A Matter Of Appearance : A Memoir of Chronic Illness

Emily Wells, a former ballerina, spent her childhood dancing through intense, whole-body pain she assumed was normal for someone used to pushing her body to its limits. For years, no doctor could tell Wells what was wrong with her, or they told her it was ''all in her head.'' It was only in college that she learned the name for the illness she had been suffering from all her life: Behcet''s Disease, a rare congenital disorder causing blood vessel inflammation throughout the body, arthritis, and swelling of the brain. In A Matter of Appearance, Wells, now a professor of creative writing at UC Irvine, traces her journey as she tries to understand and define this specific and personal pain, internally and externally. She draws on the critical works of Freud, Sontag, and others to explore the intersection between gender, pain, and language, tracing a line from the ''hysteria patients'' documented at the Salpªtri¬re Hospital in nineteenth-century Paris through to the contemporary New Age healers of Los Angeles and beyond. At the crux of this is the dilemma of how to express in words an experience that is both private and public, subjective, and quantifiable.