Brave Girl Eating_A Family's Struggle with Anorexia

Brave Girl Eating_A Family's Struggle with Anorexia - Harriet Brown



Epigraph

The wreck and not the story of the wreck the thing itself and not the myth…
—ADRIENNE RICH, from “Diving into the Wreck”


Foreword by Daniel le Grange, Ph.D.

Anorexia nervosa is a serious disorder with devastating psychological and physical consequences. Almost 75 out of every 100,000 people are diagnosed with anorexia nervosa. More specifically, 0.6 percent of adolescent girls are diagnosed with this illness. We have a tremendous challenge before us to determine why it is that young people develop this illness. While we wrestle with this vexing dilemma, however, a more urgent challenge is what can be done to reverse anorexia and its array of devastating consequences.
Despite the crisis associated with self-starvation, few treatments have been tested, and anorexia nervosa remains a confusing trial for sufferers, their parents, doctors, and researchers. One intervention that has received considerable clinical attention is family-based treatment (FBT). In FBT, parents aren’t blamed for their child’s illness; instead, they’re viewed as a crucial resource in bringing about their child’s recovery. They are encouraged to be in charge of their son/daughter’s weight restoration while the therapist acknowledges the enormous difficulties of this task and supports the whole family. Once healthy weight has been restored, some of the developmental issues of adolescence are addressed in FBT.
Brave Girl Eating chronicles the Brown family’s ordeal battling Kitty’s anorexia nervosa—a remarkable journey that brings to life the almost unbearable struggle that both Kitty and her family endured. Anorexia nervosa brings about profound psychological as well as physiological changes in the sufferer. These changes are often so severe that it is common for parents not to recognize their offspring—to feel “This can’t be my child.” It is easy to see how perfectly competent, loving parents become bewildered and disorganized as they fail to understand this baffling illness. This confusion often makes them second-guess their natural instinct to reach out and help their child. As a consequence, they become immobilized in the face of the seemingly overwhelming power that anorexia has over their child and over them. The Browns’ story is an uplifting drama as the parents’ determination and perseverance, as well as Kitty’s brave efforts, succeed in wresting Kitty away from the eating disorder.
Understanding and treating anorexia nervosa are daunting tasks. But one thing is certain: food is medicine, and recovery cannot come about unless healthy weight is restored. Put more bluntly, one has to eat in order to get better. Many obstacles block the road to recovery, and in Brave Girl Eating the author describes some of these firsthand—for instance, the frustration experienced by both parents and teen when they get stuck in what we call “anorexic debates,” where even the most rational adult can be convinced by (or give in to) the teen’s insistence on the caloric “value” of a salad without a dressing. These debates demonstrate how malnutrition affects the mind and highlight the irrational power of the illness. As Brown points out, “The question isn’t why but what: What do we do now?”
Brown also shares many of the important lessons she and her family learned throughout their ordeal. Most affirming of parents, and valuable from my perspective, is that families (parents) are not helpless—they just have to (re)gain their confidence. This, of course, is no easy task; in fact, it is perhaps one of the most difficult goals to achieve in battling anorexia nervosa. But with the support of the therapist, parents have to “stand up” and face this illness, with love and caring. Kitty’s story demonstrates anorexia’s awful power over the teen sufferer and over the desperate parents trying to rescue their child.
Brave Girl Eating highlights some commonly held misinformation about anorexia nervosa. By showing us Kitty’s struggle, the author dispels the myth that anorexia nervosa is a choice. She equates it with other serious illnesses and disorders, and we are reminded that “anorexia chooses you!” Kitty’s struggle educates all of us about the turmoil and guilt felt by both patient and parents. Confusion and denial are commonplace as the eating disorder challenges every family member, not just the teen. This book also speaks to the frustration and anguish felt by all parents who try to understand and do something when they suspect their child has an eating disorder. These feelings are exacerbated when parents have to scramble to find a specialist eating-disorders team as they navigate the health-insurance quagmire.
It is all too clear that everyone involved in this battle with anorexia nervosa requires support and guidance. While Kitty’s family found ongoing support in their pediatrician and other professionals, they did not have access to a local FBT therapist and, instead, conducted the arduous task of weight restoration mostly by themselves. This absence of direct support and guidance no doubt complicated an already demanding task. I agree with the author that having hope is a great gift, and this hope ushered them through many tough times. However, no family who struggles with this awful illness should have to do this on their own.
Notwithstanding many obstacles along the way, Brown and her family have regained their footing, which is evidence of their resilience. Brown has since used her expertise as both a parent and writer to help empower other parents so that they may take center stage in the treatment of their children with eating disorders. Brave Girl Eating serves as a reminder that parents are not to blame for their child’s eating disorder; rather, they are a reliable resource in the recovery of their children.
Daniel le Grange, Ph.D., is a professor of psychiatry and behavioral neuroscience and the director of the Eating Disorders Program at the University of Chicago.


author’s note

Impurities creep into every memoir for the simple reason that memory is fallible and you don’t know, when you’re living through an experience, that you’ll someday be writing about it. (Even if you do know, walking around with a tape recorder doesn’t play well in everyday life.) Then of course there’s the question of perspective: two people can live through the same experience and remember it very differently—especially members of the same family.
Those issues become even more urgent when a memoir describes the lives of children, especially your own children, who are vulnerable in a variety of ways and who can’t in any real sense give informed consent to being written about. It’s one thing to expose your own life; it’s quite another to expose the lives of your kids. As a longtime journalist and, now, a professor of journalism, I think a lot about what’s ethical and what isn’t. In this book, I considered the line between openness and exploitation. My intention here is to tell the truth as ethically and as compassionately as possible. To protect my children I’ve given them false names and disguised some of their physical and other characteristics.
Deciding to tell this story was a process for me and my family. We discussed it over a period of months, weighing the potential for good against the possibilities of harm. I give much credit to my daughter Kitty, who overcame her own preference for privacy out of a wish to help others. She’s a brave and unusual young woman.
As for the vagaries of memory, I kept an extremely—one might even say obsessively—detailed journal during Kitty’s illness, partly to keep track of her progress and treatment, and partly to keep myself from drowning in anxiety. In the journal I recorded many conversations more or less verbatim, and recapped others. The events I describe in this book are based on my recollections and on that journal. In a few instances I’ve conflated situations in order to compress the story line, but every conversation and event in this book is true and did happen as described, as far as I recollect.
People who are acutely ill with anorexia and bulimia often read a memoir like this as a guidebook for staying sick—as “thinspiration.” For that reason, I have avoided mention of specific weights, numbers, and other details that might be interpreted as “pro-anorexia” or “pro-bulimia” material. It’s my intention that this book never be used in that way.




Before


What I Wish Everyone Knew

Close your eyes. Imagine that you’re standing in a bakery. Not just any bakery—the best bakery in Paris, its windows fogged, crowded with people who jostle for space in front of its long glass cases. The room is fragrant and you can’t take your eyes off the rows of cinnamon rolls and croissants, iced petits fours, flaky napoleons and elephant ears. Every counter holds at least one basket of crusty baguettes, still warm from the oven.
And you’re hungry. In fact, you’re starving. Hunger is a tornado whirling in your chest, a bottomless vortex at your core. Hunger is a tiger sharpening its claws on your tender insides. You stand in front of the glass cases, trying to swallow, but your throat is dry and your stomach clenches and contracts.
You want more than anything to lick the side of an éclair, swirl the custard and chocolate against your tongue. You dream about biting off the end of a cruller, feeling the give of the spongy dough, the brief molecular friction of the glaze against your teeth, flooding your mouth with sweetness. The woman beside you reaches into a white paper bag, pulls out a hunk of sourdough roll. You see the little puff of steam that flares from its soft center, breathe in its warm yeasty smell. She pops it into her mouth and chews and you chew along with her. You can almost taste the bread she’s eating. Almost.
But you can’t, not really, because how long has it been since you’ve tasted bread? A month? A year? And though your stomach grinds against your backbone and your cheeks are hollow, though the tiger flays your belly, you can’t eat. You want to, you have to, but your fear is greater than your hunger. Because when you do—when you choke down a spoonful of plain yogurt, five pretzel sticks, a grape—that’s when the voice in your head starts up, a whisper, a cajoling sigh: You don’t need to eat, you’re strong, so strong. That’s right. Good girl.
Soon the whisper is a hiss filling the center of your head: You don’t deserve to eat. You’re weak, unworthy. You are disgusting. You don’t deserve to live. You, you, you. The voice is a drumbeat, a howl, a knife sunk in your gut, twisting. It knows what you’re thinking. It knows everything you do. The more you try to block it out, the louder it becomes, until it’s screaming in your ear: You’re fat. You’re a pig. You make everyone sick. No one loves you and no one ever will. You don’t deserve to be loved. You’ve sinned and now you must be punished.
So you don’t eat, though food is all you think about. Though all day long, wherever you are—doing homework, sitting with friends, trying to sleep—part of you is standing in the bakery, mesmerized with hunger and with fear, the voice growling and rumbling. You have to stand there, your insides in shreds, empty of everything but your own longing. There will be no bread for you, no warm buttery pastries. There’s only the pitiless voice inside your head, high-pitched, insistent, insidious. There’s only you, more alone than you’ve ever been. You, growing smaller and frailer. You, with nowhere else to go.
The voice is part of you now, your friend and your tormentor. You can’t fight it and you don’t want to. You’re not so strong, after all. You can’t take it and you can’t get away. You don’t deserve to live. You want to die.
This is what it feels like to have anorexia.


I’ve never had anorexia, but I’ve lived with it. I’ve observed it closely in someone I love: my oldest daughter, Kitty, who was fourteen when she got sick. I watched as the upbeat, affectionate, empathetic girl I knew became furious and irrational, withdrawn and depressed, obsessed with food but unable to eat. I saw her writhe in terror, heard her beg my husband and me for help, and then, in the same breath, shriek that we were trying to poison her, to make her fat, to kill her. I heard a voice I did not recognize come out of her mouth, saw her face changed beyond knowing. I held her in my arms and felt the arc of every rib, counted the bones in her elbows, saw her breastbone press out through the paper-thin skin of her chest. I felt her body shake and knew that whatever comfort I offered wasn’t enough; it was nothing in the face of the thing that was stripping the flesh from her bones and the light from her eyes.
I had no idea anorexia was like that.
Before Kitty got sick, I thought eating disorders happened to other people’s children. Not to my daughter, who was savvy and wise, strong and funny, the kind of kid who picked her way easily through the pitfalls of toxic middle-school friendships. She did fit the classic profile: she was a perfectionist, fastidious about how she looked and dressed. She was hard on people sometimes, especially herself. She was athletic, a gymnast; her favorite event was the balance beam—fitting, I thought, for a child who so gracefully walked the line between childhood and adolescence.
But she would never have an eating disorder. She was way too smart for that.
Before my daughter got sick, I thought kids with anorexia or bulimia wanted attention, that they were screwed up and tuned out, bored or acting up or self-destructive. But my daughter was none of those things. She seemed cheerful and well adjusted; she had friends, interests, a passion for new experiences. She wrote her sixth-grade research paper on eating disorders. She knew the dangers. She would never choose to have anorexia. She was safe.
I was wrong about many things, but I was right about that one thing: Kitty didn’t choose anorexia. Anorexia chose her. And it nearly killed her.
At Kitty’s lowest weight, her heart beat dangerously slowly; it could have stopped at any time. Between 10 and 20 percent of people with anorexia die from heart attacks, other complications, and suicide; the disease has the highest mortality rate of any mental illness. Or Kitty could have lost her life in a different way, lost it to the roller coaster of relapse and recovery, inpatient and outpatient, that eats up, on average, five to seven years. Or a lifetime: only half of all anorexics recover in the end. The other half endure lives of dysfunction and despair. Friends and families give up on them. Doctors dread treating them. They’re left to stand in the bakery with the voice ringing in their ears, alone in every way that matters.
Kitty didn’t choose anorexia. No one chooses anorexia, or bulimia, or any other eating disorder. Intelligence is no protection; many of the young women (and, increasingly, men) who develop anorexia are bright and curious and tuned in. Families are no protection, either, because anorexia strikes children from happy families and difficult ones, repressed families and families who talk ad nauseam about feelings. The families of anorexics do share certain traits, though: a history of eating disorders, or anxiety, or obsessive-compulsive disorder. Or all of the above.
I’ve never had anorexia, but I know it well. I see it on the street, in the gaunt and sunken face, the bony chest, the spindly arms of an emaciated woman. I’ve come to recognize the flat look of despair, the hopelessness that follows, inevitably, from years of starvation. I think: That could have been my daughter. It wasn’t. It’s not. If I have anything to say about it, it won’t be.
This is our family’s story. Kitty was diagnosed with anorexia in June 2005. In August of that year we began family-based treatment (FBT), also known as the Maudsley approach, to help her recover. That was the start of the hardest year of all of our lives. That year, I learned just how brave my daughter is. Five or six times a day, she sat at the table and faced down panic and guilt, terror and delusions and physical pain, and kept going. And she emerged on the other side. After months of being lost, she came back to us and to herself, and the world took on color and sound and meaning once more.
Between 3 and 6 percent of all teens deal with an eating disorder, whether it’s anorexia, bulimia, binge eating disorder, or the all-too-common ED-NOS, or eating disorder not specified. Many more struggle with other devastating illnesses, both mental and physical: Schizophrenia. Bipolar disorder. Depression and anxiety. Autism. Cystic fibrosis. Cerebral palsy. Autoimmune disorders.
We have a long history, in this country and elsewhere in the Western world, of implicating families in their children’s illnesses. As I write, the Academy for Eating Disorders has released a position paper—two years in the making—that acknowledges, among other things, that “family factors” may play some role in both causing and sustaining an eating disorder. But it goes on to say, “Current knowledge refutes the idea that [families] are either the exclusive or even the primary mechanisms that underlie risk. Thus, the AED stands firmly against any etiologic model of eating disorders in which family influences are seen as the primary cause of anorexia nervosa or bulimia nervosa, and condemns generalizing statements that imply families are to blame for their child’s illness.”
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.