When Disease Is Stained by Fate

My patient and I were walking down the tiled floors of the hospital ward, past the other patients' rooms, every door flung open like in a college dormitory but none of the rooms very inviting. He was pushing a walker while his physical therapist hovered warily behind him. We gently nudged past the nurse's station, where the gift shop had just dropped off the morning's flower bouquet deliveries and arrayed them on the countertop. We were almost around the bend by the elevator when he looked up at me and said:

"You know something? Every man in my family has died at the age of 53."

I didn't know what to say, and so I said nothing. We shuffled slowly back around to his room, and his physical therapist helped him back into his bed. His wife went downstairs to get some breakfast for the two of them. I needed to get back to the providers' workstation and finish my notes, but couldn't make myself leave.

So I said: "I want to talk about it," bluntly, into the newly emptied room.

He looked remarkably peaceful and serene for a man who was just given the diagnosis of primary progressive multiple sclerosis -- pure progression, no relapses -- an hour back.

Our entire medicine team had filed formally into his room at nine that morning to tell him. I hung back behind the attending physicians, residents, and interns, but had enough of a clearing to see the emotions flooding his face. He was seeing the pieces of his amorphous future suddenly click into place, the resultant design vivid and violent and capricious.

We had met him and his wife five days previously; they had flown in from two thousand miles away for a second opinion. He had all the classic symptoms of multiple sclerosis, but without the family history or the confirmatory imaging findings. And the severity of it was astonishing. Within the span of four weeks, he had gone from cross-country skiing across the Montana highlands to pushing himself in a wheelchair that looked much too small and pitiful for his large, muscular frame.

After I interviewed the couple for his medical history on the first day, I went down to the cafeteria to get a coffee with his wife. She probed me as to what I thought, scanning my face intensely for any giveaways. They hadn't previously had significant run-ins with the medical system, if she thought a third-year medical student would have these answers.

"Tell me about how you're feeling," I said, interested in pushing away the feelings of tourist guilt.

She told me about their life together. How they were high school sweethearts. How he brought a sense of adventure and irreverence to her life, their backpacking through South America, their love for camping and skiing and kayaking, his motorcycle, her band, their brief stint in a Midwestern commune, their decision not to have children so they could always remain spontaneous and daring and on the move.

Listening to her was thrilling; they'd led a life so radically different from my own, ensconced as I was in the defined trajectory of medicine (lectures, laboratories, libraries, lethargy).

I was on my neurology rotation, and still learning. Every day I learned something new: how to localize confusing symptoms into the complex anatomy of the brain and spinal cord, the therapeutic algorithm for seizures, how to approach the physical examination of a comatose patient, how to limit the progression of stroke. Something else that I was slowly learning: how to tolerate the discomfort of helplessness. Even for my most critical patients, with Parkinson's, or stroke, or chronic pain, or intractable seizures, the finest therapies could at best mitigate and manage, but hardly ever cure and clear.

Now here was my patient, strong and light, now wheelchair-bound, accepting his diagnosis without a trace of anything that even remotely resembles victimhood. This perversely made me feel even more desperately impotent.

"My wife is taking this badly, of course," he said. "But sometimes you can't fight fate. And I've lived a good life."

He told me about his father who died of alcoholism-related complications at 53. The grandfather who died of his third heart attack at 53. The cousin who passed in an automobile accident at 53.

"How old are you now?"

"51."

There was a masculine intensity in this, in this relentless recounting, this paraphrasing. To him, these were not singular events, but rather proofs of fate, repeated in every generation and in the consciousness of every male descendant. I heard something like nostalgia when he, like his wife, talked about his former life. But the nostalgia was mixed up with confidence in the narrative, a serene understanding of the bounds of his life, this territory.

For me, the disappointment was hard to shake. For him, there was no lamenting.