The AED’s paper takes a step in the right direction—one that’s already been taken when it comes to illnesses like schizophrenia and autism, where the biological underpinnings and mechanisms of the diseases are more widely accepted. We’ll get there for eating disorders, too; it’s just going to take awhile.
One of the hopeful signs is the slow rise of family-based treatment, which aligns parents with the teenager rather than separating them, as has been the norm. This sea change is not specific to eating disorders, but it’s particularly encouraging in that context because of the hundred-plus-year history of blaming parents for anorexia and bulimia. As I write, the Children’s Hospital in Westmead, Australia, has just opened two family units, so parents and siblings can stay at the hospital with a child undergoing treatment for anorexia. “It’s very scary for an eight-or nine-year-old to be away from home and in hospital for weeks and weeks,” says the director, Dr. Sloane Madden. “Treating the whole family as inpatients creates a much more friendly and private environment and is much more similar to what it will be like at home when they are discharged.”
I believe we’re in the midst of a cultural shift in how we see families across the board. Parents do have an enormous influence on their children, both good and bad. The experiences of childhood and adolescence can profoundly shape a person’s life. But we’re also more and more aware of the other forces that contribute, from genetics to biology to the influence of peers and the media. And we know, now, that even imperfect families—and aren’t we all imperfect?—can effectively support a child through one of the most hellish experiences of his or her life.
So this book is for the families whose children struggle not just with eating disorders but with depression, anxiety, schizophrenia, autism, bipolar disorder, and so many other illnesses that change the nature of a family’s life forever. Know that you’re not to blame, you’re not alone, and you can make a difference in your child’s life.
{ chapter one }
Down the Rabbit Hole
Starvation affects the whole organism and its results may be described in the anatomical, biochemical, physiological, and psychological frames of reference.
—ANCEL KEYS, from The Biology of Starvation
My daughter Kitty stands by my bed. It’s Saturday night, close to midnight, and I’m trying—and failing—to fall asleep. Even in the dark, even before she speaks, I can tell Kitty’s worried. I sit up, turn on the light, fumble for my glasses. Kitty’s hand is on her chest. “Mommy?” she says, her voice rising in a way that instantly lifts the hairs on the back of my neck. “My heart feels funny.” There’s fear in her deep brown eyes, different from the anxiety I’ve been seeing since this nightmare started. A month ago? Two months ago? I can’t remember a beginning, a discrete dividing line separating before from after. There’s only now. And now is suddenly not good at all.
“Funny how?” I ask, wrapping my arm around her narrow back. I could lift her easily. I could run with her in my arms.
Kitty shakes her head. Closing her eyes, so huge in her gaunt face, she digs the point of her chin into my shoulder as I reach for the phone to call the pediatrician. I know, the way you know these things, that this is serious, that we will need more than soothing words tonight.
Dr. Beth, as I’ll call her, phones back right away and tells me to get Kitty to the emergency room. She’ll let them know we’re coming, she says; she’ll tell them about Kitty. About Kitty’s anorexia, she means. I grab Kitty’s sweatshirt, because she’s freezing despite the 90-degree heat. I slip on shoes (a sandal and a sneaker, as I later discover), shake my husband, Jamie, awake. He wants to come to the hospital, but someone has to stay home with Emma, our sleeping ten-year-old. “Call me when you know something,” he says, and I’m out the door, the car screeching through the rain-slicked streets of our small midwestern city.
Six months ago I barely knew what anorexia was. Six months ago my daughter Kitty seemed to have it all going for her: she was a straight-A student and a competitive gymnast; she loved friends, books, horses, and any kind of adventure, more or less in that order. One of her most noticeable traits, since toddlerhood, has been her reasonableness. I’ve seen this quality emerge in her again and again, even at times when I would have expected her to be unreasonable—at age two, being told we weren’t going to buy a particular doll; at age five, tired from a long train ride. I’ve watched thought battle feelings in her for a long time, and reason has nearly always won out, a fact that has, over the years, concerned me at times: Aren’t toddlers supposed to be unreasonable? Don’t kids have to go through the terrible twos, the unruly threes, the rebellious twelves?
Which is why Kitty’s recent lack of reason when it comes to food and eating has been all the more puzzling. We’ve talked about it again and again: How her body needs fuel to keep going, especially since she’s an athlete. How food is good for her, not something to be afraid of. How human beings are meant to eat everything in moderation. Including dessert.
Even now, I don’t truly understand why Kitty can’t pick up a fork and eat the way she used to, why she is suddenly obsessed with calories and getting fat. She’s never been fat; no one’s ever made fun of her because of her weight. She has always loved to eat. In one of our favorite family stories, Kitty, age four, ordered a huge bowl of mussels in a restaurant one night and devoured them, licking the insides of the shiny dark shells. The chef came out of the kitchen to see the child with the adult palate and sent out a bowl of chocolate ice cream in appreciation. Which Kitty finished.
I still don’t understand, but I’m beginning to know. To recognize the sick feeling in my stomach each time we sit down at the table and Kitty does not eat. I’m beginning to be able to predict how each meal will go: Jamie and I will take turns cajoling, pleading, ordering our daughter to eat, and she will turn aside everything we say with the skill of a fencer parrying a lunge. She will eat a few bites of lettuce, a handful of dry ramen noodles. She will count out six grapes and consume them with infinite slowness, peeling each one into strips and sucking it dry. She will pour her milk down the sink when she thinks we’re not looking, allow herself only five sips of water.
And at the end of the meal, she will climb the stairs to her room and do a hundred extra sit-ups, penance for the sin of feeding herself even these scraps. Which would not keep a dog alive.
Which will not keep her alive, either.
Kitty sits next to me in the front seat, her lank blond hair scraped back in a ponytail, looking small and lost in the oversized sweatshirt that fit her six months ago. “I’m dizzy, Mommy,” she murmurs. I keep one hand on the wheel, the other on her, as if I can keep her from floating away. My brain seems to divide as I drive, so that while part of me is watching the road, hitting the gas and brake, another part is thinking Don’t die. Please don’t die.
The triage nurse is waiting when we hustle into the emergency room. She has my daughter on a gurney, sweatshirt off, hooked up to the EKG machine, within minutes. Kitty trembles in the hospital air-conditioning, goose bumps rising along arms so thin they look like Popsicle sticks. She clutches my hand, the sharp bones of her fingers leaving bruises, as the nurse applies goo and deftly arranges the sensors across her chest.
“Don’t leave me,” she says, and I promise. They’ll have to handcuff me to get me out of the room this time.
I’d left the room a few months earlier, at Kitty’s fourteen-year-old checkup, trying to be a good mother, a wise mother, a nonhelicoptering mother. The truth is, I was worried about Kitty’s weight. She’d always been on the small side, built lean. When she turned eleven, she’d gained a little weight as her body got ready to grow. It wasn’t much, maybe five or six pounds, but Kitty was unhappy about it. That was the first time she talked about not liking how she looked, at least to us. Of course Jamie and I reassured her, reminding her that this was her body’s way of getting ready to develop, that she’d be healthy and strong no matter what shape or size she was meant to be.
She was in sixth grade at the time, the first year of middle school, and the emphasis in health class, then as now, was on obesity. The sixth graders were weighed, their BMIs calculated, their fat measured with calipers. They learned about calories and nutrition, all from the cautionary perspective of too much rather than not enough. So it didn’t surprise us when Kitty came home one day and announced that she was cutting out desserts because they weren’t “healthy.”
I thought it might be a good idea. I applauded her discipline and willpower. Like most women in America, I’ve had a conflicted relationship with food and eating. Like most women in my family, I’m short and plump and have a sweet tooth. And like most mothers of my generation, I was determined that my kids would be healthier than me. My children would breathe in no secondhand smoke; they would always wear seat belts and bike helmets and eat organic food as much as possible. I baked Kitty’s first birthday cake myself, a homemade concoction of carrots and raisins, using applesauce instead of oil and a quarter of the sugar the recipe called for because I didn’t want my baby getting a taste for the hard stuff. Our photos from the big day show a sagging Leaning-Tower-of-Pisa construction with barely enough icing to cover the 100 percent whole wheat dough. Very kindly, none of Kitty’s grandparents criticized the cake. But nobody ate it, either. Not even the birthday girl. Not even me.
My views had evolved since then. All things in moderation, as Aristotle advised. Still, we probably ate too much sugar; less, in this case, might be more.
If I’d understood what was to come, I would have served dessert at every meal. I’d have bought an ice cream maker, taken up cake decorating. I’d have whipped up brownies and cookies every week. Every day. Hell—I might have opened my own bakery.
Kitty’s worries about being fat seemed to dissipate by the end of sixth grade. She grew an inch and put on some muscle after joining a gymnastics team. But at her checkup that December, she weighed half a pound less than she had the year before, despite the fact that she was taller.
“Isn’t she too thin?” I asked the pediatrician.
Dr. Beth is a small woman, short, with streaked blond hair and laugh lines at the corners of her eyes. She looked over my daughter’s vitals and her chart. She soon had Kitty laughing and chatting about school and gymnastics and friends. While they talked, Dr. Beth plotted her growth on a chart and showed me that Kitty had gone from the 50th percentile in weight to about the 42nd—not a big drop, and probably, she explained, just a blip, a temporary dip in the curve. She’d dropped in percentile that way between ages nine and ten, though she hadn’t actually lost any weight that time. Still, said Dr. Beth, this was probably within the range of normal adolescent growth.
“She’s just naturally thin,” she said. Then she asked me to leave the room so she and Kitty could talk privately. That, too, was a first, a sign of Kitty’s growing autonomy. A sign that she had her own life now, and that as her mother, there were things I was no longer privy to.
But sitting in the waiting room, I felt more worried, not less, and I didn’t know why. Was I being overprotective? I told myself the doctor knew best. I reminded myself to be proud of Kitty’s maturity and good sense. Proud of myself and Jamie, for the hard work of raising her so far. If I felt a pang at the thought that our work was nearly done, that Kitty was growing up, well, that was my problem and my issue, wasn’t it?
So why did I feel so uneasy?
Fast-forward four months, to April. Kitty was fourteen years old, with shiny blond hair that fell below her shoulders and dark eyes flecked with gold. She was, as she had been since birth, a compulsively curious person, physically and intellectually adventurous. Her goal was to be a lawyer, and she already knew where she wanted to go to law school: Columbia, because more than anything, she wanted to live in New York City. Which is why it was so much fun to take her to New York that spring, just the two of us. We stayed with friends, shopped, saw a play. And we ate: Indian dinners and sushi, bowls of pasta in alfredo sauce, creamy gelato—far better food than anything we could get back in the Midwest.
When I got the photos back the week after our trip, I thought Kitty looked taller. Or, possibly, a little thinner. In every picture, though, she was smiling broadly, one arm looped through mine. The image of happy confidence.
The triage nurse raises the strip of the paper and studies the zigzagging lines that hold the answer of what will happen next to Kitty. Then she busies herself tidying up the gurney. “Wait outside,” she says briskly to both of us. “The doctor will come get you.”
I pull Kitty’s shirt over her bony chest and button it, slide her arms into her sweatshirt the way I did when she was a little girl, zip it all the way up again. It’s not enough to keep her warm. I wrap my arm around her and she leans on me as we make our way back out to the waiting room. The TV’s on, mounted high in one corner of the room, the sound off, and we turn our faces toward it, toward the light and normalcy it represents. The images on the screen might as well be scenes from a foreign film, like the filmstrips shown in grade-school social studies classes, the kind of movies that establish firmly the otherness of the lives on-screen even as the script tries to make them seem just like us. Now we’re the others, our lives unimaginably far from the brightly colored lives on-screen. Now we’re the ones to be studied. Dissected. Pitied.
On Mother’s Day—only two months ago, now—we planned a family bike ride. Emma had recently gotten good enough on a two-wheeler to keep up with the rest of us. And so we set out after lunch on a warm Sunday afternoon. Our route was an easy eight-mile ride; even with lots of water breaks, it shouldn’t have taken more than two hours. But almost as soon as we hit the bike trail, half a mile from our house, Kitty began to cry. Not a few sniffles, either, but full-out hysterical sobbing.
We stopped right away. “What happened?” I asked. She’d been fine at home, ten minutes earlier. “What’s wrong?”
“I don’t know!” she wailed. She wouldn’t, or couldn’t, tell Jamie or me what was wrong.
After twenty minutes of sitting by the side of the trail, Jamie asked, “Should we go home?”
“I don’t want to ruin Mother’s Day!” sobbed Kitty, getting back on her bike. Off we pedaled. Five minutes later, the same thing happened again. On and on Kitty wept, and we watched helplessly.
After an hour, we’d made it to a small concrete gazebo in the middle of a playground in a subdivision of McMansions. The gazebo offered the only shade in sight, and we huddled under its small roof, rubbing Kitty’s back, trying to get her to drink (she insisted she wasn’t thirsty), trying to figure out what had gone so suddenly and bewilderingly wrong. “I don’t know,” she said, over and over, as tears literally squirted from her eyes and down her cheeks. “I don’t know! I’m sorry!”
She didn’t want to go home, but she couldn’t ride. And so we sat in the gazebo. And sat. The rest of us ate our snacks and drained our water bottles and still Kitty cried. Ten-year-old Emma lay on her back on the picnic table, shredding the season’s first dandelion, kicking the top of the table in frustration. I could feel my empathy begin to wane. By now all I wanted for Mother’s Day was to be sitting in air-conditioning with a book and a glass of ice water. Preferably alone.
Eventually we persuaded Kitty onto her bike and began to pedal home slowly. As soon as we got there Emma disappeared into the house, slamming her bedroom door behind her. I would have loved to do the same thing. Instead, I wheeled my bike into the garage. “Tell me what’s wrong,” I said to Kitty, propping the kickstand. “What’s going on?”
We sat down on the garage floor, surrounded by stacks of skis and bikes, garden tools, piles of the boards Jamie used to make furniture. Kitty laid her head in my lap the way she used to when she was a toddler. Lately she’d been both insecure and clingy. She reached for my hand constantly, wanting to link arms, walk in step. She hovered when I cooked dinner. Was this normal, I wondered? Weren’t fourteen-year-olds supposed to be pulling away? She did spend a lot of time alone in
her room, where she’d created a rigorous gymnastics training regimen that involved doing hundreds of push-ups, V-ups, and chin-ups a day. And she was out of the house four or five nights a week at the gym, practicing with her team from six to nine, eating dinner by herself every night around five. When she got home at 9:30, she did homework or fell into bed.
Kitty had always been wired for action. She hadn’t slept through the night until she was four. Maybe this was just more of who she was—wide awake, sensitive, tuned in. Sitting on the cool cement floor of the garage, I stroked her hair, noticing that her skin was chilled and dry, even in the heat.
“What is it?” I asked. “What’s wrong? You can tell me, you know. No matter what it is.”
Her eyes were squeezed tight, as if in pain. Tears streamed down her cheeks. “I’m afraid, Mommy,” she whispered.
“Afraid of what?” I asked.
She raised one arm and laid it across her eyes. “Remember I told you that my Spanish teacher has OCD?” she asked. I nodded; the Spanish teacher was Kitty’s favorite this year, and we’d been hearing a lot about her idiosyncrasies.
“And remember I told you she has to rearrange the chairs and desks so they’re lined up exactly?” Kitty continued. “She says if things aren’t lined up, she gets really worried and she can’t stop thinking about it until she fixes it.”
Brave Girl Eating Page 2
