Brave Girl Eating_ A Family's Struggle With Anorexia Part 13

We spent the first two days on the slopes. By midafternoon on the second day, Kitty's mood had begun to slide. She became apologetic and guilt-ridden; she had an anxiety attack about getting into college, two years away. She came off the slopes in tears.

When I suggested a cup of hot chocolate, she accused me of having a one-track mind. "Every time I'm upset you think it's all about food!" she said. "You think my whole life is all about what I eat and don't eat. I'm sick of it." She stormed across the lodge's great room and flung herself into a chair by the fire, her back to me.

She was right, of course; I did a.s.sociate her mood with her food. I sat by the window and thought back over what she'd been eating for the last week-or at least what I'd seen her eat. It seemed to me, watching skiers come down the slopes through the floor-to-ceiling windows, that I'd seen Kitty start to restrict. Nothing major-just choosing, say, a plain baked potato over French fries, fruit for dessert, fish instead of meat. I hadn't seen her eat cheese in a while. Was this normal eating, or was I inventing a problem? Was my anxiety a sign that I was one of Hilde Bruch's overcontrolling mothers after all?

I crossed the room and sat on the arm of Kitty's chair. With her back to me, she said, "I'm really not trying to restrict," and it was this more than anything else that made me realize the truth. I bought a Hershey's bar and a mug of apple cider and insisted that she eat and drink. That night at the hotel's dinner buffet, I nixed the broiled fish she wanted in favor of shrimp scampi with a side of French fries and a slice of pie. She was furious, stabbing at the food with her fork, complaining more or less continuously that her stomach hurt, that I was making her eat too much, that this was my problem, not hers.

The next day she was fine: self-possessed, making jokes, helpful. She came back to the lodge a little early, saying she was tired, and without any nudging on my part ate a large protein bar and drank a carton of milk. Remember this, Remember this, I thought: the more she eats, the more willingly she eats; the less she eats, the harder eating becomes. There appears to be a self-reinforcing quality to both the act of eating and the act of restricting. I told myself to trust my instincts, that even if I couldn't articulate the symptoms, I'd come to recognize the altered state Kitty got into with even the slightest bit of undereating, whether it was intentional or not. I thought: the more she eats, the more willingly she eats; the less she eats, the harder eating becomes. There appears to be a self-reinforcing quality to both the act of eating and the act of restricting. I told myself to trust my instincts, that even if I couldn't articulate the symptoms, I'd come to recognize the altered state Kitty got into with even the slightest bit of undereating, whether it was intentional or not.

There were other incidents like this, and I wondered whether time would help or whether, maybe, Dr. Beth was wrong. Maybe Kitty was going to have to be vigilant about what and how much she ate for a while. Maybe forever.

By her junior year of high school, she was stopping by Dr. Beth's herself for weigh-ins every couple of weeks. She would get on the scale and have a nurse record her weight and call us with the number. Keeping her weight up still seemed to present a challenge, especially because Kitty, ever the athlete, had discovered a new sport, cycling. And she was good at it: in her first year she won a couple of national championships in her age group. As she put on muscle, we adjusted her target weight up, to make sure she wasn't losing body fat as she gained muscle ma.s.s.

"Why can't you take up embroidery instead of sports?" I asked her one afternoon, smiling to show that I was joking. But I wasn't, not really. In 1986, Walter Kaye did a study showing that people with anorexia need more calories than usual for months after weight restoration; eventually, he believes, their systems return to normal. In the meantime, Kitty's hypermetabolic state combined with cycling meant that she had to keep on eating about thirty-five hundred calories a day just to maintain her weight.

Something else troubled me, too: Was Kitty's drive for compet.i.tive athletics good for her, or was it a sign of ongoing pathology? Was she biking to purge calories, or because, as she said, it made her feel good? She saw her athleticism as part of who she was-the most important part, to her, at least for now. Jamie and I accepted that. But we still wished she'd expand her pa.s.sions. Before anorexia, her dream was to go to law school. When I asked her about that now, she shrugged.

Most of the time, she ate with enthusiasm and hunger and pleasure; most of the time, except for our nightly family dinners, she ate on her own, like a normal teenager. When her weight dipped a pound or two, we offered support as tactfully as possible. I might walk into the kitchen as she made lunch-she still came home for lunch, by her choice-and say, "I think you need another slice of turkey on that wrap," or "How about if I make you a couple of grilled cheese sandwiches?"

How far should we push Kitty? We weren't sure. I thought we were in Phase 2 of family-based treatment, where parents gradually return control of eating to the teenager. That's what we were trying for anyway. And Kitty's weight was good; her BMI was around 20, solidly on her growth curve, and it stayed steady over her last two years of high school. But she still seemed vulnerable in ways that surprised us. She still sometimes seemed too close to the edge.

But we were the only ones who felt that way. Dr. Beth invited me into the exam room at the end of Kitty's sixteen-year checkup. There she told me that Kitty was in a good place, she was ready to move on from the anorexia, but that my continuing anxiety over Kitty's eating was "inappropriate" and holding her back.

Over the next few days I thought hard about what Dr. Beth said. Was she right? Was I hanging on to the anorexia in a way that was holding Kitty back? Kitty's relationship to food still felt tense and controlled to me. Both Jamie and I noticed that she still shied away from foods she used to love, like pizza, cheese, chocolate. She said said they upset her stomach; it seemed a bit too coincidental that they all contained fat. She was often emotionally volatile; then again, she was a teenager. Her weight was good for her height but not high. She told me she was having regular periods. they upset her stomach; it seemed a bit too coincidental that they all contained fat. She was often emotionally volatile; then again, she was a teenager. Her weight was good for her height but not high. She told me she was having regular periods.

Her urge to exercise still felt excessive to me, especially when I discovered by accident that she'd added running to her workout routine, after we'd agreed she wouldn't run. When I confronted Kitty about it, she said running helped her deal with stress, that it wasn't part of an eating disorder, it was just who she was. That she wasn't doing it to burn calories.

I believed her. But I didn't believe anorexia. And I didn't know who we were talking to.

In some ways it was easier to know what to do when Kitty was in crisis. Things were black and white then: the hospital, the medical emergency, the physical manifestations of malnutrition all inspired a sense of urgency. In Phase 1, all our efforts focused on getting Kitty to gain weight. Now the goals were more complex and more individual.

Maybe Dr. Beth was right. Maybe I did have issues about letting go. I couldn't tell anymore. My anxiety boiled down to a feeling that Kitty wasn't there yet-wherever there there was. was.

In my anxiety about being anxious, in my wish to respect Kitty's growing independence, I argued with Jamie. Kitty was still nervous about getting weighed; she wanted to know a day in advance, so she could, as she put it, "prepare herself mentally." Jamie thought this was suspicious and wanted to be able to pop her on the scale randomly-not in a punitive way, just to do the occasional spot check. I said I could understand her anxiety; after all, we put a lot of emphasis on her hitting the right number on the scale. I was trying hard to let go of my anxiety, as Dr. Beth had suggested. I didn't want to be one of those neurotic mothers who couldn't let their child grow up.

I won the argument; we gave Kitty advance warning when we were going to weigh her. In retrospect, I wish I'd lost.

Every parent worries when a child strikes out on her own. We're not like birds, who push their fledglings out of the nest. We worry about who will be there to comfort our child, to help her learn to take care of herself. And when that child has special needs, whatever they are, the process of becoming independent is that much more fraught. The stakes are that much higher. a child strikes out on her own. We're not like birds, who push their fledglings out of the nest. We worry about who will be there to comfort our child, to help her learn to take care of herself. And when that child has special needs, whatever they are, the process of becoming independent is that much more fraught. The stakes are that much higher.

Kitty graduated from high school a semester early. She'd been accepted at a small midwestern university for the fall, and she wanted to spend spring of her senior year living in Colorado, training and racing with the rest of her cycling team. She said she knew lots of people in the area; she could cook, do laundry, hold down a job in a bike shop. She couldn't wait to be independent.

She was close to her new, slightly higher target weight, a couple of pounds shy, and said she could reach it on her own. "I've left anorexia behind, Mom," she told me. And I wanted to believe her. I wanted Dr. Beth to be right about Kitty being one of the lucky ones who recover completely, go on with their lives, never look back.

So she went off to Colorado, with certain conditions: She had to stay in close touch with us. And she had to find a doctor's office where she could be weighed, and where the nurses would send us the weight, at least every two weeks.

At first things went well. Every time we talked I asked if she'd found a doctor's office for weigh-ins, and every time she said, "Not yet." And every time we hung up, Jamie and I muttered to each other about making some calls and finding a doctor for her. Setting it up.

But the truth is, Kitty was eighteen, and part of the point of this gap semester was for her to become more independent. So we didn't make any calls. The weeks pa.s.sed, and she said she was doing well. But I noticed that she sounded a little fragile on the phone-a little more high-strung, more p.r.o.ne to tears. "Are you eating?" I asked, over and over.

"Yes, Mom," she said in an exasperated voice.

"What did you have for breakfast?"

"I can handle it, Mom!"

Around Mother's Day I went out for a weekend visit, at Kitty's request. When I got out of the airport taxi, she was standing at the door, waiting for me. And even from the curb I could see why she wanted me to come out. I went to her, put my arms around her newly bony shoulders. I wanted to weep. I wanted to lay my daughter down as if she were made of china and take care of her. I looked into her eyes, and I saw that she knew what had happened. She was aware. Now I was too.

That weekend, we talked and talked. Kitty said she knew she'd lost a little weight, but she was on top of things, she could turn it around. I thought it was more than a little-it had to be at least fifteen pounds. How in the world did she lose fifteen pounds in less than two months?

I took her out for Thai food and she ate with gusto. I relaxed a little. But for the rest of the weekend, I watched her restrict without even knowing it. It was little things, like not putting b.u.t.ter on bread, eating salad with no dressing, eschewing anything with cheese. She was too full for pie, she said, eating half a peach instead.

My last morning, I told her what I saw: that whether she intended it or not, whether she thought I equated everything with food or not, she was not eating enough, or enough of the right foods. We talked through some meal possibilities, things she could cook or buy easily. "I know I can do it, Mom," she told me, and I wanted so badly to believe her.

A month later, we brought her home, another ten pounds lighter, and began again the work of loosening the demon's claws.

Over the last four years, I've talked to many families who have gone through some version of our story: their child recovered from anorexia at twelve or thirteen or fourteen and then relapsed at college or living independently for the first time. Every teen has to learn to take care of herself; inevitably, they make mistakes along the way. years, I've talked to many families who have gone through some version of our story: their child recovered from anorexia at twelve or thirteen or fourteen and then relapsed at college or living independently for the first time. Every teen has to learn to take care of herself; inevitably, they make mistakes along the way.

"I just wanted to be normal," Kitty told me on her first day home. "I didn't want to have to think about food or anorexia. I just wanted to live like a regular person and not always be worrying about how much I was eating."

I could understand her longing to leave anorexia behind, to not worry about it, to be "normal." I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it. It would become just one of the things she had to do, like brushing her teeth. It would become part of "normal" for her. Nearly all of us have some aspect of our lives that we have to track like this.

One of the worst moments this time around came when Kitty confessed that three years earlier, she'd sewed weights into a bra, and wore it every time we weighed her. That's why she needed to know ahead of time before a trip to Dr. Beth's. Jamie was right about the weigh-ins all along.

I didn't even know she could sew.

She said she'd sewed five or six pounds of weights into the bra, which meant she was never even close to the target weight we set. Which explained why she so often seemed too close to the edge. And, maybe, how she lost so much weight so fast.

It was harder, this time around, to separate Kitty from the illness, harder to tell the demon's voice from her own. Kitty was eighteen, not fourteen, more sophisticated, more grown-up, both more and less aware of the fact that she was ill, of the distortions the illness imposed on her thoughts and actions. Last time, I'd worried that going through the refeeding process would damage our relationship irrevocably. It didn't, a fact I knew only from overhearing Kitty tell the mother of another girl with anorexia, "You need to do what my parents did. They saved my life."

This time around, she was stronger and more resourceful; so was the illness. This time even more than the last, Jamie and I had to block our ears to the demon's imprecations, stay calm, and keep feeding our daughter. I thought of Ulysses tied to the mast so he couldn't change course, seduced by the song of the Sirens. The metaphor seemed apt, only instead of Sirens we heard the voice of the illness: I could recover much better somewhere else. You're making it harder, not easier. I can take care of this myself; give me another chance! I could recover much better somewhere else. You're making it harder, not easier. I can take care of this myself; give me another chance! We considered sending Kitty to some kind of residential program. Cost was an obstacle, but even more than money was the knowledge that what she really needed was food and the patient scrutiny of people who loved her. Who We considered sending Kitty to some kind of residential program. Cost was an obstacle, but even more than money was the knowledge that what she really needed was food and the patient scrutiny of people who loved her. Who knew knew her better than anyone else. Who weren't fooled, or at least not as often, by the demon's tricks and manipulations. her better than anyone else. Who weren't fooled, or at least not as often, by the demon's tricks and manipulations.

Many parents of teens with anorexia-especially older teens-are accused at some point of hanging on to the disease too long. Of not wanting to let go of their adolescent. Of missing the feeling of being needed, or the attention they got from doctors, or...fill in the blank. In my experience, this is rarely if ever true. Everything I know about eating disorders-that they're anosognosic, ego-syntonic, that they cloud the mind and alter the body's chemistry-is still true now that Kitty's over eighteen. The essential nature of the illness doesn't change once your child crosses the magical age line.

This is a big part of what makes family-based treatment more challenging for families with older teenagers. We're more vulnerable to the criticism of being overly controlling, because eighteen-year-olds in this culture are supposed to go off, be independent, take care (more or less) of themselves. FBT goes against the cultural grain even more for an eighteen-year-old than it does for a twelve-or fourteen-year-old.

And yet I've come to learn, through hard experience, that people with eating disorders as well as other mental disorders aren't always (or even usually) best suited to make choices about their recoveries or lives. I know this is a statement that will make some sufferers angry; they'll say, as Kitty said to me, that I'm not respecting them. That I'm pooh-poohing their feelings, sweeping them all into the box labeled eating disorders. That's not my intention at all.

In December 2007, the NYU Study Center caused a firestorm of protest with a public awareness campaign about childhood psychiatric illnesses and learning disorders. The concept was that mental illnesses hold children hostage; a series of "ransom notes" were designed to raise awareness of the realities of mental illness. For instance, one note read, "We have your daughter. We are forcing her to throw up after every meal she eats. It's only going to get worse.... Bulimia. Bulimia." Another: "We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens.... Depression. Depression."

The campaign kicked up so much backlash that NYU withdrew it after only a week. I think one reason it hit such a collective nerve is that it challenged our culture's deeply held notion that we're in control. My mother-in-law, who suffered from mild depression, used to say, "When I feel myself beginning to be depressed, I just talk to myself. I say, You're not going to let that happen again." I'm glad that strategy worked for her. But we can't always control how we think or feel or behave. The take-yourself-in-hand line of thinking is cruelly ineffective for eating disorders as well as for many other mental illnesses, and especially for children, whose ability to reason, think deductively, synthesize information, and make judgments continues to develop until they're in their midtwenties.

As I write this, Kitty has just started college, a semester later than planned. She's not fully recovered from this relapse but she's made good progress and is working hard. Jamie and I agonized over whether to send her. She wanted to go and demonstrated that she was capable of gaining weight on her own. When she was fourteen, there was no question of letting her go anywhere until she was fully recovered. At eighteen, the process of recovery becomes by necessity more collaborative-up to a point. It's one thing to allow for some autonomy, to antic.i.p.ate some b.u.mps in the road. It's quite another to sit back and watch the demon take hold once more. That we're not prepared to do. We've built as much support as we can into her college experience; now we will wait, and watch, and be ready, knowing that the longer the demon lives inside her, the more comfortable it gets. The more entrenched the eating disorder, the harder it will be for her to achieve true recovery.

Kitty knows that if she doesn't continue to recover, we'll bring her home to finish the work here. Because the essential question remains the same now as it was four years ago: Do we want her to have the life she was meant to have, full of color and hope and joy? Or are we willing to settle for the gray half-life that comes from living with the demon?

The rest of the world may think we're being overprotective. We know the truth: we are saving our daughter's life, if not literally, then in every way that counts. We'll do whatever it takes to make sure Kitty gets well and stays well, whether she's eighteen or thirty-eight. That's what families do.

{ resources resources } } Web sites Maudsley Parents www.maudsleyparents.org

National Eating Disorders a.s.sociation www.nationaleatingdisorders.org Books Brumberg, Joan Jacobs. Fasting Girls: The History of Anorexia Nervosa Fasting Girls: The History of Anorexia Nervosa. New York: Vintage Books, 2000.

Collins, Laura. Eating with Your Anorexic: How My Child Recovered Through Family-Based Treatment and Yours Can Too Eating with Your Anorexic: How My Child Recovered Through Family-Based Treatment and Yours Can Too. New York: McGraw-Hill, 2005.

Keys, Ancel, Josef Broek, Austin Henschel, Olaf Mickelsen, and Henry Taylor. The Biology of Human Starvation The Biology of Human Starvation. Minneapolis: University of Minnesota Press, 1950.

Lock, James, and Daniel le Grange. Help Your Teenager Beat an Eating Disorder Help Your Teenager Beat an Eating Disorder. New York: Guilford Press, 2005.

Russell, Sharman Apt. Hunger: An Unnatural History Hunger: An Unnatural History. New York: Basic Books, 2005.

Treasure, Janet, Ulrike Schmidt, and Eric van Furth. Handbook of Eating Disorders. Handbook of Eating Disorders. 2nd ed. Chichester, England: John Wiley & Sons, 2003. 2nd ed. Chichester, England: John Wiley & Sons, 2003.

Vandereycken, Walter, and Ron van Deth. From Fasting Saints to Anorexic Girls: The History of Self-Starvation. From Fasting Saints to Anorexic Girls: The History of Self-Starvation. New York: New York University Press, 1994. New York: New York University Press, 1994.

Selected Articles and Studies Allan, Rosemary, Reena Sharma, Bhumika Sangani, Philippa Hugo, Ian Frampton, Helen Mason, and Bryan Lask. "Predicting the Weight Gain Required for Recovery from Anorexia Nervosa with Pelvic Ultrasonography: An Evidence-Based Approach." European Eating Disorders Review European Eating Disorders Review 18, no. 1 (2010): 4348. 18, no. 1 (2010): 4348.

Arkell, James, and Paul Robinson. "A Pilot Case Using Qualitative and Quant.i.tative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder." International Journal of Eating Disorders International Journal of Eating Disorders 41, no. 7 (2008): 65056. 41, no. 7 (2008): 65056.

Attia, Evelyn, and Christina Roberto. "Should Amenorrhea Be a Diagnostic Criterion for Anorexia Nervosa?" International Journal of Eating Disorders International Journal of Eating Disorders 42, no. 7 (2009): 58189. 42, no. 7 (2009): 58189.

Attia, Evelyn, and Timothy Walsh. "Behavioral Management for Anorexia Nervosa." The New England Journal of Medicine The New England Journal of Medicine 360, no. 5 (2009): 500506. 360, no. 5 (2009): 500506.

Barboriak, Joseph, and Arthur Wilson. "Effects of Diet on Self-Starvation in the Rat." The Journal of Nutrition The Journal of Nutrition 102 (1972): 154346. 102 (1972): 154346.

Bardone-Cone, Anna, Katrina Sturm, Melissa Lawson, D. Paul Robinson, and Roma Smith. "Perfectionism Across Stages of Recovery from Eating Disorders." International Journal of Eating Disorders International Journal of Eating Disorders 43, no. 2 (2009): 13948. 43, no. 2 (2009): 13948.

Casanueva, Felipe, Carlos Dieguez, Vera Popovic, Roberto Peino, Robert V. Considine, and Jose F. Caro. "Serum Immunoreactive Leptin Concentrations in Patients with Anorexia Nervosa Before and After Partial Weight Recovery." Biochemical and Molecular Medicine Biochemical and Molecular Medicine 60 (1997): 11620. 60 (1997): 11620.

Cordero, Elizabeth, and Tania Israel. "Parents as Protective Factors in Eating Problems of College Women." Eating Disorders Eating Disorders 17 (2009): 14661. 17 (2009): 14661.