On Being an Author with Muscular Dystrophy: Drooping Eyelids, Swivel Chairs and Other Writer's Blocks

Article Highlights:
  • The author, who's affected by myotonic muscular dystrophy, sets out to write a novel despite physical challenges and unexpected roadblocks due to his disability.
by Ed Conte on October 1, 2010 - 5:00pm

QUEST Vol. 17, No. 4

From where I sit, in the sucessor to the Blue Chariot — a snazzy power chair with hazard lights — I pose this question: Should a 66-year-old man with limited use of his arms, hands, fingers and neck due to myotonic muscular dystrophy attempt to write a novel? Well, the answer to this poser is simple — NEVER! Like the kids say, “Duh!”

Unless you are a complete masochist or on the cutting edge of crazy, save yourself the heartache, alienation and probable divorce, and forget the thought ever entered your head.

However, being a man who loves a challenge, at Christmastime 2007 I decided to commence my pursuit of literary fame. If I knew then what I’ve learned these past three years, I would not have set out to write the great American novel. Water torture is preferred.

My initial obstacle involved transferring from my power chair to a proper seat in front of my computer. My then-loving partner bought a high-backed and very comfortable chair for my adventure into authorship. The downside was that it swiveled. Some days I looked like a 2-year-old trying his best to get on the playground merry-go-round while the older kids did their best to keep him off. Other days I simulated the whirling propeller on top of the kid’s beanie. When the situation hit the “red alert” level, I decided to abandon the comfortable chair and go with old faithful, Blue Chariot. This, of course, did not enhance my standing with my by now not-so-loving partner, who had spent a couple hundred on the office chair.

Ed Conte

Because of drooping eyelids, I figured my restricted vision also would hinder my efforts, so I sought out an optician who could supply me with “eyelid crutches.” If you’re not familiar with this device, let me explain. Usually there is only one guy in the state who does this work and when you walk or wheel in, he looks at your lids and the more they sag, the bigger his grin. If you’re having a good day and you actually can see more than the inside of your baggy lids, you can detect little dollar signs wafting from somewhere around his wallet. He’s the only game in town, and he knows it.

The crutches are two wires soldered to the top of your frames, providing a place to rest your raised lids. Doesn’t sound too technical or sophisticated, so my guess regarding cost was conservative. Then, the optician explained with the solemn concern of an undertaker that my particular frames were lightweight titanium and solder wouldn’t adhere to them. So I bought new heavier, metal frames from him.

Next came the wire crutch part. These two dinky pieces of flimsy wire, which look like disposed paperclips straightened out by some nervous convict at his parole hearing, cost more than the frames. After clutching my chest to make sure my pacemaker didn’t rip through my skin, with shaky hands I signed my name to a check for more than $600. Sweat formed on my upper lip as I prayed the balance in my checking account would cover it.

Finally I was ready to write. Using a wrist support bar on the computer desk and the seat riser and tilt functions of my power chair, I succeeded in getting my arms and hands in the general vicinity of the keyboard. I paused, fingers at the ready like a dog on point, but because my rigid digits don’t bend, the tips kept hitting the keys above the desired letters. As you can imagine, the resulting gibberish did not endear me to the initial editor, who happened to be my once-loving partner. Being no fool, I soon learned to use my typing errors as excellent excuses for poor writing.

Notice I said once-loving partner. I believe, with no reservation, she truly loved me before the start of the writing project. However, by the time I finished the manuscript, I had been banished to the den, and she desperately began searching for a saner home to inhabit.

So, I wrote a novel, all 140,000 words of it. It may not be THE great American novel, but it is a pretty scary thriller about a character a lot of Quest readers can relate to: My protagonist is wheelchair-bound with muscular dystrophy. He breaks new ground in fiction as a disabled man thrust from a placid existence into a harrowing entanglement with a psychotic killer. In the fast-paced story Blue Chariot, the main character’s wheelchair takes a commanding role as a weapon used against unspeakable acts by a human demon. [Spoiler alert: In the final scene, Blue Chariot actually saves the protagonist from decapitation.]

The author's "rigid digits" make typing a challenge.

Now, I don’t want to exaggerate my investment in this fanciful book-writing escapade, but with printing costs, postage and other items I’ve already mentioned, my total outlay is well over $1,500. If I decide to self-publish and self-promote my book, the expenses will soar like smoke in a forest fire. A few months ago, I attended a writer’s conference and discovered, because of today’s market conditions, my chances of getting published are about one in a thousand. Need I say more?

Remember my once-loving partner? She was quite explicit about this subject. It became the number-one issue at each of the few monthly meals where she allowed my presence at the same table. Those dinners always concluded with her reminding me to make an appointment with a psychiatrist.

But here’s the flip side. I’ve loved every moment of writing. The physical and financial struggles paled in comparison to the rush of crafting a finished product from my own idea.

I finished a second novel, Mistake, and am well into a third, another thriller called The Governor’s Wife. I’m enjoying writing more and more. The best part is, winning a contest last spring and having an essay published in the online edition of the AARP Bulletin Today helped convince my partner I’m not totally without talent. I’ve been allowed to transfer my sleeping quarters from couch in the den to sleep sofa in the guest bedroom. I’m inching my way back toward the master bedroom.

And when my once-loving partner learned a New York literary agent had taken an interest in Blue Chariot, she gave me an audience and actually asked for an update. I told her the agent had read my inquiry letter, asked for 10 pages and then 40 more. I’m still waiting to hear from him. My once-loving partner told me not to hang by my thumbs in the meantime, but then she bought me some new pajamas.

Things are looking up.

Ed Conte, 68, lives in Ocean View, Del., with his still-loving partner, Benay. A retired director of international sales in the textile machinery industry, Ed is a volunteer activist for causes related to the prevention of child abuse. An avid college sports fan, he enjoys writing fiction and poetry, and being with his four grandchildren. He is currently seeking literary representation for Blue Chariot and can be reached at edcnt@mchsi.com.

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