The Good Patient

by Galen Buckwalter. First published in the New England Journal of Medicine.

The visit to my doctor was not terribly out of the ordinary. I had waited several months, hoping the pain would remit, but the throbbing in my shoulders, initially episodic and activity-related, became constant, woke me early in the morning, and made me reluctant even to try to exercise. So there I was in my doctor’s office, waiting. But this time, as I waited, I talked to a digital camera I had perched on the exam table.

Every time I watch this scene, I cringe — not at the time wasted in waiting, and not even at the fact that, as I noted in the film, “it would take a hell of a gimp” to make the transfer from my wheelchair to the examining table. I do get a bit irritated when the doctor eventually waltzes into the office and, after having me reach over my head and touch the back of my head, cheerfully tells me I probably have “acromioclavicular strain.” But what makes me want to cover my eyes every time is the way I interact with my doctor. I am a professional research scientist, a member of several study sections at the National Institute of Mental Health, a vice president of a successful company that I played a pivotal role in developing. I don’t consider myself brash, but I am certainly no wallflower. Yet there I am, on screen, wagging my head like a dashboard puppy. I then agree with a saying that is not only inaccurate but degrading: “Your arms are your legs, too.”

Well, my arms are not my legs. My shoulders, however, as subsequent imaging demonstrated, are largely lacking in cartilage, and they hurt terribly. Not because they are my legs, but because I have stubbornly used them to push a manual wheelchair for over 30 years in my determination to live as independently as possible. Yet in the exam room, I see myself unable to communicate this problem effectively to my physician; instead, I collaborate in his avoidance of the real reasons I am there.

In looking back at that scene, I see myself in crisis. I am beginning to wonder whether I can tolerate the increase in pain. I live in a manual wheelchair, which is, in a meaningful sense, my legs. I enjoy the gentle dance of playing with gravity as I swivel down slight grades and the jarring thwack of timing the jump across a large crack in the sidewalk — every bit as much as I used to love the feel of freshly cut grass on bare toes. Yet I am aware that many people who once moved just as synchronously with their chairs now can barely get out of bed independently. Shoulder replacement may loom, or trading the control and synergy I feel with my manual chair for the additional dependence that comes with a monstrous power chair. Coming to my doctor represents my recognition of the inevitability of another profound loss 30 years after my spinal cord injury. Though I have no illusion that anyone can relieve the emotional pain of my physical loss, the superficiality of our interaction left me alone to cope with a significant advancement in my disability. My physician’s failure to study the literature on the diagnosis and management of disorders of weight-bearing shoulders delayed effective treatment; in retrospect, his response to my problem seems like incompetence. But I am convinced that if he had simply sat down, looked me in the eyes, and talked to me, he would have gained information that would have made the visit far more beneficial.

Looking at my life through a camera lens gave me a different view of my disability and my interactions with others. My zeal for objective research crumbled when I became a subject in the documentary film ROLLING. I realized I couldn’t portray, much less live, my life as an object if I wanted to be engaged as a person, not a specimen or a data set.

On one level, my camera’s presence gave me a currency in other people’s eyes that I typically lack. Perhaps because I live in a city that values what it sees on screen above all else, when I went out with my camera, it validated me. Suddenly, everyone wanted to know why I was so important as to be filming my life. Granted, this is not the stuff on which one wants to build a sense of self, but it beats being ignored. In addition, the camera seemed an open invitation to others’ stories. Who knew so many people had spent time in wheelchairs, had a wheelchair-bound aunt, had narrowly escaped being disabled by an injury?

At another level, ROLLING allowed me to shift from attempting to describe my experiences to showing my life to the world. And as life emerged, so did complexity; the camera became both friend and adversary. It challenged me to show something relevant, something creative — and, as in the doctor’s-office scene, revealed gaps between my implicit goals and my words and actions.

As a disabled man, I must maintain lifelong relationships with health care providers. I typically feel compelled to be the good patient, the patient to whom medical professionals will respond. Repeatedly, I have seen compliant stoicism rewarded with more time, more generous touch, more attention to my medical needs as a middle-aged, C6-C7, hypertensive quadriplegic. Expressing the emotions that accompany living with my disability evokes varied responses, but seldom has a physician responded by becoming more engaged or more determined to understand how my experience of disability can inform medical treatment. But the process of making ROLLING changed forever the expectations I bring to encounters with physicians.

Can video cameras help other patients make themselves known to physicians in ways that will improve the quality of health care interactions? Some of the scenes we filmed are difficult to watch, but they happen. Through them, I see what I hope will change. I have experienced what it can be like to engage with nondisabled persons without trying to anticipate what they want me to be — and such memories provide a cherished antidote to the feeling I reexperience each time I watch that doctor’s visit unfold. Ultimately, at least for me, taking the camera changed the equation.