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

by Clare B. Dunkle

  “Oh, hey, Mom, watch this video with me,” she said when she saw me. “It’s a Beauty and the Beast Christmas special. I think you’ll like it.”

  “You know I don’t like the Beast, not once he turns into that wimpy-looking blond guy,” I said. “If I were Beauty, I’d want my money back.”

  By this time, I’d written four books with monsters as main characters. When I watched Peter Jackson’s Lord of the Rings movies and his hideous orcs came into the frame, I would feel a burst of nostalgia and affection. Oh, how nice! I would think to myself. The ugly dears look so much like my goblins!

  “I know you like the Beast better, and that’s why you’ll like this,” Elena said. “It’s from when he’s still a Beast.” So I settled down to watch the Christmas special with her. It turned out to be better than I expected.

  But as the minutes passed, I sneaked glances at Elena. She wasn’t looking so good. Her face was pale, and purple smudges had formed under her eyes.

  “Are you feeling okay?” I asked.

  “Uh-huh,” Elena said. “I just stayed up too late. It’s hard to sleep in this place. Do you know how many horror movies start in a hospital at night?”

  “That’s why I don’t watch them,” I said. “It’s crazy that you do.”

  “Yeah, well, too late now.”

  The nurse came in with Elena’s lunchtime tray, but Elena pushed it aside without a glance.

  “Isn’t that your special diet?” I prodded. “Do you want me to unwrap it for you?”

  “Once it cools,” Elena said without taking her eyes off the screen. “You know I don’t like food when it’s too hot.”

  “Hospital food is a lot of things,” I observed. “But I have never known it to be too hot.”

  “Shh!” Elena said. “This is a good part.” And we went back to watching the video. But I don’t think either one of us was paying attention.

  It had happened—I could see that. It had happened, and I didn’t know what to do. Elena was on a hunger strike. She had gone to the mattresses. She was locked in a war of wits and nerve with bullying Dr. Petras, and I couldn’t figure out how to convince her to stop.

  I had never once seen Elena back down from a fight—no matter what the cost.

  “Come on!” I pleaded after a few minutes. “If you don’t eat, you’re never going to get to come home. Please? The house is so quiet now. It gives me the creeps!”

  Elena shrugged. She didn’t try to play dumb. She knew exactly what I was talking about.

  “So come see me here,” she said firmly. “And bring nail polish next time—fun colors.”

  I didn’t answer. I was trying to think of the right thing to say, the perfect argument. If I was so good with words, why couldn’t I ever seem to find the right words to persuade this strong-willed young woman to change her mind?

  The Beauty and the Beast Christmas special ended. Mentally, I congratulated the scriptwriter who had thought of making a pipe organ into the villain. After all, a pipe organ—how gothically creepy is that?

  “Have you seen The NeverEnding Story?” Elena asked.

  “I’ve read it,” I said. “And so have you. It’s one of the most insightful allegories in all of fiction, and the best explanation of the joys and pitfalls of the creative-writing process.”

  “Yeah, well,” Elena said. “The movie’s okay. Here, pull it out of that pile there, and I’ll show you the best part.”

  I pulled out the video and put it in for her, debating what to say next. How could I talk her into eating again?

  The NeverEnding Story movie was awful. It was like watching Barney the dinosaur do Shakespeare. But maybe that was just my anxiety spoiling it for me.

  “I know you don’t want to make Dr. Petras happy,” I ventured after a while. “But couldn’t you make Dad and me happy instead? We need to be a family again.”

  “Hey, this isn’t my fault,” Elena said bitterly. “I’m not the one who messed up this family. I wouldn’t even be here if it weren’t for Valerie.”

  And at the look on her face, I fell silent again.

  If only Dr. Petras were like one of the monsters in The NeverEnding Story. If only he would act like a fairy-tale villain: “Gather all the leaves in the forest for me. You have until nightfall.” At least fairy-tale villains taxed a person’s ingenuity, and when they got defeated, they sometimes exploded or melted, or even obligingly tore themselves in half. Elena might meet one of those challenges just to show that she could and to see how creatively the villain was going to die.

  But Dr. Petras had acted like a real-world villain instead. He had said, “Do what I say because I’m stronger than you.”

  There wasn’t a snowball’s chance in hell that Elena would do that.

  Two more days passed—two more anxious, worry-racked days. I don’t think Elena ate a single bite of food. Far from looking ready to leave her hospital bed at any moment, she now looked as if she couldn’t get out of it. She didn’t try to talk much anymore. She just lay silent, a shell of her former lively self.

  Her pediatrician confirmed that she had lost weight over the last five days, since being admitted to the hospital.

  “There’s not much we can do,” he said. “This isn’t a hospital with a psychiatric protocol. We’re not equipped to force a patient to eat. I’ve ordered an IV. At least we can keep her hydrated.”

  “I know why she’s losing weight now,” I told him. “Elena has always resisted strong-arm tactics. But have the tests turned up any medical problems that would explain the weight she lost before the hospitalization?”

  “Not really,” he said. “But her EKG reading has changed, and it’s showing irregularities now. I’ve contacted the cardiology department and scheduled an echo exam of her heart.”

  The room where the echo exam took place was very dark and quiet. The only thing that stood out was the computer screen, and even that was in black and white. Grainy shapes quivered and jumped there, like some old Atari game featuring a blizzard.

  No matter what I’ve looked at on these sonogram monitors over the years—baby, kidney, stomach, you name it—not a single image has made sense. This one didn’t make sense, either. It didn’t look a thing like a heart. But as the test proceeded, I could tell that the cardiologist was becoming more and more concerned.

  “See this? That’s the septum.” She clicked keys, and little white x’s appeared. “You can see—here to here—how thin it is. And see this? See that bulge? This chamber is enlarged. Your daughter has cardiomyopathy. If her heart gets worse, it could rupture.”

  I went cold to the tips of my fingers. This was real and terrifying physical damage. One of the old ladies at church had cardiomyopathy, and she could barely walk five steps at a time. Cardiomyopathy killed people. It could kill my daughter!

  Anxious questions tumbled through my brain. How had this happened? Would it heal? What would help it heal? Would Elena live a full life? Did she really have anorexia nervosa?

  “Did anorexia cause this?” I asked.

  “I don’t know,” the cardiologist said. “Maybe. We do look for this in anorexics, but I haven’t seen a heart this bad in an anorexic before, and I’ve done lots of these exams over the years. I’ve performed this exam on patients who were much thinner than your daughter, but they didn’t have a heart like this.”

  A heart like this.

  A deadly condition!

  The cardiologist couldn’t tell me anything more. She wasn’t being cagey; she was being honest with me: she just didn’t have the answers.

  “We’re not the right kind of hospital to deal with this,” she said. “Our resources are very limited. We need to evacuate your daughter to the States and get her to a good children’s hospital, to the specialists who can run more sophisticated tests and find out exactly what’s wrong.”

  Evacuation to the States. Good! We had a plan to deal with this. I diverted all the anxiety I was feeling into working on that plan.

  I walked beside El
ena’s gurney back to the ward. We didn’t speak about the diagnosis on the way. Elena had become so passive and silent over the last several days that I didn’t even expect her to speak at that point. And me, I was in full absent-while-present mental overdrive, focusing on the plan.

  Would insurance cover Elena’s transport to the States? Would it cover mine? How long would we be gone? How soon could we leave? How much would all this cost?

  Dr. Petras met me as I was leaving Elena’s room. The cardiologist had called him with the results. I hadn’t seen him since the day he had admitted Elena to the hospital, and his friendly manner now surprised me.

  “I want to call a meeting with Elena’s entire care team,” he told me. “And I want Elena to attend. We can hold it in the ward conference room tomorrow, right here,” and he gestured toward a room we were passing. “Mrs. Dunkle, can you and your husband both attend?”

  It was nice to be asked. The last time Dr. Petras had met with us, it had been a command performance.

  “Of course,” I said. I wrote down the time, said good-bye, and drove home.

  And then I got on the phone.

  When I was in second or third grade, I read a biography of Florence Nightingale, one of the founders of modern nursing. Before I was even finished with her story, I had already bandaged up my motley collection of dolls and turned them into wounded Crimean War soldiers. In Florence Nightingale’s time, women were thought to be unsuited to nursing because of their delicate emotional natures. She had triumphed over this stereotype and epitomized action over reaction and sensible hard work over hysteria.

  Nothing about my childhood had encouraged emotional displays of any kind, but it was Florence Nightingale who taught me to be proud of this. She and my other friends from the pages of British literature encouraged me to cultivate their famous stiff upper lip. I learned from them that having a good cry was a luxury, like having a manicure or a massage. It was something to indulge in only after all the hard work was over.

  So now, having just learned that my daughter’s heart was mysteriously and perhaps irrevocably damaged, I did what Florence Nightingale had taught me to do all those years ago: I drowned my terror in hard work. And, thanks to Valerie’s crisis, I knew exactly what to do.

  The first thing I did was go to my files and pull out the big paperback booklet guide to our insurance benefits. Then I studied the index and the table of contents until I had read every benefit I could find that related to the transportation of patients.

  Yes, I knew I could have just called the toll-free number and talked to a benefits coordinator. But here’s what I also knew: sometimes those coordinators are wrong. And here’s what I knew about who has to pay the bill when those coordinators are wrong. That’s right: it’s not the insurance company.

  Once I had reviewed the guide, I called the toll-free number to double-check my research, and the benefits coordinator confirmed what I had already discovered on my own: Insurance wasn’t going to pay for that evacuation flight to the States.

  “Be sure you know who’s picking up the tab for that,” the coordinator warned me. “A medical flight with a full emergency care team can cost tens of thousands of dollars.”

  Tens of thousands?

  Stunned, I hung up the phone.

  Next, I followed our benefits system to its source. Joe is a federal employee, so that meant calling Washington, DC. I spent an engrossing half hour trying different members of the Office of Personnel Management and listening to a variety of voicemail messages. Every so often, I broke through to real people, and they were very nice and as helpful as possible. But the question of an international ambulance flight was something they couldn’t advise me on, so they kept directing me elsewhere.

  This wasn’t their fault. I knew that. For a few miserable, humiliating months, I had held a job answering phones for an electric company. The lesson I had learned there was not to take my problems out on the person who answers the phone. That never helps, and besides, it’s cruel. (I lived through some tearful moments at the electric company.)

  So now, I worked on my insurance problem with all the patience and absorbed attention of a fisherman unsnarling a bucket full of bait worms. And eventually, I wound up talking to a particular kind of expert at a particular military base somewhere, and lo and behold, he knew exactly what to tell me. (Somebody out there knows the answer to every single question—that’s another lesson I live by.)

  “Of course your daughter can take that flight,” this man told me, “and you can go with her, too. It has nothing to do with insurance. It’s part of your husband’s agreement with the government. Emergency medical transport home is one of the benefits we extend to the families of our employees overseas.”

  I was so thrilled to hear this that I instantly suspected it might be wrong.

  “Are you sure?” I asked. “Is there someplace I can read this for myself?”

  “Absolutely,” he said, and he quoted me chapter and verse of the Joint Travel Regulations. He then told me who to talk to at my local base, gave me a list of keywords to mention when I got there, and told me which form they would need to give me at the end of the process.

  I hung up the phone, immensely relieved.

  After dinner, Joe and I sat down to learn about Elena’s cardiomyopathy. We looked up as much information as we could find in our reference books and on the Internet. We weren’t able to learn much about it, but what we did learn scared us even more.

  Cardiomyopathy in children and teens was a mysterious condition. And, yes, this condition could kill.

  Once again, in order to fight down my panic, I took shelter in logic. What are the steps to dealing with a problem? Education, planning, execution. So, as Joe and I did our research, I wrote down a list of questions for the conference the next day. And that night, as I was falling asleep, I ran through that list over and over:

  Is this condition curable? Will the heart repair itself?

  If so, what will it take for that to happen?

  If not, what is the prognosis?

  What might be the possible causes of this damage? If it isn’t anorexia—and the cardiologist sounded skeptical about that—then might it be some sort of autoimmune disorder?

  Unexplained weight loss is a symptom of a number of systemic conditions. Do any of those conditions also cause heart damage?

  What kinds of tests will another hospital be able to run, and what sorts of results might they be looking for?

  As Joe and I drove to the hospital together, we talked through our list of questions again. Then I sat back and took a breath. It was all very scary, but I had the insurance issues worked out, and I had a rudimentary understanding of Elena’s condition. I knew what we knew and what we still needed to learn. Overall, I felt as well prepared as I could be for the upcoming conference.

  I wasn’t.

  Nothing in my life up to that point had prepared me for what was about to happen.

  CHAPTER TWELVE

  Dr. Petras was pacing up and down in the hallway outside the conference room. He appeared to be agitated. As soon as he saw us, he herded us into the room. The pediatrician and the cardiologist were there, but not our daughter.

  “Where’s Elena?” I said, stopping. “You said you wanted her to be at this meeting.”

  “Elena won’t be attending,” Dr. Petras said.

  “I want her to attend,” I said. “She’s almost eighteen years old. She ought to participate.”

  But Dr. Petras waved me to my seat. He remained standing.

  “It doesn’t matter!” he snapped. “There’s nothing to discuss. Elena’s getting evacuated out of here on the next medical flight to be put into a psychiatric institution in the States.”

  “Into a what?” I said. “But no—the cardiologist said she’s going to a children’s hospital, a medical facility! Why an institution? What’s going on? Has something happened?”

  Joe and I turned to the other doctors. The cardiologist just shook her head. The ped
iatrician said, “We’re sending Elena to a good children’s hospital. It’s a teaching hospital. They’ll be able to figure out what’s wrong.”

  “She’ll be better off there,” the cardiologist said next, speaking to us in a low voice, as if to exclude Dr. Petras from the conversation. “We don’t have the resources to diagnose her here.”

  “We already know her diagnosis!” Dr. Petras said loudly. “She has anorexia nervosa! She needs six to nine months of residential psychiatric care!”

  Six to nine months in a psychiatric hospital?

  My mind reeled. I could swear that the room started spinning. Valerie had been so sick, burning and cutting herself, while staff at this same hospital had sent her home time after time with nothing but prescriptions for pills. Even when she had finally overdosed—a risk to her life, for heaven’s sake!—she had stayed in the psychiatric hospital for only two months.

  But Elena—our bright, responsible, busy girl—our honors student, our arrow-straight hospital volunteer, who had a million friends and a million projects, who served as an officer of the Future Business Leaders of America—that girl needed to be locked away for half a year?

  How had this happened? For God’s sake, a week ago we were getting better!

  Logic! I needed logic. It was either that or burst into tears. “We . . . we have questions,” I stammered. “About the cardiomyopathy—about what causes it . . .”

  “That’s the anorexia!” Dr. Petras stormed. “We know exactly what caused it!”

  “But the cardiologist said . . . ,” I began. Then I looked helplessly at Joe, and we both looked in mute appeal at the cardiologist.

  “Honestly, I’d save your questions,” she told us in that same low voice, “until you can talk to the doctor who’s heading up her care team in the States.”

  “That’s right,” said the pediatrician. “I’ve written down his name for you so you can ask for him as soon as you get there.”

  Maybe because they were ignoring him, or maybe because he was finished with what he had wanted to say and had no interest in hearing from anyone else, Dr. Petras appeared to decide that our conference was at an end. He walked out of the room. Joe stayed to finish up with the other doctors, but I followed Dr. Petras.