Authors: Harriet Brown
What I want is what's commonplace in every other area of medicine: best practice. Evidence-based treatment, based on the most up-to-date research and clinical practice. It doesn't seem a lot to ask, to advise patients out of knowledge rather than belief. That's what doctors do, isn't it?
Not in the world of eating disorders. Not yet.
When Kitty was four or five, she went through a fairy-tale phase. Every night Jamie and I read her parables about good and evil, usually featuring a young girl in mortal danger who, in the end, lives happily ever after. So I know how fairy tales work. Events unfold according to a formula known or intuited in advance. They have a predictable story line, complete with warnings and foretellings, symbols and metaphors that make them both universal and compelling. Which, now that I think about it, might be why Kitty loved them so much. She's always been the kind of child who likes rules, who needs to know not just what to do and how to do it but what not to do and how to stay out of trouble.
If our story were a fairy tale, there would be a magic needle, a bridge rising out of the mist, a talking fish that would whisper instructions in my ear about how to trick our way across that chasm. And we
would
cross that chasm. We would overcome all obstacles, real and supernatural, and make our way to safety.
One of Kitty's favorite childhood books was a gorgeously illustrated retelling of the Russian firebird myth. The main characters are a dim but handsome young prince named Dmitri and his wise talking horse. Together they face dangers, pass through trials by fire and water, and pit their wits against the machinations of an evil king. Each time they face a seemingly insurmountable obstacle, Dmitri runs crying to the horse, wringing his hands, sure that he'll fail. And each time the horse says, “The trouble is not now. The trouble is still to come,” and then tells Dmitri what to do. Those phrasesâ
The trouble is not now. The trouble is still to come
âbecome a refrain in the book, and over time they've become a kind of family motto for us, a joke we tell each other to remind ourselves that we can handle it, whatever
it
is.
Toward the end of the book, Dmitri must leap three times into a cauldron of boiling water without getting scalded or drowned. When he runs to the horse, anxious about this final test, the horse replies, “The trouble is now.” It comes as a shock because you've been lulled by the reassuring leitmotif:
The trouble is not now. The trouble is still to come
. Of course, thanks to the horse's quick thinking, Dmitri passes unscathed through the boiling water, vanquishing the evil king and winning the hand of the woman he loves. Happily ever after for everyone, including the horse.
I want someone to tell us not only what to do and how to do it but that we
can
do it. I want to live inside a fairy tale, where good triumphs over evil and love overpowers greed, envy, resentment, and fear. Because the one thing I know for sure is that the trouble is now. The water is boiling, the demon is laughing, the young woman's life is in mortal danger.
If I can't have a talking horse, I at least want a guide, someone who's traveled this road and knows how to make it across the chasm. Who will talk us through the scary parts. The trouble is now and the trouble is still to come. And I don't know if we'll be all right.
Through all my growing up, and through all my marriage and through all the tough times, I was always trying to measure up, or trying to be somebody else. And all of a sudden you said, “I just love you. I don't need you to be well. It doesn't matter.”
âB
ETSY
H
ALL
, who has struggled with anorexia and bulimia for much of her life, quoted in a film made by her daughter, Hope Hall
To mark the end
of the first week of schoolâa week that's gone pretty well for both Kitty and EmmaâJamie and I make plans for Sunday afternoon. We'll take our kayaks to a nearby lake and paddle around, then hang out in the park onshore. Our last family outing was the opera in the park concert back in July. The night Kitty ended up in the hospital.
We've avoided going out since then because Kitty has needed to stay close to home. Eating is beginning to seem easier, but the prospect of eating a meal in front of other people still sends her into a panic. And I've come to realize just how much socializing is based around eating. Every party and backyard get-together includes food, and even when the focus isn't a mealâsay, a graduation party, even a neighborhood meetingâfood is almost always on the table, literally and metaphorically. I think of Shan Guisinger's comment about how social pressure facilitated eating in primitive societies and wonder if the urge to share food is an instinct coded into human DNA because it helps us build community.
Community, in any case, is the last thing on Kitty's mind. Truly, I think she's grateful to have homework, glad to have something else to think about, even if it is algebra. Maybe
because
it's algebra, which is completely unconnected with anorexia. What makes school hard for her is what she used to love most about it: the friendships. She obsesses over what people think of her and is convinced they're judging her because she has anorexia. I tell her no one blames her, that people understand she's ill, that they feel empathy and compassion. I wish I believed that. I'm sure her closest friends do feel for her. But I'm also sure she is being judged, and harshly, by plenty of others. I know we're all being judged, and found wanting, by some of the people who smile and cluck sympathetically in the grocery store, in the neighborhood, at the office or school. I know it hurts Kitty, because I know how much it hurts me, and Jamie, and even Emma.
We all have our reasons for staying close to home.
Kitty objects strenuously to the Sunday plan, and I nearly say never mind. But I feel as though that would be giving in to the anorexia, validating on some level her worries aboutâabout what?
I'm not really sure. So we load up our picnic, tie the kayaks onto the roof of the car, and go.
Lunch at the park takes more than an hour; Kitty dawdles and picks at her sandwich, insists she can't eat the chips, tries to refuse the chocolate milk. I wonder again if this is a mistake. But we're only five minutes from home; we can always leave if we have to.
Once we actually get into the kayaks, thoughâJamie and Emma in a rented double, Kitty and I each in our ownâit's as if some switch gets flipped and Kitty is her old self, smiling, enthusiastic, even cracking a joke about my less-than-stellar steering skills. We paddle in loose formation under a watercolor-blue sky, waving at other boats, watching a muskrat swim away from our wake. Emma, too, seems more relaxed than usual. For the first time in months I remember the ways we all fit together. We share a sense of humor. We are a family.
Which is why it's such a shock to see the demon emerge the very second Kitty steps out of the kayak. “I'm so fat,” she starts. “I'm horrible and no one loves me. Why doesn't anyone love me?” When I try to calm her down, she accuses me of speaking harshly. She tells me I'm not listening to her feelings. The monotonous ranting of the demon goes on and on. Emma puts her hands over her ears, and Jamie walks her toward the car, dragging two of the kayaks with them. I give up talking to Kitty and just stay with her, on an isolated bench, until she winds down.
We walk up to the playground, and I give Kitty and Emma each a protein bar. We've learned the hard way that she has to eat something, even a small snack, every two hours or so; she's gained eight or nine pounds, but her body still has no reserves. We feed her as often as you'd feed an infant.
I'm expecting resistance, but Kitty opens the wrapper and be
gins to eat. She takes tiny bites and chews each one with infinite care, the way she eats everything now. But at least she's eating.
Jamie looks at me quizzicallyâ
What happened?
âand I shake my head:
Tell you later.
Emma finishes her snack and runs over to the swings. Kitty stands up abruptly and starts toward the garbage can.
“What are you doing?” I call.
“I'm done!” she answers, not turning around. “I'm throwing away the wrapper.”
“Please come here,” I say, raising my voice so she'll hear me. I don't know why I want her to come back. I just do.
She turns, reluctantly, and walks toward me, one hand closed behind her back. “Show me,” I say, and even so, I'm shocked when she uncurls her fist and reveals half the protein bar, uneaten.
My daughter is fourteen years old and this is the first time I know of that she's tried to deceive me. I feel like I'm watching the scene from a great distance as it happens to someone else. Kitty's always been the good-girl type, afraid to break the rules or get into trouble. I know she's lied before; every kid does. But this feels different. This isn't Kitty.
She sits down beside me on the bench, folds back the paper, and begins to eat again. She keeps her eyes cast down and her face empty. What is she feeling? Is she angry or embarrassed, frustrated or defiant? She looks like a sleepwalkerâblank, quiet, driven by some force deep within her.
For the first time it occurs to me that my daughter will be permanently changed by thisâthis thing inside her, this twisted creature that shrieks and writhes and spits poison into her blood and bone and mind. And that, in fact, each one of us will be changed, Jamie and Emma and I. Our family will never be the same. Even if Kitty
gets wellâand at this moment that seems a distant possibilityâthings will never go back to the way they were.
Of course this is always true, in every family, all the time. Children are walking palimpsests, continuously evolving, and as parents we change along with them, accommodating and responding to who they are in the process of becoming. Part of the pleasure and reward of parenting is watching the alchemy of childhood, seeing our offspring transform themselves from generic infancy into gloriously individual adulthood. And part of our necessary sorrow as parents is having to accept the kinds of change we fear for our children.
That night in bed, I say to Jamie, “Maybe we've hit the bottom now, and there's nowhere to go but up?”
“Maybe,” he says.
We are, of course, wrong again.
The next morning Kitty comes down to breakfast with her hair in pigtails, a style I haven't seen her wear in years. She dawdles at breakfast, stirring her bowl of granola and yogurt for twenty minutes, until I say, “You're going to be late for school.”
“I'm not going,” she says.
“Why not?”
“Everyone there thinks I'm a freak who got fat over the summer. They won't stop looking at me.”
“Who's looking at you?” I ask.
“
Everyone,
” she says impatiently, and I wonder if this is normal teenage impatience or eating-disordered impatience. I hate the fact that I wonder about this. This is another legacy of anorexia: the need to question, analyze, worry every interaction like a dog with a bone. When all I want is to be like we used to be, Kitty and I, easy with and on each other.
I tell her I think she should go and at least try to stick it out. I tell her it's only two morning subjects, and if she starts missing classes this early in the year, it will be hard to catch up, and that will feel even more stressful. I tell her (though I doubt she can take this in) that it's important for her to stay involved with the world as much as she can. I know that if we let her stay home today, she'll want to do it again tomorrow and the next day.
My words seem to have no effect. So I coax her up from the table after she's eaten. “Come on, I'll walk you,” I say.
I have to practically drag her out the door, into the steamy late summer air. I figure once we're outside, her aversion to public scenes will make things easier. But this morning Kitty doesn't seem to mind making a scene. She wrenches her arm out of my grasp and balks like a horse who's come up against a jump too high. “Why are you torturing me?” she shouts, standing in front of our next-door neighbor's house. “Why don't you understand that I can't go to school this morning?”
I speak in a low, soothing tone. “Come on, Kitty, you know you have to go,” I say and try to somehow urge her down the street without actually touching her.
She glares. “Why are you doing this to me?” she shouts, her voice rising to an actual scream on the last word. I consider taking her back insideâhow can she possibly go to school like this? But my gut tells me that to back down now would be to let the demon win. I'm not letting this illness take one more thing from Kitty if I can help it. She's suffering now, I know, but her whole life is at stake. We can't go backward, even for a second.
And so I take hold of her arm again, firmly, and try to move her down the block, one step at a time. Two doors down from our house she sits down abruptly on the sidewalk, her short black skirt
flipping up for a moment around her waist. I'm sure the neighbors are watching, not that I care; I'm not easily embarrassed. But Kitty is, and she would care, if she could process anything but the anxiety and terror overwhelming her.
By the time we get to the school she's fifteen minutes late, which normally would freak her out; today I'm not sure she even notices. Clearly she can't go to her first class. Last week, we met with the school psychologist, Mr. R., an earnest young man who told Kitty she was welcome in his office anytime, even in the middle of a class. Now I tell her I think she should go to Mr. R.'s office.
She whirls toward me with a look of pure rage, her pigtails bouncing incongruously. “The minute you leave I'm going to the bathroom to make myself throw up!” she yells.
Inside my head a voice is shouting
No! No! No!
I've read enough to know that up to 30 percent of people with anorexia cross over into bulimia, and that purging complicates recovery even more. It's the last thing Kitty needs.
What should I do? Take her home? Follow her to class and keep her out of the bathroom all morning? I'm paralyzed. Kitty makes the decision for me. Standing in the empty hallway, she says, “Fine, I'll go to Mr. R.'s office!” Then she's running down the hall away from me, her backpack slapping against her shoulders. She rounds the corner and disappears. I have no idea which way Mr. R.'s office is, so I don't know if she's heading there or not. I stand there, irresolute. Eventually I walk home.
I spend the rest of the morning cleaning, unable to concentrate on anything else, picturing Kitty in the girls' bathroom at school, a finger down her throat, or running out the door, away from school. Running away from us. In a school of several thousand, no one would notice she was gone.
I finally unclench my jaw when I hear the front door open at the usual time. Kitty seems calmer than when I left her at school. But within minutes the demon is raging again. My heart aches for her, but I have to know.
“Did you throw up today?” I ask, interrupting the flow.
She glares. “That's all you care about, what I eat and whether I throw up!” she shouts. “You don't care how I feel!”
I do care about her feelings, of course I do. But what I really care about is getting her well as fast as possible. Getting her through this nightmare.
I hate the demon. I fantasize about strangling it with my bare hands, squeezing until its forked tongue protrudes. But I can't picture that without also picturing my hands around my daughter's neck, because the demon wears her face and speaks with her voice.
Kitty cries until she falls asleep at one o'clock in the afternoon. Clearly she's not going back to school today. When she wakes up an hour later, she's a bit calmer. I sit with her as she drinks her milk shake, and eventually I ask, again, whether she threw up.
The look she gives me now is weary. “I tried,” she confesses. “I wanted to. I went into the bathroom and stuck my finger down my throat. But I couldn't do it.”
I'm not religious, but I send a prayer toward the ceiling.
Thank you, whoever and whatever. Thank you for watching over my daughter.
Â
One of the strangest
things about this whole year is that despite all the trauma and drama, I have a hard time remembering that Kitty's ill. When she smiles or makes a joke, when I see a bit of the old Kitty, it's as if I suddenly mistrust the events of the last few months.
Things can't be that bad
.
Can they?
I'm a pessimist, the first
to leap to the worst possible scenario; my lack of sunny positivity is a family joke. Yet these days I often find myself wondering whether we're making a big deal out of nothing. It's not denial; three months ago I was in denial. I know without question now that Kitty has anorexia, that her life was and still is in danger. And yet every time the demon emerges I'm surprised.
I thought we were past all that.
It's as if my own thinking has been compromised by Kitty's illness. As if I've caught a touch of anorexia myself.
If I look beyond what I want to see, I can easily chart the rise and fall of Kitty's distress. It jumps when she's stressedâlike now, starting ninth grade in a new schoolâand when we hold the line around eating. It's as if the illness is a wild animal, snarling, backing slowly into a corner. Its outbursts are a sign of resistance. We didn't see the demon until we started refeeding her. In a way, it's a measure of our effectiveness.
For instance, the night after Kitty tries to make herself vomit at school is a bad one. We get dinner into her, and a bite or two of the bedtime snack, but then we give up. Jamie stays in her room, holding on to her, keeping her safe as she rages and cries, while I put Emma to bed.