Beyond Words: Illness and the Limits of Expression by Kathlyn Conway

By Kathlyn Conway

Released debts of sickness and incapacity usually emphasize desire and confident considering: the girl who nonetheless regarded appealing after wasting her hair, the fellow who ran 5 miles an afternoon in the course of chemotherapy. This acclaimed exam of the style of the ailment narrative questions that upbeat technique. writer Kathlyn Conway, a three-time melanoma survivor and herself the writer of an affliction memoir, believes that the triumphalist method of writing approximately sickness fails to do justice to the shattering adventure of disorder. through wrestling with the problem of writing concerning the fact of significant sickness and harm, she argues, writers can supply a more true photo of the advanced dating among physique and brain.

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Eventually additional tests indicated she suffered from macular degeneration, a disease that was causing her to slowly lose sight. ”49 When she asked about learning Braille, she was told it was unnecessary and too hard. Perhaps the triumph narrative played a role here. If she could manage to read without Braille, she could appear normal. In fact, she was ingenious about ‹nding ways to adapt: she read with magnifying glasses and held the book close to her face. This caused pain above her eye that spread to her forehead and other eye and also caused pain in her neck and shoulder muscles.

Doctors, therapists, and even parents often encouraged or even insisted that children with polio live out the triumph narrative, sometimes to the point of cruelty. Mee describes being placed in boiling tubs of water, swathed in hot, wet wool blankets that were then wrapped in plastic sheets for two or three hours, and having his limbs stretched. Although these treatments often did nothing to improve a child’s ability to move his or her legs or hands, their uselessness went unacknowledged even by the children undergoing them.

6 I use the term triumph narrative to refer primarily to the myth that those who are ill can confront their illness as a battle, do so with courage, and ‹nally triumph and share with others the lessons they have learned. As a concept the triumph narrative incorporates or makes reference to several predominant cultural myths—the Christian story that suggests salvation is a reward for suffering; the Horatio Alger myth whose moral is that people can, with hard work and determination, The Cultural Story of Triumph / 21 pull themselves up by their bootstraps; the New Age myth that implies illness can be controlled by proper behavior or attitude; and what I call the myth of the beautiful sufferer, which suggests that a person can remain beautiful even when terribly ill.

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