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No Pain, No Gain: Trying to Exercise With Myasthenia Gravis

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In my periphery, beautiful women gracefully pose in escalator lunge. Salty beads of sweat trickle down my back, my neck, my arms. My left leg extends back and I clumsily place my right heel on the platform of the Megaformer, a spring-loaded machine that puts Pilates on crack. My muscles are overloaded, causing my lower body to convulse like a wind-up toy. In the corner of the room, a tank top mocks me with its printed message: EMBRACE THE SHAKE.

At the end of class, I fold into a weary pigeon and dream about what it would feel like to perfectly execute a bear, a spoon, a spider, to live inside a healthy body that is not chronically ill, does not perpetually resist.

I am promised the Megaformer will tone and strengthen my body.

I am promised this training is for everyone.

I am certain it is for everyone except me.

Lisa, my instructor, paces the room with the grace of a gazelle. She has watched this torture unfold over the last 18 months. She is like my mother running beside me down the small hill on our driveway just after taking the training wheels off my bike. Lisa is there before I make a mistake, working the same leg twice in donkey, in skating. Lisa intuitively knows when I am on the verge of collapsing to my knees in scrambled eggs, when I can no longer lift my arms into newspaper.

There is a rumor that Lisa trained Olympic athletes. I see little flashes of her proudly standing beneath the podium as Simone Biles accepts a medal. Every Tuesday, I come to her class and chase my award, my spotlight, my victory.

“Let’s get started.”

I climb onto the Megaformer, ready to hinge on Lisa’s every word.

“Push out into a regular plank.”

For me, it is not a regular plank.

Nothing has been regular since my body began attacking itself nearly three decades ago.

“You are strong.”

My vision has doubled, speech slurred, eyelids droopy. Swallowing choked me. I tried to answer a question in biology class, but when I raised my hand it was as if there was a weight attached to it, pulling it down. My legs felt heavy. I could not lift them.

I quit basketball, going to school, cruising the mall.

I started seeing doctors, taking medications, sleeping constantly.

The most important foreign translation I learned my sophomore year of high school was that myasthenia gravis means grave muscular weakness. My nerves were healthy and my muscles were healthy, but the connection between the two of them was grave.

I was not prepared to be weak. Weakness is not something for which you can prepare.

I know I am weak. This is both a feeling and a fact.

“Lift your chin from your chest. Your shoulders are down and back. Use the mirror.”

The scar, the neurosurgeon told me, would be about 10 inches, right down the center of my chest. The best doctors in the state were summoned, I was assured. I was only a teenager, a child. Precision was used when they cut through my chest, broke my chest bone, removed my thymus gland, put me back together.

The surgeons did their very best to make me whole. To give me a chance for remission, for hope, for any sort of life, for a future.

The massive doses of steroids prepared me for the long surgery and the long recovery that followed. Like spider webs, the stretch marks crept up my arms, my stomach, my hips.

I gained weight. I was warned I would likely gain more. I was warned the surgery might not work. They would likely be able to get all the pieces of my thymus, but this was no guarantee my illness would improve. I was warned that waking up in critical care might be so painful I wouldn’t remember it. I was warned that recovery would be brutal and slow, that I might not be able to go to driver’s education classes, to work at Dairy Queen, to start my junior year of high school.

“Breathe. In through your nose, out through your mouth. Let your breath help you.”

I fell on the dining room floor of my childhood home. In an attempt to stand, I knocked over all four chairs. My arms were tucked underneath my torso, my head turned toward the side. I steadied my shallow breath. My weak lungs struggled to find air, even though it blanketed the atmosphere. The surgery did not work. At least not for the moment. My body did not allow me to stand. I willed it to move; it would not. My voice did not allow me to call for my mother. I hoped for a scream, but I was so weak I birthed a whisper. She finally discovered me. A few minutes later, she picked up the beige phone in the kitchen and called the neurologist office. She can’t walk, my mother explained to the nurse. She graduates from high school next week and she can’t walk.

“Quick transition into elevator lunge.”

According to the Unofficial University Dormitory Policy adopted by bullies, elevators are meant for people going more than four floors. My room was on the second floor of the high rise, a safety precaution in case of an Act of God that required an evacuation. The doors of the elevator closed. I pressed two. The bullies told me I was fat because I was lazy. I was fat, lazy and couldn’t even walk my lazy fat ass up one flight of stairs.

“Only 45 seconds left in this move. You can do anything for 45 seconds.”

Four weeks after I arrived, I left the university on a medical waiver.

“Grab the pole beside your Megaformer. Use it to help you balance.”

I am older now. I am still sick.

The brown vinyl chair was comfortable and the nurses compassionate, bringing me Styrofoam cups of crushed ice and making jokes that they are margaritas. I had the wheelchair, just in case, but I could stand on my own so I took a few steps, dragging the IV pole behind me. Fluids from a clear plastic bag seeped into my body, fluids that worked to keep me walking, breathing, alive.

I tried to work from my laptop, mostly to keep my health insurance.

I was distracted, exhausted, ready to give up.

Seated next to me was a middle-aged woman who had a bright blue drip through her line. She has multiple sclerosis, she told me, her tongue and eyes turning a glowing blue, the color of the Pacific Ocean, of Easter eggs. I did not tell her multiple sclerosis was mercilessly murdering my father, who has not yet turned 60; that the last time I visited him in the nursing home, he did not recognize me.

I said nothing as she licked her lips and softly complained about the metallic taste rising up in her mouth. I looked away, noticed that the two of us were the only people in the chemotherapy room with hair, aside from the nurses.

“Slow it down. Four… three… two… one…”

In the fetal position on my bathroom floor I counted – to 25, to 50, to 100. The treatments were the uncomfortable part. It’s what followed that blurred the line between what I thought was possible to endure and what actually is. Counting calms me in pain. I am certain, as I articulate each number in the shallows of my head, that at some point, at some number, at some sound, I will realize the pain is gone.

My bruised arm is sore from the needle that fed me the antibodies that allowed me to swallow, to move, to walk. Those same antibodies – those from a donor – are not meant to be in my body. It revolted. This was the axe grinding into my skull, the hurricane churning in my stomach, the pulsing in my brain.

There is only one pain that counting doesn’t cure.

This is grief.

I counted to 32, my age. I grieved that much of my youth was replaced by my sickness.

“Stop when you need to, not when you want to.”

I am middle-aged now, reminded each day that I am still sick. The scar, the stretch marks, the five pills each day. I have managed to make beautiful things out of the beautiful times of my life – a degree, a husband, a home.

I am better. I manage, at times even excelling. It is a mystery that so far, no physician has been able to solve. Chronic illness is a puzzle, a riddle, a battle.

The team of doctors I’ve collected over the years issue warnings. I am warned by my neurologist that I’m a four-cylinder car in a six-cylinder world. I am warned by my gynecologist not to have children. I am warned by my hematologist that the drugs that keep me alive will one day stop working – attack me, kill me.

However, none of these doctors ever warned me I would take Lisa’s class for 18 months and struggle to watch the strong women around me perform a perfect pike to plank push up combination, while I rest my knees on the Megaformer and fight to complete a sloppy wheelbarrow, the pose reserved for recovery, for new people, for “weak” people, for defeat.

“This is where the magic happens.”

It is noon on any recent Tuesday and I took a mid-morning nap so I would have the energy to come to Lisa’s class, to climb into the trenches, to go to war. I have given everything to the Megaformer, but Megaformer has still mastered me, has made me its bitch.

I use my soft pink yoga towel to wipe my damp face before I pop onto my toes at her command.

I claw my way into dancing bear.

I fall back into wheelbarrow.

I fight my way back into dancing bear.

This story originally appeared in Intima: A Journal of Narrative Medicine and Dreamers Creative Writing.

Originally published: November 21, 2018
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