Forward, Preface, Acknowledgements

Forward, Preface, Acknowledgements - Foreword Few things...

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Unformatted text preview: Foreword Few things are more powerful than the written word. A book can best be described as a vessel carrying the author’s thoughts, dreams, hopes, and ideas; communicated in written form. The beauty of a book is that these thoughts, dreams, hopes, and ideas then move into the public domain, becoming available for the edification of anyone who desires further knowledge. Few things are more endur— ing than the written word. Triumphing over mortality, an author’s work remains as a testament to life. With that in mind, I would like to put pen to paper and com— pose a foreword for a book that I consider a must-read. Using a masterful blend of first—person accounts, statistics, and research, Confiontz’ng Traumatic Brain Injury: Devastation, Hope, and Healing recognizes the immeasurable consequences that brain injury has on both a human and an economic scale. Not only does William J. Winslade attest to the, realities faced by all individuals and their families who have been affected by brain injuries, but he also out- lines a multifaceted plan of action to increase our awareness of what brain injury is and how we can prevent it. In a persuasive and forthright manner, Winslade details the un— fortunate lack of a general public awareness about brain injury, while explaining that this health crisis kills or disables more chil— dren and young adults than does any other single cause. To counter— act the widespread knowledge gap and pervasive ambivalence sur— rounding the subject of brain injury, Winslade encourages a shift in attitude. In Chapter 10, he mentions how Lyndon Johnson once noted that each year more Americans were killed on the highway than died in the entire eleven years of the Vietnam War. Yet Ameri— can citizens who were critical of US. involvement in Vietnam were so vocal in their protests and petitions that they changed not only public policy but cultural opinion as well. Figuratively, this is what brain injury requires—~a new march on Washington to quell the epidemic that is claiming or altering the lives of far too many. Winslade is an avid proponent of sound public policy for re— ducing the impact of the epidemic, and this agenda is a key factor in differentiating Confronting Traumatic Brain Injury from its pre- decessors. Winslade offers many concrete solutions, not only in the area of assisting those with brain injuries but also in the area of prevention: increasing investment in basic and clinical research, re— directing research efforts to look beyond medical treatment and to focus on rehabilitation, proper training of service providers, mesh— ing broad federal guidelines with state latitude in instituting pro— grams for providing and regulating brain injury—related services, establishing graduated licensing programs for young drivers, pre- venting concussions among athletes, and legislating gun control that protects our citizens, to name a few. As vice chairman of the Brain Injury Association, I am heartened to see many of the issues that our organization actively promotes Foreword . x . i i l I E § § championed here so eloquently. Confionting Traumatic Brain Injury moves beyond preaching to the choir to speak to a diverse cross— section of individuals. Brain injury should be a topic of concern for all Americans, and this book makes great strides in achieving that goal. James S. Brady Washington, DC. Foreword 0 xi I Prefizce Traumatic brain injury ranks among the most serious public health problems facing the United States and the rest of the developed world. In terms of money, emotional anguish, practical limita— tions, and lost opportunities, the costs to the brain-injured and their families are enormous and often overwhelming. And because few individuals, even with insurance, can afford high-technology acute treatment and lengthy rehabilitation, we all share the finan— cial burden. As individuals, each of us is vulnerable to traumatic brain injury. Yet as a society, we are barely beginning to recognize and discuss what is virtually an epidemic of brain injury. Public, private, and institutional responses have been at best sporadic and uneven, and at worst, irresponsible. Public awareness is the first step to reducing the damage that traumatic brain injury does to individuals and to all of us collec— tively. I aim here to promote that awareness and to recommend specific measures that we can take to combat and deal With the epi— demic. This book describes in plain language what traumatic brain injury is, how it is caused, and what can be done to respond to and prevent it. The closing chapters set out what steps I feel we must take immediately and what long—range goals I think we can hope to achieve. Although we will never eliminate brain injury, we can do much to reduce both its occurrence and its devastation. In recent years, a number of helpful volumes have been pub- lished for professionals who treat and families who live with victims of brain injuries. I hope this book will contribute something useful to these people by putting the epidemic in a larger social, legal, economic, and ethical context. But I am writing also for a broader audience. Any of us who drives a car or truck, rides a bicycle or motorcycle, plays sports, rears children, has elderly parents, or pays taxes has a vital self— interest in reducing the unacceptably high incidence of traumatic brain injury. We also share a stake in assuring that those who do become its victims receive the treatment that they need in order to reach their maximum potential for self—sufficiency. Anyone in— volved in education, health care, legislation, municipal govern- ment, or law enforcement has an even greater need to become informed on this crucial topic. Defeating the epidemic of brain injury requires specific public policy initiatives combined with sys— tematic changes in cultural attitudes and personal behavior. This book proposes and explains them. Some of my suggestions may prompt controversy. So much the better. The broader the discussion of traumatic brain injury, the greater the potential benefits for us all. Prefizre ‘ xiv ° Acknowledgments Russell Moody, whose brain injury is described later, was the inspi— ration for this book, and he brought me back in touch with my own childhood experiences as a victim of traumatic brain injury. The cooperation and generous financial support of the Moody Founda— tion gave me the time to research the subject. Both Russell Moody and his father, Robert “Bobby” Moody, IL, shared their insights into the challenges faced by the brain-injured and their families. They also made Russell’s medical and rehabilitation records avail— able to me. Their candor and their personal courage and determi— nation helped to give this book human depth. Peter Moore and Bernice Torregrossa of the Moody Foundation, along with the staff of the Transitional Learning Center, provided essential encourage- ment and information. After my own very early traumatic brain injury (which I recount in the Introduction), Dr. Max Bernauer, the staff at the hospi- tal where I was treated, and the private—duty nurses who watched over me during my recovery enabled my brain to heal. My family took care of me, paid my hospital bills, and provided the support— ive environment that a small child needs, along with good medical care, in order to recover from severe head trauma. Victor Werp and Adeline Werp provided valuable letters and other documentation about my injury and its aftermath. Numerous students, researchers, and colleagues have contributed in many ways to this book. David Barnard suggested that I par— ticipate in a conference on neurotrauma, a meeting that launched my professional interest in brain injury and prompted me to re- construct my own case. Richard Weiner arranged the CT scan and Melvyn Schreiber provided the MRI images that showed me the effects of my injury on my skull and brain. Joe Tabaracci collabo— rated with me on an early article about prognosis in head injury. The Lutheran General Hospital Department of Pediatrics, thanks to Prudy Krieger, gave me an opportunity to present some of my early work on brain injury. Howard Brody and his colleagues from Michigan State University’s Medical Humanities Program gave me an opportunity to present some of my preliminary thoughts at a summer seminar on bioethics. Considerable background material for this book was compiled by Mary Finch, Phil Head, S. Van McCrary, Kayhan Parsi, Pau Rana, and Kristi Schrode as well as other students at the Uni— versity of Texas Medical Branch at Galveston and the Univer- sity of Houston Law Center. Catherine Bontke, Howard Eisen- berg, Ralph Frankowski, Bryan Jennett, Harvey Levin, and Richard Weiner were among the specialists who helped me to learn about the treatment of traumatic brain injury. Barbara Bowers, Pam Har— mann, Katie Matlack, and Al Vaiani informed me about the emer— gency, acute, and chronic care of head—injured patients. Ron Carson, my other colleagues, and my students at the Insti— tute for the Medical Humanities continually provided stimulation, Acknowledgment: ‘xw' insight, criticism, and opportunities for conversation that made my work enjoyable and productive. The staff at the institute—espe- cially Stacey Gottlob, Sharon Goodwin, and the late Betty Herman —supported my efforts by carrying out administrative and secre— tarial responsibilities with efficiency, patience, and good humor. Mark Rothstein, other colleagues, and students at the University of Houston Health Law and Policy Institute challenged me to under— stand the legal, ethical, and policy implications of my work. Goran Lantz and other colleagues at the Ersta Institute for Medical Ethics in Stockholm, Sweden, generously shared their ideas with me. The two months that I spent at the Ersta Institute in 1993 gave me not only much-needed time for reflection about this book but also a chance to learn about how Swedish society reduces brain injury through safety measures and effective public transportation. The National Head Injury Foundation, now known as the Brain Injury Association, supplied me with much information and many contacts both when I began and as I continued my research; George Zitnay and Sue Guzman were especially cooperative. Interviews with Dan Beauchamp, Gerald Bush, Eric Engum, Marilyn Spivak, and William D. Willis helped me to appreciate the enormous ex- tent of the head injury epidemic. Many other brain—injury volun— teers and professionals, including John Banja, Walter R. M. High, Don Lehmkuhl, William Reynolds, and David Seaton, educated me about various aspects of brain trauma. Dan Fox assisted me as I thought through important problems, and he suggested several avenues for further research. I am grateful to the Rockwell Fund in Houston for essential re- search support. James L. and Charlene Pate and the Pennzoil Foun— dation provided support for research. The Rockefeller Foundation, the Greenwall Foundation, the Park Ridge Center, the Institute for the Medical Humanities, the University of Texas Medical Branch at Galveston, and the University of Texas Chancellor’s Office gen— Acknowledgment: ‘xuz'i' erously supported my organizing of an international conference on permanently unconscious patients, held at the Bellagio Conference Center in Italy in 1994. The Rockefeller Foundation also supported the work of Roger Haile, a superb and sensitive photographer who documented the recovery of the head injury victim who appears in this book under the pseudonym Donny Michaels. I am immensely grateful to this patient and to his family for sharing their experi- ences and ideas with me. Sandy Sheehy’s editorial talent and organizational genius en— abled me to convert my manuscript and notes into a coherent book. Without her contribution this project could not have been completed. Josh Dubler and Joanna Winslade offered a careful and detailed commentary on the penultimate draft of the manuscript. Their thoughtful suggestions led to numerous improvements in the text. Denise Webb’s research on legal, policy, and public health issues provided essential information; she also made numerous valuable editorial suggestions, helped to compile the bibliography, and carefully proofread the entire manuscript. Tom Curtis not only offered excellent editorial assistance in the final stages of the project but also raised key questions that enabled me to clarify my ideas. Sara Clausen and Ethan Carrier gave valuable editorial, research, and bibliographical assistance for the final draft. Marcia Winslade diligently prepared the index. Warren Carrier, Ron Carson, Deborah Cummins, Sharon Good— win, Lillian Key, Katie Matlack, S. Van McCrary, Judy Ross, Al Stern, Jack and Dolores Winslade, and Stuart Youngner read some or all of the manuscript and offered valuable suggestions. Joan Lang read and critiqued early as well as later drafts. Chuck and Muriel Lang supplied several pertinent stories about brain injury. My agent, John Thornton, gave me guidance and good advice at various stages in the completion of the book. At Yale University Press, acquiring editor Jean Thomson Black offered both encour— Acknowledgment: ' xviii ' i E l i l i agement and important suggestions for improving the manuscript at every stage. Brenda Kolb’s superb editing enhanced the flow of the text and helped me to clarify numerous details. The anony— mous reviewers for the press also made helpful comments. Throughout this project, Joan Lang and my daughters, Joanna and Marcia, gave me their continual support. They listened again and again to my ideas about traumatic brain injury. Their insightful questions, comments, and criticisms were especially valuable when I was trying to think through various puzzles and policy issues. They all contributed suggestions that made this a clearer and more readable book. Acknowledgment: o xix o ...
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Forward, Preface, Acknowledgements - Foreword Few things...

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