Someone Thought Enough to Write About ALS, and It’s About Time

Rick Jobus avatar

by Rick Jobus |

Share this article:

Share article via email
prayer | ALS News Today | 'Chasing Time' | banner image of Rick Jobus column

“The book I’m not reading is riveting

The book I’m not reading keeps me up at night

The book I’m not reading is better than TV

Giving me insight.”

These lyrics from “The Book I’m Not Reading,” by singer and songwriter Patty Larkin, vaguely describe a literary quest of mine. For a while I’ve lamented the scarcity of heady, fictional reads that include relatable content, shedding some light on the world I’ve been forced to inhabit: the world of ALS.

Until my editor recently informed me about Lisa Genova’s 2018 novel, “Every Note Played,” I wasn’t aware of any invented stories in which a primary character battles ALS. I was cognizant of numerous memoirs, but naively thought that a fiction vacuum existed.

To fill that imagined void, I have invited authors to graciously take a crack. I’ve attempted to jump-start a “roundtable” creative effort. It has been a frustrating exercise in futility, however. I feared that “The Book I’m Not Reading” didn’t exist, and probably never would.

Recommended Reading
RARE-X logo

Q&A With RARE-X Disease Data Platform Founder, Nicole Boice

Recently, I received a message from a just-published novelist, introducing me to his debut work, “Chasing Time.” The author, Thomas Reilly, mentioned an ALS-centric plot, and that was all the motivation necessary for the novel to leapfrog ahead of everything else on my must-read list. And it did not disappoint.

Larkin’s choice of the word “riveting” perfectly describes how immersed I found myself in Reilly’s tale. On style points alone, it’s a first-rate read. Richly textured, it evokes imagery enabling me to taste, smell, and feel what the characters experienced.

The novel also contains elements of history delving back into antiquity. It is part mystery. It takes the reader on a tour of multiple geographies and eras. It proves both instructive and uplifting.

Those reasons alone make for a compelling page-turner. In fact, I gobbled it up in one day. But it was Reilly’s spot-on depiction of the horrors of ALS that galvanized his novel into rarefied territory for me.

Central to the plot is a woman suddenly stricken with ALS. Hers is an extremely aggressive variant. Much of the novel focuses on the woman’s deterioration and her husband’s frenetic determination to halt, or slow, disease progression. His fantasy quest is, of course, a cure.

During the pursuit of relief, the husband demonstrates inexhaustible sleuthing prowess. Like many of us, he is willing to consider any potential remedy — however outlandish — offering the most infinitesimal hint of efficacy. Although continually stymied, he never gives up hope.

The portrait of the comprehensive tragedy of ALS was so realistic that I was certain Reilly must have had, or was having, an intimate encounter with the disease himself. I figured that he, or someone close to him, had a history with ALS. Thankfully, that was not the case.

In a follow-up message I learned that, while Reilly knows a few folks who have ALS, it hadn’t struck close to home. As a scientist, he was interested in the process of neurogenesis, or neuron regeneration. As he did more research on the topic, he became convinced that intertwining ALS with the therapeutic benefit of neurogenesis was a literary marriage that might resonate.

That explains why ALS was so prominently featured, but I was further puzzled by Reilly’s uncannily accurate depiction of the beast. He humbly attributes all realism to the fruits of manuscript searching, reading, and digesting. Having a PhD in microbiology and being a retired biotechnology scientist would certainly help him on the research front. However, his empathy must be innate.

Deeper into her song, Larkin warbles, “The book I’m not reading has a life jacket enclosed.” Reading this book and understanding the serendipitous manner in which it came together added to my buoyancy in ALS-infested waters.

Just like with the recent news about preparations for a movie in which an ALS diagnosis upends the main character’s life, Reilly’s novel is affirmation that some folks notice our plight, and depending on media traction, more may do so in the future.

Where there is noise, there is attention. Attention spawns action. Action fuels hope. And hope helps to keep us keeping on.

The book’s title is particularly relevant to life after ALS. From the moment of diagnosis, we’re cast in a frenzied game of tag with time. We chase it in an attempt to get more of it. Time aggressively pursues us, with “game over” as its objective.

“Chasing Time” serves as both a respite from the grind of “terminal tag” and a reminder that the game must be played out. As such, it was most welcome reading.

In a larger sense, it rectified a situation near and dear to both my heart and Larkin’s. As she sings, “The book I’m not reading isn’t out yet … and I’m getting impatient.”

Now it is. It’s about time.

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, and are intended to spark discussion about issues pertaining to ALS.


Leave a comment

Fill in the required fields to post. Your email address will not be published.