Seeking Input for a Novel Idea
“Dear Sir or Madam, will you read my book?
It took me years to write, will you take a look? …
If you must return it, you can send it here,
But I need a break, and I want to be a paperback writer.”
A story in a London newspaper inspired the composition of The Beatles’ hit “Paperback Writer.” On the pages of ALS News Today, I once suggested — mostly tongue-in-cheek, but a small fraction in earnest — a theme that a novelist could run with. A side benefit of the ALS-centric plot was a hoped-for boost in disease awareness.
Alas, unlike the Daily Mail item, my column prompted no song, much less a book. Not having my fill of fictional folly, I was back at it five months later. This time, I envisioned a crack ensemble of cartoon characters attacking ALS. Again, no bump.
At that point, I resigned myself to the reality that it’s best to leave the novel sculpturing to the professionals. Besides, the heterogeneity of ALS makes the depiction of a representative, relatable central protagonist rather tough sledding. My own experience, coupled with a superficial awareness of its toll on others, yields a largely incomplete composite. ALS is just such a random, variable, unpredictable, logic-defying mystery.
An ensemble cast — like the one Katie Schuermann crafted in the “Anthems of Zion” trilogy, capturing the myriad individual virtues and foibles inherent to the body of a church congregation — might do the trick. But the challenge remains gaining the vital personalized input necessary to do the ALS ordeal justice.
A Facebook exercise gave me an idea. A friend of mine either developed or borrowed an enjoyable diversion. She authored a couple of fictional paragraphs loosely describing a setting and a person, with precious few sketchy circumstantial details. From this soft foundation, she invited those of us so inclined to add our own content, with the freedom to take the story in any direction, at our whimsical discretion. I enthusiastically participated.
In any fictional treatment in which the ending is hardly a mystery, the subplots must be irresistibly compelling. The ALS universe — as composed of patients, family caregivers, medical professionals, and concerned friends — is all that and more. Maybe an approach similar to the one my Facebook contact introduced could draw some of that rich fodder out. Perhaps a plausible premise packed with enough reasonable potential inroads to the confoundingly diverse world of ALS might elicit some story material.
With that in mind, here is my submitted introduction to the working title “Kiss My ALS”:
“The doctor dreaded these appointments. You would think that with all the years as a practicing neurologist treating conditions of the gravest nature, an emotional callous might have developed. But not with amyotrophic lateral sclerosis. The delivery of that diagnosis was a staggering gut punch for everyone — the doc included.
She gazed at her comfort souvenir, a framed photo of herself and the rest of the multidisciplinary team she was proud to be a member of. The picture served as a reminder of all the good that is possible, even in the face of unyielding human devastation. Although she was the ‘headliner,’ the entire staff — including therapists, a nutritionist, a social worker, members of a patient advocacy chapter, an assistive-device specialist, and volunteers — conspired to help squeeze the last glob of quality from the tube of life that the ALS patients brought to the dance.
And that is what they strived for — a carefully choreographed, elegantly maneuvered, poetry-in-motion waltz. Being in a population center while also serving many rural outposts meant the dance card was always filled. She had come to appreciate that in the dance of life, ALS sufferers and their caregivers were virtuosos of the highest order.
Through interaction at the clinic and the occasional support group gathering, she was always left stupefied by the resilient and intrepid manner in which the patients battled. The doctor and her team would routinely compare notes after each clinic day. Their consensus was invariably the same.
From a demographic hodgepodge that defied science, these folks shared one common denominator: Each, in their own way, was the hero in a siege that was incessantly brutal. Each engaged in warfare that had never before been waged. ALS employed tactics that were different every time it fought. No two were the same — not even a doppelgänger.
Her train of thought was interrupted by her assistant’s prompt: “Your 10 o’clock is here now.”
I hereby invite anyone, from any ALS vantage point, to append. If no one does, it’ll be “nothing ventured nothing gained.” I’ll check back every day for additions. If there are any, I’ll then make a contribution based on where the story stands.
Maybe we can “make a million overnight.”
***
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
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