A Matter of Appearance: A Memoir of Chronic Illness

A dazzling memoir of chronic illness that explores the fraught intersection between pain, language, and gender, a debut author.

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, who now teaches 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 Salpetriere 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.

A work of crystalline beauty and razorlike insight, A Matter of Appearance introduces a much needed millennial voice to the literature of illness.