Hope and Other Luxuries (60 page)

“I like scars,” she murmured.

And there it was, like a slap across the face: more scars! More cuts, wounds, burns. Damage to my babies—my precious children!

I wanted to scream. I wanted to push my fist through the car horn. I wanted to floor the accelerator until the other cars became a blur, to punch us through to a world where things made sense. Because this cut—this Elena!—made no sense. I refused to allow it to make sense.

That's
it
!
I thought.
I'm
done
with this! This person is a closed book to me. She is a riddle I have no more desire to solve
. I dropped her off at treatment and went home and went to sleep. I escaped from her and her problems entirely.

I know what the next day was. It was Saturday.

Ordinarily, Saturday would mean nothing to Elena and me. Treatment ran seven days a week. But this Saturday was Family Day. Once a month, staff and patients rallied around to help educate their friends and relations about their condition.

This Saturday was my first Family Day. I dropped Elena off at the door as usual, but this time, I parked the car and followed her inside.

The receptionist waved me down the hall toward a classroom-size conference room. About twenty parents, siblings, and friends of patients were sitting in a big circle there. They were talking together in low voices, making the kinds of jokes and comments people make before a tough training class to remind themselves that they're ready for anything.

I didn't have anybody to joke with, and I didn't feel ready at all. I didn't know anybody there, and even if Elena had been there, I wouldn't have felt that I knew her, either. But I took heart from the general atmosphere of nervousness in the room. Others were feeling what I was feeling, too, even if they had friends or relatives to help them get through it.

A small buffet of breakfast foods waited on a table by the door: coffee, bagels, and fruit. I reached for the coffee first and then, even though
I wasn't particularly hungry, I selected a whole-grain bagel and some slices of cantaloupe. As I headed toward a vacant chair, I noticed the generous plates of bagels and fruit balanced on other laps.

Look at me—I'm a healthy breakfast!
our plates were proclaiming to the world.
This person doesn't have food issues—no sirree!

The psychologist in charge of Family Day was familiar to none of us. She'd been invited in from another clinic. This way, she told us, if she brought up a particular issue, we wouldn't think,
She's talking about me!
And we could speak frankly to her, too, without wondering if our comments would come back to haunt us during the next family therapy session.

Family therapy. I spared a second of annoyance for Susan. Demonic possession—what kind of stupid topic was
that
?

The psychologist launched into a lecture on the way eating disorders change the brain. These changes can actually show up on MRI scans, making the brains of some anorexics physically different from the brain of a non-anorexic. The area of the brain that's different controls body image, and that means an anorexic truly can't see himself or herself the way healthy people do. So it doesn't do any good, the psychologist told us, to point out how skinny an anorexic has become. It isn't psychological, it's physiological: the brain itself won't be able to process that image.

As I scribbled notes on a little memo pad, I thought about how hard it was for me to understand my daughter. So it wasn't just my imagination after all: Elena's brain truly
was
different.

Next, the psychologist worked through a list of dos and don'ts. One of them reinforced what Elena had told me when I first came to visit her: “Don't mention physical appearance at all. Even a compliment can redirect the attention of an anorexic to body image, which is never a comfortable thing for anorexics to think about.”

I remembered all the times I had complimented Elena's appearance. Then I thought about how quick we humans are to notice the
lack
of a compliment and misinterpret that silence as disapproval. Then I gave a sigh.

I thought,
This is just another one of those anorexia no-win situations
.

But the friendly attitude of the other family members steadied me. Some of them had been coping with their loved one's anorexia for over a
decade, and yet they were staying positive. They were holding on to their patience and compassion, and they watched for little signs of progress.

“It's like a yo-yo,” one veteran said. “It's up and down, but the lows don't go as low, and the highs are a little bit higher each time.”

In fact, this group of family members seemed refreshingly normal, and that secretly amazed me. I realized I had been expecting to find a shadow in their eyes, some collective sign of remorse. Then I realized what an overwhelming load of shame I'd been carrying around with me for the last four years. It had started building up when Valerie had first begun to self-harm, as if those marks on her body were cut and burned into my body, as well, because I should have—I
would
have!—defended that body with my life.

Once again, my imagination showed me that image of the nasty dark stream of blood running down the sink. Meanwhile, Elena's voice was saying serenely,
I like scars
.

I gave a shudder of disgust.

Was it me? Had she done that just to get back at me because I wouldn't let her leave? She knew how painful I had found Valerie's cutting and burning.

“What do you do if your patient wants to leave treatment?” I asked the group. “What do you do if you just want to support her in treatment, but you find that you've become the enforcer, the one who's pushing her to stay?”
And that becomes the reason neither one of you can get along anymore?
I thought.

A veteran mother nodded. “That's a tough one,” she said. And a father shared his experience about his daughter's prior hospital stay, when he and his wife had had to stand up to her repeated attempts to leave.

Nobody could really answer my question, but they made me feel better anyway. At least I wasn't the only one dealing with this.

After a couple of hours, Elena and the other patients joined our group: nine or ten rail-thin young women with their arms around one another for support. Taking turns, they read us their own list of dos and don'ts. Elena had chosen to read out this one:

“When your patient talks negatively to you, remember that sometimes it's just the eating disorder talking. Don't react. Give her time to re-center.” She looked up at me. “For instance, if she says she wants to do something self-destructive, like stop treatment, just let her cool off for a while. She's just frustrated. She doesn't mean it.”

And the other family members shuffled in their chairs, caught my eye, and gave me a smile.

After lunch, the psychologist split us family members into two groups and paired each group with the patients who didn't have family among us. This way, we could ask questions freely without provoking our relative or hurting her feelings, and our group of patients could speak freely in return.

My group held about ten family members and four patients, none of whom we knew. But, although we didn't know them, these patients knew us very well. They sat through group therapy sessions all the time and heard one another's history over and over.

I could tell that the patients in our group felt sorry for us. They genuinely wanted to help. They sat at the front of the room, facing us, and for an hour, they did their best to answer our questions.

“Why don't you want us to give you compliments?” a friend of a patient asked. “If you've been recovering, don't you want to know that the hard work is paying off? Don't you want to hear that you're looking healthier?”

A patient with her hair back in a sandy-blond ponytail spoke up. Although she was thin, she looked athletic, like a long-distance runner.

“That's easy,” she said. “I equal good looks with my lowest weight, so if someone says, ‘Hey, you're looking great today,' in my mind, I think,
You think I look good now? You should have seen me a month ago! You should have seen me five pounds ago. That's when I really looked good
.”

“But what if you know that the person saw you a month ago? What if I say, ‘Hey, you're looking so much better now that you're at a healthier weight'?”

The girl shrugged, and her long plait of hair twitched like a horsetail flicking away flies. “That just . . . doesn't make sense,” she said. She said
this reluctantly but firmly, the way a polite Christian might react to a description of the birth of Buddha. “Even if you say that,” she went on, “you can't make me believe it. I'll think,
Yeah, but he's wrong. He doesn't remember. I looked better a month ago
. Look, I
know
I look better when I've been running my miles.”

She fell silent, and we fell silent, staring at one another across the gulf of our differences.

It's hopeless
, I thought.
There's no way across. They can't get to us, and we can't get to them
.

“What I can't handle is all the lies,” a father said. “I understand the not eating, but the constant lying—it hurts, and it makes me angry. My daughter should know that she can tell me anything by now. I'd give my life to help her. Then she lies to me over and over, stupid lies, lies I'm bound to find out are lies, like whether or not she finished her yogurt.”

There was a pause. Then the oldest patient spoke.

“Just please remember,” she said, “that we don't want the lies to hurt. It's not personal. But it's so hard to explain how this disease makes you feel. Let's say that I go out with my friends to a movie. I want to enjoy myself, relax, and forget life for a while. Most of all, I want to forget about my anorexia that badgers me all day long. But then my friends buy popcorn, and they try to get me to eat it.

“But if I eat five pieces of that popcorn, I won't even see the movie. I won't be able to think about anything else except how my self-control broke down. I'll be locked in a battle with my eating disorder voice for hours: ‘Look at you, you pig, you can't stop shoveling food in your face!' I may not sleep that night. I may have to run five miles to shut that voice up.

“But I can't tell my friends that,” she concluded. “There's no way they would understand. So I just say, ‘I already ate before I came.'”

We family members sat silent for a minute. I thought,
That is one of the saddest, most honest statements I've ever heard
.

“You've been answering our questions,” the father said next. “Is there anything you'd like to ask us?”

The patients stirred and glanced at one another. This wasn't something they'd prepared for. Clearly, it wasn't a part of past Family Days.

“I do have a question,” one of them admitted in a small voice. “Is there ever a point when you can't take it anymore? When you just say, ‘That's it!' and you stop loving us?”

And with a guilty flush, I remembered my anger:
That's
it
!

“No,” the veteran mother said firmly. “We never stop loving. Never.”

She was right. I felt it in my heart. She spoke for all of us.

After the hour was up, we filed back into the main room, and the patients joined their family members again. One girl sat across her father's lap, with an arm around him and an arm around her mother. She looked about thirteen, but Elena had already told me that she was in her twenties.

Her parents were wonderful people—relaxed, easygoing people. They looked like a pair of old flower children. Elena had told me that they'd driven across the country to rescue her from this latest health crisis. They had boxed up all her belongings and brought her and her things safely home.

Now, the three of them were relishing this moment as a family. They were all three smiling, quietly joking, glad to be together.

This is how I choose to remember this patient. She's dead now. She lost her fight with anorexia. I know that her parents grieve for her every day. But I also know, as the veteran mother said, that they will never stop loving. And I honor that love.

For the last item on the program, Elena had volunteered to be the subject of an IFS psychodrama. The psychologist explained to us that in this psychodrama, the various voices inside Elena's head would do their talking out loud so that we could all hear them. These aren't like the voices of schizophrenia, she explained: we all have different parts of ourselves that join our interior monologue. Maybe we could recognize the idea of a critical voice, the voice that comments on the things we do. Or some of us might have a scared voice, or even a happy voice.

I thought of my timid, fluttering Edward Gorey mother, trailing her handkerchief past flowered wallpaper and potted ferns:
What do we
do
?
I couldn't help wondering if anyone else in the room had a Victorian voice.

The psychologist went on to tell us that because eating disorders are so isolating, most outsiders don't have any idea how abusive and upsetting an eating disorder patient's interior monologue can be. Elena had worked
with her therapist and friends so that the different girls could portray her inner voices. That way, we could get an idea what our patients were going through.

We all scooted our chairs into a circle again, and Elena sat barefoot in the middle of the group. She looked completely calm, but I could feel myself pushing into the back of my chair, as if I were in a car that was going too fast. Flutters of worry plucked at me, and that Victorian mother inside me woke up:

Oh, no! Oh, no!

Was I ready for this? Did I really want to hear this?

Elena looked beautiful, with her long brown hair down on her shoulders and her dark eyelashes demurely brushing her cheeks. This was her territory, physical as well as mental, and she was as relaxed as I was nervous.