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

  To all the parents who lie in bed and agonize every night, thinking,

  What should I do?

  . . . and then get up the next morning and do it.

  But especially to two of the best mothers I know,

  Grace D. and Cathy A.

  Copyright © 2015 by Clare B. Dunkle.

  All rights reserved. No part of this book may be reproduced in any form without written permission from the publisher.

  Library of Congress Cataloging-in-Publication Data:

  Dunkle, Clare B.

  Hope and other luxuries : a mother’s life with a daughter’s anorexia / Clare B. Dunkle.

  pages cm

  Summary: “Clare Dunkle seemed to have an ideal life—two beautiful, high-achieving teenage daughters, a loving husband, and a satisfying and successful career as a children’s book novelist. But it’s when you let down your guard that the ax falls. Just after one daughter successfully conquered her depression, another daughter developed a life-threatening eating disorder. Co-published with Elena Vanishing, the memoir of her daughter, this is the story—told in brave, beautifully written, and unflinchingly honest prose—of one family’s fight against a deadly disease, from an often ignored but important perspective: the mother of the anorexic”—Provided by publisher.

  ISBN 978-1-4521-2156-7 (hc)

  ISBN 978-1-4521-3697-4 (epub, mobi)

  1. Dunkle, Clare B. 2. Dunkle, Clare B.—Family. 3. Anorexia nervosa—Patients—Family relationships. 4. Mothers—United States—Biography. 5. Mothers and daughters—United States. 6. Anorexia nervosa—Treatment. I. Title.

  RC552.A5D875 2015

  616.85’2620092—dc23

  [B]

  2014047354

  Design by Jennifer Tolo Pierce

  Typeset in Adobe Caslon

  Jacket photo © 2014 by Sherjaca for Shutterstock

  Jacket design by Jennifer Tolo Pierce

  www.chroniclebooks.com/clareandelena

  Chronicle Books LLC

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  San Francisco, CA 94107

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  CONTENTS

  WORKS CITED v

  A NOTE TO THE READER 1

  PROLOGUE 2

  CHAPTER ONE 10

  CHAPTER TWO 23

  CHAPTER THREE 43

  CHAPTER FOUR 62

  CHAPTER FIVE 71

  CHAPTER SIX 88

  CHAPTER SEVEN 101

  CHAPTER EIGHT 108

  CHAPTER NINE 112

  CHAPTER TEN 120

  CHAPTER ELEVEN 125

  CHAPTER TWELVE 135

  CHAPTER THIRTEEN 142

  CHAPTER FOURTEEN 156

  CHAPTER FIFTEEN 162

  CHAPTER SIXTEEN 175

  CHAPTER SEVENTEEN 186

  CHAPTER EIGHTEEN 205

  CHAPTER NINETEEN 211

  CHAPTER TWENTY 226

  CHAPTER TWENTY-ONE 238

  CHAPTER TWENTY-TWO 254

  CHAPTER TWENTY-THREE 269

  CHAPTER TWENTY-FOUR 286

  CHAPTER TWENTY-FIVE 297

  CHAPTER TWENTY-SIX 309

  CHAPTER TWENTY-SEVEN 317

  CHAPTER TWENTY-EIGHT 326

  CHAPTER TWENTY-NINE 337

  CHAPTER THIRTY 348

  CHAPTER THIRTY-ONE 361

  CHAPTER THIRTY-TWO 379

  CHAPTER THIRTY-THREE 388

  CHAPTER THIRTY-FOUR 404

  CHAPTER THIRTY-FIVE 422

  CHAPTER THIRTY-SIX 434

  CHAPTER THIRTY-SEVEN 450

  CHAPTER THIRTY-EIGHT 457

  CHAPTER THIRTY-NINE 471

  CHAPTER FORTY 485

  CHAPTER FORTY-ONE 498

  CHAPTER FORTY-TWO 511

  CHAPTER FORTY-THREE 520

  CHAPTER FORTY-FOUR 530

  CHAPTER FORTY-FIVE 539

  EPILOGUE 555

  AFTERWORD 559

  ACKNOWLEDGMENTS 560

  Also available:

  Elena Vanishing: A Memoir,

  by Elena and Clare B. Dunkle

  WORKS CITED

  Pages 544 & 545: “We Should Talk about This Problem,” from I Heard God Laughing: Poems of Hope and Joy, renderings of Hafiz by Daniel Ladinsky. Copyright 1996, 2006 by Daniel Ladinsky. Reprinted by permission of the author.

  Page 340: Excerpt from The Mystery of Edwin Drood by Charles Dickens.

  Excerpts from Elena Dunkle’s journals. Copyright 2005–2009 by Elena Dunkle. Reprinted by permission of the author.

  Excerpts from correspondence appearing in the book have been reprinted by permission of the authors.

  Excerpt from The Hollow Kingdom © 2003 by Clare B. Dunkle. Reprinted by permission of Henry Holt Books for Young Readers. All rights reserved.

  Excerpts from In the Coils of the Snake © 2005 by Clare B. Dunkle. Reprinted by permission of Henry Holt Books for Young Readers. All rights reserved.

  Excerpts from By These Ten Bones © 2005 by Clare B. Dunkle. Reprinted by permission of Henry Holt Books for Young Readers. All rights reserved.

  Excerpts from The Sky Inside © 2008 by Clare B. Dunkle. Reprinted by permission of Atheneum Books for Young Readers. All rights reserved.

  Excerpt from The Walls Have Eyes © 2009 by Clare B. Dunkle. Reprinted by permission of Atheneum Books for Young Readers. All rights reserved.

  Excerpts from The House of Dead Maids © 2010 by Clare B. Dunkle. Reprinted by permission of Henry Holt Books for Young Readers. All rights reserved.

  A NOTE TO THE READER

  This is a true story. But it is also a work of fiction. Every memoir is.

  Every incident, thought, and work of creative imagination in this story happened as described. But my memory doesn’t work like a security camera. It records the things it notices, but it can’t necessarily tell me when they occurred. During important or dramatic events, it does a better job of saving that information, but during long, similar months, it can’t tell me exactly when minor events happened.

  The same problem occurs when I try to remember conversations. Because I work with words, I have a good memory for conversations: I easily remember the gist of what was said, and I remember the things I was thinking about as the conversation went on. My mind doesn’t record exactly what someone said, though, unless those words struck me as particularly important at the time. So, rather than stop the narrative to explain exactly what I do and don’t remember, I’ve strung together events that I do remember as accurately to my memories as possible, and I’ve filled in conversations with what I think was said, even if I’m not entirely sure.

  I have not intentionally moved any events, and I have not changed the sequence of events. I have not moved events closer together in order to make the story more dramatic. If the story says that three dramatic events happened on the same day, then, to the best of my knowledge, those three events did all happen on the same day.

  All manuscript, book, journal, and letter excerpts are real, with only clerical changes. While all the people in this book are real, all names outside the immediate family have been altered.

  A few very minor plot or physical description details have been altered solely to protect the identities of others. And very minor physical details have been created, in a few cases, where such details have been forgotten.


  PROLOGUE

  My daughter Elena called me up last week, crying. She’s twenty-four now, and she just broke up with a boyfriend she needed to break up with. It was a good thing, but that doesn’t mean it was easy.

  “Can you come out to see me?” she said. “If I had some company for a few days, I know it would really help. It could be an early Christmas present.”

  How could I resist? What mother doesn’t want to be her daughter’s Christmas present?

  Three days later, my plane landed in Texas, and Elena picked me up and drove me home. We walked around the house together and admired how she had decorated it. The house belongs to her father, Joe, and me, but Elena’s living in it while Joe and I are stationed overseas in Germany. That way, Elena has a rent-free home while she goes to nursing school, and we have peace of mind.

  After the house tour, Elena moved on to what really mattered. She introduced me to her new fish.

  My daughter doesn’t have just one aquarium. Depending on what’s going on at the moment, she has at least four, and as many as six. She can take up to an hour to choose a new fish, although nowadays, her finest beauties have hatched out in one of her own tanks. The colors of Elena’s fish are rich and brilliant: turquoise, fuchsia, lemon yellow, or blood red. Her aquariums are bold, fantastic worlds where the normal rules don’t apply. In these mysterious realms, the artwork lives and moves. It drifts through its liquid landscape, rearranging itself second by second in an endless series of fascinating patterns.

  I watched my daughter’s expressive face light up as she explained their little quirks and habits. If her fish act like pampered darlings, that’s because they are. But I wasn’t thinking about the fish. I was thinking, Elena’s thinner than she was when I saw her three months ago. She’s stressed. This isn’t good.

  When this young woman was seventeen years old, you would have thought she had it all. She was a beautiful, cosmopolitan teenager fluent in two languages and at home in two cultures: the United States and Germany, where Joe’s Air Force job had taken us when she was eleven. She made top grades among the students at the military base high school overseas, but she read her Stephen King novels in German so she could discuss them with her German friends.

  By her junior year in high school, Elena was an honors student who volunteered for hours each week at the nearby military hospital. She bought the furniture for her bedroom with her own babysitting money, she knew exactly what she wanted to study in college, she couldn’t wait to get started on her schoolwork each day, and she never got into trouble—ever.

  That’s a lot of reflected glory for a mother to bask in.

  But Elena has anorexia nervosa, a very dangerous eating disorder. Statistically speaking, it’s the deadliest of all the mental illnesses, with a death rate four times that of major depression, even when you factor in the suicides. And when I had to see my perfect honors student, howling and twisting, out of her mind, held down by two frightened nurses . . . When I sat by her frail, damaged body as she lay in the ICU, strapped to a feeding tube and a twelve-channel heart monitor . . . When I helped her withdraw from college so that she could go into a psychiatric institution . . .

  . . . that’s a long, long way for a mother to fall.

  And what has that fall taught me?

  That it hurts.

  That the first time the ax falls, it feels like a fluke. That the second time the ax falls, it feels like a curse. That the third time the ax falls, it feels like the new normal, so that, no matter how long things go well, a part of my mind is always waiting for another ax to fall.

  And that’s why, as Elena prowled from aquarium to aquarium and did her checks on her prized and petted beauties, I was doing checks and assessments of my own.

  This isn’t good, I thought. Elena is looking thin.

  Here’s something I’ve learned the hard way as the mother of an anorexic: Anorexia nervosa doesn’t just disappear. It isn’t a set of bad habits that can be unlearned, and—Whew! Glad we got rid of that! No, anorexia nervosa is a complicated ecosystem made up of nervous tics, odd compulsions, biochemical changes, neurological adjustments, obsessive anxieties, attitude issues, comfort mechanisms, and unconscious reactions. It can fade into the background for years, but when the pressure mounts, anorexia nervosa has a tendency to reemerge.

  My daughter almost certainly inherited her susceptibility to this deadly disorder. Relatives on both sides of her family tree have battled anxiety, addictions, or clinical depression. But Elena’s anorexia didn’t emerge for the first time until she went through an episode of severe trauma and suffered severe stress as a result.

  At thirteen, Elena endured violent rape. She buried it completely and focused on perfection. As long as nobody knew—as long as she was Superwoman—she could tell herself that nothing was wrong.

  At least, that was the plan. What happened instead was an eating disorder that controlled her every move.

  Torn by shame and bitterness, my daughter became a prisoner, isolated within her own body—a prison she did her best to destroy. It took everything we had and everything she had to bring her back from the brink. And even now, her recovery isn’t a place she’s reached or a goal she’s checked off. It’s a path. Elena will walk that path of recovery her entire life.

  So, while the glorious fish floated back and forth, and while Elena launched into small lectures about aquarium salt, swim bladders, and peas, I watched, and I listened, and I looked for ways to lower my daughter’s stress. Because that’s something else I’ve learned about having a daughter with anorexia nervosa. You can’t just wait and hope. You have to do.

  That’s how I ended up where I am today.

  I am driving my cat to the vet.

  I hum along with the radio as I make the ten-minute drive. In his carrier beside me on the passenger seat, Tor crouches on his haunches. But his ears prick forward, and his golden eyes glow with a drowsy, benevolent light. He is as relaxed as a cat taking corners in a car can be.

  Over the years, this lanky gray tabby cat and I have made many trips to the vet. He’s always been fragile, and a little clumsy, too, going through his nine lives at an accelerated pace. The first of his lives was already gone by the time I met him as a six-week-old kitten, with a dog’s tooth marks deep in his tiny rear end. He was alone when two tourists rescued him in a forest near France and took him to my German vet. They could find no sign of his mother or littermates.

  The dog bite quickly healed, but the trauma of losing his first family has haunted Tor all his life. He suffers from separation anxiety whenever he’s left alone. Once, when we went away for a week on a family vacation, Tor threw up so many times that he polka-dotted our new beige carpet with dozens of spots of bloody foam.

  I’ve been absent for months this time. I know my old cat has been worried. But I’m beside him now, and that’s lifted his spirits enough to start him purring in his carrier.

  We come to a stop sign, and I reach between the bars to scratch him under the chin. He closes his eyes and revels in the attention and the affection.

  Tor trusts me. He’s not worried about going to the vet.

  Tor is wise in the ways of vets. He’s been through more than his fair share of medical procedures. Once, his claw snagged on a rug and tripped him while running, and he busted several teeth. In the middle of winter, he escaped out the back door, fell into a rain barrel, and almost died of hypothermia. He needs special food for his bladder. His delicate tummy requires antacids. One time, it even had an MRI.

  Just last year, Tor almost died, and he had to go through two excruciating surgeries. They kept him alive, but they couldn’t be called a success.

  Considering how bad vet visits have been for Tor, the old cat has no reason to look so pleased. But he’s with me, his favorite human, and we’re doing something together. That alone makes all the difference to Tor. So I turn up the music as I drive, and I force myself to sing along. I focus all my attention on the road.

  Tor knows m
e well. He’ll notice if I start to cry.

  What’s happening now is nobody’s fault. If it’s anybody’s fault, it’s mine. I’m the one who moved back to Germany. Taking Tor along was never an option. When I left last year, he was happy to stay behind in the house and yard he already knew so well. And I knew leaving him was the right thing to do. Transatlantic travel is terrifying for a cat.

  But that was before the last awful surgery. That was before Tor’s recovery didn’t go well. That was before Elena called me up in tears and I saw for myself how stressed she is.

  Tor’s care is difficult and thankless these days. He leaks urine, so he can’t sit on a lap anymore or sleep on the bed like he used to. His stomach has gotten more and more sensitive, and Elena has had to give him antacid pills on a daily basis and hunt for new foods he can tolerate. As he’s aged, he’s started to get odd infections and abscesses. In spite of Elena’s worried care, he’s gotten thin and bony.

  The simple truth is that Tor isn’t happy with his new life. He struggles to keep himself clean, and that causes irritation. He misses curling up in laps and napping on the sofa, and that triggers his separation anxiety. Elena does what she can to make him feel loved and included, but it isn’t easy with his new limitations. She feels his unhappiness, and that stresses her. She wishes she could do more for him, but no one can give him what he really wants: the comfort and health he’s lost as he’s gotten old.

  Elena loves Tor. She would never for a second think of asking me to do this. That’s why I’m doing it without her asking—to carry that burden for her. Because that’s something else I’ve learned as the mother of an anorexic: This disorder isn’t about weakness or laziness. Anorexia nervosa is a burden so painful that it drives many of its victims to suicide. Life with anorexia nervosa requires tremendous courage.

  For Elena, eating is an act that can trigger panic so severe that the effects of it have landed her in the emergency room. It’s like taking an agoraphobic to a crowded shopping mall. It’s like locking a claustrophobic up in a closet. For an anorexic, eating means facing terror and despair—again and again and again.