling out clumps of my own hair, as I've done more than once; yelling, when I know it's not her fault, when I know that she's in pain.
Bargaining:
If I give up my life, stop seeing friends, do nothing but shop and cook and sit with her, she'll be all right.
Depression:
not sleeping; crying a lot; feelings of despair, guilt, hopelessness.
Acceptance:
nope; I'm not accepting this; not yet; maybe not ever.

 

Two days before Thanksgiving,
Kitty comes home from Ms. Susan's lunch group distraught. She tells me she's figured out what “the problem” is. “I'm doing this for you, not for myself,” she says.

“Doing what? Going to lunch group?”

“No,” she says irritably. “Eating. I'm eating what you tell me to. So I'm doing it for you, not for me.”

Slowly the story emerges. She's pretty much the only one in the group whose family is doing FBT; many of the other girls have been in and out of hospitals and residential treatment centers for years. But all Kitty can see is that they're somehow “doing better” than she is. “They seem like they're so much more insightful than I am, Mom,” she says.

Ms. Susan warned me that competitiveness can be a problem in eating-disorders groups. I'm beginning to see what she meant.

“So what are you saying, Kitty?” I ask her. “You
want
to go away?”

In fact, that is what she's saying. I can't help but wonder if this has something to do with her weigh-in today. She weighs more than she's ever weighed in her life by about ten pounds. In fact, she's only about four pounds under her target weight. Could this all be a ploy by the demon, a last-ditch attempt to claw its way back?

“Kitty, you're doing so well right now,” I begin. “It seems to me that we'd be going backward to send you away now. We've got momentum going. Why would you want to throw that away?”

“I knew you'd think it was just the eating disorder talking!” she cries. “But it's not!” She pauses, then says, “Maybe I would lose a little weight at first if I went away. But I'd make so much emotional progress!”

We are talking to the demon, and it's scary, because on one level what Kitty says makes perfect sense. She is a people pleaser,
eager to do what other people want her to do. But real emotional insight and growth typically comes
after
physical recovery. That's how FBT is structured, and for good reason. Starving doesn't make you more insightful; it just makes you sicker. The demon is so very clever, taking a little bit of truth and twisting it into a lie. Right now, Kitty
does
have to do what we want her to, at least when it comes to eating. There will be plenty of time for her to become more independent later, when she's recovered.

When Kitty realizes that we're not going to send her away, she switches gears. If we're not going to send her to a treatment center, maybe we can support her emotional growth here at home.

“We've been trying to do that all along,” I say carefully. “What do you have in mind?”

What she has in mind, it turns out, is to skip our traditional Thanksgiving celebration with friends, stay home, and eat dinner—alone—with another girl from the lunch group, Shelly, who's just been released from the hospital.

I stare at Kitty. I want to say,
Where the hell did this come from?
Except I know where it came from—the demon, that's where. The demon, who wants Kitty on the outside looking in. The demon, who will take every chance we give it to starve our daughter.

I get that this is a tough holiday for anyone struggling with an eating disorder. All the more reason to spend it with the people who love you, who care about you, who want you to get through it and get over it. And I get that teenagers crave autonomy. But starving at home with another anorexic for Thanksgiving? That's the illness speaking. Not my daughter.

Anorexia wants Kitty to be as separate as possible from us, because we are its enemy. Anorexia wants Kitty to be isolated, with only the company of others who are ill, so that it can continue to
sink its claws and teeth into her. I look my daughter in the eye and say, “Sorry, but you have to come with us to Thanksgiving dinner.” She storms off, crying, and after a while Jamie goes in to sit with her, to try to calm her so she can eat the rest of her food and go to bed.

She's grumpy with us for the next few days, worrying about Thanksgiving. The day itself, at the home of our close friends Harry and Lisa, goes smoothly. Kitty sits next to me at the table and eats what I serve her—turkey and cranberry sauce and roast potatoes, bread and butter, pumpkin pie. After dinner she wants to go home. I tell her we're not quite ready, that she can take her book upstairs to a quiet room if she wants to get away from the hubbub of nine children, six adults, and several dogs. But instead of going upstairs, she follows me around the house, standing so close to me that I can feel her breath on the back of my neck. I try to draw her into the conversation, but she stays quiet. I try to ignore her, but I can feel her silent pressure bearing down, and it irritates me. At one point I tell her she's standing way too close, and could she please go sit on the couch? When I turn back to the conversation, she takes hold of my upper arm and pinches, hard.

“Ow!” I cry, and look at her. Not-Kitty looks back at me through a studiously neutral mask.

“I'm sorry,” she says. “I didn't mean to do that.”

I rub my arm and stare into my daughter's face. Kitty didn't mean to do that. The demon did.

We go home.

 

The next week, Jamie
and I accompany Kitty into the session with Ms. Susan. It's time for a family check-in. In traditional FBT,
Emma would come to the session too. But Emma begs not to go, and I don't have the heart to force her.

Kitty is eloquent on the subject of wanting to take control of her eating once more. She tells Ms. Susan what she's told us: that she feels her recovery won't count somehow unless she does it herself and not us, that she wants to go away to a treatment center, that she wants us to back off.

Ms. Susan turns to us. “Are you ready to give Kitty back control over her eating?” She barely gets the words out when both Jamie and I say no, she's nowhere near ready. Susan turns back to Kitty.

“Your parents say you're not ready,” she says. “You're still under your target weight. I think if you want some control back we should talk about very small steps, and make sure they're working before we move on to anything more.”

Together she and Kitty come up with an idea for a first step in that direction: Kitty might eat lunch at school once a week instead of coming home. “Could you arrange to eat with someone specific?” asks Susan. “What about the guys?” Kitty's been spending time with a couple of guy friends, Martin and Garth. I find it interesting that as she recovers she chooses to hang with them more than with female friends. Neither Jamie nor I picks up any sexual tension; it's more camaraderie, doing things together. Friendships among girls at this age tend to focus on talking about feelings and emotional interactions and, increasingly, boyfriends. Kitty's avoiding those kinds of conversations right now. She's not really in a place where she wants to spill her guts to other people, and I can't blame her. Plus, there's the added bonus of how much high school guys eat.

We agree that Kitty can try eating lunch at school once a week with Martin and Garth. “Or I could eat with Shelly,” she says.

“If Shelly even eats lunch,” says Ms. Susan conversationally.

“Eat with the guys,” I say firmly.

Then Jamie, who tends to be quiet in therapy sessions, starts to talk. As the fall has progressed, I've been spending more time at work, and he's been in the trenches with Kitty. He's the one who makes the peanut butter and honey sandwiches at lunch; he makes the daily milk shake, and sits with her as she drinks it. Now he brings up something that's been troubling him for weeks: Kitty's tendency to leave food on her plate. Sometimes it's sandwich crusts; sometimes, though, she crumbles food and spreads it around on the plate.

“It upsets me when you do that,” he says, and Kitty immediately bursts into tears, burying her face in one of Ms. Susan's overstuffed pillows. “It would be a lot easier for me to say nothing,” he continues. “But I'm trying to take care of you, and I need to bring up the difficult things.”

I am moved, as I have been so often this fall, by his willingness to not just show up but stand up for our daughter. It's hard to say these things to Kitty right now. It's hard to watch her fall apart. I think it's especially hard for him, because he comes from a family of enablers and avoiders. He's the kind of man who doesn't seek out conflict. Our roles here have flipped; I'm usually the confrontational one, always up for challenging the status quo. But I find it so painful to articulate what I'm seeing these days that I've retreated into silence more and more. Kitty's lucky to have him for a parent, though she may not feel that way right now, or for the foreseeable future. About either of us.

The day after our session, Kitty seems much calmer, more relaxed. After school she works on a jigsaw puzzle with Emma and me, though she says she doesn't like puzzles. She's nicer to me, giv
ing me a spontaneous hug in the kitchen as I make tea. Most of all, she's clearly making an effort to eat more of what's on her plate. We measure her progress in crusts and crumbs, and keep going.

 

December is busy, as
usual. There are school concerts and neighborhood potlucks and holiday parties, and every one of them involves food. This year we attend as few as possible: Emma's violin concert, my office holiday party. Kitty hits a couple of rough patches: finals are looming, and Ms. Susan thinks some of Kitty's anxiety comes from the pressure she puts on herself to not just do well in school but do perfectly. On her advice we pull Kitty out of school two weeks before the end of the semester and have her guidance counselor let her teachers know she will not take finals for medical reasons. Immediately Kitty seems more relaxed, better able to eat.

“People with eating disorders don't tend to do well with stress,” Ms. Susan reminds us for the hundredth time.

No. Well. Neither do their families, at the moment.

The second rough patch has to do with sleep—or rather, the lack of it. Kitty's had insomnia on and off since last spring. The psychiatrist has tried a variety of medications, none of which have helped. In early December, Dr. Newbie prescribes Ambien. It's not particularly helpful; Kitty falls asleep fast but still wakes up several times during the night. And she's groggy in the morning, even though I'm giving her only half a dose.

After a couple of days on Ambien, Kitty's still not sleeping well. She complains of anxiety, says she can't concentrate or read. One evening she starts to hallucinate, rolling her eyes, backing away from some invisible threat. I don't give her an Ambien that night. The next day I call a friend who's a psychiatrist, who tells me that Ambien can
cause paranoia and a psychosis-like state, especially in children. Why didn't the psychiatrist mention that when she prescribed it? Or the pharmacist, when we filled it? Someone should have told us to watch out for a reaction like this. Shouldn't they have?

I toss the Ambien. Better living through chemistry isn't the answer here. Alas.

Our days take on a semblance of normality, one that includes the regular, predictable landmarks of three meals and two snacks a day. But by mid-December, Kitty's weight hasn't budged; after nearly five months of refeeding, she's still ten pounds below her target, in part because she continues to grow.

I've spent time recently on a couple of online forums for families with eating-disordered children—one that focuses on the Maudsley approach, and another, bigger site that's more general. It's a relief to know we're not alone, that other families are doing what we're doing, and succeeding at it. But it seems like other people's children gain weight much faster than Kitty.