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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Comments
Fran Finney
A possible addition:
The doctor readied herself. Each ALS patient has a unique life history, a unique set of personal circumstances, and a unique personality prior to receiving their ALS diagnosis. Like the disease and its relentless but very variable progression, no two patients are ever the same.
She walked into he room where her 10 o’clock was waiting.
This patient was a man in his 50’s. He was alone. He appeared healthy, athletic even. He slowly stood up from his chair and looked at her hopefully. “Did you get my test results back?”
“Yes, we did.” She paused.
“Did you figure out what is wrong with me? Can you fix it?”
“Why don’t you sit down. Let’s have a talk.”
And she slowly, calmly, related the test results and what they meant. She assured the patient that she and her staff would give him support though every stage of his illness. But inside she wept for another life impacted, another person who would have to travel their own uniquely devastating path that was ALS.
Susie Parkes
I am not a writer, but give me a week or so to play with this...
Mindy S. Weinelt
The door opened to a middle-aged couple, holding each other up and walking into the room with lost expressions. They sat in the plastic chairs and looked hopefully at the doctor, but expecting the worst. After all the appointments and tests, the last doctor had finally told them it was ALS and it seemed as if the word came from outer space. It didn't make sense, not in their planned life together, not in the world of TV where it was always cancer, not in the world of their friends, no where in the reality they had come through to this point. A tiny part of their hearts was hoping that this specialist would look through all the records, examine the husband, and say "So sorry! Everyone got it wrong! Sorry to have worried you! " It's just lime disease, or cancer, or any one of a dozen awful things that you could name and fight. They had already Googled what they could stand to read. They desperately needed a strand of hope to hold onto. So after the examination and the first time through the AFRS they asked, "Is it early in the disease? Will it go fast or slow?" If it could just go slow, maybe they could still live in their old world for awhile longer. But as they sat with this very kind doctor, they began to realize that the door they had walked through was a portal to an alternate universe, and the way ahead was unseen.
Rick Jobus
To be inserted between the additions of Fran and Mindy:
Robert Portman was the man’s name, Rob for short. He was difficult to figure. There was no trace of emotion . If anything , he was nonplussed . And that made Doctor Mack apprehensive. Many folks who are initially stoic ~~ particularly those who receive the horrific news solo ~~ later suffer badly . She only hoped that Portman took her up on the invitation to attend the support group meeting two nights later.
But for now she had to ready herself for her one o’clock appointment . It was the rare day that the doctor had to deliver the death sentence of ALS twice. The second one was perhaps of the variety that was typically the most heartbreaking. The next patient was a second opinion confirmation of an original diagnosis . These people came seeking a miracle, and instead were about to have their world blown apart with irrevocable viciousness
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Klara Weis
David Steenblock, would it be possible to correspond with you about what your thoughts about ALS entail? I would very much like to hear your other views. My son, 43 with 4 young children did have a mountain biking accident in college. He slipped and went crashing into a tree head first; broke both wrists from trying to protect his head and had a concussion. He was diagnosed with ALS in 2019 and is progressing fairly quickly so I am helping with the research and tyring to find alternative healing methods. I wonder if one can get the contricrtion of the cervical nerve repaired? Of course along with detox etc. etc. THank you for responding, Klara Weis
Dagmar Munn
Klara, I caution you from putting too much faith in David Steenblock's theories. He has been listed on Quackwatch: https://quackwatch.org/11ind/steenblock3/
Dagmar Munn
Quackwatch about David Steenblock, DO - - https://quackwatch.org/11ind/steenblock3/
Luke J Kelly
I'm guessing if you want to use this it would go between your
— not even a doppelgänger.
and
Her train of thought was interrupted by her assistant’s prompt: “Your 10 o’clock is here now.”
While the doctor was supremely confident in the team, she always wondered if there was more they could do particularly at the original diagnosis or at least at the first follow up and in the clinics. ALS is such a devastating disease, she knew not to deliver a message which encouraged false hope but, had she and the entire field gone overboard? Was the matter-of-fact message received by the patients as, there is no hope? She was a religious person herself and she knew that as long as there is belief in God there is hope. She also knew that she and several other neurologists led clinical trials throughout the year in the hope of finding a cure or a treatment.
She often thought of her Dad at these times, he was both her biggest supporter and toughest critic. He was so very proud that she had graduated at the top of her class but, when she’d tell him about the various patients visiting her clinic he would ask “what are you giving these people to fight with?” She’d say “Dad there just isn’t much”. He’d say, “isn’t much, means there’s something, now what is it you could give these patients to fight with”? Riluzole was a given but, after that things got pretty thin.
She remembered that while doing some leisurely reading she had run across a note in a book that stated that persons with neuromuscular disease that kept a 21 day gratitude journal were found to among other things have greater energy, positive moods, and quality of sleep. She also knew that an AMST 150 device could be used as a lung trainer. There was also the research at Duke University where the supplement Theracurmin was being studied to see how it might affect ALS patients. Maybe a little more off the wall were the theories suggesting that the patients listening to the music of their youth and digging out pictures of times when they were healthier resulted in a more positive outlook. These of course were not a cure but, they were something. Something to fight with?
When she got on a roll like this it was hard to stop and nothing was sacred. What could they do better with the internet? Yes, there was tons of information out there but, for the new patient how could they tell if they were reading the latest or something 10 years old? She knew some of the materials were dated at the end of the article and she could only imagine the frustration of the patient who read the entire article only to find it was 10 years old. Could they get a couple work study students to tackle this issue?
Then there was the clinical trials. They were the hope of the future. There was that HOPE word again. The ALS community supports the trials very well but, for the new patient where does he start? Look at the Trials list and apply? But there’s hundreds of them. Then there’s the recruiting, not recruiting, and the recruiting by invitation only stipulation as well as the inclusion and exclusion criteria. Again with this introduction to the trials, was her team delivering a message of hope after the gut punch of an ALS diagnosis? Could she find a win win for the trials question by broadening the PHD candidates roll to include review of the patient base to the clinical trials base thereby exposing the future doctor to all of the new research and providing a resource to her patients in need of direction on the clinical trials? A new plan was forming in her mind and its key would be hope.