Dozen

For some time now, and with increasing frequency since coming to Cape Town, I am asked how I came to be interested in palliative medicine. I usually answer by talking about my time working in social medicine; it is true, it is accurate, but it is wildly incomplete.

The full truth is this: half a lifetime ago I sat on my father’s hospital bed while his surgeon told us that they would both do everything they could, but that their primary goal was to keep him comfortable. It’s the last time I remember my father being fully cognizant, although he lived for another year and a half. In that time he underwent surgeries, radiation, chemotherapy, and was on a cocktail of drugs to prevent seizures and reduce the swelling in his brain.

Hospice became involved at some point, although it was for longer than the insurer-prescribed six months. We learned how to guide him as he lost his sight; and tricks for delivering medication. I remember having coffee with a chaplain and not knowing what to say, how to make sense of what had happened to my life. And I remember our community coming together as an informal care unit, keeping our freezer filled with dinners and providing rides to school and to doctors’ appointments. And I remember my father’s physicians, how attentive they were to us, how they bore witness to our pain and confusion throughout the process.

These are experiences of illness that work against suffering, but supportive care alone provides little relief in the face of physical discomfort. And so the physicians tended to his body as well his family. To the extent that medicine could provide relief for him, it did. We were lucky in this regard, as my father’s symptoms were mostly cognitive, and he suffered negligible pain. As a family, our suffering was great, but essentially limited to the personal and spiritual realms. Suffering beyond that—from poverty and inequality, for example—is beyond my imagination.

So how did I get here, working to improve access to palliative care drugs in rural South Africa? Experiencing the effects of good palliative care, before I even knew the term—that’s a good starting point. But it’s hardly a straight line from my family’s experience to here; years of education, formal and otherwise, have intervened to shape my goals. I’m here in part because of a genetic sense of social justice, from my conscientious objector grandfather, to my father, who marched against Vietnam in his dress whites, and my mother, who came out in the cold New England winter to knock on doors for Barack Obama.

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Today is a dozen years since my father died. I have mixed feelings about it – after all, until 1997, June 24 was nothing but an early summer day. And then it became a marker in my life, a place to orient a before and an after. As each year has passed, I have been able to see more clearly the role my father’s death played in shaping my life. At one year, I was lost; at five years, I was found, and beginning to think about a future of some sort; and at ten years I was writing my application essays for medical school. At twelve years, I’m here, in an office thousands of miles from home, on an ordinary workday. In many ways, I’m worlds from a life with my father, but at other times I can conjure his encouraging voice. I know he would be proud of me—he always was—but sometimes I’d trade anything just to hear him say it one more time.