Rare Disease Week

From The Storm (a chapter in my memoir):

The radiant, white beam of light pierces my eyes as I gaze up at the checkered ceiling. I rub my fingertips methodically against the plastic paper covering the examination table while the dark-haired nurse clicks on her keyboard, periodically asking me questions as she fills in my chart. The hum of the grey machine above me fills the gaps of silence in the room. “You are going to feel a small pinch,” the nurse warns me as she fingers a thin, shiny needle. I grit my teeth and squeeze my eyes tightly as I hold my breath. Cold and tingling, a rush of saline shoots into my vain and floods my arm like a cottonmouth snake slithering upstream. She connects the bendy, clear tube, that is now attached to my arm, to one of the grey machines overhead. The doorknob turns, and a bald, Russian man wearing a white lab coat marches into the room. Minutes later, I am uncomfortably strapped against the table I am laying on. The room gets dark and fuzzy, and machines beep as the table starts to raise up, moving my body into a vertical position. Immediately, the room begins to spin, and my head feels like a feather in a gust of wind. Snippets of Russian-accented words coming from the bald man overwhelm me: “Ellie. Ellie, can you hear me? Raise your right arm if you need us to stop. You have twenty more seconds until the test is complete, and then we can lay the table back down. You are doing great. Try to keep your eyes open.” Everything goes black. 

In honor of Rare Disease Day, which was on February 28, I wanted to share this piece of writing that commemorates my rare disease diagnosis. This piece describes my experience undergoing the Tilt Test--the procedure that led my neurologists to diagnose me with Guillain-Barré Syndrome. While I felt relieved to finally have a diagnosis, the rareness of my disorder brought overwhelming uncertainty. It is easy to get swept away in the odds--odds of full recovery, odds of survival, odds of death--but after beating the odds of GBS, I learned that odds don't come close to matching resilience and faith.