“Mommy, are you okay?” an unfamiliar woman’s voice called through the hospital room’s bathroom door. It was 6 a.m. and she heard me retching, again. I hated that the hospital staff called me Mommy when the only one entitled to do so had lost his ability to speak.
After six weeks in the neurology unit, the encephalitis affected my son’s brain stem, which stopped reliable communication with his heart and lungs. We were transferred to the ICU. Crisis alarms rang. Medical teams ran in. Doctors and nurses took over for my husband, who was already performing CPR. My son thrashed in pain and agitation as his brain withstood his immune system’s assault. Doctors told us his prognosis was good, if we could support him through this acute phase via multiple life-sustaining surgeries. The constant beeping, the red crash cart parked outside our door, the stale smell of the doctor’s breath as he stood too close to discuss my son’s “death dives”—I felt nauseous at all times.”
The above is from an article written by Sandra Joy Stein titled, “There is no P in my TSD” published in The Establishment. Sandra continues to share her story about her son’s fight with AE, and what life is like for some families after diagnosis. Her story, “Home is a Medicine Unto Itself,” in The Atlantic speaks to turning her family’s two-bedroom apartment into a makeshift hospital for her son’s long-term care.
Sandra Joy Stein is a writer, education consultant, and mother of a son with an extreme medical condition. Prior to her son’s illness, she was the CEO of an educational leadership nonprofit and an education professor. Her work has appeared in the New York Times, The Washington Post, and The Atlantic.