MY Story Begins on May 30, 2009, when I took a bike ride that changed my life.
It was Memorial Day weekend, and my wife and I were at our vacation cottage on Canandaigua Lake, one of the Finger Lakes in upstate New York. Our three children, all adults with their own careers by then, had come to join us for the long weekend. It was a family tradition for us to gather at the lake house for holidays, summer vacations, and whenever we could get away. Being there, away from the demands of our jobs and daily routines, gave us the opportunity to just hang out together, enjoy leisurely meals, play games, and take walks and bike rides.
The Finger Lakes region, an area southeast of Rochester (where we lived and worked), is one of rolling hills and panoramic vistas of farms, forests, and lakes. It was my favorite place to cycle. I had always loved long-distance biking; at the lake, I began taking frequent 50-mile rides—and longer. It was such a perfect place for cycling that, during July and August, I would take Fridays off from my demanding work as CEO of the University of Rochester Medical Center (URMC), a large health care system with multiple hospitals, just to get in a six-hour, 100-mile ride during the day. The best part of the ride was the last four miles, which included a ride up a big hill to an area called The Bluffs. There was a breathtaking view from the top of the hill and an exhilarating ride down—tailor-made for an experienced cyclist.
The weather was beautiful, so on that Sunday afternoon, I decided to take a quick 20-mile ride before the barbecue we’d planned for that evening. Perched atop The Bluffs, sipping some water and taking in the scenery, I checked the road below me before getting back on the bike to head home. All clear.
I blasted down the hill, lost in the euphoria of the workout and the scenery. My muscle memory kicked in as I leaned the bike into the hairpin curve of the road I had ridden a hundred times before.
I heard the car before I saw it, but I looked up just in time to find a large white station wagon taking up the entire road. I quickly realized I couldn’t go around the car without flying over the guardrail and tumbling down a deep ravine. At thirty miles per hour, I couldn’t slow down without hitting the car head-on and being thrown onto the windshield. So I tried a mountain-bike maneuver: I shifted my weight back and skidded the rear tire around to try to slide under the car.
As I gently squeezed the brakes and started the skid, I felt myself being thrown over the handlebars. I heard a loud crack and landed headfirst on the ground. I learned later that the skid caused my rear tire to blow, which made the bike wobble and nearly stop, sending me forward.
I noticed instantly that I couldn’t move my legs or my left arm. When I tried pulling my right arm underneath me to push myself up, it too stopped moving. I could tell that my neck was broken. Even worse, I was panting, which meant my injury was probably above the fifth cervical vertebra—since that part of the spinal cord contains the nerves that control the diaphragm and breathing.
A man was walking toward me from the car. He looked down at me, surprised and concerned. I asked him to call 911 and to get my phone out of my bag so that I could call my family. He dialed and placed the phone next to my ear. When my son Dave answered the phone, I told him what had happened. “By the tone of your voice, Dad, I knew it was something really bad,” he told me later, “We drove there terrified about what we would find.”
They had every reason to be worried.
Within ten minutes of the 911 call, a police officer showed up and an ambulance arrived. I was loaded into the ambulance and driven to a large grassy field where an emergency medical helicopter waited. The entrance into the cargo bay was narrow and dark, claustrophobic. When the helicopter took off, the noise was deafening, and the darkness only heightened my fear and anxiety. But, surprisingly, I don’t recall feeling any pain. I don’t know if this was due to a loss of sensation or being in shock, but I was grateful for it at the time. Finally, the helicopter landed on the roof of URMC’s major trauma facility, Strong Memorial Hospital. I thought I was prepared for what would happen next, because I had experience taking care of soldiers with spinal cord injuries during my residency.
I wasn’t.
No one is prepared for the life-changing event of spinal cord injury, stroke, or traumatic brain injury. In an instant, your world is turned upside down, and the future, if you can even picture one, looks terrifying.
The next twenty-four hours were a blur. I needed surgery to stabilize my spine with titanium rods and trusses. When I woke up, I was not surprised to be on a ventilator, but in my wildest dreams I could not have imagined how uncomfortable it would be. After surgery, I spent ten days in the ICU hooked up to the ventilator, unable to speak, move, or feel below my neck. I was a quadriplegic: I had paralysis of all four limbs.
I spent months in the hospital, first in intensive care and then in a rehabilitation hospital. I had to learn how to breathe again as I was weaned off the ventilator. I had to learn how to swallow again. I had to surrender my sense of modesty and allow others to help me use a toilet. When I was finally able to go “home” again, I had to move from a house I loved and had lived in for many years into an accessible townhouse.
My world had been turned upside down. And I know yours has too. Which is why I wrote this book, to give you all the information I wish I’d known at the time of my accident and beyond.
Like every person who has suffered an acute neurological injury (ANI), I was told that the first twelve months would reveal the limits of my neurological recovery, the this is as good as it’s gonna get for you scenario. Thankfully, that depressing prediction proved to be untrue. My recovery continued long past the twelve-month mark; it continues to this day. If you’ve been told to believe that a similar limit exists for you, I hope this book will show you otherwise. Just as important, I hope it offers you and your family hope, compassion, pep talks, and understanding. After all, I’m a guy who’s been there.
My spinal cord injury took me from the top of the world to the depths of despair. It was the most difficult experience I have ever faced. Today, I’m back on top of the world—a rewarding job, a rich family life, a happy marriage. I’m active in my community, and I’m an advocate at the local and state level for those with disabilities. Life is good. In many ways, I’ve become a better person—not despite my injury but because of it.
I’m also a better doctor. My spinal cord injury changed my view of the patient–physician relationship, the value of mind-body approaches to medicine, and the very meaning of life.
Having an ANI is one of the most serious challenges anyone will face. Ultimately, what I’ve learned is that each day offers opportunities for joy. I hope the information in this book will help you on your journey back to a meaningful life filled with love.
Brad Berk, MD, PhD
February 4, 2021