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

by Clare B. Dunkle

  The enemy had lain in wait for him and caught him. Whatever they had done to him had been very bad. Fortunately, his American commander had lived up to that good man’s trust and code of honor. He had made this flight happen by sheer force of will, and the medical care in the States, too, when bureaucrats in Washington had tried to prevent it.

  While the woman was telling me this, Elena stirred and mumbled. Dave leaned over to listen but then looked at me with a shrug. So I stood up and leaned my ear close to my daughter’s lips to try to make out the words.

  “Makeup bag,” she was whispering. And her emaciated, birdlike fingers were plucking at the blanket, searching.

  This bag and her glasses were the two things Elena had kept by her pillow during the whole stay in the hospital. Her black makeup bag seemed to have become some kind of security blanket: she spent long hours with it clutched in her hand. Now I found it for her, a few inches away from her fumbling fingers, and instantly, her uneasiness subsided.

  Very, very slowly and mechanically, she unzipped the zipper and felt through it. She didn’t even open her eyes. Then, very, very slowly, she pulled out her powder compact and began patting its little round sponge across her face.

  She never once looked up at us. She didn’t seem to be awake. But she thoroughly, painstakingly powdered her face, replaced the sponge, put the compact away, and zipped the bag shut. Then she unzipped it again, felt around, found the compact, took out the sponge, and powdered her face again.

  She did this over and over.

  As I watched her, the tiny flame of optimism in my heart guttered and went out. Who was this skinny young woman? I didn’t know this person at all. My daughter—my ally—my friend!—where was she?

  The Elena I knew didn’t back away from a fight. She loved to go up against the mighty. Dark eyes dancing, wry smile on her face, she found humor in the most unexpected places. What had happened to that bright, witty girl? Was she ever going to come back?

  I felt a rustle in the seat next to mine as the Middle Eastern grandmother leaned toward me. “What is wrong with your daughter?” she asked me kindly. “Such a pretty young girl!”

  “Her heart,” I answered. “Something’s wrong with her heart.”

  As if it could really be that simple.

  CHAPTER FOURTEEN

  I couldn’t sleep on the medevac flight. Seats embedded in the walls of an airplane hull don’t recline. By the time our plane landed in the States, I hadn’t slept in about thirty-six hours.

  But when they let down the big ramp at the back of the airplane, the sunshine revived me, and an ambulance waited on the concrete only a few steps away to take Elena and me to the children’s hospital.

  I had no idea where I would be sleeping that night. I had been in this city only once, at a conference downtown. It’s on the East Coast, thousands of miles away from my home in Texas.

  Normally, this would be worrying me. I would be asking questions and trying to put together a plan. But the stress of the last few days had slowed me down. I couldn’t put together plans anymore. So I rode in the front seat with the ambulance driver through sunlit streets, and I gave no real thought to where we were going.

  The golden light of late afternoon sparkled off the windshield and the stones in the roadway. Everything will be all right, those hypnotic sparkles seemed to say. Don’t worry. It’s all taken care of.

  We pulled up to a special entrance and almost immediately stepped into a large elevator. I followed Elena’s stretcher down wide bright hallways and into her room. After the stark, utilitarian ICU back in Germany, this hospital room seemed almost pretty. It had a big window partially covered by a dark blue curtain, and another curtain beside the bed, with pastel fish swimming across it. Accustomed to double-occupancy rooms in other hospitals, I was happy to discover that this room held only one bed.

  While the techs settled Elena in and hooked her up to a new set of machines, I wandered over to the window. A small desk and office-style chair were there, pushed up against the wall, and a low, comfortable- looking foam chair occupied the floor beside them. I sank down onto the foam chair with a feeling of relief, leaned my heavy head back into its softness, and watched the parade of nurses, doctors, students, and techs come by to check on my daughter.

  The change of venue seemed to have been good for Elena. She was actually half awake now. She still kept her eyes slitted against the light, but she was talking in a low voice and even joking a little.

  I felt myself sliding closer to sleep. Life is good, I thought.

  Elena’s parade of visitors comprised every ethnicity and skin tone, from rich, deep ebony to warm coffee brown and light olive tan. This is America, I thought as I drowsed on the foam chair. This is one of the most wonderful things about America. And, even though I was thousands of miles away from my own state, I thought, This is home. I’ve come home.

  A nurse approached me. “Will you be staying with your daughter?” she asked.

  I roused myself to answer. “I’d like to stay as long as I can. I don’t know what your policy is on that. But I do need to get my hotel sorted out. Do you know where I can get a list of hotels nearby?”

  “This is a children’s hospital,” she said. “We expect a parent to stay in the room. You’re welcome to stay if you like.”

  “For the night?” I asked, feeling confused and a little stupid. “But how—where can I sleep?”

  “For as long as your daughter is here,” she answered with characteristic patience. “That chair you’re on folds out into a bed.”

  A bed! All my remaining problems, solved in one friendly sentence. I found that I couldn’t speak. I actually couldn’t speak. My eyes were full of tears.

  The nurse understood. She didn’t wait for me to answer. She said, “I’ll bring you sheets and a pillow.”

  A bed! I washed my face, spread out the sheets, took off my shoes, and lay down. A bed. A horizontal surface! My exhausted body sagged into the cushions, and I lay there, happy beyond all expectation of happiness at being horizontal at last.

  “Elena,” I heard the nurse say. “Elena?”

  Her tone of voice prickled through my peaceful drowsiness. Her tone of voice was distressingly familiar.

  “Elena!”

  I dragged myself up from the foam mattress and came over to the bed.

  The nurse was rolling my daughter back and forth. “Answer me!” she said loudly. The nurse was doing things, hurried things: patting and prodding. Then she hit the alarm.

  Instantly, the room was full of staff. “She won’t respond,” the nurse told them. “Elena? Elena!”

  Half asleep, half petrified, I tried to gather data. No, Elena’s heart hadn’t stopped: her monitor still sounded the steady, reassuring beep of the heartbeats. I tried to take in the details of the scene, but the details were eluding me. Was that a needle in someone’s hand, or was it just a pen?

  “Elena!” the person said, stabbing it at her arm. “Elena, wake up!”

  “Get her to CT scan,” ordered a firm voice. “Now!”

  Then a gurney was in the room, and the gurney went rushing out the door. I just had time to slip on my shoes, grab my purse (why my purse?), and follow it. The hallway had no more golden sunlight in it, or kind faces, or rich colors. It was grim and gray and poorly lit, and I had done this before—oh, God! I’d done this before!

  Then I was standing on the other side of a glass wall, locked outside, while a big machine ran tests on Elena’s brain. What was wrong? Was my daughter dying? Was she dying?

  A technician came out. I saw no face. I only heard a voice. “The CT scan is normal,” the voice said.

  “Why?” I asked. “Why is she doing this? What’s happening to her?” I wanted to grab him and make him look me in the eye, but there seemed to be no faces anymore.

  “I’m afraid I can’t answer that,” said the voice.

  Now I was shuffling after the gurney again, down more half-lit, blurry hallways. We crowded into a bi
g elevator with shiny white walls, and I couldn’t see the lights that told the floors. That’s when it hit me: my contact lenses were in their case inside my purse. That’s why nobody had a face anymore.

  Elena’s gurney stopped in a vast room without edges that I could see. A white shape detached itself from the vague scenery and approached me.

  “You can’t stay here,” the shape told me. “No parents are allowed in the ICU at night.”

  Completely bewildered, I tried to process this unexpected information. My brain felt for the edges of this new obstacle, but nothing like a useful idea came back. I couldn’t stay here: a big blank wall that my thoughts couldn’t get past. Dead end. It was a dead end. I was at the end.

  “Where can I go?” I blurted out. “Where do I go?”

  “There are waiting rooms and sleeping lounges,” answered the shape. Then it walked away.

  I was standing beside the gurney. The only thing my poor eyesight could decode was the still form lying on it. Only my sleeping daughter had a face, half bad vision and half good memory: that face I had known and had watched for every quicksilver change of mood—for how many years now?

  Forever.

  That face was the only familiar thing left in my scary world.

  I leaned in, close enough to see the face clearly. My sparkly daughter. My youngest child. But the face didn’t move. It didn’t respond.

  I didn’t think I could bear it. My heart was going to break.

  “Elena,” I whispered. “Elena! Please come back.”

  My daughter didn’t stir. She was breathing quietly, frowning slightly: still, remote, and utterly impassive.

  I couldn’t help myself. I started to cry.

  “Elena, please don’t leave me like this!” I whispered. “I’m alone here. I’m all alone. Please don’t do this to me. Please don’t leave me here alone.”

  Elena’s eyes didn’t open. But she rolled over, like a sleeper who has been disturbed. One thin hand reached up to touch my face.

  Then the white shape was back. “You need to leave now,” it said.

  So I went.

  I blundered out into deserted hallways, where featureless black night pressed up against the windows. Somewhere in this building was a foam bed with sheets on it, all made up for me, but I had no idea where that foam bed was. It didn’t occur to me, in my sleep-deprived state, that I could go back to that room and that they would let me sleep there, even though Elena was somewhere else. It didn’t occur to me that I could go to the front desk and ask for my daughter’s room number. I was beyond such practical thoughts.

  So, once again, I wandered hospital halls, as I had done on the night Elena was born. I met no one. I recognized nothing. Nothing disturbed the misery of that journey.

  Dark glass windows lined the wall to my left. Night. I glanced outside. But I wasn’t looking outside, I was looking inside, into an unlit room. My bad eyes could just make out rows of foam chairs like the one in Elena’s room by the window.

  For a little while, my slow-moving brain computed. Then it spit out an actual thought:

  This is a sleeping lounge. It’s here for people like me.

  I found the door and tiptoed inside.

  One other person was using the room. A man lay cocooned under a dark blue blanket nearby, on a foldout chair of his own. He had the blanket pulled up over his face. I tiptoed past him, found stacks of those same blue blankets near the wall, and located a pile of pillows as well. I took a set, tiptoed to a chair that seemed a suitable distance away from the sleeping stranger, and arranged myself for the rest of the night.

  My waistband pinched. I hadn’t taken off my shoes. But I couldn’t do anything about that now. I had gone as far as I could. I rolled onto my side, hugged my purse like a teddy bear, and closed my eyes.

  No one was there for me—not my family and not the collection of kind staff members I had left back in Elena’s hospital room. That hospital room now seemed like a star hovering in the dark sky nearby, and it formed a constellation with the other star, the room without edges that held Elena’s motionless body. I felt those stars, not intellectually, but viscerally, as points of reference toward which I could navigate. But my exhausted brain and body both agreed: I had no strength to reach them. Not anymore.

  Those stars were sealed off from me. I would find no comfort there. So, in a last blind, muddled attempt to shield myself from bone-shaking loneliness, I reached into my mind, toward the characters who had been my friends and companions over the years.

  But even my characters wouldn’t meet me halfway. They stood around the walls of the pale gallery of my imagination, half wax doll and half astonished, so influenced by my own state of shock that for the first time, they had no life in them.

  Only Marak, the old, ugly goblin King, the oldest of my character children, still had the strength to come to my rescue. Only Marak, that brilliant, pitiless schemer, still had a mind of his own. He assessed me through his tangle of rough, striped hair, slightly amused and a little worried and very, very wise. Then he came and lay down beside me and wrapped his strong, bony arms around me, and I could feel his hands with their knotted fingers clasping my own hands as they clasped my purse.

  I’m safe now, I thought with more optimism than logic. Marak will protect me. He’ll do the planning for me. That brilliant mind is never without a plan for long.

  I closed my eyes and sank without a trace into the dark, sad, featureless night.

  CHAPTER FIFTEEN

  When I woke up, both the goblin King and the sleeping man were gone. The man had left his wrinkled blanket behind on the foam chair like a cast-off cocoon, so I did the same with mine and stumbled off to find a sink where I could wash my face.

  Blurry people were in the halls now, and the hospital had a different tempo than it had before, a quicker step and more noise. Sure enough, I discovered through a line of square windows that the sun had come back. It lit up a vague gray wilderness of roof.

  In the restroom, the cold water felt bracing and wonderful against my face. Then I put in my contacts, and the world became a manageable place again, and the insurmountable difficulties of the night before resolved themselves almost automatically. There were signs in the hallway. I could read them now. There was a sign for the ICU. I followed it to the big white room that held my daughter.

  This time, I was cheered to learn that I would be allowed to sit by Elena’s bed. But when I saw her, that sense of cheer froze at once. Elena looked no better. She lay inert on yet another special ICU mattress, her head and hands rocking and gently circling.

  “Elena,” I said. “Hey, Elena! Are you awake?”

  But my daughter didn’t respond.

  Maybe she would never respond again.

  I sat down in an empty chair by the head of the bed and watched Elena’s hands swing slowly on the pivots of their wrists. Every now and then, they caught the IV line and gave it a jerk. I saw that the IV had been moved during the night. The old site was bloody under a clear bandage.

  “How did the night go?” I asked Elena’s ICU nurse.

  The nurse was sitting in a chair by the foot of Elena’s bed. She was young, overweight, and annoyed. She grumbled out a noncommittal reply that didn’t translate into words. Maybe she didn’t like visitors near her patients.

  “Elena,” I murmured again to the silent form on the bed. But again, there was no answer. Elena had been in bed for ten days now. Maybe she would never get out of bed again.

  We were in a very large square room with a nurses’ station in the center and hefty ICU beds ranged around the walls. A couple of pastel curtains on either side of each bed gave the illusion of privacy, but nothing screened the beds off from the nurses’ station in the middle.

  I sat quietly and watched the staff bustle to and fro past the end of Elena’s bed. It was better than looking at my unconscious daughter.

  It’s true, I thought, insofar as I was capable of thinking. It’s true: we do have souls.

&nb
sp; I was thinking this because I could feel mine hurting.

  My soul felt like one large, soft bruise. It was a diffuse, gentle ache that extended up my neck to the base of my skull and down both arms into my hands. My ribs cradled my aching soul, which swirled around my spine like a cloud of tears and drooped down to my knees. My feet were soulless little machines, but the rest of my body wrapped up and hid away my damaged soul.

  Maybe Elena would never laugh again. Maybe she would never tell me another story. Maybe I would never again see her eyes go wide with mischief as she told me, “Guess what!”

  “You have a merry heart,” Shakespeare’s prince tells Beatrice. Both Valerie and Elena had been born with merry hearts. I thought about all the times they had torn through the house, shrieking with laughter. They had made me laugh thousands of times.

  One Halloween, a large plastic tarantula had found its way into our house. It was vividly realistic. Immediately, the girls adopted it, and it went away to live out innumerable fantasies on the same shelves that held their stuffed animals and model horses.

  I walked by those shelves one day to find the tarantula transformed. A multicolored silk sash decorated its waist. All eight legs ended in bracelets of gold or bright beads.

  “What’s up with the tarantula?” I asked the girls.

  “He’s a gypsy!” they said.

  “He’s a gypsy spider.”

  The memory made me smile, but I knew better than anyone that imaginations like that come with a danger of their own. I remembered my days lost in Marak’s thick, tangled forests, and the days I’d spent walking with ghosts in the House of Dead Maids. And I knew this: Elena didn’t need reality. She had a storyteller’s other hidden worlds to escape to.

  “Wake up,” I would tell her in the morning. “Time for school.”

  “Not now,” she would say. “I just need to finish this dream first.”

  Elena’s dreams were glorious.

  Where was she now? What dream was she in? I sat and looked at my broken daughter. Long, long black lashes lying against fragile olive-shadowed skin. Long child-thin arms lying over the blanket. Stern expression. No movement. The barest rise and fall of breath.