Ed N. White

Myasthenia Gratis

I use the Latin word Gratis, far from its etymology. A cheap trick, a play on words. But in this context, free means free of a dreadful disease.

* * *

We were older students living with our two children occupying half a Quonset hut in married student housing at a large Midwestern university. Life had taken several twists and turns and landed us there as undergraduates trying to do better for ourselves. It wasn’t easy with both of us being full-time students and my second-shift job in a meatpacking plant.

A few months before graduation, my wife had some health issues. It was nothing serious, some occasional weakness in her face and arms, a slurred word here and there. After several visits to Student Health, the doctor determined it was probably caused by seasonal allergies. Since we were soon returning to our New England home, we were willing to let that slide.

The night before we left, a neighbor from Germany, an M.D. pathologist doing post-doctoral studies, knocked on our door. He motioned me to come outside and told me in a hushed voice that I should get my wife to a doctor as soon as possible when we arrived home. He didn’t put a name to his suspicions. He just told me to do it and went back to his quarters. I didn’t tell my wife what he said.

The day after we arrived in our home state, I called an old family doctor, a prior neighbor, who I knew well and asked for an appointment. This man still carried the black bag of medical supplies and instruments and made house calls. We went to his office, he listened to my wife’s story, examined her, and gave her a small brown envelope with three pills. He said to take only one each day, that should make a difference, and we should call him in two days with the results. My wife took one pill that day and felt better. Even better, with the next day’s pill. That night, planning to go into the city for an event, she took an extra pill, just in case. We didn’t make it to the event. We barely made it to the E.R. The drug (Prostigmin) confirmed what the doctor suspected—she had Myasthenia Gravis. The extra pill she took on her own nearly cost her life. (Prostigmin is a tablet form of lethal nerve gas.)

Over the next few months, the disease got worse. The G.P. referred Grace to a Neurologist who changed her prescription to Mestinon, and she carried on. She didn’t have the strength to brush her hair or button a blouse–I did that for her. She had trouble with words, but she had the courage and a will to beat this thing beyond that. She turned the ignition key in her old V.W. Bug using a dinner fork for leverage.

I wanted to go beyond the medical, convinced that there was more that could be done. We were avid disciples of the nutritionist, Adele Davis, writing about natural health. We pursued that in parallel with the established medical protocols. We read every word in Let’s Get Well (1965), looking for answers. Ms. Davis also felt there was a causal link between herbicides, pesticides, and Myasthenia Gravis. We lived for four years in Iowa. An aerial dusting of these chemicals sometimes drifted through town like fairy dust. Driving through these areas was like feeling the way through a coastal fog.

I heard about a Naturopath in Cambridge, MA, that people raved about for his anecdotal cures of everything and anything. I knew someone who knew someone else, who knew him, and we were able to get a coveted appointment for his home office near Harvard Square. We were willing to try anything.

His office looked like an alchemist’s. He had tinctures and potions displayed in antique glass-front cabinets and weird contraptions that appeared homemade. He seemed to be unsure of what MG was, but it was worth a shot. We would try anything. After several visits, my wife felt some improvement, probably more from the power of suggestion and willingness to be so than any “medical” intervention.

We continued to search and hope for anything beyond the legitimate care she was receiving. When our sister-in-law joined a Silva Mind Control group who offered their help, we were more than happy to receive their concentrated thought waves.

On her next regular visit to the neurologist, he said that a treatment protocol focusing radiation on the thymus gland had produced some positive effects. Notwithstanding the possibility of some bad stuff happening. We talked it over, weighed the options, and my wife was willing to take these chances. She underwent a series of these treatments in a Boston hospital and, over time, began to improve. The improvement continued, far greater than the neurologist had anticipated. She grew more robust, and the debilitating symptoms disappeared entirely at a time when the disease was spotlighted by the death of Jackie Kennedy’s husband, Aristotle Onassis, who succumbed to MG in 1975.

What turned the tide for my wife? Who knows? Even the neurologist was unsure. But she has been free of the disease for nearly half a century.

Present-day medications and treatment protocols have brought significant improvements. Once, there was little hope of long-term survival for Myasthenics. Often called the “snowflake disease” because no two people are affected in the same way. Now, there is every reason to believe that the disease can be controlled. The path forward looks so much brighter for those afflicted.

* * *

Author’s note: I started writing this essay several months ago and got sidetracked. My wife never got the chance to read it.

Grace beat the hell out of Myasthenia Gravis but didn’t have the same luck with a faulty aortic valve. She died in November 2020–three days before the scheduled replacement. Three weeks before her eighty-third birthday. R.I.P.

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About the Author:

Ed N. White lives on the Suncoast of Florida, writing about the past and hoping for a global, COVID-free future. He has forsaken his dozen novels of murder and mayhem and written a series of middle-grade mysteries under the pseudonym of Celia J. The first of these, Miss Demeanor, will be published by Histria Books in September, 2021.