Leading a Life that Continues to Astound Me
You may not control all the events that happen to you, but you can decide not to be reduced by them.
—Maya Angelou
As I WRITE THIS, almost twelve years have passed since my injury. (But who’s counting?) No matter how much time goes by, I remember the event vividly. When I was transported by helicopter to the emergency room, all I hoped for was to live. I knew I had suffered a serious injury and that my recovery, if any, would be a long, difficult journey. In retrospect, it has been more difficult and much longer than I imagined.
While I sensed I would be able to keep parts of my old life, I learned I would also have to let some things go. And I would have to be open to incorporating the “new”—new skills, new habits, and new people. What I didn’t understand until later was that, to be happy again, I would have to build a new life. I’ve now done that, and it’s a life that continues to astound me. My home and family life, friendships, social activities, professional work, and community involvement—all of them are rich and full and bring me more joy than I ever envisioned.
At the time of my injury, I was living the dream—I’d achieved tremendous success in my work as a physician and researcher, father to three wonderful adult children, and living in a place and manner I had aspired to since I was in college. At work, I had advanced to CEO of the University of Rochester Medical Center. Life was good. But a bicycle accident turned all that on its head.
One year after my accident, thanks to the compassion of my colleagues at the University of Rochester, I was able to return to my prior role. I am forever grateful to them for that opportunity. Being able to work, even on a part-time basis, helped me persevere through the hard days of rehabilitation, and enabled me to believe that I could have a future that included meaningful employment—and a way to support myself and my family.
A lot has happened between then and now. My first marriage eventually ended in divorce, unable to withstand the strain of my new situation. I’ve learned more about wheelchairs, various catheters, urine bags, neuropathic pain, swallowing, and rehabilitation than I ever cared to. I’ve made new friends; remarried; had four more grandchildren; lost my mother; and changed who I was, to become who I am. And I’m a better person because of everything I’ve experienced and, more important, everyone I’ve met.
Today, I’m the director of the University of Rochester Neurorestoration Institute (URNI), where our motto is “using the mind to restore the brain and body.” The people who come to us have suffered an acute neurological injury, like I have, and are looking for new ways to improve their quality of life. Our mission is “to restore functions lost or impaired by damage to the brain and spinal cord.” It’s the most rewarding endeavor of my medical career. Every day, my colleagues and I are working hard to make the URNI a nationally recognized leader in rehabilitation and restoration of cognitive, motor, and sensory function.
Has getting here been easy? In a word: no. Worth the effort? Oh, yes.
For one thing, my time as a patient changed me as a doctor. It expanded my understanding of the need for more attentiveness, compassion, teamwork, and respectful two-way communication by health care providers with the patient and family. The insights I gained during my time in the hospital, and since then, have become the philosophy that guides every member of the health care team at the URNI.
I also became a more outgoing person. Now, when I wheel through the hospital on my way to physical therapy, I say hello to everyone I see (and I make an effort to learn everyone’s names), from the CEO to volunteers to environmental services workers. Without fail, this simple interaction brings a smile to all parties.
I got over my hang-up about never needing help. Learning to acknowledge that I do need assistance at times has made me a humbler person. And it has forced me to slow down a bit, which has reminded me of the importance of always using the word please. And saying thank you. I’ve learned that most people are generous and, when given the opportunity, want to help. These connections with others are mutually beneficial, feeding our souls and making our days on this earth more meaningful.
There has been a lot of hard mental, physical, and emotional work to get to where I am today, and I still face challenges. Sometimes, the past intrudes on the present, when I realize how much I’ve lost—a relationship severed because I didn’t fully appreciate the effort the person was making, or an activity like hiking, which will be forever lost. When I find myself looking backward, I lean on my mantra: Forgive, let it go, move on. It helps.
I’ve forged new relationships with my children. At the time of my accident, my kids were thirty-two, twenty-six, and twenty-three. They were all living independently and had established their own lives. Over the past twelve years, we’ve redefined our connections and are actually much closer now than we were before my injury. I think my accident revealed the fragility of life; that, plus the pain the divorce caused them, made each of us aware how important our family is. These realizations have helped us establish stronger bonds and have given us the ability to have more honest conversations.
When my former wife and I separated, I was quite lonely. I made an effort to reconnect with friends whom, previously, I would see only once in a great while. Getting together to watch sports on TV or go to a baseball game was an excellent starting point. Baseball was particularly good because I could bring my grandchildren with me (for the food, not the game!).
I dearly missed biking, despite the fact that I had been on my bike when I had my accident. Eventually, I bought a three-wheeled recumbent bike (Figure 33) and invited a few friends to ride with me on the weekends. Soon, there were four or five of us riding every weekend. I then graduated to a faster, safer tricycle and began riding the roads. Today, I ride my recumbent three-wheeler every Thursday and Sunday—with friends—all year, except for the winter months. I even participate in longer charity rides (15–25 miles/24–40 km), when the opportunity arises. The friendships that have come from this shared passion for biking have made my life fuller and given me more to look forward to.
Among my new friends are the Push Men, all SCI paraplegics and tetraplegics who have spent twenty-five years or more in wheelchairs. We get together every two to three months for dinner, and in between those gatherings, we’re there to help one another out with any kind of problem. They’ve helped me tremendously over the years because each one of them has intimate knowledge of almost every problem I face.
Getting divorced and being single again after more than thirty years of marriage was a big transition. I settled into bachelorhood with dinner parties and sports activities. But I was lonely for a close companion, a woman with whom I could enjoy life. I missed romance and intimacy. After a year on my own, I began to let friends know I was open to dating, hoping that those couples who knew me well would magically find the perfect blind date. Unfortunately, my brilliant plan only revealed that our tastes in women were vastly different.
But, eventually, I met a woman whose smile just made me feel good. It was near Christmas and I wanted to enjoy a fun meal, so I called her up to ask her to dine with me. She later told me that she spent three hours deciding whether to say yes. We’re both glad that she did, and we’ve been together ever since.
Since my injury in 2009, I’ve often heard a voice in my head saying, You can accomplish anything as long as you set your mind to do it. My mother told me this many times as I was growing up, but never was it more helpful than during rehabilitation. The memory of her words reminds me that it’s my responsibility to lead a good life, and there’s nothing to gain from blaming those around me. There certainly are occasions when frustration at my circumstances sets in. It’s not fun when I go through a period of bladder spasms and leak urine around my suprapubic tube—it’s an obvious reminder that my life has changed dramatically.
In October 2017, I traveled to Nanjing, China, to spend six weeks at Zhongshan Rehabilitation Hospital. The time I spent in Zhongshan Hospital was eye-opening—I learned firsthand about the benefits of traditional Chinese medicine (TCM). In particular, I discovered that acupuncture, massage, and meditation had dramatic beneficial effects on my physical and mental health. And, over the next six months, I was able to reduce my neuropathic pain medications such as pregabalin (Lyrica) from 400 mg to 50 mg per day. I quickly reduced my other pain and spasticity medications as well, changing to a combination of Tylenol and nortriptyline, and reducing baclofen from 130 mg to 70 mg per day. My daytime drowsiness disappeared almost completely.
It wasn’t only the rehab and medications in China that were having such dramatic effects on my function, but also the change in what I was eating. In China, we ate a mostly plant-based diet—we rarely ate meat, although we did eat fish and other seafood regularly. There were no processed carbohydrates like bread, cookies, or pasta. This is the diet I follow now, and I’m convinced it has helped my gut health, which science shows is integral to brain health.
My immersion in Chinese rehabilitation and lifestyle provided the perfect opportunity for me to practice mindfulness, meditation, and self-awareness. I believe that my improved self-image was the most important psychological change that occurred in China. This empowered me to focus on my most important long-term goals and what I needed to do to achieve them.
But the most important rehabilitation lesson I learned from my time in China was the value of walking. During the first year after my accident, I had learned to walk up to seventy-five feet using a platform walker (Figure 32, see page 209). But this talent had no benefit on my daily life, because I could only go a short distance before my shoulders started to hurt. I decided it was a better use of my time to work on my upper body strength and function, since it would enable me to be more independent when eating and using my computer, for example. Even the therapeutic approaches that emphasized intense treadmill walking in a harness seemed like a waste of time, because this training doesn’t enable you to walk safely outside of the treadmill on flat surfaces like wood and linoleum. But what I learned in China was that walking can improve your sensory and autonomic nervous system function. This was a huge revelation. And I came to believe that the mind-brain-body system can work in reverse: changes in the body can be transmitted upward to improve the functions of the brain and mind.
In China, I learned to walk using my platform walker again. I now walk five days a week and have gradually increased my time to fifteen minutes each day. I’ve also dramatically increased the speed of my walking; it’s now more than twice as fast as it was in 2017. The benefits to my overall health have been phenomenal—increased bone density, better bowel function, more muscle mass, and cardiovascular improvements. For someone who spends most of the day in a wheelchair, the psychological benefit of standing and walking cannot be overstated.
When I returned to work in 2010 as CEO of the University of Rochester Medical Center, I knew that, eventually, I wanted to go in a new direction: one that would help people like me. But first I needed to complete a major project—financing and building a new children’s hospital—which took five years. When that project was completed, in 2015, I turned my focus to the development of a multidisciplinary clinical center for people with ANI—the University of Rochester Neurorestoration Institute (URNI), where I now serve as director. I considered the establishment of the URNI a necessity; there was no place in western New York that patients with ANI could go for comprehensive evaluation of all neurological and medical issues, treatment recommendations, and participation in clinical trials.
Several studies were published at that time about the use of devices to treat neurologic diseases, especially ANI. These reports reminded me of the late 1980s in cardiology, when there was an explosion of devices (pacemakers, implantable defibrillators, balloon angioplasty, and coronary artery stents). These devices transformed the practice of cardiology. I saw remarkable parallels in neurorehabilitation and wanted to be part of it.
In addition to bringing specialists together to evaluate and recommend therapies, the URNI will recruit people to participate in multicenter clinical trials. The medical specialties will include internal medicine, cardiology, neurology, physiatry, orthopedics, urology, and mental health. There will also be other professionals available to consult with patients and their families on nutrition, equipment, financial aid, and support groups. After a patient receives a complete evaluation, a physiatrist will assemble all of the necessary information and provide recommendations for medications, rehabilitation, nutrition, and possible clinical trials.
I’m honored to say that I have collaborated with two superb researchers—Jon Wolpaw, MD (director, National Center for Adaptive Neurotechnologies) and Rajiv Ratan, MD, PhD (executive director of the Burke Neurological Institute)—to create a new clinical research program for people with ANI called NeuroCuresNY. The first clinical trial will begin in September 2021. We hope that our research network will ultimately become a magnet for people with ANI who want to participate in clinical trials of new devices and new drugs.
After people in my community told me I inspired them, I began making that role part of my mission. Having accepted the challenge to be an inspiration, I’ve used my position in health care to advocate for improved accessibility in local organizations, and especially at not-for-profit entities. At the state level, I’ve continued to participate in the funding committee of the New York State Stem Cell Science program (NYSTEM), which funds meritorious research in stem cell approaches, including nerve regeneration in several neurological diseases. I’ve also supported funding for the New York State Spinal Cord Injury Research Board (SCIRB). Recently, I received funding for my first project on improving spinal cord function using drugs that decrease inflammation. These efforts are part of my “pay it forward” pledge to help others.
I’m confident that five years from now I will have dramatically increased my independence with new devices. I’m fairly confident that there will be an SCS device that can relieve the pain in my right arm and ameliorate my complex regional pain syndrome. I also think that, with epidural electrical stimulation, there’s a good chance I’ll be able to walk longer and, I hope, with only minimal support (using a walker or cane). I’m less confident but still hopeful that more walking will improve my bladder, bowel, and sexual function. I’m also hopeful that I’ll be able to purchase a self-driving vehicle that can take me safely wherever I want to go.
As I finish writing this book, we are in the midst of the COVID-19 pandemic, and I have been self-isolated for months. Everyone is talking about an indefinite “new normal” of wearing masks, practicing social distancing, and washing our hands repeatedly throughout the day. But there’s no way this scenario is normal. Nor should you see your life immediately after your injury as your “new normal.” Yes, you are on a new and unanticipated path, but I want you to view it as the start of a new life in which you can experience an ongoing recovery.
When I lay on the ground with a broken neck in 2009, praying I would live to see my family one more time, I couldn’t have envisioned the life I lead today. My wife and I take international vacations, I’m active in local civic events, and I’m an advocate for people with disabilities on a local and state level. After my injury, I had to relearn to swallow; once I could do that safely, I was spoon-fed by an aide because my arms were too weak. Now, I can feed myself, hold a wine glass, and even pour wine for my wife.
I’ve gotten here with two elixirs available to each of us: hope and love. Hope provides the motivation to work hard on rehabilitation. Love provides the emotional support it takes to overcome the hurdles. I have no doubt that I will continue to recover even more function in the days, months, and years ahead. And you will, too. Whatever stage of rehab you’re at, know that you can and will achieve even more. An astounding future awaits you. As you make your way on this journey, I send you love, encouragement, and hope.
Keep me posted. I’d love to hear from you at drbradberk.com.
Brad Berk, MD, PhD
2021