What I Didn’t Learn From Being Paralyzed
A mysterious disease trapped me inside my body, and I’m still wondering why
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Three years ago, I was paralyzed from the neck down for six weeks.
If you know me, you know this story. I’ve told you at a birthday party, or maybe a wedding, during a lull in the reception when everyone’s a little too drunk to really get it. Dessert’s been served and the DJ is getting ready to play “Uptown Funk,” so soon I’ll have to start shouting this story at you, yelling over Bruno Mars about how lucky I am, how magical and wonderful it is that I can walk — dance, even! — on this day, the marriage of a second cousin I haven’t seen since ninth grade.
In the fall of 2016, I was diagnosed with a rare disease that paralyzed my arms, legs, hands, feet, and parts of my face. My smile became a one-sided smirk, like I was the villain in a bad movie. My fingers went limp and curled inward. My tongue froze in the center of my mouth and refused to help me pronounce words — which is one of my favorite things to do.
“Do most people with this disease walk again?” I asked every morning. I always asked this question in third person, because first person never got a straight answer. Doctors love to equivocate, especially when the questions are coming from someone who is paralyzed from the neck down.
“Hard to say,” a medical resident said to me once.
Weeks earlier, I was 29 and healthy. My body was something I thought about rarely, if ever — a vessel that contained my opinions about Noah Baumbach films, carried me from my bed to my job to my bed, and converted paychecks into $4.00 iced coffees. The privilege of youth is the ability to forget you have a physical existence, or to remember it only when it’s convenient: during sex or all-you-can-eat sushi dinners or those first few minutes after a SoulCycle class.
I had Guillain-Barre Syndrome, an autoimmune disorder. Everyone pronounces it differently — the vowels are your canvas. It’s what happens when your immune system goes postal and attacks the myelin insulating your nerves. Without myelin, signals evaporate on their way from your brain to the ends of your toes — or your fingertips, the corners of your mouth, the tiny muscles that focus…
