My heart’s newfound fluttering in my chest, I sit in the auditorium, half circles of cushioned seats facing a stage. A conference: illness, narrative, disability, medicine. I think about my body in pain. My body in pain listens to presentations on the body in pain.
Question: Sontag taught us illness doesn’t mean anything; illness is just illness. But aren’t we creatures who make meaning? Who relish stories, plot development, denouement? Who desire happy endings. Or barring happiness, desire at least a sense of an ending.
Here’s a happy ending: my body failed, continues to fail. And I am learning to live with it. There is no overcoming. It is no use wishing for something else.
Question: There is no overcoming?
Answer: Sometimes you can’t neatly tie together a narrative.
My heart flutters: a whoosh of blood relapsing when my mitral valve doesn’t close tightly. “Insignificant,” according to the cardiologist. My “new normal.” I feel it constantly. Behind my breasts in pain.
“What else to say?” Theodore Roethke asks.
A presenter distinguishes between illness—what she calls “transitory” and “needing to be fixed”—and disability— an “aspect of enduring identity.”
Question: What if illness is chronic? What if disability is not tied to identity?
Question: Does it matter what stories we tell? What changes when we change our stories?
Another presenter says every day we feel well is contingent. I like that word, contingent. Meaning: “of uncertain occurrence, befall, something happening by chance.” Contingent, my body’s pain, my heart’s fluttering.
Answer: Roethke: “We end in joy.”
“Life is amazing,” Valerie Harper says. She is dying faster than many of us. “Live it to the fullest. Stay as long as you can.”
I sit in an auditorium, listen to presentations on illness, medicine, narrative, disability.
Answer: Life and death. The heart flutters. Pain and no pain: contingent. There is no overcoming. Stay as long as you can.
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Planet of the Blind 