Berk pens book with insights from a life-altering injury

On a beautiful day in May 2009, Brad Berk took a bike ride.

Trim and fit at 55, Berk was at the top of his game. A cardiologist and medical researcher, he had been named CEO of the University of Rochester Medical Center three years earlier and was well into a strategic plan meant to burnish the already prominent medical center’s luster and cement its place as the area’s top employer.

It was the Memorial Day weekend. Berk and his family were spending it at the family’s lakefront cottage.

A serious cyclist, Berk routinely took six-hour, 100-mile jaunts. The 20-mile ride he was close to finishing was more for relaxation than a challenge. The steep hill he had just topped on North Vine Valley Road at the southern end of Canandaigua Lake was his favorite part of the ride back to his family’s summer cottage.

Berk still recalls racing downhill at 30 miles an hour as he headed home “lost in the euphoria of the workout and the scenery.”

Suddenly, a white station wagon loomed on the usually sparsely trafficked country lane. The car took up the whole road. There was no room for Berk to maneuver. He didn’t panic, but decided to try a mountain-bike maneuver that would have the bike skid under the car—a dangerous move, but one that he figured would be less likely to result in serious harm than crashing head on into the station wagon’s hood.

It didn’t work. The bike’s rear tire blew. Berk went over the handlebars and landed on his head.

“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,” Berk writes in “Getting Your Brain and Body Back,” a book published this month.

The book is laced with anecdotes recounting Berk’s experience as a quadriplegic or to use his own preferred term, a tetraplegic. For those so interested, it also has a fair amount of medical and neurological background complete with illustrations.

“Getting Your Brain and Body Back” is not meant as inspirational literature of the “overcoming adversity against tremendous odds” genre. Rather, it is a guide, a roadmap of sorts for fellow members of a club no one wants to join: those find themselves suddenly paralyzed.

To be sure, there is plenty of inspiration to be pulled out of Berk’s book. It is hard not to admire the work Berk put into his recovery and still puts in more than a decade after his accident. It’s hard as well to downplay the degree of success he has achieved.

Following a disciplined exercise and physical therapy regimen that still demands hours of his time every day, Berk has regained enough use of his arms to be able to feed himself and enough use of his legs to be able to stand, walk a bit and ride a recumbent three-wheel bicycle.

To fit the exercises and therapy he needs to do into his work routine, Berk, who is pursuing research and is still a URMC official, has learned to combine activities. During our recent Zoom interview, he did an exercise while we talked, standing rather than sitting for the conversation’s 35-minute duration.

Berk’s recovery is not complete. He still needs to use a wheelchair and finds driving a car to be too overwhelming a task. On a recent Erie Canal path bike ride with a group, he gashed his foot when it fell off the pedal and dragged along the paved path’s surface. Companions winced, asking Berk if the wound hurt much. It did not, he told them, explaining that he has no feeling in his legs at all.

Berk makes it clear that what success he enjoys did not come easily. To regain enough use of his arms to feed himself, he spent many hours struggling to lift a wine glass. Because of the peculiarities of how a brain gets rewired to achieve such a goal, Berk had switched his primary handedness from right to left.

Berk’s book deals as frankly with the psychological hurdles he needed to leap and the deep despair he wrestled with as well as the physical barriers he needed to overcome.

In losing mobility and sensation, “you’ve lost something that can’t be retrieved,” Berk explains in the book. “Your grief for that loss is as real as experiencing the death of a loved one, and it is to be expected, acknowledged, and addressed with care.”

Albeit with considerable help, Berk in a matter of months went from a state in which by his own description he initially lay virtually disembodied, unable to speak or move, to a point where he could return to work as URMC CEO, a job demanding enough to test the resources the most-hale individual. He continued in the post for the next six years.

As a longtime reporter on the health care beat for the Rochester Business Journal, I interviewed Berk a number of times before and after his accident. He kept to a similarly demanding schedule after the accident as he had maintained before. But it often seemed clear to me that the physical strains of his condition wore on the wheelchair-bound Berk.

Berk resigned as URMC CEO in 2015. He’d been on the job nine years. He stayed on for the last six of those years as a paraplegic because he wanted to see the Golisano Children’s Hospital project completed. One of a spate of major expansions to UR’s Elmwood Avenue main medical campus that Berk oversaw, it was on the drawing board when he tumbled over the handlebars.  

After resigning as CEO, Berk stayed on at URMC, founding the medical center’s Neurorestoration Institute and finally beginning work on the book.

Berk first started to think about the book while he was still in Strong’s ICU. Frustration with a Ouija board-like device caregivers gave him to communicate with planted the first seeds of what became “Getting Your Brain and Body Back.”

On Berk’s resignation as CEO, he immediately started work then on the book, signing up for a Harvard University Medical School medical writing course and taking an intensive course in neuroscience at UR to bone up on changes in the field since his medical school days when “we barely had CT scanners and we didn’t have MRI scanners at all.”

Berk’s book is aimed at stroke and traumatic brain injury sufferers as well those who, like Berk, are paralyzed as a result of spinal-injury. To wrap those other insults into a category that could also include spinal cord damage, Berk invented a term: acute neurological injury, ANI for short.

There is no shortage of how-to and self-help guides to spinal cord injury rehabilitation. An Amazon search turns up more than dozen books on the topic including “Getting Your Brain and Body Back.”

But as a physician, experienced medical researcher and hospital official who happens to also have been paralyzed, Berk thought he would be able to cover the topic from angles others might miss or give too short shrift to.

His book, says Berk, is advice from “a guy who’s been there, done that. I think that does give me a certain amount of emotional traction, but also unique personal insight. Not only was I doctor as patient, but I was CEO as patient. I knew a lot about how hospitals ran and worked. I realized that there were so many things that I knew the background and understood—what they were doing, why they were doing things—that most people wouldn’t understand.

“I had a real sense that I really needed to tell people the real story, how they can be better patients and how their families can help more and how to relate to doctors and nurses, the psychological problems that people encounter, all those things. I realized that I could do a good job of explaining this to people and it would be invaluable to them.”

Among the raft of books on spinal cord injuries, Berk’s may be the only such guide that also wraps in stroke and traumatic brain injury sufferers.

There are a number areas in which stroke sufferers and those with spinal cord and brain injuries differ, Berk acknowledges. Stroke sufferers are as rule older and are paralyzed on only one side of their bodies. Spinal cord injury sufferers are more diverse in age and are paralyzed on both sides.  

Despite the differences, Berk’s perspective is that sufferers of the three categories of body insult “share many properties in common.” The fact of paralysis, be it partial or full, is one. Another is a tendency to become despondent.

Berk’s recommendations for dealing with post-accident or post-stroke psychological and emotional stresses include early preemptive interventions including anti-depressants and talk therapy. Patients often need to be aggressive in making sure such nostrums are part of their recovery. Doctors and care givers too often do not probe deeply enough into patients’ psychological needs, Berk’s book cautions. For some caregivers, arriving at the right combination of measures to address such problems takes too much time, he writes.

“Further complicating the situation is that symptoms of these mental health disorders sometimes occur months after the accident, leaving you, your family, and your caregivers confused. But if you’re prepared, you’ll know how to ask for help. Addressing your mental health needs after ANI is essential,” he adds.

As to longer-term measures for coping with psychological and emotional stresses, Berk discusses a range of conventional and complementary-medicine remedies—psychotherapy, particularly cognitive behavior therapy; electro-convulsive therapy and transcranial magnetic stimulation; ayurvedic medicine; aromatherapy; meditation; yoga and Chinese medicine among them. Berk himself became attuned to such treatments as a rehab patient.

“I’m a Board-Certified Cardiologist and a biomedical scientist,” he explains in the book. “From my medical training and experience as a doctor, I hold a long-standing faith in the value of what we call Western medicine. But, since my spinal cord injury, I’ve learned that there are tremendous benefits to be found in Eastern (or Asian) medicine and complementary medicines and therapies.”

In the book, Berk describes his own six-week stint at a rehabilitation hospital in Nanjing, China, where he spent six hours a day immersed in what he describes as his “most profound healing experience to date.”

The experience sold Berk on what he calls “an integrative approach,” one that combines aspects of Western medicine with complementary and Eastern medicine methods and looks at the patient holistically rather than focusing on injuries or illnesses as isolated phenomena. If you decide to do yoga, he advises, don’t try it on your own. YouTube videos and instruction books won’t be sufficient. Find a teacher.

In addition to the physical techniques he employed in Nanjing, Berk sees the dietary regimen he adopted there— plant-based, heavier on fish and lighter on processed carbohydrates than the usual Western fare—as equally key to the success he has enjoyed in recovery.

Berk’s recovery is impressive. The range of options, treatments and therapies he details in the book is exhaustive. The volume seems to be one that would prove helpful not only as a guide to patients but as resource for doctors and rehabilitation therapists.

Still, one can’t help but wonder how easy it might be for patients lacking Berk’s remarkable array of advantages to attain the level of success he has reached. Not many can whisk off to China for a six-week stay at a rehabilitation hospital. Many cannot afford amenities and support like the assistant and driver who help Berk manage. Not everyone is as motivated and talented an individual as Berk to begin with.

“Getting Your Brain and Body Back” addresses these issues to some extent.

Take advantage of resources that are available, Berk advises. Learn what your options are as soon as possible. While the life planer Berk hired to help map out his future gave him great comfort, the $1,000 to $2,000 cost of such a service might be out of reach for some, he concedes.

Hospital discharge planners can help patients learn what is out there, however. Learn what your options are. Disability payments can be available through government insurance. Charity care through a hospital might be an option for some. Though charity care, Medicare and Medicaid coverage are more limited than the best private care that might be arranged, they will provide some level of support.

Still, the book acknowledges, “it is the unfortunate reality of American health care that long-term medical care is expensive and frequently not covered fully by insurance policies.”

Will Astor is Rochester Beacon senior writer.