Hope and Other Luxuries (25 page)

But by the time I had eaten a hot meal and had a cup of coffee, I was seeing things differently. All around me, parents were wheeling their children in wheelchairs. I saw a baby with bandages and a feeding tube. As I walked back upstairs, I spotted signs for the burn ward and the oncology department.

We're the lucky ones
, I thought.
Except, there's no such thing as luck. Other parents are dealing with things that are so much worse
.

As I passed the nurses' station, one of the staff flagged me down. “Dr. Costello is looking for you,” she said.

Dr. Costello turned out to be a very short, trim man with a lean face and thoughtful gray eyes.

“I've ordered an EEG test for your daughter,” he told me, “and another echo exam of her heart. As long as she's here, she'll be on full bed rest, and the psychiatrists are putting together an anorexia protocol.”

“Do you have any idea whether something medical might link her symptoms?” I said. “The weak heart, the weight loss, and the blackouts?”

“I can't really speculate on that,” he said. “But I'll be interested to see what the tests will turn up, and I'll share them with you as soon as I get them.”

Then he hurried away.

Did I just make that busy man state the obvious?
I thought.
Yes, and he did it with good humor and patience. That's a kind man. I think I like him
.

The psychiatrists came into the room an hour or so later, and they came in a set of three. They didn't seem like individuals. They seemed like a perfect team. Only the middle one spoke, but the faces of the other two expressed calm agreement with every word.

The middle psychiatrist asked me to leave the room for a few minutes so they could talk to Elena. Then he talked to me while Elena dozed nearby. He explained about the mechanisms of anorexia. I listened with interest and tried to keep an open mind. He talked about a constant obsession with food. That didn't fit very well with what I had seen of Elena's nervous hit-or-miss eating.

“I just haven't known her to be like that,” I said. “She's never been all that interested in food one way or the other, and yes, she'll skip meals when she's under stress. But she's glad to eat when she's feeling relaxed and her favorite foods show up. She'll snack on them all day long.”

The psychiatrists listened politely but didn't respond. I got the impression that they didn't believe me. And the middle psychiatrist talked in elusive generalities, even when I tried to talk in particulars.

Anorexics rigorously dieted, he told me.

“
Is
my daughter rigorously dieting?” I asked.

The middle psychiatrist shrugged and spread his hands, as if to say,
Would she be here if she isn't?
But he didn't actually answer the question. It was as if I couldn't be trusted with what he knew, and he couldn't trust what I knew.

This baffled and frustrated me. My daughter was a minor, and I was her caregiver. If she was exhibiting life-threatening behaviors, I needed to know about them, not hear a lecture on how anorexic patients generally behaved.

“How could rigorous anorexic dieting have allowed her to reach normal weight last month?” I asked. “She was at full normal weight just one month ago. And even during last year, although she was a few pounds underweight, she wasn't in the anorexic weight range. She's lost weight faster in the hospital than I've ever known her to lose weight before. She hasn't been at this weight in years.”

The psychiatrists didn't answer me, but again, I sensed their polite disbelief. Why? I couldn't understand it. Elena's weight on a scale wasn't the hysterical imagining of a parent; I had been with her at the doctors' offices each time she'd gone in for an appointment, so I had seen for myself what her weights had been. This was data I had asked Dr. Petras to look at, too; he could have pulled it together from the data in the hospital computer. But he, too, had declined to look at the facts.

Didn't psychiatry concern itself with facts at all?

“What I'm getting at,” I said, “is that Elena's weight hasn't been within the anorexic range before, and it was normal one month ago. From what I've been able to tell, that weight range is one of the main diagnostic criteria for anorexia. So, how does the fact that she hasn't been at anorexic weight before agree with her being anorexic?”

“She's at anorexic weight now,” the psychiatrist pointed out.

“Yes,” I said, “after the stress of an enforced hospital stay during which she staged a well-documented hunger strike, followed by several days of unconsciousness, during which she could eat very little. But isn't anorexia nervosa a chronic condition? How does this concentrated, rapid weight loss match up with
chronic
? I'm just not sure what to think here. Elena's pediatrician disagreed with the diagnosis of anorexia. He told me he didn't think she had it at all.”

“He isn't an expert, is he?” the middle psychiatrist pointed out. And the two psychiatrists who flanked him nodded in perfect agreement. I waited for him to enlarge upon this point and explain why he thought the pediatrician was wrong. But he fell silent again, watching me gravely.

Oh, well. Maybe the medical tests would turn up something to explain the weight loss. In the meantime, I had other questions.

“Do you know why she circles like she does?” I asked. “These weird blackouts she's been having?” And
this
question the psychiatrist actually answered.

“It's a pseudoseizure,” he said. “It's nothing to worry about.”

“But why? What does it mean?
Pseudo
: Does that mean she's faking it? Because I think I saw her jabbed with a needle.”

“It's dissociation. It's like a form of wishful thinking. She's retreating from an unpleasant reality. She controls the blackout, but she doesn't control it consciously.”

I could understand this on one level. I had even guessed it myself. Elena was retreating from the brutal threats of Dr. Petras. She was refusing to allow them to come true in her world.

But at the same time, I couldn't understand it at all.

Elena was a girl who, at the insecure age of twelve, had gone almost alone into a foreign school. She hadn't had a single hysterical attack there. In fact, she had thrived. She had loved the challenge. She had quickly become a leader.

Something was wrong here. I knew it was wrong. The Elena who could wait out that barrage of blustering threats and then calmly sit up and dictate a packing list shouldn't have needed to shut down like this, not so disastrously or so long.

I was missing a piece of this puzzle, a piece that would bring it all together.

“But
why
?” I asked the assemblage of psychiatrists again. “How did this happen? Never in her entire life has Elena done this, or anything even remotely like it. She's never passed out, never had fainting spells. This is a child who doesn't stay in bed even when she's sick!”

Once again, the psychiatrists didn't answer. They just gazed at me impassively. If they had any idea, they were keeping it to themselves.

“We're putting your daughter on an anorexia protocol,” the middle psychiatrist said next. “Your daughter will have her meals brought here, and she'll eat them under supervision. Her output will be measured, and at night, the feeding pump will feed her while she sleeps. A sitter will be staying in the room to watch her.”

“Oh, now that's good news!” I said.

I wasn't at all convinced that Elena had anorexia nervosa. But this I did know: Elena certainly had a problem with eating meals in a hospital. Now she could finally put on the weight she had lost, and in the meantime, the medical doctors could run their tests and find out if something serious was wrong.

We've hit bottom
, I thought hopefully as the set of three psychiatrists walked away.
Maybe we'll have to be here for only a week or so
.

As that first day passed, Elena began to spend more time awake. She still fainted and circled from time to time, and she gave the nurses several more shocks, but overall, as I lounged on my foldout bed and caught up on my own rest, nothing disturbed my drowsy optimism. I reminded myself:
We're the lucky ones—except, there's no such thing as luck
. And I fell asleep to the soothing rhythm of the feeding pump.

The next morning, Elena was awake before I was, flipping channels on the television. That cheered me up immensely. Dr. Costello reported that she had been doing very well eating her meals and that none of the medical tests had turned up anything serious. That, too, was a huge relief.

“So, about that anorexia diagnosis,” I said cautiously after the doctor left.

“Bullshit!” Elena said in such a firm tone of voice that I didn't ask further questions.

She has so many different teams of doctors and students coming by to question and poke and prod
, I thought.
There's a sitter in the room while she sleeps, and techs are watching her eat every bite. The least I can do is show her a little respect and give her a little space. There's little enough privacy here
.

By the following morning, the staff and I had formed a routine. As soon as I saw the techs show up with Elena's meal, I would grab my book and my purse and leave the room. I would go eat in the cafeteria, send a couple of emails at the library, and walk the halls and stairwells for exercise. By the time I got back, Elena would be in bed again and ready to tell me the latest gossip she'd learned. Then she flipped channels while I sat at the desk by the window and updated web pages on my laptop. All in all, it made for a pretty satisfying day.

I love routines. It's an important part of who I am. I love patterns of all sorts. I love learning foreign languages because each sentence is like a little puzzle, and only certain patterns can unlock it. I love art and architecture because their composition follows certain rules; I once read an entire book devoted to stairs. I love poetry because most poems are about comparing things that seem to have nothing in common and showing how they match in some unexpected way. I love metaphor and simile and certain beautiful shapes of English sentences, as well as flowers and the leaves on trees.

The house I grew up in was chaotic and disorganized. For years when I was young, my own bedroom was a jumbled heap of treasure and trash mixed together. Everywhere I went were toppling piles of books and papers, and if I needed something specific—say, a pair of scissors—I might have to search for a good quarter of an hour.

During the long summer days, I would complain to my mother: “There's nothing to do.”

“Go clean your room,” she would always answer. But that was only a joke. None of us ever cleaned our rooms in that house. My oldest brother had dismantled so many computers at his desk that his floor was thick with springs, nuts, and tiny snippets of copper wire. The shag carpet in his room actually crunched.

But one particularly boring day when I was about eleven, I took my mother's advice. And I did it. I cleaned my room.

The experience I went through compares to what gets shown on those programs about hoarding. My room was so packed, I had to have trails through the sloping mounds of rubble, and even those trails didn't reach bare carpet. Over three days, I cleaned my way down through layers of trash, going further back in time as I worked. I felt like an archaeologist uncovering a hidden city.

By the time I was through, I had stuffed six construction-size trash bags full to bursting with the trash from a ten-by-twelve-foot room.

That three-day cleaning orgy is one of the most empowering experiences I have ever lived through. It brought me, as pure discovery, the
blinding realization that clutter had never made me happy. I realized that I'd much rather have a few possessions in their proper places than lots of things jumbled in a pile. I cherished this new understanding of myself, and I've never looked back.

I love knowing that my belongings are where they belong. I love the patterns I've built into the rooms of my house and the sections of my day. No matter where I go, I immediately unpack and start looking for new structures and new routines. They center me. They bring me their own kind of comfort.

By Day Three in the children's hospital, my routines were firmly in place, and the terror of the ICU experiences was starting to fade. The results of the various medical tests were reassuringly normal, and Elena was acting reassuringly normal as well. Thinking too much about the past or the future still brought more pain than I could handle, so I focused on keeping myself in the moment and letting my injured soul heal.

When the techs showed up for lunchtime, I said good-bye to Elena and hurried off to “my” table in the hospital cafeteria, the one where two glass walls met and displayed the widest view of sky and lawn. It was the closest I came to the outdoors during my days there. The hospital was like a biosphere.

As I ate, I let myself get caught up in an interesting science fiction short story I was reading. Venice had drowned, and the main character took tourists on dives through the buildings resting beneath the shallow sea. I thought about the glorious churches I had seen in Venice. Then I imagined them sunk in an indigo-gray twilight, with underwater weeds wrapping the marble funeral figures, while schools of fish swam over the mosaic floors.

Short stories are a wonderful gift. Each one creates a perfect little world, like a scene inside a snow globe. Then my imagination can fill it out and play with it to my heart's content.

When I got back to the room, Elena was watching a talk show on television. All the panelists seemed to be crying and yelling at the same time.

“How was lunch?” I asked her.

“Great!” she said. “Did you know that they had a possessed girl in this ward a couple of years ago? Things would fly around the room, even though the girl was tied down to the bed. The parents insisted that it had to be some kind of medical condition, but the doctor sent her home after a couple of days. He said, ‘Look, I think you need a priest.'”