Sometimes people are offended that I didn’t tell them when I was sickest, that I kept the fatigue and the pain to myself for months and months. I say, “it was a dark time, I didn’t really tell anyone.” This is not exactly true. But it comes close enough, and I still find it hard to explain what it feels like to be inside a body that is closed in by great pain on all sides. Then, as now, the narrative collapses—there is no form, no genre, no model to give hints about what might happen next, and the energy of accepting the pain, trying to soothe it, or worse, resist it, takes all that is left of the self. The disease attacks the cricoarytenoid joint of the larynx and my voice cracks. I am rendered mute from pain. There is no energy, no voice left for storytelling.
In retrospect, whatever kernel of “truth” emerged from the experience sounds hyperbolic: the stuff of melodrama. Freckles upstaged by a whole galaxy of palpable purpura that climbed like angry spiders up my feet and legs. Fingers, toes, wrists, knees—all swollen into unrecognizability. Vials of bright yellow liquid and boxes of syringes. The bargaining and shaky hands of the first few self-injections. Fatigue that hit me like a linebacker and pinned me to the ground. Waking in the middle of the night to the sensation of a knife slicing through my lower abdomen. The daily lattice of hair in the shower drain and the shock of white where my scalp was exposed.
We have stories about cancer, heroic stories of resistance and remission, and sad, or sometimes uplifting, stories about those who do not make it. We do not have stories about those who face great pain with no identifiable foe, pain that will dog them for the rest of their lives, pain that is the result of the body turning against itself, permanently. I will spend whatever years I have left trying to both accept and outrun this pain, with an arsenal of needles and pills as my only weapons. There is no “lesson” here except that life is random and parts of it are miserable. Some people face the misery earlier, and some later. Sometimes the pain comes from within, and sometimes from without. Whatever mindfulness and compassion I have gained are not a result of the pain—they are my last defense against it. Pain is not a teacher, it is a torturer.