In a Sea of Unanswered Questions, the Metaphorical Tide Ebbs

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by Rick Jobus |

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“In-A-Gadda-Da-Vida”

Last week, my pastor humorously suggested I should challenge folks to put forth songs or lyrics they believed I wouldn’t be able to kick-start a column with. He further suggested the above mentioned track by Iron Butterfly would be such a stumper. I respectfully submit that he was wrong.

The genesis of the song occurred when during a sound check, the inebriated singer slurred the words “in the garden of Eden.” Upon playback, the words couldn’t be understood, but the band liked them, so they stuck.

Not only did the accidental recording become the group’s only hit, it also serves as an apt metaphor for the current state of my intelligibility. My utterances are deciphered into similar gobbledygook. What’s more, hyphens are placed exactly where I would draw necessary shallow gulps of air.

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I was already intent on focusing on ALS metaphors this week, and “In-A-Gadda-Da-Vida” becomes the perfect segue. Thank you, Pastor K!

Nearly a year ago, I was invited to contribute to a chapter of the recently published book “Rare Disease Drug Development: Clinical, Scientific, Patient, and Caregiver Perspectives.” The goal was to convey the world of the stricken to sponsors working on rare disease programs in order to emphasize urgency. I chose to invoke a string of metaphors.

I stated that without answers to the questions of why, how, and what, ALS will cast us adrift in turbulent waters without a life raft or preserver. I contrasted pre- and post-ALS by comparing a world-class symphony orchestra to a swarm of toddlers left to run amok in a high school band room.

I drew an analogy to F. Scott Fitzgerald’s Benjamin Button. We begin with autonomy, followed by ever-increasing reliance on others. In the end, we are totally dependent. Then, we die.

I described my social network as akin to a randomly erupting volcano. Those who see me regularly have been forced into a first responder-like capacity whenever the disease spews lava. Those living remotely fret about me, like concerned folks awaiting news of cataclysmic destruction.

I characterized ALS as an indiscriminate serial killer. With no known cause, ALS allows for no cognitive sidestepping around risk factors, and no angry, rueful hindsight about having elected not to avoid them.

The drug development effort has its own share of apt metaphors. Its futility resembles the Greek fable of Sisyphus. Like the ALS scientific effort, Sisyphus was eternally condemned to roll a rock up a mountain, only to have it roll back down, requiring him to begin anew — time after time.

Scientific progress is nearly imperceptible, like a glacier. Therein lies the only hopeful comparison: Most glaciers move only a few centimeters a day, yet produce stunningly transformative change.

Prior to my input in the book, I was prone to using metaphorical references in depicting ALS. From the obvious “monster” analogy to the more subtle “children’s game,” descriptive reminders abound.

In the ensuing months, other metaphors have struck me as appropriate. Take, for example, the words that accompanied the differentiation of ALS as a disease. Jean-Martin Charcot, described as the “father of neurology,” averred in 1874 that, “The diagnosis as well as the anatomy and physiology of the condition amyotrophic lateral sclerosis is one of the most completely understood conditions in the realm of clinical neurology.”

Charcot’s statement brings to mind the naive optimism of the Beatles ballad “Rocky Raccoon.” With Rocky near death, this lyrical exchange transpired between Rocky and his physician: “‘Rocky, you met your match!’ And Rocky said, ‘Doc, it’s only a scratch, and I’ll be better, I’ll be better, Doc, as soon as I am able.’” I crave a reality similar to what Charcot and Paul McCartney laid out.

Since its initial dubious miscategorization, research progress with ALS has trended in a manner similar to Michael Scott’s leadership on the sitcom “The Office.” His charter was to enhance the workplace environment of the fictional paper supply company Dunder Mifflin’s branch in Scranton, Pennsylvania, and achieve breakthrough results. Although well intended and packing emotional investment, his prolific attempts were ineffectual.

My fantasy metaphor is derived from the movie “The Shawshank Redemption.” The movie’s hero, Andy Dufresne, is imprisoned at Shawshank State Penitentiary under sketchy circumstances. Similarly, the reasons for my ALS confinement are unknown. Like Dufresne, I’ve endured the violence and dehumanization a prisoner is subjected to, and for years, I’ve persistently scratched and scraped with escape in mind.

Immediately prior to securing his freedom, Dufresne crawled through the sewage output of Shawshank. Many days, I feel I’m in the bowels of ALS. The movie redemptively ends with Dufresne on an idyllic Mexican beach.

If my longevity relative to ALS were to result in such a prison break, regardless of location, I’d be in “the garden of Eden.” Plus, I’d be able to announce it with unmistakable clarity.

***

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.

Comments

Dick Cottrill avatar

Dick Cottrill

Rick!

Love your article! Love the attitude!

Recently added to the ALS train (wreck?), I loved the creativity of the article! Once diagnosed I started to research experimental treatments....nothing! We have a bastard disease!

I am 76 and think I am sliding fast. Lost so much in last 6 months. Great support team in Augusta GA.

So, how can I help? Keeping moral up at least? My past life was in a leadership role and no crummy "bastard" disease is going to take positivity away. We are in this together, so let me know!

Dick

Reply
Dave Smiglewski avatar

Dave Smiglewski

Very well written Rick. Your observations and metaphors are succinct ,yet very much to the point. I have slow progression ALS which mostly affects my speech, which in turn can be tricky sometimes in my role as my community's mayor. it often leads to some humorous misinterpretations. In-A-Gadda-Da-Vida indeed! Thank you!

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Roxanne Kusske avatar

Roxanne Kusske

Thanks for the fact check on the song name, I did not know that!
Reading your articles sometimes helps me to understand where my husbands thoughts might have been while he struggled with ALS. He lost his battle one month ago. He never shared any thoughts, although I'm sure he had them; but chose to sit in his recliner chair, day after day, waiting to die.
Keep up the great work on your articles! :)

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