Riptide: Struggling With and Resurfacing From a Daughter’s Eating Disorder

Riptide

Struggling with and Resurfacing from a Daughter’s Eating Disorder

Barbara Hale-Seubert

ECW Press

ECW Press

Copyright © Barbara Hale-Seubert, 2011

Published by ECW Press

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Library and Archives Canada Cataloguing in Publication

Hale-Seubert, Barbara

Riptide : struggling with and resurfacing from a daughter’s eating

disorder / Barbara Hale-Seubert.

ISBN 978-1-55490-969-8

Also issued as:

978-1-55490-906-3 (PDF); 978-1-55022-995-0 (PBK)

1. Hale-Seubert, Barbara. 2. Erin Leah, 1976–2000.

3. Eating disorders in adolescence—Patients—Family relationships —United States. 4. Eating disorders in adolescence—Patients— United States—Biography. 5. Anorexia nervosa—Patients—United States—Biography. 6. Bulimia—Patients—United States—Biography.

7. Psychotherapists—United States—Biography. i. Title.

RJ506.E18H34 2011 618.92’85260092 C2010-906829-7

Developing editor: Jen Hale

Cover and Text Design: Tania Craan

Typesetting: Mary Bowness

To the best of her ability, the author has recreated experiences, places, people, and organizations from her memories of them. In order to protect the privacy of others she has, in some instances, changed the names of certain people and details of events and places.

To Erin Leah, My first true love

Contents

Cover

Imprint

Dedication

Foreword

Preface

The Mother Knot

Happy Days

Falling Down the Rabbit Hole

Till Love Do Us Part

Mother Load

Motherless

Four Winds

Pasta Patrol

In Food We Trust

Belmont

Therapy and Me

Good Grief

Locks and Lies

Snapshot

Pathfinders

The Picture of a Thousand Words

Jail

Madonna or Martyr

Cactus Flower

Faith and Family

Roller Coaster

Love and Resignation

False Alarm

Sam

Rock-a-Bye Baby

Riptide

Pietà

Photo Section

Acknowledgments

About the Author

Advance Praise for Riptide

FOREWORD

MARGO MAINE, Ph.D, FAED

Statistics are people with the tears wiped away.

Countless journal articles and books are devoted to the heartbreaking statistics ushered into people’s lives by devastating eating disorders. An Amazon search reveals nearly 30,000 books available through its website alone. This growing literature is full of faceless statistics warning us that eating disorders are affecting more and more people of all ages, from young children to senior citizens, of every race, socio-economic status, ethnicity, and gender, and in more than 40 countries worldwide. It describes the challenges of treatment and the unanswered research questions about its effectiveness. Riptide: Struggling with and Resurfacing from a Daughter’s Eating Disorder gets away from the numbers and puts a face on the problem — a face weeping with heartbreak.

Nothing is worse than the gut-wrenching pain parents experience when watching their child suffer. This pain is magnified exponentially when the child is no longer a child and the problem is psychiatric, as the answers of diagnosis, treatment, and a path to recovery are all so elusive. There is no lullaby nor Band-Aid, no quick fix nor clarity about how to help in these situations. Although physical illness is itself a challenge to the sufferer and family, usually the treatment options and resources are mapped out and people are able to talk about the problem and receive support. Not so when the diagnosis is psychiatric, or even more complicated, as eating disorders are, spanning both the psychiatric and physical worlds.

Eating disorders are what we call biopsychosocial problems, as they have roots in each area and manifest themselves in each realm: the biological, the psychological, and the social. They have the highest morbidity and mortality rate of all psychiatric illnesses. Even the afflicted who receive good treatment and have family support along the way may end up succumbing to the ravages of these disorders. When families first encounter the diagnosis, many feel instantly overwhelmed and defeated, while others work hard to remain optimistic that their child will beat the odds. In every case, the suffering is immense, and, all too often, it’s compounded by a lack of understanding and compassion, in both professional and personal relationships. It can be overwhelming.

Eating disorders, at least temporarily, create a cloud or a fog around the sufferer. Once it begins, the disorder seems to have a life of its own, as starvation creates an obsession with food, emotions are translated into the language of fat, self-esteem and self-image are destroyed, and personal identity becomes wrapped around the illusion of control found in eating-disordered behaviors. I have come to see the eating disorder as a life preserver — one that my patients truly feel they will drown without. The goal of treatment and the key to survival is to develop other resources to avoid that powerful feeling of terror patients experience when they believe others are trying to take their life preserver away.

For loved ones, especially parents, one of the greatest challenges brought on by eating disorders is to stay connected with this person (usually female), who now is only a shadow of her self and who rails against any efforts to break down the barrier of the eating disorder, just as anyone thrashes to hold onto a life preserver when she fears drowning. As a clinician who has specialized in treating eating disorders for the past three decades, I, too, struggle at times to stay connected, to manage my anxiety about their condition and about the likelihood I will penetrate the fog before it totally destroys her and she loses her life. I can only imagine what parents feel, as I see the pain, the confusion, the disillusionment, the guilt, and the self-doubt in my office each day.

In Riptide: Struggling with and Resurfacing from a Daughter’s Eating Disorder, Barabara Hale-Seubert discloses the painful struggle she experienced as the mother of a young woman who suffered and succumbed to an eating disorder. She offers no easy answers, but uses her own experience to help other families to cope with the emotional riptides and consequences of this illness. Her path was complicated by her professional role as a therapist, who was capable of helping so many people overcome the issues that brought them to her door, but often felt inept with her own daughter. Her strength, courage, and soul-baring honesty are amazing, as is her hope to enable other parents to survive the riptide and avoid drowning themselves. It is this kind of self-examination and brutal honesty that will get eating disorders out of the closets of shame and embarrassment and into the light of hope, understanding, and healing.

Despite the tragic loss of her daughter Erin, Barbara Hale-Seubert has found a way past her tears and heartbreak to find meaning, connection, and renewal. She shows us that facing pain is the only way through it, and that time helps to heal the weary souls of parents who have experienced a child’s life-threatening illness. Although prompted to write because of Erin’s death, Barbara is truly writing about life, embracing both her daughter’s and her own, in all their complexity. If a story can be profoundly sad, but inspirational at the same time, Riptide: Struggling with and Resurfacing from a Daughter’s Eating Disorder is that story.

An expert in the treatment of eating disorders for nearly three decades, Dr. Margo Maine is the editor of Effective Clinical Practice in the Treatment of Eating Disorders: The Heart of the Matter (with Davis and Shure), and the author of The Body Myth: Adult Women and the Pressure to Be Perfect (with Joe Kelly), Father Hunger: Fathers, Daughters and the Pursuit of Thinness; and Body Wars: Making Peace with Women’s Bodies. She is a senior editor of Eating Disorders: The Journal of Treatment and Prevention; vice president of the Eating Disorders Coalition for Research, Policy, and Action; a Founding Member and Fellow of the Academy for Eating Disorders; a Founder of the National Eating Disorders Association; and the 2007 recipient of its Lori Irving Award for Excellence in Eating Disorders Awareness and Prevention.

PREFACE

All suffering is bearable if it is seen as part of a story.

ISAK DINESEN

In an interview on National Public Radio, Augusten Burroughs said that perfect lives don’t make good stories. He felt compelled to write as a salve for his pain. If not for the struggle that called for expression, he said that writing would have been far too much work. I understand.

I was inspired to write Riptide: Struggling with and Resurfacing from a Daughter’s Eating Disorder while my oldest daughter, Erin, was in the throes of an ultimately fatal eating disorder. As a parent who is also a therapist, I was plagued by my inability to even slow her worsening condition over a 10-year period. This experience challenged my sense of control over my life, my identity as a competent and compassionate person, and the values by which I lived and defined myself. I questioned my merit, whether life was worth living, and how I as a mother could survive the life-and-death battle that was being played out in my daughter’s psyche and body. As a committed therapist whose daily work is helping others heal and grow, I felt intense shame and self-consciousness about not being able to save my own child. I now understand that many parents of eating-disordered, mentally ill, and/or chemically dependent children feel that shame.

As someone once said, pain is inevitable, but suffering is optional. I wrote Riptide to offer hope, inspiration, reassurance, and practical guidance for families with a child dealing with an eating disorder, addiction, and/or mental illness. In addition, professionals who work with these families will gain deeper understanding of these parents’ guilt, self-doubt, and destructive self-sacrifice.

Riptide is the story of my relationship with my daughter throughout her disease. Like a set of Russian nesting dolls, the story of my struggle with Erin occurred within the context of my story of myself, which was shaped by the family legacy I inherited. How I saw myself as a woman and how I related to food and my body were powerful influences on Erin’s development. My marriage to Erin’s father was part of that picture, and our divorce disrupted the stability she needed at a crucial point in her development.

And then there was the genetic tendency toward mental illness, of which we were unaware at the time, as well as the neurological impact of the rheumatic fever Erin contracted when she was nine years old. All of these factors complicated the quest for understanding that became a maze with more walls than exits.

As the years passed, I learned that the only real exit from that maze was keeping my heart open and having compassion for myself, no matter what happened. I slowly learned that being with my daughter in a loving way and grieving and letting go were essential to maintaining my sanity as hers gave way to the disease. I regressed often during this process that took years.

Despite my loving, supportive second husband and wise friends, I often felt alone — unaware of how similar my struggles were to those of other parents. Since then, I’ve learned that many others are asking the same questions I asked. As author and workshop leader Sam Keen wisely stated, The questions we ask determine the answers we get.

This book is more about identifying the questions we are asking ourselves, reframing them when they are intrinsically dead-end and destructive, and learning how to honor ourselves as we love and support our children through their struggles. When am I helpful? When am I refusing to acknowledge my helplessness? How do I manage my own emotions, especially fear, anger, and grief, so that I can make decisions with which I can live? Where does my responsibility end and my child’s begin? How do I reconcile my unconditional love with setting limits that my child may experience as hurtful or uncaring? These are some of the questions I asked myself, and it took years for me to overcome the undertow of guilt that belied the smooth surface of my calm control.

In recounting my experiences, I changed most of the names of the individuals involved and did my best to recall and record happenings, conversations, and my thoughts at the time as accurately as possible. However, my purpose is not to provide a history, but to tell a story based on actual events. In dreams and fables, myths and parables, the literal events are there to carry meaning. Similarly with Riptide, what actually happened is less important than what I told myself at the time. How those interpretations evolved as I healed and grew through deep reflection has enabled me to move on with my life.

Spiritual leader and writer Ernest Holmes advised, Refuse to carry the corpse of a mistaken yesterday. For years my heart was weighted with regret over the times that weariness, frustration, and hurt — rather than steady, soft-hearted compassion — ruled my choices. My grieving was hobbled by guilt for not having always been the best version of myself. It’s been much easier for me to make room for the imperfections of others than for mine — to encourage my clients, family, and friends to bury their corpses, even as I continued to carry my own.

My hope is that relating my experience will provide you with the comfort that you aren’t alone — especially in any feelings of helplessness and shame — and support you in finding your own internal rudder when confronted with these inevitable questions. The 13th-century poet Rumi wrote, Beyond ideas of rightdoing and wrongdoing there is a field. I’ll meet you there. This is the field in which my story stands. This is the field of the soft and open heart. As Buddhist teacher and writer Stephen Levine said, We can’t make room for someone else’s pain until we make room for our own. This book is about making room for the pain that is inevitable when your child is troubled.

CHAPTER 1

The Mother Knot

The challenge was not to do the impossible but to learn to live with the possible.

SUE BENDER

As I opened the door of Erin’s apartment on a bright summer afternoon in 1999, I took a deep breath. My 22-year-old daughter lay on the daybed in her living room, bird-like legs stretched out over rumpled sheets. She was propped up on one elbow, drawing in a sketch pad, and her ankles were wrapped in thick white gauze and bandages. I tried not to grimace.

I was used to scanning my daughter’s body for signs of deterioration, though it seemed impossible to imagine her more emaciated than she was. Functional starvation, if there was such a term, best described her condition. And now the meager flesh that remained on her ankles had been scalded a week ago when she’d dropped a pot of boiling water on the floor — undoubtedly because her arms no longer had the strength to lift it off the stove. I hadn’t realized it was quite this bad.

Erin looked up at me. They’re just not healing as fast as they should, she said, her tone resigned.

I glimpsed the edge of a raw open wound on one spindly leg. Erin was five feet tall and weighed about 60 pounds. How could her starving little body sustain the shock of these deep burns, much less keep her alive? Were painkillers at least softening the agony?

The burns were bad, but I could handle that. Injuries heal. It was the rest of her that, over the past decade of brutal anorexia and depression, left me limp. I felt as though I’d washed up on the beach after alternately struggling to pull my daughter to shore and trying to free myself from a stranglehold that threatened to pull me under along with her.

Close friends knew our family’s private pain, but the community at large could only guess at what was wrong when they saw Erin walk up Main Street, her skeletal frame somewhat disguised by baggy clothes, each step an obvious effort. She was