How to Tell When We Will Die: On Pain, Disability, and Doom

In these sharp essays, novelist Hedva (Your Love Is Not Good) reflects on living with chronic illness. In “Sick Woman Theory,” Hedva discusses how flareups of their fibromyalgia and chronic shingles cause searing pain that leaves them bedridden for months at a time. They push back against misogynistic associations between illness and a concept of femininity defined by weakness and fragility, instead asserting that “you don’t need to be fixed, my queens—it’s the world that needs the fixing.” This focus on the social construction of disability recurs throughout, as when Hedva laments in “Letter to a Young Doctor” that “wellness” is often functionally synonymous with an individual’s capacity to contribute to capitalist enterprise. “She, Etcetera” praises Susan Sontag’s perceptive writings on illness even as it critiques Sontag’s personal view that “if she was not healed, even completely cured, she had failed,” an outlook Hedva decries as founded in the ableist assumption that illness constitutes an aberration from a “normal” state of health. Hedva’s philosophical takes on disability are consistently illuminating, even if the subject matter makes for heavy reading (“Can I Hit You?” explores the complex connections between the physical abuse Hedva endured from their mother as a child, the pain from their illness, and their preference for masochistic sex). Probing and sophisticated, this is worth seeking out. (Sept.)