What Should I Say? Communication around Disability

Every so often, we all experience moments that crystallize an essential truth about our lives. Last spring, I had one in the cramped interstices of a federal office building in Washington, D.C. Before a meeting, I hurried to a back office to use the telephone, but a man was already there. We recognized each other instantly.

“It's been 20 years,” I said. “You taught that great course on patients' experiences of illness. It helped me decide to go to medical school.”

“I remember you well.” He paused, eyeing me with momentarily unguarded sadness. “I heard about your troubles.”

My mind raced. What troubles? Instantaneously a student again, I wondered what this professor could mean. Academic troubles? That would be too awful! Then I understood. “Oh, you mean my multiple sclerosis [MS]? I don't think of that as a trouble. I'm doing fine!”

We spoke telegraphically, catching up, until my meeting began. Later, I rolled onto the mall below the Capitol. The day was glorious, but I could think only of the encounter with my former professor. My reaction puzzled me. Why had I not immediately understood what he meant by “your troubles”? I felt that he was saddened to see me in my wheelchair; when he knew me 20 years ago, I ran everywhere. I also sensed that he wanted to hide his sorrow. This worried me; I didn't want to distress him. Why was I compelled to reassure him that I was fine? His look also conveyed admiration, something that makes me uncomfortable. Given the alternative, what could I do but go on? And, yes, what I told him was true. My MS does not feel like “trouble”-just the landscape I live in. How had I arrived at this point?