During a visit with one of my patients this past week, I stopped for a moment to let him know how much I admire him. He is a young man with cerebral palsy. He is wheelchair-bound and his spasticity and muscle wasting give him the appearance of cognitive impairment although he is intellectually intact. In addition to his physical challenges, he also faces a series of psychosocial and financial challenges. It is difficult to find a caring partner, supportive friends, gainful employment, or reliable transportation. It is also difficult, unfortunately, for him to find a primary-care doctor with the needed expertise in the nuances and complications of cerebral palsy (although this one is trying). In addition to all the physical challenges you’d expect, he is facing others that appear less serious but actually are quite bothersome including an enhanced startle reflex that makes him the victim of endless practical jokes.
As I carefully drive home through snowy winter streets in our town, I see him waiting patiently on the sidewalk in his electric wheelchair for the “walk” signal to indicate that he can cross the street. His hands are bare, even in freezing temperatures so that he can operate the joystick on his wheelchair. He pushes through snowdrifts and tells me he sometimes gets stuck. When I mention how admirable it is that he goes out in the snow and doesn’t let his disability hold him back, he looks at me oddly and remarks, “I’m doing what has to be done”. He even jokes about an encounter with a passing pedestrian who advised him to move to Arizona, where he wouldn’t have to worry about slogging through snow in his wheelchair.
Thinking about my patient, I consider all the things I try to teach my children — be polite, use a napkin, do your homework, don’t lie, cheat or steal, wash your hands, look both ways, do your best. Rarely do I point out the example of someone like my patient. I give other examples of people to admire — people who are successful in the traditional sense, but fail to impart the admiration they should feel for people for whom navigating the daily mechanics of life is both a great challenge and a great success.
As a family physician, I meet these people every day. My patient, confined to his wheelchair, demonstrates another type of success and reminds me to teach his lesson to my kids.