These doctors cope with disability. Could you?

July 9, 2001

Being able-bodied isn’t necessarily a requirement for a career in medicine.

Being able-bodied isn’t necessarily a requirement for a career in medicine.

Devastating. No other adjective comes close when an accident or disease causes a disability that threatens to cut short your life’s work. Yet the physicians profiled here triumphed over their disabilities, either by creatively modifying their practices or by launching new careers.

"I see my disability as another fork in the road of life, not an endpoint," says urologist Sam Butler, who has Parkinson’s disease. "There are many ways to contribute to the well-being of a community even if you can’t directly practice medicine."

Every day, rehabilitation physician Stanley Wainapel says his patients demonstrate "an incredible capacity to prevail over all kinds of hardships." For a role model, they need look no further than Wainapel, who is nearly blind. Yet Wainapel considers his physical disability less limiting than an attitudinal one. "A closed mind–closed to what patients have to say, and to what disabled patients and physicians can do–is the most incapacitating handicap for a physician," he says. "People have to learn to function not just within the limits of their disability, but to the hilt of their ability."

These physicians certainly have.

Brain-injured, she goes skating

Internist Claudia Osborn doesn’t remember the 1988 accident that ended her Detroit practice at age 33 when a car hit her bicycle head on. Refusing to believe she was brain-injured, Osborn attempted to return to practice, even though she couldn’t follow conversations, comprehend lab results, or remember admitting a patient. She even needed to write herself a note to remember to eat and get out of bed in the morning.

Osborn agreed to be evaluated by the Rusk Institute of Rehabilitation Medicine at New York University Medical Center, where she would spend 18 months learning cognitive strategies that would enable her to go to the grocery store, elaborate on a thought, and appear animated. Today, 13 years after the accident, Osborn uses a timer that rings every 15 minutes, a signal to check her notebook or tape recorder so she stays on track with whatever task she’s doing. Her Maltese "service dog," Micah, ensures she takes her medications and doesn’t collide with people when she goes rollerblading or walking. She also works with a coach 12 hours a week learning executive function skills, such as organizing, planning, and prioritizing.

Strangers who meet Osborn, however, don’t notice anything amiss. "I work very hard and use certain tricks to be energized for every conversation," says Osborn. "People with brain injuries can function at a high level if we have people and props to help us."

That’s apparent from the 30 or so yearly lectures on brain injury she gives in the US and abroad. Invitations to speak came after she published Over My Head (1997), an account of her injury and rehabilitation. As she struggled to regain speech fluency, writing was initially a form of therapy. But Osborn also intended the book to "explain the brain-injured community to the rest of the world, which is a little nervous about us." She is currently writing a book about coping strategies and the family dynamics of the brain-injured.

Before she began lecturing, Osborn taught first-year medical students at Michigan State University how to do a history and physical. And she still dreams of practicing medicine–possibly as a hospice physician. Her immediate goal, however, is education and working with legislators to get funding. "If your brain is injured, you may get a few weeks of speech and physical therapy, but it’s very difficult to get cognitive rehabilitation," says Osborn. "That is economically stupid for the country, and not very compassionate. We are the most underemployed disabled group because employers don’t realize that the person who can’t tie his shoes may be able to do very good accounting work. We have tremendous potential to grow with rehabilitation; don’t give up on us."

His white cane makes him independent

Although Stanley Wainapel’s rare progressive eye disease–choroideremia–prevented him from driving a car at night while in medical school, he could generally pass as a sighted person. Today, at age 54, he can’t. "If I didn’t use a white cane, I’d walk at a snail’s pace and have to look at my feet," says Wainapel. "With a cane I can walk fast, upright, and proud. I make money on that cane because I can work faster and see more patients. It’s a tool for independence."

The affable Wainapel, who is a clinical director of physical medicine and rehabilitation at Montefiore Medical Center in the Bronx and a professor at Albert Einstein College of Medicine, chose rehabilitation medicine because it allows him to work with a team of people who are sensitive to those with disabilities. But other interests equally shaped his career. An accomplished pianist, Wainapel worked for a time at Roosevelt Hospital in Manhattan, near Lincoln Center and Carnegie Hall, so he would have musicians and dancers as patients. He also became "an expert of one" in vision rehabilitation, which is now part of his specialty’s curriculum. And his own gastrointestinal problems led him to study in China and become a certified medical acupuncturist.

Although Wainapel’s sight is extremely limited, he might be able to see the width of a patient’s gait if the patient wears the right clothing. Alternatively, he may listen for a foot dragging or hitting the ground too quickly. "If I’m not 100 percent sure, I’ll ask another doctor, a PA, or an NP to observe the gait," he says. Colleagues review X-rays for him, secretaries read him reports, and he has a computer with synthesized speech that reads at 400 words a minute–"which is as fast as I think."

But, Wainapel says, sight isn’t necessary for most examinations. "If someone has an underactive thyroid, I can feel the skin changes, slow pulse, enlarged thyroid gland, and coarse hair, and listen to their hoarse voice. Other physicians tune in to hearing or touch by closing their eyes if they aren’t sure they’re feeling the edge of the liver or hearing a slight heart murmur. The most important aspect of the doctor-patient relationship is communication, and no patient will tell you I have a problem listening."

Disease put him in the executive suite

Sitting in the neurologist’s office with his wife, urologist Sam Butler responded to the words "Parkinson’s disease" with disbelief and relief. He was thrilled that his symptoms weren’t caused by a stroke or brain tumor. But at age 36, he thought he was too young to have Parkinson’s.

Butler was terrified he’d have to leave his 13-doctor group immediately. But with medication–and the consent of his group, hospital, malpractice carrier, and licensing board–he was able to continue practicing for another three-and-a-half years. On Butler’s final day at the office, he told his secretary, "The last thing I want to do is work for an HMO reviewing charts." He would have to eat his words. After spending a year caring for his two daughters while his wife finished her MBA, Butler became a part-time medical director and reviewer for an HMO that had recently come to Roanoke, VA. The work wasn’t as bad as he’d feared. "Because I was medically informed, other physicians didn’t see me as an obstruction to health care," he says.

Then in 1999 he took a part-time position as chief operating officer for Carilion Health Plans. The hours are right–a full-time schedule would have been too taxing–and he’s assisted by voice-recognition software and staffers to type his correspondence. "Planning for the future is the most difficult thing of all, because I can’t predict the rate of decline I’ll experience," he says.

Butler is grateful he’s still involved in medicine, "even though I’m on the periphery." In his current job, he says, "I’ve worked hard to make the appeals process fair for patients and doctors who protest our plan’s decisions. I don’t have the management skills our business people have, but they don’t have my medical perspective. Together, we produce better decisions and outcomes than we would independently."

A nurse provides his "hands"

Family practitioner David Duncan of Prescott, AZ, never saw any need for disability insurance. It was a gamble that he lost. In 1994, when Duncan was 51, he was rear-ended by a "twit kid going 65 in a 25-mile-an-hour zone." Both were imprisoned–the kid for a year for reckless driving, and Duncan forever in his body as a quadriplegic. The $25,000 the driver’s auto insurance company paid Duncan for medical expenses didn’t begin to cover his nine-month stay in hospitals and rehab centers.

Retirement wasn’t an option for Duncan. He pays caregivers $4,000 a month to bathe, dress, and chauffeur him and to catheterize his bladder several times during the day and night. His medical bills were "horrendous," and until Medicare kicked in, Duncan’s medical insurance premiums were $2,000 a month. In addition, three of his five children were in law school and college. Without an income, he was destined for bankruptcy and a nursing home.

A year after the accident, Duncan returned to his practice and two partners, this time with nurse Mark Priola, who functions as Duncan’s hands. "Mark should have been a doctor," says Duncan proudly. "But he’s also humble enough to admit when he doesn’t know something. No patient is in jeopardy under this arrangement."

Initially, Duncan, who has limited use of his arms, had the stamina to see only three patients a day. "I can’t even explain how grueling it was," he says. By the end of a year, however, he was seeing his current quota of 20 patients a day. He is also medical director of a 180-bed nursing home. Duncan regrets having to give up the minor surgery and deliveries he used to do. Not being able to touch patients is also a loss. "You convey a lot of empathy with your hands," he says.

But he gives plenty of empathy to other paralyzed people, who seek him out. "I do a lot of counseling about the stigma and stress of being disabled," says Duncan. "Depression is much more disabling than the physical limitations. Also, third-party payers shuffle the disabled out of rehab before they figure out how to make a living. I’ve helped people get into vocational rehab and find career paths."

A marathon man despite his handicaps

FP Peter Powers knows firsthand the discrimination the disabled face. An insulin-dependent diabetic since he was 14, Powers developed diabetic retinopathy when he was 34 and became totally blind in 10 minutes. "The image of an unshaven man with a tin cup flooded over me," recalls Powers. "All I could think about was being destitute. I was in despair that after working so hard and practicing only five years, I could no longer be a doctor."

That’s what the Anchorage health clinic that employed Powers thought, too. He was told his position had been eliminated, only to find out a few weeks later that another doctor had been hired. "I thought about filing a discrimination suit," says Powers, "but this was the only clinic in Anchorage caring for the indigent. I was afraid the Feds might not give it funding if I sued, which would only hurt the patients."

It was at a party, as he counseled a new friend who was having difficulties following hernia surgery, that Powers realized he could still practice medicine. "So much of medicine, such as treating diabetes, hypertension, or heart disease, doesn’t require vision," says Powers. After getting encouragement from a few blind practicing physicians he had met through the American Society of Handicapped Physicians, Powers found a two-doctor practice willing to take a chance on him, and he hired a PA to be his eyes.

A month before starting his new job, Powers miraculously recovered his sight. But his celebration was short-lived. Over the next year, he would lose and regain his sight five more times. "It was a very discouraging time for me," he says.

Finally his vision stabilized, and Powers started his own practice in Anchorage–only to find out his kidney function had decreased by half. Told he had 18 months left on his kidneys, Powers started a then-experimental protein-restricted diet, and his kidneys returned to normal in four months. That year, Powers was also named Handicapped Alaskan of the Year.

Powers, 50, is blind in one eye and visually impaired in the other. But that hasn’t stopped him from running 32 marathons and avidly pursuing cross-country skiing, cycling, rafting, kayaking, and folk dancing. Powers now has a solo practice in Prescott, AZ, and works five hours a week at the student health center at Embry-Riddle Aeronautical University. He has also been invited to speak to diabetics in Australia and Singapore, and to talk in Russia about self-healing.

A Medical Economics Web Exclusive

From his wheelchair, a role model for patients

Unlike physicians who’ve had to alter their practices to adapt to their disability, rehabilitation medicine specialist Steven A. Stiens, a T2 paraplegic, had the advantage of picking the specialty that worked best for him. But first he had to convince a lot of people that he could make it through medical school.

In 1982, the summer before he was to start medical school at the University of Cincinnati, Stiens had neurosurgery to try to improve a limp and toe drag caused by a blood vessel malformation of his spinal cord. He woke from the anesthesia with very reduced sensation from the upper chest down and mere toe motion of his right leg. He now has only trace movement in his left leg.

In demonstrating that he could accomplish his medical rotations, Stiens often had to come up with practical and creative adaptations on his own. Because he can’t move spontaneously and quickly, he assisted from the sidelines during codes or trauma surgery. But he had an advantage in elective surgery. Using a stand-up wheelchair, he could hold a retractor for hours without the leg fatigue his classmates experienced.

After completing a residency in rehabilitation medicine, Stiens spent three years at Johns Hopkins, where he designed a class that introduced premed students to clinical practice. The students were introduced to a variety of medical units as Steins evaluated patients throughout the hospital, and they helped him position his patients. Now, at the University of Washington VA hospital in Seattle, Stiens specializes in spinal cord medicine, which includes supervising recreational therapy for those with spinal cord injuries. When he’s not struggling to find more time for his wife and four children, including 18-month-old twins, Stiens goes camping, kayaking, and hand bicycling with his patients.

Although some of his younger patients express a desire to follow in his footsteps as a physician, Stiens often steers them to less demanding careers in the helping professions, such as nurse, social worker, or psychologist. Yet Stiens is convinced that disabled doctors who can adapt to their medical specialty have an edge over able-bodied physicians because they bring unique perspectives to research and teaching and provide motivation, inspiration, and understanding to patients facing similar circumstances.

Healing from the heart, not the hands

Emergency physician Bruce Feldstein’s disability forced him to find another career–and he’s much happier for it. In August 1997, Feldstein, then 43, was storing a friend’s dresser in his garage and felt a "tremendous tearing in my back."

Although barely able to walk, he went to work that night at Northern California Kaiser Permanente. An MRI revealed two ruptured discs, but less clear was when or if his back would heal. For eight months, Feldstein worked 8 to 12 hours a week when he was able. A consult with a spine surgeon wasn’t encouraging. Fusion of the lower two lumbar levels had a 5 to 10 percent chance of helping, but it would also accelerate degeneration of the upper discs.

Feldstein, who had studied biomedical ethics and had some management training, explored other options at Kaiser: working as an ethicist, heading up a physician wellness program, quality improvement administration, and fielding patient inquiries by phone. But nothing clicked. "The key question I was avoiding was, Where is my heart?" says Feldstein.

He found the answer at a conference on Jewish medical ethics, where a rabbi suggested he become a lay chaplain. "A Jewish chaplain?" Feldstein remembers asking. "I thought all chaplains were Christian." As luck would have it, Stanford, where Feldstein had taught emergency medicine residents, had a yearlong residency in clinical pastoral education. After 19 years as an emergency physician, Feldstein felt he had "finally come home."

Feldstein is now the Jewish chaplain for Stanford and the Lucile Packard Children’s Hospital. He ministers to patients and staff of all faiths, and teaches "Spirituality and Meaning in Medicine," a required course for medical students at Stanford.

Feldstein leaves the MD off his badge, but he sometimes tells patients and families he’s a doctor. When, for instance, a Russian Jewish family didn’t believe that physicians could do nothing more for their father’s congestive heart failure, Feldstein was able to help them accept that stopping medical intervention was the right decision. He still has weekly physical therapy, and occasional major flare-ups of his injury. But the arduous process of following his heart has paid off. "When I sit with a family, it’s very different from the medical approach of fixing the problem," he says. "Yet, in terms of healing, I’m doing more than I ever did."