What It's Like to Get Temporarily Paralyzed
Nothing is as important as the exquisite ability to stand on my own two feet, something most people take for granted. I know all about this entitlement because I once had it too.
Image: Natalie Jeffcot/Stocksy
The electrocution test at Mount Sinai Hospital in New York City is pretty much the worst. They take you down to the dungeon of the hospital with the evil scientist doctor to test to see how much nerve damage you have. The way they do this is by hooking you up to an electrocution table, and strapping your body in metal. Then the madman dips an electric prong in water, touches the device to various parts of your arms, legs, hands, and feet, and proceeds to turn up the juice to see if you can feel it. He starts real low, and then continues to up the voltage. One spot at a time.
It feels like I'm down there for hours, being electrocuted bit by bit, piece by piece, and the whole problem is I can't jump up and run out the door, afraid for my life as I am. I guess this executor is trying to reassure me by saying he does this test to himself. Does not reassure. I once wrote Joseph Heller about this, because he succumbed to the same hideous Guillain-Barré Syndrome as I (see his bittersweet memoir, No Laughing Matter), and was in the same hospital, seeing the same doctors, doing the same therapies. But it almost sounded like a party in his room, with a constant stream of cool friends and writers, and it's also where he met and fell in love with his private nurse, who he ultimately married. So I asked him if he ever cried while he was in the hospital, because I cried all the time, and he wrote me back and said yes, that he cried after the electrocution test.
They say it strikes one in 100,000. Or that you probably know one person who has had it. Andy Griffith had it. Joseph Heller had it. A famous movie star's mother had it. And in 2003, there was talk at CNN and Science Magazine, among others, that FDR most likely did not have polio, but Guillain-Barré Syndrome (which I've personally dubbed GBS), a devastating neurological auto-immune condition wherein the nervous system begins to attack itself in a rapid-fire manner. Every case being unique, GBS presents via a variety of symptoms, making it difficult to diagnose, but the worst-case scenario is paralysis. Paralysis of your diaphragm, causing inability to breathe. GBS can start at the top of your body and work its way downward, or begin at the bottom and move upward, in a matter of mere days, or even hours.
What is this? I can't walk. Can I? My knees are weak. My voice is gone. I'm choking. Dizzy. Everything feels cold when it touches me. My skin is tingling. Five doctors in five days tell me there's nothing wrong. I go to my mom's house, and she and her boyfriend tell me I need Prozac and send me home.
Friends and my then-husband carry me out of the apartment. Several doctors later, I'm sent to the emergency room. Someone calls my mother to tell her what's happening.
"I don't believe it," were my mom's words. "Joseph Heller had that!"
I'm put in the geriatric stroke ward, critical care unit. I surrender to my body, my nerve endings literally unraveling, the very definition of GBS. I lose most muscle strength. My foot feels like it's completely torqued inward, but it's pointing straight ahead.
I don't want anyone to touch my lower legs and feet. Doctors make me memorize letters and words, and repeat back to them. My face is impaired, and I get swallow therapy. A spinal tap. An MRI—and you can move inside; it's not true that you can't. The electrocution test. IVs. Gamma globulin. Monitors. Breathing tests. Bed pans. Neck pain. Roommates. Visitors. Flowers.
Eleven days later, the damage done, and I'm sent to the Spinal Cord Injury Rehab Center, because they don't know where else to put me. I've got thousands of therapists to help me build up my body, one muscle at a time, yet they all ask me the same question: "What would you do if you found yourself stranded with a dollar in the Denver airport?"
I have no idea what their obsession with Denver is about.
My roommate calls me a princess because I don't want to talk to her, or anyone, and her friend tells me his mother had teeth so hard she could chew rocks. Soon after, I get a private room, with private nurses, 'cause my mom, I think, feels guilty and can afford it. I cry all the time, though they beg me not to, and when I'm not crying, I'm bitching.
But I work hard, and learn to slide across the transfer board, elbow my way up to sitting, velcro myself into the standing machine, and try to tolerate the unbearable explosive tingling in my legs and feet for five minutes. Ten minutes. Fifteen minutes.
I get a crush on the gorgeous guy with the broken neck who dove into a Mexican beach where he shouldn't have, but he and his heartbroken mother won't talk to me once they find out I don't have a spinal cord injury. There's a communal field trip to see The Matrix, but I don't go, because there's a young man lying next to me on the rehab tables who was shot eight times, and he did not bounce back like Keanu Reeves.
I'm interviewed for Fox 5 News and they try to turn me into a soundbyte. That was one time I refused to cry! Plus, they include my story in a sequence about campylobacter and consuming spoiled chicken; though I tell them I didn't get GBS from bad chicken—nobody knows how I got it—apparently one can. Undeterred, they splash a banner across the bottom of the TV screen during their GBS/bad-chicken bit about me: "Jenny Klion: Victim," it says, and I get a lot of phone calls the next day. I never eat chicken again.
I'm handed wheelchair gloves and wheel around the inside of the hospital. Outside on the street with my nurse, I pass inaccessible stores and restaurants, and stop reading fashion magazines. People cut in front of me in line, their butts at my eye level, but my voice is weak and I say nothing. I learn to walk down parallel bars, and later with a rolling walker, and finally make a joke with the therapists that I'm ready to "walk and roll." No one but me thinks that's funny.
I get a complication, a blood clot, and need twice-daily injections that really put a damper on my day. I use two canes to leave the hospital, six weeks after I was carried in. I have instructions on what to do if I fall down in the middle of the street. I have instructions on how to get my shower bars and chair. I have instructions on when to go to outpatient therapy. I have instructions on everything.
According to his New York Times obit, Joseph Heller had a great fear of vaccinations, as do I. If you've been afflicted with GBS, you're not supposed to receive any type of vaccine going forward, because it could possibly trigger a recurrence.
So I never went to Africa with my Italian boyfriend, and I won't go to India where one of my brothers-in-law is a mega rockstar. But I did once write a play called Fear of a Rusty Nail, so named for the time I anxiously asked the doctor, "What if I step on a rusty nail?"
"Then you'd have to get a tetanus vaccine. Because you can die from tetanus, but you can't die from Guillain-Barré," he matter-of-facted me. Never mind it already felt like I had died. But then I came back to life again, so very thankfully. My road home could've gone many other ways; I had an acute case with full recovery, and I've since avoided rusty nails very successfully. Ten percent of survivors suffer a recurrence within ten years, but mine happened the year before the bicentennial ('twas my own personal Y2K), and it's been 18 years and counting.
Yet it's still part of my reality, a piece of my story, and remnants of the experience crop up for me still. Sometimes when I get sick, I fall into a PTSD anxiety fever, though as the years go by, this threatens me less than it used to. And recently, when my mom died, I was given the very large Chagall print of a floating couple that hung in her front hallway; I'd never known that the gorgeous piece of art was a gift from my mom's boyfriend to my mom, bought in Israel, when he went on their trip without her, because she stayed home to help me make it through GBS, sans Prozac.
If you look at me now, you'd never guess I was once too weak to rip off the paper wrapper on a straw. And true, my legs aren't as strong as they look, and I've got a bit of asymmetry happening around my mouth when I talk. I can't fulfill that yoga move where you lie on the floor and then swing your legs back behind your head, and I've also never found myself stranded with only a dollar in the Denver airport. Nothing, really, is as important as the exquisite ability to walk, and stand on my own two feet, something most people take for granted. I know all about this entitlement, because I once had it, too.
I count the Chagall print now as one of my GBS scars. Along with the small mark on the inside of my arm where an impatient nurse ripped out my IVs none too gently, over and over again. Plus my letter from Joseph Heller, which arrived in an elegant envelope, just months before his death:
Both amusing and sad to read your letter, and pleased you wrote it. I cried once (I believe I wrote about it) after that EMG test and receiving a letter from the daughter of a friend. I felt sorry—and frightened—for myself often, especially as I started to recover and perceived how slowly that progressed and that there was no way to guess or affect the extent of the recovery. Mine was not complete, although I've been able to do just about everything I have to, and luckily for me, there's been no pain.
I hope all goes well with you—forever.
It was more or less horrible, especially at night, when no diverting distractions occur.
All the very best to you,