What I Didn’t Learn From Being Paralyzed
A mysterious disease trapped me inside my body, and I’m still wondering why
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 your eyes on this page. There’s no cure, and often no explanation. Guillain-Barre afflicts one in 100,000 people each year, and tends to go away on its own, though 20% are left with residual paralysis. It can also kill you by putting a chokehold on your lungs.
In other words, this disease is the medical equivalent of a sensory deprivation chamber — with no guarantee you’ll regain your senses. It’s nature’s all-inclusive tour through the world of near-death, complete with a bungee jump over a lifetime in a wheelchair. It’s a letter from your body, or fate, or God, reminding you that reality is unthinkably fragile, that your body is held together with glue and Scotch tape and every moment it’s not falling apart is a miracle.
The privilege of youth is the ability to forget you have a physical existence, or to remember it only when it’s convenient.
Walking was the first thing I lost. My legs went stiff, numb, and then limp. Soon, I lost typing. Then, swiping. Rolling over in bed came next. Standing was impossible. I lost chewing on a Tuesday afternoon in September, when I woke up and couldn’t swallow eggs. The following Sunday, I opened my eyes and everyone had two faces. My vision had doubled overnight.
If you’d asked me, sometime during the summer of 2016, what I feared most I might have said full-body paralysis. Hillary Clinton was going to be president and “Closer” by The Chainsmokers played on loop in every CVS and also, I was fine. I thought my immune system was on my side, and together we walked for hours without a destination — down the stairs from my walk-up apartment, across an enormous park, past movie-set houses with giant dogs and built-in bookshelves.
Short of death, paralysis is the worst thing that could have happened to someone like me. If you’ve ever watched a medical drama, you’ve seen it: sharp cut to a hospital bed, concerned faces, someone in a lab coat telling someone else that their condition has progressed too far, there’s no turning back, the signals won’t travel, I know this is difficult. Grey’s Anatomy has used paralysis as a blood-pressure-raising subplot 12 times. Dr. Death, a podcast about a spinal surgeon who mutilates his patients’ central nervous systems, went viral because not having control over your own body is a waking nightmare.
Life is motion. The world is literally moving, and if you want to survive within it you must move, too.
When you’re paralyzed, you’re forced to confront the basic fact that your body acts according to its own devices, no matter how much you fool yourself into believing otherwise. You realize that your legs, lungs, and heart don’t care about your five-year plan or the elaborately calligraphed items in your bullet journal. This car can veer off the road because the brake is an illusion, the gas pedal only works when it’s raining, and your license is printed in invisible ink.
My mom bused in from Philadelphia, slept in my apartment, and arrived to the hospital every morning armed with an uneasy smile. Friends from high school drove to Manhattan and poured half-pints of water into my mouth because, by then, I couldn’t move my arms. They told inside jokes from 2004. Unfolded pieces of paper I hadn’t seen since fourth period biology. Stood around on their perfectly functional legs.
One of them had just been to Burning Man. He told a nurse about a naked drum circle as she drew my blood.
It was easy to assume I would be paralyzed permanently. I knew it was statistically unlikely, but given the state of my body it was hard to rule out. One night, a nurse asked if I was an only child — when I told her I was, she burst into tears. A medical student woke me up at 2 a.m. to tell me that Jesus loves me and I should pray to him, because He healed a paralyzed man in the Book of Matthew.
Did I think I would die? Did I stare into the Death Star? Did I hover above my body and whisper affirmations in my ear? Did I have a Rainer Marie Rilke moment and decide to Change My Life, to transform into a butterfly, to cherish the temple of my body and wake up every morning at 6:00 a.m. to manifest? Did living without a body teach me anything about how to live within one?
Sometimes I wonder if I’m exceptionally immature or if I’ve tried to write about this too soon, because I fear the answer is no. I never had an awakening. Mostly, I stared at the sponge-paint hospital curtains, the glittering Pepsi sign across the East River, the seaside-braindead hospital aesthetic, and tried to forget I was there.
The world is literally moving, and if you want to survive within it you must move, too.
I do remember, late one night, staring at a ceiling on the 12th floor of NYU Langone Medical Center and realizing this could end in full-on death. I was shocked at the audacity of death, that it could happen when I’d never smoked, rarely drank, and spent most of my time staring at my computer in a quiet room. Seconds later, shock mellowed into giving up and asking someone to press play on my Spotify Discover Weekly playlist. I reminded myself that I’m no more special or lucky than anyone else.
I could die like this. I could die like this. I could die like this and there’s nothing I can do about it.
“Your body wants to heal,” the inpatient psychologist said to me once. It was a Tuesday afternoon in October, and I’d been paralyzed for a month. She was sitting on the radiator as light streamed through the window behind her and I sipped an Ensure juice box. I hadn’t thought my body wanted anything. It seemed to follow its own dumb directions, fighting enemies that didn’t exist. If anything, it wanted to self-destruct.
I was transferred to inpatient rehab, a section of the hospital for people who’ve been paralyzed so long medicine gives up. I went to class: physical therapy in the mornings and music class on Wednesdays, where I sat in a wheelchair and sang along to The Supremes. After weeks of being M.I.A., my legs twitched back to life — literally, with an uncanny electric sensation that made me feel like Frankenstein’s monster.
My body refused to hand over the controls, even as it was fixing itself.
I’ve always suspected that I’m weak. Doesn’t everybody? Doesn’t everybody have that suspicion that maybe they’re not Good or Enough, so they fill it with core-strengthening and Equinox selfies and heathered v-necks? I’m tiny. I’m gay. I can never win an arm wrestling match. The littlest things make me question everything. I’ve always tried to cover up my suspected fragility. To be the first one to respond to the email. To smile at the end of a Difficult Conversation. To agree with you before you’ve even finished your sentence.
I want to believe my legs came back to life because I summoned internal strength I didn’t know I possessed, but I know that’s not true. My body refused to hand over the controls, even as it was fixing itself. My sight went from double to single overnight, and I woke up one morning suddenly able to see. It felt like biology was performing a magic trick.
I’m fine now. You probably know that already. Yesterday, I walked in the park and listened to a podcast about the history of French fries. I ride the subway, bookmark wellness blogs, and text back and forth with some of my best friends without ever seeing them in real life. Redemption arc, complete. Happy ending, achieved. Take your booster shot of inspiration, your tiny slice of faith, and CTRL+W this tab.
I was lucky enough to be part of the 80% who survive my diagnosis relatively unscathed. On a Thursday night in October, almost exactly three years ago, I took a cab home from the hospital just like I dreamed I would. I returned to the tedium of The Real World, buying groceries and stressing about work and, eventually, trying to make time to process what had happened. It felt like I’d been cast in some winding subplot in a medical drama, only to be dropped from the show, back at home and wondering why I was even cast in the first place.
No neurologist has been able to tell me what triggered this, and I still don’t know what it means. I haven’t learned anything I can package into a small speech before the last song. (We’re at a wedding, remember?) Maybe the lessons are in me, somewhere between my amygdala and my nerves, my cerebellum and the tips of my fingers. Maybe they’re in the way I sprinted across the park last night, the way I stand in line at the grocery store on my perfectly functional legs, the way I sit in front of my computer reading other people’s thoughts. Maybe they’re in the way I’m typing this, that liquid-fast typing thing that happens sometimes when I forget about my body and think instead about what I’m saying, where I’m going, and the story I’ve told so many times I don’t know what it means.
