Living with myasthenia gravis: high-stakes treatment to the body

“Living with myasthenia gravis means preserving your energy, saving your strength.” | ©Helga Gorshe / Behance Creative Commons

The neurologist was a brilliant man whose lab coat barely skimmed his knees. He spoke fancy words into a small tape recorder while I attempted a series of simple tasks. Press firmly against my hands. Harder, harder, harder. Shut your eyes. Squeeze. Harder, harder. Squat. Walk. Whistle.

What defined failure? Weakness, both a feeling and a fact.

News of the grim diagnosis spread like wildfire, the long spiral beige telephone cord wrapped around my mother’s finger. First, to her Sunday school class, where my name was added to the prayer list. The future is uncertain. The medications are terrible. Chronic. No cure. Pray for one. To neighbors, who brought food, mowed our grass. She’s too weak to swallow. Chew. Chokes when she eats.

A meeting with my high school principal. She can’t read… well, she can see, but everything is double. The eye patch helps, but then her eyelid droops.

The ladies at Hair Tamers, who carried me up the salon’s stairs, the pungent smell of cigarettes clinging to their puffy sleeves, acid-washed Jordache jeans as they tilted my head into the basin, combed fingers through my frizzy, tangled curls. She’s too weak to comb her hair.

On weekends, friends littered the Holiday Inn with beer cans and Dorito bags. While I sat alone in the whitewashed walls of the hospital, navigating a chronic illness that would brand me, define my future. My nerves and muscles were healthy, but the connection between the two was sick; grave. Myasthenia Gravis.

Spring bled into summer. Instead of lounging around the community pool in a neon bikini, flirting, and skimming cliff notes for junior year’s required reading, life involuntarily piled on the back burner: driver’s education, a part-time job at Dairy Queen, cruising the mall. I missed basketball camp, slumber parties. Adults stopped promising a bright future. I stopped dreaming of one.

WARNING: Medications may cause:

Weight gain. (Stop counting at 40 pounds.)

Swelling of the fingers, hands, feet, lower legs, face. (Stretch marks spun like spider webs behind my knees, shoulders to elbows, covering my stomach.)

Agitation and irritability. (I hate nearly everyone.)

Increased appetite, acne, red face, sweating, menstrual irregularities, dry mouth, trouble thinking, mood changes, aggression. (I hate nearly everything.)

Living with myasthenia gravis meant that treating my symptoms was paramount. The prescribed steroids doubled, then tripled in preparation for a radical thymectomy. First, a tracheal intubation, my pubescent body supine, arms tucked by my sides. Sterile prep, scrub, and paint the chest, marking the meticulous transternal incision the length of my sternum. Chest cut with scissors. Pried open. A sternal retractor carefully placed, wedged under each side of the bone that was never meant to be in two parts. Complete removal of the soft tissue between two nerves – my thymus – this step the most important influence on my long-term survival. Bone wax. Skin glue. Needle connected to wire. Stitched.

Part medical mystery, part gamble, nothing was guaranteed except that I’d be left with a 12-inch scar down the middle of my chest. The surgery was a probability of potential risk, potential reward. Simply, a guess. What defines success? Remission? Cure? Quality days or quantity? 

Living with myasthenia gravis for three decades, I’ve run tepid water from the sink, cupped it in my hand, and washed down fistfuls of dusty white pills. If I’m counting, it’s 55,000, give or take, and the label’s fine print is blurry without my reading glasses. Total reliance on something destructive is an arduous dependence, but keeping score is for sports, credit reports, and Baccarat.

WARNING: Myasthenia gravis medication may cause:

Increased risk of pregnancy loss and congenital malformations. High risk of fetal abnormalities.

Pneumonia, influenza, respiratory tract infection. In addition, use may increase susceptibility to may infections.

Lymphoma may develop as a result of immunosuppression.

Today, I can walk, squat, whistle.

Today.