The Empathy Exams by Leslie Jamison Read Free Book Online

do what they think is right.
    The CDC finally released the results of its study “Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy” in January 2012. The report is neatly carved into movements— Introduction, Methods, Results, Discussion, Acknowledgments —but it offers no easy conclusions. Its authors, the so-called Unexplained Dermopathy Task Force, investigated 115 patients, using skin samples, blood tests, and neurocognitive exams. Their report offers little comfort to Morgies looking for confirmation: “We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition … or wider recognition of an existing condition such as delusional infestation.”
    The bottom line? Probably nothing there.
    Methods
    The Westoak Baptist Church, on Slaughter Lane, is a few miles south of the Austin I’d imagined, a city full of Airstream trailers selling gourmet donuts, vintage shops crammed with animal heads and lace, melancholy guitar riffs floating from ironic cowboy bars. Slaughter Lane isn’t vintage lace or cutting-edge donuts or ironic anything; it’s Walgreens and Denny’s and eventually a parking lot sliced by the spindly shadow of a twenty-foot cross.
    The church itself is a low blue building surrounded by temporary trailers. A conference banner reads: Searching for the Uncommon Thread. I’ve arrived at the conference in the aftermath of the CDC report, as the Morgellons community assembles once more—to regroup, to respond, to insist.
    A cluster of friendly women stand by the entrance greeting new arrivals. They wear matching shirts printed with the letters DOP slashed by a diagonal red line. Most of the participants at the conference, I will come to realize, give the wholesome, welcoming impression of no-nonsense midwestern housewives. I learn that 70 percent of Morgellons patients are female—and that women are especially vulnerable to the isolating disfigurement and condescension that come attached to the disease.
    The greeters direct me past an elaborate buffet of packaged pastries and into the church sanctuary, which is serving as the main conference room. Speakers stand at the makeshift pulpit (a lectern) with their PowerPoint slides projected onto a screen behind them. The stage is cluttered with musical equipment. Each cloth-covered pew holds a single box of Kleenex. There’s a special eating area in the back: tables littered with coffee cups, muffin-greased plastic, and the skeletons of grape bunches. The room has one stained-glass window—a dark blue circle holding the milky cataract of a dove—but the colors admit no light. The window is small enough to make the dove look trapped; it’s not flying but stuck.
    This gathering is something like an AA meeting or a Quaker service: between speakers, people occasionally just walk up to the podium and start sharing. Or else they do it in their chairs, hunched over to get a better look at each other’s limbs. They swap cell phone photos. I hear a man tell a woman: “I live in a bare apartment near work; don’t have much else.” I hear her reply: “But you still work?”
    Here’s what else I hear: “So you just run the sound waves through your feet … you see them coming out as chunks, literally hanging off the skin? … you got it from your dad? … you gave it to your son? … My sons are still young … he has fibers in his hair but no lesions on his skin … I use a teaspoon of salt and a teaspoon of vitamin C … I was drinking Borax for a while but I couldn’t keep it up … HR told me not to talk about it … your arms look better than last year … you seem better than last year … but you feel better than last year?” I hear someone talking about what her skin is “expressing.” I hear someone say, “It’s a lonely world.” I feel close to the specter of whole years lost.
    I discover that the people who can’t help whispering during lectures are