Roll Models: People Who Live Successfully Following Spinal Cord Injury And How They Do It Richard Holicky Edited by Barry Corbet Supported by Grant #496 from the PVA Education Foundation. © Copyright 2004 Richard Holicky TABLE OF CONTENTS Acknowledgments Preface Glossary of Terms Demographics 1 Early Thoughts First Things First Ryan Odens Audrey Begay AM Hochhalter Steven Ferguson Wardell Kyles Robert Statam Patricia Rivas Ben Anderson 2 The First Years Peer Support Joel Irizarry Jason Regier Felipe Antonio Matthew Seals Ryan McLean Joel Lorentz George Taborsky Jason Graber Pat McGowan Michael Slaughter 3 Changes, Obstacles, Solutions Optimism 101 Gretchen Ryan Juan Garibay Eric Gibson Kevin Wolitzky Greg Adcock Keith Davis Angel Watson Amit Jha Joe Jeremias Karen Hwang Curtis Lovejoy 4 Finding What Works The School of Luck Richard Famiglietti Jamie Peterson Cathy Green Susan Douglas Glenford Hibbert Kevin Williams James Lilly Aric Fine Charlotte Heppner Vincent Dureau Mark Bussinger James Turner 5 Salvations, Turning Points and More Donald Collier Dan Wilkins Phillip Mann Dennis Bossman Brian Johnston Bobbie Humphreys Marina Conner Paul Herman Ann Herman Don Dawkins Fred Fay Wally Dutcher 6 SCI and Meaning 7 Summary Appendices Government benefits Model Systems Spinal Cord Injury Rehabilitation Centers Veterans Administration Spinal Cord Injury and Disorder Centers Resources PREFACE Spinal cord injury happens to people of all kinds. It doesn’t just happen to people with proven abilities who know they have what it takes to keep their heads above water. It happens to kids from slums, high-school dropouts, people with no visible family support. It happens to anybody. Some do well. Some don’t. What, if anything, do people who do well with spinal cord injury have in common? There are many who thrive without big liability settlements, vibrant health or long-term disability insurance, without an advanced degree, a good job to return to or an outstanding IQ. And what does doing well mean? Evidently, it doesn’t always mean working, bringing home a paycheck and having the usual toys. It doesn’t always mean the American dream of wife, kids and a house in the suburbs. Sometimes it means the simple pleasures of being content with life, having a measure of self-esteem and looking forward to each new day. There are countless people with spinal cord injury who live happy, ordinary lives but don’t fit rehabilitation’s traditional definition of—full-time employment, few major medical complications and fewer hospitalizations. There are also countless survivors who have thrown in the towel, who spend their days watching television and waiting to get a pressure sore. What’s the difference between these two groups of people? Is it a knack for reinvention? Is it attitude? A set of beliefs? Good habits or relentless ambition? Are those who do well just too young and naïve to know they’re not supposed to be able to live in the world and like it? What enables people to be happy? What do they have in common? I met Tom when I was in rehab. He was a C6 quad and had used a chair for more than a dozen years. Though he needed help each day, he drove, ran a business, owned his own home and ran around with more than his share of women. He laughed a lot and I never heard him complain. As I got to know him I began to suspect that regaining a life might be possible. If he could do it, I thought, maybe I could. Tom was kind enough to come around and visit from time to time and even took me out to lunch and dinner, my first real ventures into public places. He showed me that people wouldn’t shy away and that I might still have things to offer. Tom was my mentor, and that was my good fortune. He told me how to deal with government programs and insurance companies and get the benefits they owed me. He told me where to find the best deals on medical equipment and was quick with tips for finding attendant care and accessible housing. He knew the law and how to use it. He was my guide in this strange new land. Most important, he showed me that my life could be about more than just my wheelchair. He gave me hope that it could still give me satisfaction and purpose. By showing me his life and how he lived it, he gave me a vision of what my life might be. This book contains a group of Toms—young and old, male and female, quad and para, employed and not—and they can help you just as my Tom did me. These Toms were injured in many different ways, are of different races, live in different parts of the country. Most are quite happy with their lives, proud of how they’ve lived them and moving forward into the future rather than the past. I spoke to each at length, first by phone, then in person, and asked them the questions I remember having myself when I was injured plus some more that have come up since. I wanted to know the specific things they did, believed or learned that had helped them do well. I wanted to see if there was anything vaguely resembling a Seven Successful Habits of Highly Successful Wheelers. Some of the questions I asked varied only slightly—biggest fear versus biggest obstacle, most difficult things to deal with versus biggest losses of SCI. Small changes often brought out a large change in responses. None of these Toms are in perfect harmony with their disabilities. Some are still figuring things out, still getting used to their wheels and finding their way. Others have made their mark and are now concerned with what aging has in store for them. I intentionally avoided “superstars” and people who had unusual advantages. Instead I looked for ordinary people living ordinary lives, people who had successfully wrestled their demons and won their victories on their own merits. I wanted to hear how they had traversed the immense distance between where they started after injury and where they are now. I didn’t want to hear it from healthcare professionals. I wanted to get it from the horse’s mouth. This isn’t a random sample of people with spinal cord injuries. I chose people doing well. Unlike the majority of spinal cord injury survivors, many here work and many have been to college. Still, few are people of privilege and many come from humble roots. What separates most of them from many survivors is their commitment to growth and happiness. They looked at their lives after injury and made a choice to live them well. In telling their stories, I’ve tried to show what their lives are like today. Almost everyone spoke of despair and hopelessness early on; few anticipated what life could with a spinal cord injury could offer. Yet they persevered and prospered. Through them, I’ve tried to present a picture of the possible. A Glossary of Terms AB, ABs: Ablebodied people, a.k.a. nondisabled people. We were all there once. ADA: The Americans with Disabilities Act, landmark civil rights legislation passed in 1990 guaranteeing people with disabilities full and equal access to society and protection from discrimination on the basis of disability. Cath, Cathing: Catheterize, catheterizing CIL or ILC: Center for Independent Living or Independent Living Center. These are organizations that promote and enable living independently in the community. They dispense information and assist clients in accessing services and assistance programs within their communities. They’re usually government- funded but mostly run by people with disabilities. They provide their services free of charge. Chair: In this book, synonymous with wheelchair. Crip or Gimp: In-group terms used with affection by some people with disabilities, but unwelcome when used by nondisabled people. ICU: Intensive care unit. Medicaid: Federal/state medical insurance program for impoverished and disabled people. This is the insurer of last resort, and covers in-home personal care in some states, durable medical equipment in most, and prescription drugs in all. Eligibility is subject to strict earnings limits. Medicare: Federal healthcare program for the elderly and disabled. Most people with SCI who qualify receive SSDI. Medicare’s coverage is less generous than Medicaid’s and, starting in 2005, offers only bare- bones drug coverage. NSCIA: National Spinal Cord Injury Association, a nationwide SCI information and support center with chapters in many states. A good early information source. See resources for other groups that can help. PASS Plan: Plan for Achieving Self Sufficiency, a little-used Social Security program that allows recipients of SSI to work and have earnings over the limits. It sets aside excess earnings for work-related expenses, such as future educational expenses or work-related expenses like computers and vehicle modifications. PCA: Personal care assistance. PVA: Paralyzed Veterans of America SCI: Spinal cord injury. SSI: Supplemental Security Income, the Social Security Administration’s welfare program for people with low incomes. Recipients must meet strict income and asset restrictions in order to qualify, and monthly payments are very low. For many, the primary benefit of SSI is Medicaid eligibility. SSDI: Social Security Disability Insurance, Social Security’s long-term disability insurance for people who worked for some time before becoming disabled. Benefits are determined by pre-injury wage levels. This program is not based on income and has no asset limits. One key feature of SSDI is eligibility for Medicare. Section 8 Housing: Relatively inexpensive government-subsidized housing for low-income people. Only a small portion is accessible.