Two decades later, I lay in a guest room in my father’s house, waiting to see if my skin would begin to peel from my body. I had finally been given a diagnosis: atypical Stevens-Johnson Syndrome (SJS). SJS is usually caused by a new medication that confuses the body and triggers a reaction similar to an autoimmune disorder, but mine was most likely triggered by mycoplasma pneumonia. Most patients with SJS lose between 10–95% of their outer skin. A few die. Care is “supportive”—in other words, there is no treatment for the condition itself, only soothing the pain it causes. Since medication usually acts as the catalyst for SJS, taking any new meds is risky. I was prescribed Tylenol with codeine and topical anesthetics, like the “magic mouthwash” usually given to treat mouth sores caused by some kinds of chemotherapy.
I was lucky that only my mucous membranes and not my skin had erupted—although this was also one reason it took so long to diagnose me. Just 300 or so cases of SJS are identified in the United States each year; only a couple dozen cases of the typical presentation may ever occur within the entire population of the metro Chicago area, where I lived. Keeping my outer skin made me “atypical,” which also meant that for weeks, no one had any idea what was happening to me. Finally, an ophthalmologist suggested I might have SJS. I was visiting him because my sight was blurry; the crusts around my eyes were less worrisome than the lesions in my eyes themselves, which could leave behind permanent scar tissue.
Once diagnosed, I begged my skin to stay on my body. I apologized to the descendants of cells I had spent my adolescent years attacking. For almost a decade, I had regularly sliced into my left leg with scissors, and rippled scar tissue testified to hundreds of cuts. Now, just as then, it felt impossible that the body I occupied truly belonged to me, that we were inseparable—that we might not survive without each other.