Hope and Other Luxuries: A Mother's Life With a Daughter's Anorexia

by Clare B. Dunkle

  As a child, Elena had been afraid of many things. Her vivid imagination had brought to life all sorts of monsters. Now, she might wake up and not know where she was. I didn’t want her to feel frightened.

  Or maybe I was the one who was afraid.

  So I stayed behind when Joe left. The ICU nurse found me a recliner chair and moved it next to Elena’s bed. I settled in to watch my daughter sleep. But I didn’t sleep.

  When we had brought Valerie to the ER after her overdose, one floor below and one year before, I had felt angry, helpless, and afraid. Now, sitting beside the silent wreck of my second daughter, I felt far beyond those things. I felt so much that it seemed as if I felt nothing at all.

  My sharp, scheming brain couldn’t offer up a plan. It couldn’t reach abstract thought. It couldn’t seem to progress beyond its immediate surroundings. It fumbled in a dreary round over the lighted monitors, the electronic beeps, the chilly air, the still form on the bed, the unfamiliar feel of the recliner chair, and back to the monitors again. The few images my imagination served up were dreary memories of these same things: hospital walls, electronic beeps, lighted monitors, chilly air.

  It was as if the entire universe had narrowed down to just this slender fragment of experience.

  On the day Elena was born, I almost died. I couldn’t stop bleeding. Not even in horror movies have I seen that much blood. The flowing red tide took everything away with it as the hours passed: my joy and my worry, my awareness of what people were doing, and my attentiveness to what they said. Color itself seemed to flow out of the world, and I lost track of the reason I was in the hospital. The next morning, we would learn that half my blood was gone.

  As that fuzzy gray day of Elena’s birth faded into shadowy night, one single solitary needle-sharp thought pierced the cotton-wool fog of my brain:

  If you fall asleep, you will never wake up again.

  That thought grew and grew until, as weak as I was, it forced me out of bed. That thought forced me to walk, barely able to see, hanging onto the handrail that stretched along the corridors.

  I staggered through the hospital halls that night after my daughter’s birth, drunk on severe blood loss. Only the handrail kept me on my feet. When I had to cross a hall, I paused to make long and dubious calculations. Would my legs hold me up while I took that many steps alone? Would the floor be cold if I fell?

  Only one image from that night is clear: I am looking through the picture window of the newborn nursery at the babies in their bassinets. Only one baby is awake: Elena stares out at the world with a look of fierce determination. It seems ominous that my new baby does not cry.

  I am standing and thinking:Does she know about me? Can she tell that her brand-new life has already gone wrong? If I die, what will happen to Elena? Who will cuddle my baby?

  In that very second, for the very first time, I felt love for this new human being. But that love was cut through with fear. My first memories of my daughter are full of pain.

  Now, as I sat beside Elena’s bed in the ICU, I remembered that night. Like fumbling fingers rubbing a worry stone, my mind kept reaching out and touching it. It was the only other time Elena and I had been in the hospital at night. In the seventeen years between these two complete disasters, she hadn’t been sick enough to need a hospital stay.

  Beeping monitors. Chilly air. Dim hospital walls. Worry and pain. My mind couldn’t process thoughts about these things. It could only stumble past them again and again, on an endless, monotonous round.

  In some dim way, I sensed that I had become impaired. Whenever the nurse came by and spoke to me, I had to think carefully before I could answer. My tongue tripped over itself as if I were drunk.

  A pediatric nurse came down from Elena’s old ward with a stack of her favorite VHS tapes. Then—and I am not quite sure how anymore, whether a nurse asked me or whether I managed to do this on my own—a movie started playing on the television monitor in the corner of the room. I don’t think Elena had any idea that the movie was on. I don’t think she stirred once. But I watched that movie. I watched it over and over.

  The movie was Peter Pan, by director P. J. Hogan. I had never seen it before, but it was as familiar to me as the contents of my purse. This was the world as I had known it in the days of my earliest childhood.

  Some of my oldest memories involve my mother and her friends talking about strange myths. To sophisticated professors, these tales were about comparative anthropology and the history of civilization itself. But to the preschool me, it was the concrete details that mattered: a gigantic warrior, towering over the battlefield, with one enormous red eye; a young girl, fleeing in terror, frozen in seconds inside a skin of bark and leaves.

  I was too young to know that these mythic events couldn’t happen. My mother and her friends discussed them as seriously as if they had. So demigods and demons and ghosts became as real to me as my own family history. To me, they were as real as the disasters on the evening news.

  When my mother’s friends disappeared from my young life, they left these strange mythical monsters behind them. I couldn’t go to those friends’ houses anymore, but I could still get to Asgard and Olympus. I played there among the warriors and gods, and they taught me their secrets. In third grade, I couldn’t have told you the rules of baseball, but I could have told you how to escape from an angry Cyclops.

  If we dream about what is oldest and closest to us in our lives, then it makes sense that I write fantasy. The people in my dreamworlds walk through mirrors and hide themselves in mist. They shape-shift and work strange spells. They are what those mythic childhood companions were: colorful and misshapen.

  Monsters and I are very old friends.

  Now, during that lonely vigil by my daughter’s silent body, Peter Pan came flying in through the window like my very own guardian angel. With him came all things magical—and to me, that meant all things familiar: mermaids and fairies, skeletons, lost children, deformed pirates, mythic warriors, and a ticking crocodile with a taste for human flesh. It was as if all the monsters in all the stories I’d ever loved had come to my rescue.

  God bless P. J. Hogan. I’ll never be able to repay him.

  The next morning, Joe showed up very early and took me for a walk outside. By then, I had recovered enough to become aware on some level that it was a beautiful day. But as the hours passed, our stricken daughter stayed out of reach. She did almost nothing but sleep, and she communicated in the vaguest of whispers. Occasionally, she opened her eyes just a crack, as if she were lying in very bright sunlight.

  Then the cardiologist stopped by to check Elena’s heart monitor, and she brought with her a sense of brisk, healthy purpose that blew into the ICU room like a strong, fresh breeze. Elena still needed to get to the hospital in the States, she said, and this episode only demonstrated that the sooner she could get to the experts, the better. Our orders had been updated to put Elena on a flight the following morning, and an ICU nurse would accompany her this time. If this problem happened again, he would know what to do.

  So it turned out that there was still a plan in place, and it seemed to be a good one. It required nothing of Joe or me, which was good because we had very little to give. The cardiologist left, but the sense of purpose that she had brought with her stayed behind and continued to blow fresh thoughts into our traumatized brains.

  Getting out of this hospital—that felt like a very welcome idea.

  Dave, the ICU transport nurse, came by to meet Elena shortly afterward. He had white hair but a youthful face and the dark golden eyes and cagey, confident expression of an alpha wolf. He talked to me for a while about his battlefield experience, about medevac flights of the past, and about the two children he didn’t get to see more often than a couple of times a year. He had been through a lot, and he loved what he did. He was glad to be able to help.

  The pediatrician came by to ask if we had met Dave. He checked on Elena, and she opened her eyes a tiny slit and gave him a half-aslee
p smile.

  “Is she still getting drugs through her IV line?” I asked. “She seems so out of it!”

  “No,” he said. “She’s had no medication since yesterday afternoon.”

  He didn’t volunteer a reason why Elena might seem so incapacitated, and I didn’t have the strength to ask. But his manner was cheerful and encouraging, and I took that gift with gratitude.

  During the two long days that Elena stayed in that ICU bed, Dr. Petras didn’t come to check on her once.

  By that evening, the nurses and I found that we had settled into a routine. It seemed as if Elena had been in the ICU for weeks instead of only a day, and what had seemed strange and ominous the previous night now felt normal and safe. Maybe tonight I could finally close my eyes and get some rest.

  But just when I was ready to nod off, a problem came up to rumple my routine. A young soldier with serious injuries needed the recliner. Did I mind trading it for a regular waiting room chair?

  Of course not! Anything to help the wounded.

  But now—how was I going to sleep?

  The waiting room chair didn’t offer much in the way of support. It was a modern chrome-and-fabric type with no arms and only a low sling-style rectangle of cloth across the back. I couldn’t rest my upper body in it at all, so I decided to borrow part of Elena’s ICU bed. The bed had bars down both sides to keep its patient from rolling out, but there wasn’t a bar near the bottom. So I pulled my chair forward, crossed my arms on the blanket by Elena’s feet, and put my head down on them, just like I remembered doing during rest time in grade school.

  My body was so tired that I immediately drifted off.

  For about five minutes.

  The ICU bed had a “smart” mattress. It was forever inflating and deflating parts of itself with purposeful breaths and long sighs, rearranging itself so that a critically ill patient wouldn’t get bedsores. And this smart mattress quickly outsmarted me. It knew that nothing heavy should be lying across its very end, below where a pair of feet should be, so it emptied all the air out of the part of the mattress I was resting on. Before long, my arms and cheek were flat against its hard metal platform, and the metal edge of its framework was digging into my stomach.

  I gave up. I couldn’t sleep sitting up in the waiting room chair, and that meant I couldn’t sleep at all. So I turned on the television, but with no sound, and I stared at whatever showed up on the screen.

  A bunch of golfers were playing a tournament in Liverpool: gray skies and a brown golf course. I watched them wander through that rough, tawny seascape in stupefied amazement. It hadn’t occurred to me before that golf courses came in brown.

  As the hours wore away, the television screen developed a hazy glow around it, until the sober-faced golfers and the tall sea grasses and wind-driven coastal clouds all blended together into a bright smear. The night began to feel like a long transatlantic flight: lights were dim throughout the quiet ICU, like an airline cabin over the ocean, and nurses slipped in and out with drinks and blankets.

  I leaned my head on the metal bars that lined Elena’s bed and counted the steady beats of the monitor. We’ll get there, I found myself thinking over and over. Even the longest flight ends.

  Morning brought a gurney into the room, and the bustle and noise of transport. But I went through it this second time on autopilot. Not until I walked onto the plane did I really register where I was. My thoughts started there because so did my fear.

  Elena was in a different place on this flight. She was on the top bunk this time. A bulky heart monitor squatted on a shelf at her feet. This time, I wasn’t surprised that she was unconscious.

  During takeoff and the initial ascent, Elena didn’t move or open her eyes, but I watched her heart monitor with obsessive dread. First, her pulse was eighty. Then it was a hundred. Then it was a hundred and twenty.

  I could feel my own heart pounding.

  What if the cardiomyopathy put Elena into some sort of crisis? What if she started howling and wailing again? Would Dave be able to handle her? Would I have to watch him try to hold her down while her eyes rolled again under half-closed lids?

  When I was in first grade, I got stung by a wasp. It was my first bewildered impression of attack and severe pain. For several years after that, I watched for wasps in the landscape with single-minded dread. A wasp in the room with me, bumping lazily along the ceiling, would absorb my attention entirely. I would see nothing else. I would hear nothing else. For hours.

  Now, I feared the hideous apparition of my flailing, mindless daughter with just that same childlike sense of alarm. Up until two days ago, it had never even crossed my mind as a possibility. Now, it was the most terrifying thing I knew.

  But as soon as the plane leveled off, Dave came to stand by Elena’s stretcher and watch over her like her own personal, faithful wolf. He was so clearly in charge of the situation that my fears rapidly dissipated. Once again, optimism flickered like a match flame in my heart.

  As bad as things have been, I’ll bet we’ve finally hit bottom, I thought. Things will get better from here.

  As my worries eased, I began to take an interest in the unusual situation I was in. Contact with Air Force bases had accustomed me to properly pressed uniforms and neatly kept beige buildings, and life on a NATO base had presented me with a fascinating assortment of camouflage patterns. But that was all very different from the sight of an actual transport of wartime wounded.

  Every new experience feeds a writer’s imagination. After two days of static, dreary awfulness, I could once again feel my writer’s mind begin to stretch itself as it explored and catalogued the scene in front of me.

  No wonder they called this the belly of the plane, I thought. It really was just a big tube. Rows of strong steel rings lay embedded in the metal floor panels, and arrays of canvas tie-down straps lay in neat coils in alcoves in the walls. Every color in the hollowed-out body of the plane seemed to have been chosen for maximum ugliness. Mustard-yellow wires snaked down the curved walls next to pale gray-white paint, and bright crimson ductwork ran next to foil-wrapped insulation panels.

  Despite the interior’s odd shape and bizarre appearance, it felt more like a room in a community center than it felt like anywhere else I’d been: like an anonymous space quickly adapted for a temporary use. The nursing staff didn’t look like nurses, either, to my untrained eye: they looked like soldiers because they were wearing their camouflage uniforms.

  The patients, young men and women from the war zones, lay on their stretchers, tucked up under dark green blankets in their upper and lower bunks. Many of them had one or more white casts sticking out from under the blanket. A couple of critical-care patients had all but disappeared under what looked like small mountains of old PC monitors.

  Despite the loud engine noise, or maybe because of it, the flying ward felt quiet. No one cried out. Nobody appeared to be complaining.

  We handful of family members who were accompanying the wounded sat bolt upright in our line of seats set into the wall of the aircraft. The seat on my left-hand side was empty. A Middle Eastern woman sat on my right. The flight crew, wearing their jumpsuits, came by to issue us sack lunches, also a green blanket of our own because the aircraft was cold.

  Somehow, despite its kinship with baby onesies and toddler rompers, the military flight suit manages to be the most macho uniform.

  Elena’s hands and feet began to dip and circle occasionally, even though Dave had loaded her up with sedatives. He was still standing beside her, watching her carefully. He had a little notepad with him, and he was taking notes.

  “What makes her do that?” I asked. “It’s what she was doing before, when they had to take her off the plane. It’s like some kind of slow-motion seizure.”

  “I don’t know,” Dave admitted. “I’ve never seen a patient do that.”

  For a while, her lazy movements held my attention and raised my apprehension again the way wasps had done in my childhood. But I was older now.
I could be reasonable. Dave was on duty.

  Once again, I took an interest in what was going on around me.

  The young wounded woman who had the bunk underneath Elena’s was tanned and muscular, with very short blond hair—almost fuzz. The side of her neck had a hole in it—not a scab or a cut but a straw-size, dried-out hole bored straight through the skin, deep into what appeared to be beef jerky. This was the site of a battlefield IV, and it wasn’t hard to see why she had needed it: an enormous cast buried her leg from hip to toes in thick white plaster.

  She told me that she was Army and that a roadside bomb had rolled her transport and shattered her leg. She knew she wouldn’t be able to return downrange, and that was a real grief to her: the members of her unit were like brothers and sisters, her constant companions for over a year, and she hated the thought of leaving them to face hardship without her help. She was upbeat and cheerful, but over and over, she worried about her friends downrange. She had left them in the lurch, she said—as if the powdering of her leg bones was a humiliating character flaw rather than a physical injury.

  The Middle Eastern woman sitting next to me looked very pretty and girlish, even though she was older than I was. According to Western culture, she was overweight, but it wasn’t that simple: her ample frame was somehow abundant and healthy, and it only added to her charm. Her husband was lying very still under one of those mountains of monitors. Only the sine waves and flickering numbers showed that he was alive. But still, the woman could smile, although her black eyes were worried. Her smile was an act of will and a beautiful thing.

  We were heavily involved then in the war in Iraq, but the woman told me she wasn’t Iraqi. I think she may have been from Jordan. Her husband had worked as a translator for the Americans for many years, and when the war came, he had felt that he should help. So he had uprooted his wife, now a grandmother, and had moved her away from her family into troubled Iraq. She was frightened from the first, but he had considered it a point of honor, she said: he had always been proud to work for the United States, and he felt sure that the Americans would look after them.