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

by Clare B. Dunkle

  The note of envy in her voice convinced me: this anorexia diagnosis was nonsense. Elena didn’t hate food at all. She just hated bullies trying to force her to do things. Probably if Dr. Petras had locked her up to get some rest, she would have stood in a corner of the room until she fell to the floor from exhaustion. And she never, ever would have come near the bed.

  Dr. Eichbaum was right, I thought in relief. She’s completely normal. And why shouldn’t Dr. Eichbaum be right? He was the only psychiatrist who actually took the time to run her through panels of tests. He tested Elena for hours. Dr. Petras just spent a few minutes talking to her, and that’s what the psychiatrists here have done, too.

  The conversation reminded me, though, how much Elena liked pudding. When she was little, she used to ask for the stove-top kind. So, the next time I went to the cafeteria, I looked in the refrigerator case for chocolate pudding. There was plenty of vanilla, and there was a rainbow assortment of little plastic bowls of Jell-O. But there was a gap where the chocolate had been.

  “Will you be getting more chocolate pudding today?” I asked one of the cooks. “It’s for my daughter. She’s on full bed rest, and I’d like to cheer her up.”

  “We’ll make your daughter some pudding,” he told me. “We can make her as much as you want.” And sure enough, while I was eating my dinner at my table by the two glass walls, he tapped on my elbow and handed me a plastic takeaway bowl. Inside was a generous scoop of chocolate pudding, complete with Oreos crumbled across the top.

  “How much do I owe you?” I asked, reaching for my purse. But he only smiled.

  “No charge, ma’am. You just tell that daughter of yours I hope she enjoys it.”

  When I got upstairs, Elena was still finishing her dinner. I could hardly wait for the tech to leave.

  “Check this out!” Elena said when the tech left. “They brought me my own video player!”

  “And check this out!” I said, triumphantly producing the pudding. “It’s not on the menu, but you’ve got your dessert.”

  Elena smiled. “All right, Oreos! Let’s share it. Here, I’ll scooch over to make room. You should watch this video with me.”

  So we lay side by side on her hospital bed and watched cartoons and passed the pudding back and forth. After the dark days and sad nights in the ICU, it felt amazing and wonderful to be able to share that pudding with my daughter.

  I brought Elena a pudding every day after that, and we always ate it together. It became a symbol to me of everything the psychiatrists weren’t bothering to learn about my daughter. I considered telling them about it, but I could just imagine their look of polite disbelief. If they were keeping secrets from me, then I was going to keep secrets from them.

  They think she hates food, I thought, but she’s so happy to have her dessert! This is nonsense—there’s nothing wrong with my daughter. Elena’s going to put this ghastly time behind her, and we’ll never look back. It’s just one more obstacle she’ll overcome.

  It was love—pure, devoted love—that led me to these conclusions. Given the circumstances, I know I would come to the same conclusions again. And I don’t regret that. I can’t regret giving Elena my wholehearted trust and support.

  I’m not sorry.

  But that doesn’t mean I was right.

  CHAPTER SIXTEEN

  Dr. Costello told me that the EEG test of Elena’s brain was normal.

  The heart echo confirmed the damage but also suggested improvement. Her blood values seemed to be fine as well. No big issues had cropped up.

  “So there’s nothing serious,” I said in relief. “Elena just needs to gain the weight back, and then we can go home.”

  Dr. Costello hesitated. “Well, actually,” he said with an apologetic look in his eyes, “she’s supposed to go to an anorexia treatment center.”

  “I’m glad you brought that up,” I said. “I’ve got my doubts about the anorexia.” And I explained to him my problem with Dr. Petras, who hadn’t taken the time to fully assess Elena, and the weight loss during one month, from normal to underweight, that seemed to form the entire basis for his diagnosis.

  “Her pediatrician there didn’t believe him,” I said. “And I’ve been waiting myself to see if more evidence would turn up. For instance, aren’t anorexics terrified to eat? But you say Elena’s eating with no problem, and every time I come back after her meal is over, she’s energetic and happy and full of interesting new stories she and the techs have talked about. So where is it? Where’s that new evidence of obsessive terror around food? Is there any? Or are we still basing the entire anorexia nervosa diagnosis on one low weight on a scale?”

  “Anorexia isn’t my area of specialty,” Dr. Costello said. “I have to rely on what the psychiatrists tell me. But I do see your point. We’ll keep looking and see what we find.”

  Elena spent that whole week on full bed rest, with a different tech sitting by the door every night, staying awake to watch over her. The feeding pump hummed me to sleep every evening, and each day, Elena ate her meals without complaint.

  But when Dr. Costello had a scale brought into the room at the end of that week, and Elena climbed out of bed and stood on it, I could see—we all could see—that she was still losing weight.

  I felt almost frantic!

  “Why?” I demanded afterward as Dr. Costello and I stood in the hallway together. “Why is her weight still dropping?”

  “I don’t know,” he confessed. “I thought it would be turning around by now.”

  “Just two months ago, her weight was normal!” I said. “All last year, her weight was stable. And ever since she’s been confined to hospitals and fed these special meals, she’s practically wasted away!”

  “I’m not finding any answers,” Dr. Costello said. “Nothing has turned up. A few blood values are slightly off, but it’s nothing that the anorexia can’t explain.”

  “Anorexia! How can this be anorexia? That’s voluntary fasting, right? But you said she’s eaten everything, and the feeding pump goes all night, and she’s doing nothing but sitting in bed, and the weight is still melting right off her! I called Drew Center, that eating disorder treatment place the psychiatrists recommended, and they say they won’t even take her as a patient. She’s not in the anorexic range. Not in the anorexic range! Those were their exact words!”

  “But the psychiatrists told me—”

  “What, more psychiatrists who ignore their own diagnostic guidelines? Do you know that those psychiatrists have only been to see Elena twice? How are they supposed to know what’s going on? What are they—psychic?”

  “Believe me, believe me,” Dr. Costello said hurriedly, “I’m just as frustrated as you are. But I can’t explain it, and if they can . . . Well, I think she needs to get to the experts.”

  This sounded ominous. It sounded like a place we had been before. About a week and a half before, to be specific.

  “You’re the expert,” I reminded him, and I couldn’t keep the bitterness out of my voice. “That’s why Elena’s pediatrician sent her to you: to get to the experts, he said.”

  “I mean, the experts in eating disorders,” Dr. Costello amended. “The psychiatrists at Drew Center do nothing but work with eating disorder patients. They’ll be able to rule out once and for all whether your daughter has anorexia.”

  I could see the logic of this.

  “Well, Drew Center won’t take her,” I pointed out.

  “I’ll call,” he said. “I think I can persuade them to take her. And there are some more tests I’m going to look into.”

  As Dr. Costello walked away, I tried to talk myself out of my bad mood. I reminded myself that this time a week ago, I was afraid Elena would never open her eyes again. But the news that Elena’s weight was continuing to drop frightened and baffled me. What if she had some strange metabolic disorder Dr. Costello just wasn’t catching? Was she just going to waste away?

  “So, it looks like we’ll be here for a while longer,” I told Ele
na as I walked back to my desk.

  “Mmmph,” she said without interest. “This is bullshit.” And she went back to watching her DVD.

  I sighed and opened my laptop. Elena and I didn’t have much space in that little hospital room, and I had long ago exhausted the fun of exploring the different public spaces in the building. I was homesick for Joe and my pets and our house in Germany.

  But at least I could go stretch my imagination in my various fantasy worlds. I had put together a complicated web project to occupy my time. I was moving the most interesting questions readers had asked me onto pages on my website. Thinking about those questions took me to new places. They were helping me stay calm and optimistic.

  I brought up my email and rummaged through stored messages, looking for interesting questions.

  “Why does Paul carve Maddie as a tree?” one reader had written. “That seems like a weird thing to do.”

  Paul and Maddie were characters in my Scottish werewolf book. It was such a sad, sweet love story that my heart melted as I read the question, and my bad mood vanished at once. I loved Maddie for her frank, open nature, and I loved my poor woodcarver, Paul, for the suffering he had lived through. Together, they were my favorite story couple.

  “Maddie doesn’t care for it any more than you would,” I wrote. “She’s down-to-earth and has a very different view of herself than Paul has of her.” And as I wrote, my imagination played for me a scene in the small, windowless sod house full of peat smoke.

  The wooden figure was different. It still had a tree’s crown of leaves and apples, but the trunk had turned into a pale, slim girl. Leaves grew out of her hair, and her two arms stretched out to become branches. Maddie walked toward the doorway and turned the carving in the light, studying it with wonder.

  “It’s you,” said a voice from the doorway, and she looked up to find Paul there. “At least, it looks like you,” he added awkwardly. “Do you like it? I had just finished it that first morning when I looked up and saw you talking to Ned, and then I looked down and saw you in the wood.”

  Maddie examined it. The tree girl was slender and sweet, poised and graceful. Maddie could see that she was happy by the lift of her arms and her chin. Happy to be an apple tree, happy to grow where she was planted. The tip of one toe-root just showed beneath her long skirt.

  “After I saw you,” he went on, “every block of wood I saw had you inside it.”

  “But why would you carve me? Who would want to see me?” Maddie held out the tree girl. “Just me, I’m not fancy like this.”

  Paul took the carving to look at it and then at her. She could tell that somehow he still saw the resemblance.

  “You’re beautiful, Madeleine,” he said.

  As I watched my two young characters, I felt again the love they shared—that magical first love that has such wonder in it. I’m glad I wrote their story, I thought. I’m glad I brought them to life. Maddie has such a generous heart, and Paul makes such a fascinating monster.

  “Oh, hey,” I said to Elena over my shoulder, “I forgot to tell you, but your sister says she hopes you get well soon.”

  “I don’t want anything from her!”

  The tone was so vehement that it stopped me cold. My hands froze on the keyboard. Elena had been calm and philosophical for so long now that I had forgotten she could still sound like this.

  “But . . . ,” I said.

  “I don’t know why you write to her!” Elena continued furiously. “I don’t want you to tell her another word about me! She’s the reason I’m stuck here. I’m sick because of her!”

  After all the time and all the hard words that had already gone by, I ought to be prepared for this sort of thing. But to run into such violent hostility between two of the people I loved best in the world . . .

  Without a word, I went back to my questions and answers. But the color had drained out of my day.

  “How old are Paul and Maddie in the book?” wrote another reader.

  Who cares? I thought. Paul and Maddie aren’t real. They aren’t real, and they don’t exist.

  Hopelessness welled up inside me.

  My family is broken, I thought. My family is irretrievably broken. I’m the mother, and I’ve let my children become damaged and ill. Two children in the hospital—not one, but two! Hatred and bitterness—how did it happen? What kind of mother would let that happen?

  “Hey, come watch this,” Elena said.

  “No, thanks.”

  There was a pause.

  “Don’t blame me,” Elena said, “for what my shit sister did.”

  “No, I know,” I answered quickly. “I’m not blaming you. I’m not blaming anybody.”

  Not quite true.

  Sadness welled up around me like an invisible flood. It closed over my head without a ripple.

  What kind of mother has a child who cuts and burns herself? What kind of mother watches her child disconnect from reality and jerk around on her back in a fit?

  “You know, there’s a social worker on this floor,” Elena said. “She came by to see me yesterday. I think you ought to go talk to her, Mom. I think it would be good for you.”

  That’s just like Elena, I thought. She’s the one lying in the hospital bed, but she’s worried about me. And that brought a little flicker of cheer into my heart, even at the bottom of that pool of sadness.

  Elena had so little control over her life now. She wasn’t even allowed out of bed. At least I could let her be a good influence on me. She could have a little control that way.

  Besides, talking to a social worker would be a pleasant diversion. Wasn’t a therapist like having a clever friend you paid to have coffee with? None of this So, how’s your day going? stuff—you could monopolize the entire conversation.

  “Sure, why not?” I said. “You’re probably right.”

  So I set up an appointment, and I went.

  The social worker was an ordinary-looking woman about my age who inhabited a tiny office absolutely crammed to bursting with paper. If it hadn’t been for the large sections of glass in the walls, opening onto views of the hallway, I don’t think I could have stood the place.

  She waved me to a chair. “So, tell me what’s wrong.”

  Over the next hour, it all came pouring out. Valerie’s scars. Elena’s heart. My fears about what my daughters’ illnesses meant for our family and what our family might mean for them. Before, I had always seen our family as a circle of love and safety in a possibly dangerous, possibly unfriendly world. Now I had become very much afraid that it wasn’t the world that was dangerous and unfriendly.

  “I feel so old these days,” I said. “Old and dried up. Ancient. It’s as if all the pain and stress have attacked me physically. Some days—the bad days—I can almost feel the cells shriveling and dying off.”

  “Have you cried about this?” she asked. “About your daughter in the hospital, about her blackouts and her heart? About your other daughter? Have you given yourself permission to cry?”

  I felt taken aback. I tried to be reasonable and evaluate the questions fairly, but then again—they just didn’t make sense.

  “You mean, since we got here, to the States? Well—no.”

  Obviously not, I thought to myself.

  “And why is that?” she asked.

  Why was that? Ask the small child sitting quietly in a corner of the room, working on her dot-to-dot puzzles. Ask Heathcliff. Ask Sara Crewe. Ask Florence Nightingale.

  Laughter is always appropriate. A wry comment and a quiet chuckle are welcome even beside the grave. But crying is a special dispensation extended to widows and babies. Me, I needed to be doing and planning—not crying.

  “Elena doesn’t need that,” I said finally. “She’s going through enough. And besides—well, we’re in public here!” And I tried to imagine myself breaking down in a busy waiting room. Nope. My imagination could picture monsters, but it couldn’t see this.

  “It happens here all the time,” the social worker
said calmly. “No one would judge you or bother you.”

  I didn’t answer. Inwardly, I thought, Why would that matter? This is my code of conduct, not someone else’s.

  “Why are you doing this to yourself?” she persisted. “Why haven’t you let yourself cry?”

  “Because . . .”

  But how could I explain it? Why did I even need to explain it?

  Why couldn’t this woman just leave it alone?

  “Because it’s too much,” I said at last. “I can’t even let myself touch it. All I can do is kind of stand back and look at it for a while. Think about it: think about seeing your daughter, out of her mind. Think of your baby, whose little body you cradled and protected from birth, and now you’re seeing dozens of burns . . .”

  I had to pause for a minute. But I found my stiff upper lip.

  “So, you see,” I continued, perfectly calmly and reasonably, “there aren’t enough tears for that. If I start crying, you might as well lock me up in a padded room because I’m never going to stop.”

  The social worker frowned. “You need to be able to cry,” she said.

  What happened to not judging me or bothering me?

  “I need to be able to cope,” I countered. “I could scream for the rest of my life, but how is that going to get the bills paid and the insurance arrangements taken care of? I was on the phone just this morning with our insurance company—again. I had to sort out charges from the military hospital for them. Who’s going to do that if I’m bawling in a rubber room?”

  And the thought of the insurance company acted on my torn and injured feelings like a cool menthol lozenge on a sore throat. It helped me breathe. It laid soothing coats of logic and procedure over the burning pain inside me.

  The social worker seemed to sense my change in mood. At my growing calm, she grew sterner than ever.

  “So you turn to your writing,” she said. “To your books.”

  “Well, yes,” I admitted, and the thought of my characters completed the job of helping me re-center.

  It’s not fair to Paul and Maddie to say that they’re not real, I thought. They’re as real as anything else about me. Their love is certainly just as real, that true adolescent first love that makes the whole humdrum world we grew up in somehow look different overnight. And at the thought of those two shy, serious lovers, a little glow of happiness warmed me.