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My life as a patient changed the day I reread a letter by the nineteenth-century poet John Keats in which he offers a theory of what makes an artist great. At the the time of its writing, Keats had witnessed his mother die from tuberculosis, then a poorly understood disease with an unclear cause. Soon his brother Tom and later himself would die of the infection. In the letter, Keats - in his early twenties - tried to e plain to his brothers the special quality that differentiated a great artist form a merely good one. “Negative Capability,” as he terms it, is the quality “of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason.”
I couldn’t escape the sense that Keats’s words about the necessity of “being in uncertainties” derived form his own experience of living with consumption’s impact on his family. In fact, his formulation of negative capability seemed to be a key to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to the alive *is* to be in uncertainty.) I was grateful for his words, because they reminded me that I wasn’t living off the known map of human experience. Rather, I had felt invisible in my illness, I realized, because American culture - and American medicine within it - largely strived to downplay the fact that we still know so little about illness. A doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: *Just do it. What doesn’t kill you makes you stronger.* no wonder that as a patient I was bent on an “irritable reaching after fact & reason.” The shadowland I lived in, forced against my will into what Keats called the great “Penetralium of mystery,” was an uncomfortable and unsatisfying place, especially since I lived in a culture that Donita’s the importance of triumph over adversity - a culture that insists on recovery.
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