the comeback

Pushing himself to recover from a cervical fracture, Brad Berk also discovers lessons on compassion, caregivers and timeouts.

by Michael Wentzel

With the same determination he showed on the squash court, Bradford Berk, M.D., Ph.D., now works at standing up straight, pulling back his shoulders, picking up a checker, squeezing a tennis ball, building muscle and waking up nerves.

Brad Berk: The Good and the Bad About His Recovery

For three hours each weekday afternoon, Berk, who is on leave as chief executive officer of the University of Rochester Medical Center, is a patient in the rehabilitation unit of the Medical Center where he aims to repair the damage caused by a cervical fracture and incomplete spinal lesion suffered in a May 30 bicycling accident.

Berk speaks with a voice softened somewhat by weakened diaphragm muscles but also heightened with openness and clarity when he talks about the details of the accident, the peace he made with himself, the unsettled world of spinal cord injury, his new ideas for caregivers and hospitals, the state of his body or his route to return as the Medical Center’s CEO.

“As soon as it happened, I knew. I heard the crack,” Berk said, recalling the moment of his injury. “When I landed, I remember being very pleased that my bicycle helmet was still intact and I could think perfectly well. But I heard that crack and felt my body go numb. I thought my injury was probably at C5 from the way things felt. It turned out to be between C3 and C4 so I was pretty close. I knew right away what happened and what it meant.”

On the side of the road that afternoon, Berk almost immediately created a plan for the future.

“Knowing what I had done, at that moment I made this peace with myself. If I got through this and afterwards if I did not need a ventilator but I was able to move in a wheelchair on my own, that would be OK,” he said.

Berk was able to shed the ventilator 20 days after his accident. Now he has made another decision about his future and what he must do to be at peace with himself.

“I am working toward being the most I can be,” he said. “With an incomplete lesion, it is not clear what that means. That’s why I work as hard as I can every day: to go as far as I can go.”

An apology to his wife

The accident occurred on a Saturday at a hairpin turn on North Vine Valley Road near the Berk house in Canandaigua. Berk, an accomplished cyclist, had traveled the road on his bicycle many times.

On this ride, Berk encountered an oncoming car “quite a bit over in my side of the lane.” The car forced him to swing wide and leave the paved road. When he got off the road, a tire blew out and he went over the handlebars.

The driver of the car immediately came over. “Did I surprise you?” he asked, not knowing the extent of the injury.

“I think I’ve broken my neck, so please don’t move me,” Berk told the man. He asked the man whether he had a cell phone and told him to call 911. The man also called the Berk house and held the phone as Berk talked.

It was a family weekend at the Canandaigua house. Two of the three children of Brad and Mary Berk were there. They had planned an evening dinner in Rochester with their eldest daughter. David Berk answered the phone call and Berk told his son what had happened.

“David said: ‘Dad had an accident,’” Mary Berk recalled. “I thought: OK, he fell off his bike and broke his arm. David didn’t tell me what Brad had said. But as we were driving to where it happened, I looked at David and his face was white. We came around the corner and Brad was lying in the road. I remember asking: ‘Is he conscious? Is he breathing?’”

Mary Berk went to her husband.

“I said to Mary: ‘I’m so sorry’ because I knew how much this would change our lives,” Berk said. “I knew what had happened to me and where we were heading. At that moment, I said these are the cards on the table and we will make the most of it and I’ll be happy where we ended up. I really wasn’t panicked. I was concerned about my breathing. I was scared and I was determined and I was relieved that Mary was there and that I wasn’t all alone.”

Berk’s orderly mind took over.

“He directed me,” Mary Berk said. “He told me to call the E.D. and talk to the attending. The attending was wonderful. I told him what happened. He said the trauma team would be ready.”

Berk praises the care provided by the ambulance crew that responded to the accident. Mercy Flight airlifted him to the Medical Center. He was in the emergency room within an hour of the accident. But Mary Berk could not travel with her husband in the helicopter. She and her son and her daughter, Sarah, went by car to Rochester. Mary Berk said she felt she had to drive.

“It was a very long drive,” she said.

A world removed from reality

In the Medical Center in the Kessler Family Burn/Trauma Intensive Care Unit, after emergency treatment and surgery, Berk found himself in a strange, otherworldly environment that reminded him of the 1978 movie Coma.

“You can imagine what it is like to be paralyzed but you can’t really know the experience,” Berk said. “I felt suspended in space in this cocoon environment. You are so helpless. I felt like I was floating in this world removed from current reality. It was very unnerving. There is no frame of reference to know exactly what you are or where you are. There is no sensation. You can tell up from down but that is about it. You just can’t imagine. It was terrifying at times.”

Berk, who initially was intubated, quickly became frustrated with the difficulties in communicating. Using an alphabet board, he spelled out words letter by letter by blinking his eyes for correct letters, a slow and inefficient process. After a few days, a tracheotomy at least relieved the discomfort of the intubation.

In spite of this uncertain world, Berk remained positive.

“I assumed, even in the ICU while I was intubated, that I would come back to tell the story,” Berk said. “I had a lot of confidence and determination. I experienced a tremendous amount of support from family, friends and staff. But I don’t think I fully understood how long it would take me to get back.”

In the ICU, a change also was beginning to take shape in the way Berk viewed hospital care.

“I think it profoundly affected his perception of caregivers,” Mary Berk said. “When he was in the ICU, he talked about people who would touch him with healing hands as opposed to someone who just did what they had to do. It meant everything to him when someone touched in a way that he could feel the connection. Doctors are trained to distance themselves and maintain that distance and objectivity. When the role is reversed and you are so desperately in need of connection, it is pretty profound.”

After 12 days in the ICU, Berk transferred to the Kessler Institute for Rehabilitation in West Orange, N.J., which specializes in spinal cord rehabilitation. Twenty days after the accident, Berk was able to breathe on his own.

“That was such a celebration,” said Mary Berk, whose life also had changed dramatically.

“We had this extremely busy life and all of sudden it just stopped,” she said. “We stepped out of life and dealt only with all of this. My life was going to Kessler. I moved to New Jersey and I started out being at Kessler morning to night. That was too much. After a while, I went for lunch and then came back after therapy and stayed until 8 at night.”

Berk views his family’s support as essential.

“I had great family support,” he said. “My son David lives in Jersey City and he came to see me twice a week. Mary spent the whole time there. As much as nurses and aides help, having your family there is critical to your recovery. Having them there reminded me of what life had been and what I wanted to return to. I wanted to get back to be with my family and enjoy my family. It’s important to have a goal. Having family close is really key, as I look back.”

At times, Mary Berk returned to Rochester—to buy a van with a ramp that transported a wheelchair, then to put up for sale their Elmwood Avenue house and buy a house that better accommodated her husband’s needs.

“It was a huge change and a huge change for me,” Mary Berk said.

Lunch with those with a huge loss

At the Kessler Institute in New Jersey, Berk began to experience the world from the viewpoint of a spinal injury patient and from the seat of a wheelchair.

He shared lunch each day with other patients, mainly younger men who had complete spinal lesions.

“We exchanged a lot of information about injuries, about what was bothering us,” Berk said. “It was a good environment in many ways because it allowed you to express your fears and frustrations.”

Two of Berk’s lunch mates were in their early 20s. One was injured body surfing. The other was hurt when he dove in to race his father and hit something.

“They were young and their injuries were worse than mine,” Berk said. “For them, it was a huge loss. They had not had a chance to establish a life or career or have a family. It made me realize that no matter how challenging you thought your situation was, there was always one that was worse.”

About 50 people visited Berk at the Kessler Institute, and that was a learning experience too.

“Everyone who came, at least for the first time, worried about what would he look like and they were relieved when he looked better than expected,” Mary Berk said. “He didn’t make them feel uncomfortable about his limitations. Within a few minutes, they were just fine. He would tell them to feed him or do this or that in his usual directive style. He relieved people’s tension and anxiety. He was a captive audience, which people enjoyed because that has rarely been his way. The opportunity to spend time with their father was especially meaningful to our children.”

Berk calls the time “an amazing reconnection with my children.”

“All of a sudden they were feeding me and helping me and doing all these things for me. It was a reversal of roles,” he said. “It was good for them, too. They enjoyed the opportunity to spend that kind of time together. Given how busy I’d been and how busy they’d been, we had not been able to spend time together.”

Berk greatly appreciated a wheelchair ride in the Kessler Institute parking lot or a trip to a park in a nearby town in the new van. A University of Rochester School of Medicine and Dentistry roommate of Berk put together a picnic that included candles and wine. One of Berk’s aides, who was well-schooled in George Washington lore, took Berk and his wife to a hill with a view of the Hudson River that had allowed Washington to observe the British troops.

“To see the sky and feel the air and be out with people was wonderful,” he said.

During his time at the Kessler Institute, Berk ventured out to dinner a few times. “We would try to find restaurants that had outside dining on a patio because navigating through the tables and chairs was difficult,” he said. “In public settings, it’s better to pick a spot and stay there. It’s difficult to drive through crowds. You learn about height. You’re smaller in a wheel chair and people look down at you or don’t see you.”

“It ends up not being a big deal to feed him,” Mary Berk said. “At a recent class reunion, a good friend was on one side and I was on the other. He did the drinks and I did the food. It is very interactive when people help you and feed you … people want to help. They want to do something concrete, not just make idle conversation. Sometimes they don’t know what to do, but Brad usually manages to find a job for everybody.”

Berk left the Kessler Institute on his 101st day there. He proudly noted that Kessler expected he would require six months. He returned to Rochester for three weeks in the Medical Center and then moved into a newly-acquired house.

Doctor as patient and thoughts for the future

Although rehabilitation therapy has filled the days and weeks since the accident, Berk calls these months removed from his routine as executive, cardiologist and researcher a “timeout.” He didn’t even wear a watch.

“In a sense, time just stopped,” Berk said. “We all need timeouts. The loss of my daily routine provided a unique opportunity to observe the delivery of health care from a different perspective and for a long period of time.”

Berk has become convinced that hospitals have to make time for caregivers to get to know their patients so they can feel good about taking care of someone and the patient has time to let the caregiver know they appreciate the care.

“Compassionate caregiving is an amazing experience,” Berk said. “I think that taking care of someone and bringing them back to health is a very fundamental human sensation and experience. It is profoundly rewarding for caregivers to do this. It is something so fundamental to a human being that we need to recognize it and salute it, and we don’t always do that.

“Over the course of this illness, I have encountered so many wonderful caregivers. If something felt really good, I would tell them that I really appreciated their taking extra time. That interaction, that communication, really makes job satisfaction much better for the caregiver. We need to change our dynamic and make sure that there is time for the interaction to occur. In the hospital’s current environment, where we’re really trying to move patients along, it really does limit the opportunities for the patient and caregiver to have time to recognize what they have. I hope we can find ways to legitimize this as part of the way we operate.”

“I could tell that people cared as soon as they put their hands on me,” he said. “You could feel safe with them. Feeling safe is a big part of this because you are so dependent on everyone. When you don’t feel safe it is very concerning. Because my experience was extreme, it was so clear to me how important this is.”

As CEO of a medical center, Berk knows where he wants to go with what he has observed.

“Just as we made quality of care and patient safety hugely important—and we have made significant strides in those areas—we need to make interaction really big,” he said. “It will drive quality and safety and it will enable our very own caregivers to be very satisfied with the work they do. As an organization, how do we create an environment where people can fully express themselves in a way that enables patients to feel safe and enables the patient to interact with the caregiver and to say what you’re doing is really helpful to me? Both the patient and caregiver end up feeling satisfied and taken care of. I think this is achievable. We have great people at the Medical Center. We have to work on making this operational.”

To begin making such a change, Mary Berk said, it must be taught in all schools that educate care providers.

The reeducation of arms and legs

In the Medical Center’s rehabilitation unit, Berk takes occupational therapy and physical therapy. Most of his body needs work, but the greatest loss of strength is in his upper body. His muscles have atrophied so much that “everything moves around,” he said. He had a dislocated shoulder because the atrophied muscles could not hold it in place.

“A lot of nerves pass through the shoulder joint and armpit. When the shoulder dislocates, the squeezing of the nerves is very painful,” Berk said. “Shoulder problems are the most common complaint in injuries like mine. Shoulders are critical.”

Berk can stand and walk with assistance. His left arm seems about a month ahead of his right arm in development.

“My left arm is good about moving around,” Berk said. “I’m doing mirror work so my brain gets the message and my right arm learns what it has to do. For four months my limbs have not really moved correctly so I have to reeducate them.”

Sensation is returning slowly, progressing from the top of his shoulders and in November to his waist. He has to be careful as he eats. He has trouble swallowing bread. Chewing the raisins in his cereal actually tires him.

“I have to learn a lot of things over again,” Berk said. “I have to learn how to roll over in bed, how to sit up well. I’m working a lot on abdominal muscles so I can sit up. I have to do a lot of sensory reeducation. I can see where my finger or my arm is but I have to learn to feel them. I have to learn what is soft and what is rough.”

Berk declared a victory when he could lift his left arm and hand to scratch his nose.

“Did you ever have an itch you couldn’t reach?” he asked. “This is a major improvement. I can’t make a fist yet. I have plenty of strength but I don’t have the flexibility. I’m working on pinch and grasp and improving my range of motion. It’s all about repetition. The normal feedback loop is not there. If I feel it and see it, I can remember it. Some days I can do amazing stuff. On other days, when I am stiff, the simplest movements become tests. My muscles resist movement.”

Therapy has not stopped his research. Since July, he has received study results from the scientists in his lab on Fridays. He and his wife review the results, and then he sends comments in time for the beginning of the next work week.

Berk has an office next to the office of Mark Taubman, M.D., the acting CEO of the Medical Center. Berk spends a few hours there each morning to work on special projects.

“My goal is come back as far as I can physically. That’s why I am dedicating so much time to rehab. The first six months after the accident is a critical time,” he said. “Once I feel I’ve achieved a level of independence that I’m comfortable with and I have a level of energy to work a full day, then I’ll come back as CEO. There are huge opportunities for us as an institution and an organization. Creating the changes I would like to see will be difficult operationally but I have no doubt we can do this. I’m very energized by the opportunities, by the great things we can accomplish at the Medical Center.

I wouldn’t miss it for anything.”