Personal Narrative: Guillain Barre Syndrome

Grimacing, I crossed the finish line. Two pulled hamstring, cramping calves and feet so frozen, from the cold Michigan day, that I could not feel my toes. Physically injured, I was mentally strengthened. A pride emanating not solely from the completion of the unlikely task I had capriciously decided to undertake just 48 hours prior, but also from the substantiation of a conviction. The belief that through determination anything, including running a marathon without any prior training, could be accomplished. While I had always been in a good shape, it was the lack of exceptionalism—in fitness and other aspects of my life—that produced my motivating dissatisfaction. I felt constrained by my innate deficiencies and desperately sought evidence

Non-fatal in most patients (92%) and normally recoverable, the diagnosis came as relatively welcome news, but was measured against the doctors’ warnings that my case appeared to be “complicated.” They informed me that, generally, with Guillain Barre Syndrome, symptoms got worse before getting better and that due to my “cough”—as I had thought it as the time—being pneumonia, they feared that if the muscle weakness spread to my already strained breathing muscles, that I may need to be placed on a breathing tube. They treated me with plasmapheresis, a plasma exchange in which my blood was filtered through a machine, treated and then supplemented with a donor’s plasma before being returned to my body. After six sleepless nights and three plasmapheresis sessions, in which every subtle movement was met with a prickling, acute pain and in which every word I uttered was accompanied by a lisp courtesy of unilateral facial palsy, I finally felt as though I was improving. As I was able to partially flex my feet, one physician encouraged me to test my mobility. With the help of a nurse, they picked me up, placing me perpendicular to the bed, which sent a shockwave of pain through my gluteus maximus which screamed at the task of supporting the weight of my body. Facing a walker, the insistent doctor and nurse lifted me up again, as I shifted my weight to my arms delicately placed on the walker, then ever so slowly diffusing the burden to my legs and feet. Upright, I stared at my neon orange Nike Flyknit running shoes, the same pair I had worn during the marathon and now wore in bed to prevent “foot drop”— in which the forefoot bends forward because of muscle weakness and nerve damage. Gingerly, I moved my right foot two inches in front of my left, completing my first step since being admitted to the hospital. I