A book, like most projects, is a team effort. I was very fortunate to have an excellent team who have worked tirelessly to help me physically, mentally, and emotionally, to maintain my dedication and determination to finish this book. It has taken five long years from start to finish, and I have many people to thank for helping me cross the finish line.
First, the beginning. While I was lying in the ICU, unable to move or talk, I had plenty of time to think. I developed the framework for a book that would be one part autobiography, one part medicine, and one part guide to the mental and emotional challenges that you face recovering from a severe neurological injury. Three years later, I had the time, energy and enthusiasm to begin writing. I discussed my ideas with my therapist, Alice Rubenstein, who connected me with Dr. Julie Silver, a rehab specialist and researcher who taught in the Writing, Publishing, and Social Media for Healthcare Professionals course at Harvard Medical School. I emailed her with my idea and asked if she would discuss it with me. To my surprise, she answered immediately and positively. But, when I finished presenting my three-part idea, she told me that I had committed every sin a first-time writer could commit. She then advised me to write a self-help book instead. And so my journey began.
My family has been the bedrock of my recovery and has provided input into the book at every stage. My wife, Dr. Coral Surgeon, has been the sounding board for every chapter that stymied me. More importantly, she has provided a female perspective and has epitomized the fine line between caregiver and spouse. I cannot thank her enough for her expertise in both roles. My children and grandchildren have provided me with boundless moments of joy. When my accident happened, I had three grandsons. I now have seven grandchildren who have all taken joyrides in “Poppa’s” wheelchair.
Mariah, my older daughter, opened a CaringBridge site where friends, colleagues, and other people in the community could send me their notes of encouragement, support, and positive thinking. Her husband, Anthony, was a morning fixture when I was in the ICU at Strong Memorial Hospital. He would bring his cup of coffee and the morning newspaper to read stories to me. It was great to have a touch of normalcy in the ICU. My son, Dave, was one of the primary reasons I went to Kessler Rehabilitation Institute, because he lived only twenty-five minutes away. We had a Wednesday night date for dinner that he always made, where we could discuss politics, finance, and my recovery (in that order). We spent more time together in my one hundred days at Kessler than in the many years before my accident, and it was wonderful to learn more about each other.
My younger daughter, Sarah, was working for the US State Department, traveling the world and providing community health programs on preventing maternal-to-fetal AIDS transmission. She always sent me funny emails from wherever she had landed and amazed me with her boundless enthusiasm for a very difficult project. My sister, Karen, and her husband, Allan, have been there whenever I needed them. Mercifully, it has usually been for positive events, such as bicycling or holidays all year round.
I also have to thank my mother, who didn’t change one bit after my accident. Her one comment about my injury was, “Brad, you’ve always been able to achieve what you wanted when you had the determination to get there.” Sadly, she died in 2012, but she still observed an enormous improvement in my abilities. My ex-wife, Mary, took on the incredibly challenging task of transitioning us to a lifestyle that imposed few limits and afforded each of us freedom and independence, from one that was filled with hardship and limitations.
I’ve been fortunate to have met many wonderful people in my time in Rochester. Mark and Lois Taubman have been close friends since he and I were in training for cardiology in the 1980s, and our children grew up together. He came to Rochester in 2003, and from May 2009 to May 2010 he served as the CEO of URMC while I was in the hospital and during my recovery. Mark and Lois are our closest friends, and their encouragement and joy in my recovery has been heartwarming. Laurie Kopin was my clinical cardiology nurse until my accident. Since then, she has assisted me many times when I have been asked by friends and fellow ANI patients to help with their care. David and Dawn Klein have been close friends in business and pleasure. When David and I traveled to France on a wine tour in 2011, his compassion, attentiveness, and help made it a wonderful adventure. Tim Doherty has been a family friend since his son Robert grew up with my daughter Mariah. Always calling me “Berky,” he has challenged me many times to “do more,” and has been there to do more himself. He was instrumental in forming my cycling group, A Krew of Pirates (our motto is “we travel to the west and take no prisoners”). The rest of the Krew—Johnny Fahner-Vihtelic, Peter Keenan, Harvey Botzman, and Mike Schell—have made every ride a laugh a minute.
Thank you to my other group of buddies, the Push Men—Rob Tortorella, Bill Sykes, Bob Morgan, and Dave Hebert. We help each other with every problem that someone with a SCI encounters. My skiing partner, Jason Swinton, not only keeps me safe on the slopes but also makes the best sausage I have ever tasted. Thank you also to Rick Aab and Tami Wihlen, Mike and Alice Smith, Rob Callihan and Nana Bennett, Jim and Judy Fonzi, John and Cindy LiDestri, Karen and Larry Kessler, Travis and Katie Betters, and Sherwood Deutsch.
I’m very fortunate to work with a fantastic group of physicians and psychologists who are not only superb clinicians but also caring and compassionate individuals. Thank you to Steve Kirshblum, Kanakadurga (Durgi) Poduri, Dick Burton, Rich Barbano, David Dobrinzki, Jean Nickels, Chuck Wadsworth, Gareth Warren, Alice Rubinstein, and Jeff Levenkron.
My occupational and physical therapists have continued to work with me over the last eleven years to help me prove that continuous therapy results in steady improvement. Tim O’Connor, Cindy Thielman, Kathy Owens, and Simon Carson have shown me numerous ways to achieve my goals of greater independence.
I have been helped by terrific assistants and aides over the last eleven years. My first assistant, Harley Bowman, originally trained as a safety officer to help local companies prepare for OSHA inspections. Harley impressed me with his safety-first approach, infinite patience, and compassion. He picked me up every morning and drove me to work. He made me lunch, helped me get from one appointment to another, helped me stretch, and assisted me through the day so that I wouldn’t be too tired to be a good husband when I got home. After seven years, when Harley retired, I was very fortunate to find a new assistant, Sean Hopkins, who has stepped into Harley’s big shoes with no problem. The only significant difference between Sean and Harley is that Sean is young enough to be one of my children, and he is incredibly strong, which makes everything effortless.
Thank you also to Barbara Conti Anderson and Sharon Steele-Jones, who contributed enormously to my initial recovery and progress. Barbara was an amazing combination of aide, assistant, design artist, clothes specialist, and organizer. She took charge of everything in my life except for personal grooming and showers, which were Sharon’s expertise. Sharon learned my morning and evening programs at Strong Memorial Hospital and was my morning aide for over six years. It was wonderful sharing news about our family and friends each morning. Catherine (Cat) Williams was a live-in aide for one year. She accompanied us on several trips and helped us with cooking, cleaning, and my personal care.
Thank you to Susan Merkel, Dan Andrus, Judy Halling, Emily Halling, Joella Ellingwood, Laura Rasmussen, Hannah Santini, Autumn Wenzel, Bonny Waden, Kristin Terranova, Julian Goodsell, Akila Fenton, Dajanique Montgomery, and Cassie Flamm, all dedicated personal aides.
I’ve also been fortunate to have a series of secretaries/administrators who have managed my work and home schedules, helped me pay the bills, and filled in whenever Sean was unavailable. Joyce Goodberlet was my secretary/administrator from 2001 until I stepped down in 2015. She was unflappable, an excellent editor, and a calming influence. Ellen Caruso, who has remained a close personal contact, worked with me for six months as I transitioned back to CEO full time. In my new role as the director of the URNI, I have had a string of wonderful secretaries/administrators, including Bradley Hamling, Heather Salatino, Pat Zubil, David Merulla, and now Jennifer Rosenzweig.
Professionally, I’ve been helped by many former postdoctoral fellows in the lab who have gone on to pursue independent careers. The Yin family—Guoyong and his wife, Yingqian Xu, and daughter Shiqian—have become close colleagues and friends. They hosted me in Nanjing twice and introduced me to Dr. Jianan Li, who has made an enormous difference in my rehabilitation. Other students who have become faculty include Jun-ichi Abe, Zheng-Gen Jin, Slava Korshunov, Stefanie Lehoux, Jinjiang Pang, and Chen Yan. They have matured into wonderful colleagues who have helped me and collaborated with me over the last eleven years.
I owe a great deal to my postdoctoral fellows, several of whom carried on independently while I was in the hospital and in recovery: Sayantani Chowdhury, Chia Hsu, Syamantak Majumder, Himanshu Meghwani, Megan Cavet, Patty Nigro, Kimio Satoh, Nwe Nwe Soe, Shin-Young Park, Elaine Smolock, Lian Wang, and Cameron World.
I’ve also been blessed with terrific graduate students, including Lingli Li, Naoya Maekawa, Marlene Mathews, Prashanthi Menon, Xi Shi, Oded Spindel, Xiao-Qun Wang, and Chao Xue. Two long-term members of my lab group, Mark Sowden and Mary Wines-Samuelson, both research scientists, have contributed their superb knowledge of molecular biology and biochemistry as well as their love of teaching and warm hearts to the fellows, graduate students, and me.
I am deeply indebted to Joel Seligman (former president of the University of Rochester) and Ed Hajim (former chairman of the Board of Trustees at UR), for their confidence in me. They could not have known how much recovery I would achieve and how capable I would be of handling the mental and physical stress of being CEO. They waited one year to see the results, and I know that I repaid them for their belief. It is rare to have two bosses with such faith.
This book could not have been written without the assistance of three special people. I was so lucky to have Martha Murphy as my cowriter. I very much appreciate her insights into health care. Martha helped me write a book proposal, which led to Linda Konner’s becoming my agent. With her help, we found Olivia Peluso as my editor and The Experiment as my publisher. Linda and Olivia have been brilliant in making the book better organized. In particular, I want to thank Olivia for rethinking the book’s structure and helping me shorten it to a half-day read. In addition, a special thanks to Michal Shaposhnikov for creating and adapting many figures, and to Shehanez Ellika for providing CT scans.
Finally, I’d like to thank Dr. Jianan Li. I met Dr. Li shortly after my accident through Dr. Guoyong Yin. I met Dr. Li on my first visit to China after my accident. He gave me a tour of the new campus for Zhongshan Hospital and described his vision for a multidisciplinary center for SCI and TBI, very similar to the URNI. He convinced me that a sustained program of walking would have enormous benefits for my autonomic nervous system, especially my bowel and bladder. So one crazy day in October 2016, Coral, Sean Hopkins, and I flew to China. The day after arriving, I began six hours of therapy daily, and weekly meetings with Dr. Li to optimize my rehab program. Dr. Li was inspirational in his belief that “man was meant to walk,” so walking farther, faster, and more often should improve my autonomic nervous system and sensorimotor function. Within two weeks, I noticed improvements in my complex regional pain syndrome (less pain, more blood flow) and sensorimotor function (I could feel my right leg better). After six weeks, I could walk twice as far and 50 percent faster. This personal breakthrough convinced me to seek further treatments to improve walking. My next “step” will be to enroll in a clinical trial of EES or transcutaneous ES to achieve independent walking. I am confident that with the support of the many people who have already helped me, I will succeed.
In closing, I want to thank you for reading my book. Whether you are someone with an ANI, a family member, caregiver, or friend, I know that you are searching for ways to improve recovery. I hope this book empowers you to keep working to get better, and that it serves as a source of motivation, determination, and resilence. As you travel the long road to recovery, live each day to the fullest, and remember to thank those around you for their help.