A Matter of Appearance
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 Salpêtrière 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.
“Drawing on the archives of sickness and her own experience as a patient, she demands a more nuanced understanding of the diagnostic categories of mental illness and biological illness”—The New Yorker
“A Matter of Appearance brilliantly gives language to the body, and measures the distance between the kinds of narratives that tend to be projected onto women’s bodies and the stories these bodies are actually telling. Perceptive, fascinating, superb.”—Lauren Elkin, author of Flâneuse and Art Monsters
"A Matter of Appearance is what the genre of 'sick lit' is missing: Wells ties up the loose ends between the rich history of hysteria, consumption, and modern stories of autoimmunity, while resisting the maudlin. Absolutely dazzling."—Lena Dunham
“Wells’s rare autoimmune disease is only diagnosed when she becomes an adult, having suffered since childhood from symptoms that were chalked up to her emotions. Yet she quickly begins to understand that ‘just because something has a name doesn’t mean people believe it is real.’ This follows in medical scenarios: being asked to quantify pain on a scale of 1 to 10 is a struggle, ‘unsure of how to turn a sensation into a number.’ … Writing through and of pain will inevitably include these complications of expression, and A Matter of Appearance serves a reminder that it is still worth trying to translate a perpetual scream.”– Art Review
"Emily Wells in her new memoir A Matter of Appearance...manages to shift the issue of pain into the public sphere without pretending that it is easily legible."—Emma Cohen, LARB