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Spinal Cord Injury a Guide Spinal for Cord Living Injury Second Edition

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Spinal Cord Injury a Guide Spinal for Cord Living Injury Second Edition Spinal Cord Injury A Guide SPINAL for CORD Living INJURY SECOND EDITION Sara Palmer, Ph.D. Kay Harris Kriegsman, Ph.D. Jeffrey B. Palmer, M.D. with contributions by John W. McDonald, M.D., Ph.D. and Cristina L. Sadowsky, M.D. the johns hopkins university press A JOHNS HOPKINS PRESS HEALTH BOOK Baltimore A Guide SPINAL for CORD Living INJURY SECOND EDITION Sara Palmer, Ph.D. Kay Harris Kriegsman, Ph.D. Jeffrey B. Palmer, M.D. with contributions by John W. McDonald, M.D., Ph.D. and Cristina L. Sadowsky, M.D. the johns hopkins university press A JOHNS HOPKINS PRESS HEALTH BOOK Baltimore Note to the Reader. This book is not meant to substitute for medical care of people with spinal cord injury, and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual and his or her physician. Our book has been written to help with that dialogue. © 2008 Sara Palmer, Kay Harris Kriegsman, and Jeffrey B. Palmer All rights reserved. Published 2008 Printed in the United States of America on acid-free paper 9 8 7 6 5 4 3 2 1 The Johns Hopkins University Press 2715 North Charles Street Baltimore, Maryland 21218-4363 www.press.jhu.edu Library of Congress Cataloging-in-Publication Data Palmer, Sara. Spinal cord injury : a guide for living / Sara Palmer, Kay Harris Kriegsman, Jeffrey B. Palmer ; with contributions by John W. McDonald and Cristina L. Sadowsky. — 2nd ed. p. ; cm. — (Johns Hopkins Press health book) Includes bibliographical references and index. ISBN-13: 978-0-8018-8777-2 (hardover : alk. paper) ISBN-10: 0-8018-8777-1 (hardcover : alk. paper) ISBN-13: 978-0-8018-8778-9 (pbk. : alk. paper) ISBN-10: 0-8018-8778-X (pbk. : alk. paper) 1. Spinal cord—Wounds and injuries—Popular works. 2. Spinal cord—Wounds and injuries—Psychological aspects. 3. Paraplegia—Psychological aspects. 4. Quadriplegia— Psychological aspects. I. Kriegsman, Kay Harris. II. Palmer, Jeffrey B. III. Title. ​ IV. Series. [DNLM: 1. Spinal Cord Injuries—rehabilitation. 2. Adaptation, Physiological. ​ 3. ­Adaptation, Psychological. WL 400 P176s 2008] RC400.P35 2008 617.482044—dc22 2007035741 A catalog record for this book is available from the British Library. Illustrations on pages 12 and 13 are by Jacqueline Schaffer. Illustrations on pages 4, 38, 68, 98, 124, 168, 200, 236, 282, and 308 are by Else Lennox. Illustration on page 244 by Edmond Alexander. Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at 410-516-6936 or [email protected]. The Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post-consumer waste, whenever possible. All of our book papers are acid-free, and our jackets and covers are printed on paper with recycled content. This book is dedicated to those who, living life with spinal cord injury or loving someone who does, shared their stories with us in the hopes of offering creative solutions, dispelling myths, and opening horizons for fellow travelers. We thank . Art . Bailey . Bella . Billy . Bob Cecily . Chelsea . David . Don Elliott . Flip . Franklin . Gwen . Hannah Jack . Jane . Jeff . Jim . Joan Lamar . Lark . Laura . Lee Melinda . Michaela . Mike Noah . Nora . Patty . Pauline . Peter Randy . Richard . Robert . Sally Scott . Sonia . Steve . Susanna . Sylvia Ted . Tom . Tricia . Vanessa* * All names have been changed to protect the privacy of individuals. This page intentionally left blank I believe our son made a very deliberate choice. That choice is the choice to be free. He’s chosen not to hide out in self-pity. He’s chosen not to hide out behind the label “disabled.” He’s chosen not to hide out in the guise of “poor little victim.” He’s chosen to be a member of his community. He is taking scary risks and those risks will help him grow From the inside out. The point is not: not being scared. The point is being scared and going through the fear. Doing what you have to do anyway. To me, that’s freedom. —Jane’s tribute to her son (see Chapter 7) This page intentionally left blank Contents Preface xi Acknowledgments xix PART I. TRAUMA, HOSPITALIZATION, AND REHABILITATION 1 1. Into the Wilderness: Trauma, Hospitalization, and Acute Care 5 with contributions by Cristina L. Sadowsky 2. Lost and Searching: Rehabilitation 39 3. Reading the Map: Pathways to Adjustment 69 PART II. ThE CHALLENGES OF READJUSTMENT 95 4. Going Home: Old Territory in a New Light 99 5. Focus on the Family 125 6. Lovers’ Lane: Dating, Coupling, and Sexuality 169 7. Life Goes On: Independent Living 201 x Contents PART III. SUCCESSFUL LIVING WITH SPINAL CORD INJURY 233 8. The Next Frontier: Spinal Cord Injury Research 237 with contributions by John W. McDonald and Cristina L. Sadowsky 9. The Journey Continues: Finding Yourself 283 10. Concluding Thoughts 309 Resources 329 Notes 341 Index 345 Preface orking in the field of rehabilitation medicine and psychol- ogy, we have seen many people grapple with physical, social, Wand emotional changes after spinal cord injury. We have seen some people overwhelmed by emotional despair or bogged down by a lack of resources to meet their physical, economic, and social needs. But we have also seen many people finish their rehabilitation and go on to live successful, fulfilling lives. For some people, adjustment to spinal cord injury is relatively smooth and easy. Others can resume a stable and productive life only after a period of emotional upheaval and economic or social struggle. The dif- ficulties presented by a spinal cord injury often stimulate a period of soul-searching and spark a person’s capacity for creative problem- solving. These processes can lead to a renewed sense of personal strength, tran- scendence of loss, and development of a more meaningful “way of being in the world.” Our experience in working with people with spinal cord injury tells us that physical and emotional recovery and successful living after injury go more smoothly when people know what to expect. Being able to rec- ognize and cope with medical and emotional difficulties, and having an idea of how to deal with changes in social relationships, really does help. In our current health care climate, priority is given to providing basic medical care and physical rehabilitation. Sometimes, not enough time and attention are given to helping people learn psychological, sexual, social, and vocational coping skills. A person may leave the hospital with xii Preface the physical equipment for a changed way of life but be unprepared for the emotional and social upheavals that lie ahead. We wrote this book as a guide for understanding and navigating the journey from the initial trauma of spinal cord injury through rehabilita- tion, return to the family and community, and development of the per- sonal strengths and talents that help ensure a successful future. We de­­scribe the trauma of spinal cord injury, what to expect in the rehabili- tation process, and how to meet the psychological, medical, social, and spiritual challenges of life with the injury. The primary purpose of the book is to help people with spinal cord injury and their families. Stu- dents in rehabilitation nursing, counseling, medicine, or physical and occupational therapy can also benefit from the information and per- sonal perspectives, which can help promote a better understanding of spinal cord injury and the recovery process. Learning to live successfully with a spinal cord injury and its associ- ated disability is a long and challenging process. Unlike most acute med- ical crises, such as a broken leg or appendicitis, spinal cord injury can- not be completely “fixed,” and its consequences do not go away once the immediate medical crisis is over. In almost all cases, even with the best medical or surgical intervention, a spinal cord injury results in some en­­ during physical disability that affects one’s life in many ways. The pro- cess of adapting to a spinal cord injury continues throughout life. If you are newly injured, this book can help you and your family pre- pare yourselves for what is to come or find answers to questions or problems that you are experiencing at this moment. If you’ve lived with a spinal cord injury for some time, this book can help you cope more effectively with emotional and social problems that surface at various stages of life. It can inform you about new technologies and medical advances and help you anticipate the challenges that come with aging. We provide essential information, but we also want to raise new ques- tions and new possibilities that you can discuss with your health care providers. The information in this book is based on clinical reports, research studies, popular articles and autobiographical accounts, individual case studies, and our own experiences working with individuals with spinal cord injury (sources used in the text are listed, by page number, in the Notes section at the end of the book). We have also included the invalu- Preface xiii able insights of people who volunteered to be interviewed for the book. They have graciously shared their fears and frustrations, challenges and triumphs, obstacles and solutions. Their practical tips for day-to-day liv- ing, their emotional insights, and their social experiences should prove both instructive and inspiring.* The book is divided into three parts. Within each part, the chapters roughly follow the chronological sequence of events and issues that arise in the course of recovery: initial injury, acute hospitalization, reha- bilitation, self-image, return home, sexuality, independent living, educa- tion and employment, lifestyle choices, and ongoing adjustment issues.
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