Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease affects the motor neurons to the brain and spinal cord. It is progressive and ultimately leads to loss of speech, the ability to eat and move, and the ability to breathe.
In “Every Note Played,” Lisa Genova chronicles the story of Richard, a world-class pianist, who has to give up his career as he is diagnosed with ALS. The story takes the reader through the complicated family dynamics that ultimately lead to Richard’s ex-wife becoming his primary caregiver, as he rapidly loses function of his body, all while his mind remains intact, which perhaps is one of the cruelest components of ALS.
Genova, a Harvard-trained neuroscientist, explores not only the scientific aspects of the disease, but also the emotional aspects. While the book is a work of fiction, the illness experience described seems to be very inline with the real life experience and consequences of the disease.
As Richard ponders the question, “Why him?” he states, “He’s seen a 25-year-old medical student, a 65-year-old retired Navy SEAL, a social worker, an artist, an architect, a triathlete, an entrepreneur, men and women, black, Jewish, Japanese, Latino. This disease is as politically correct as they get. It has no bigotries, allergies or fetishes. ALS is an equal opportunity killer” (p. 134).
What ALS teaches Richard is what he’s known all along. His fractured relationship with his ex-wife and daughter are brought into full view, and he has limited time to resolve them.
“They have no time machine and no cure for ALS and no cure for this broken relationship. No supplements can fill all that was lost, no pills can be pushed through his PEG tube to make everything right between them” (p. 189-90).
“As she leaves the room, he wants to reach out and touch her, to wrap his arms around her and hug her tight, to show her with touch what he can’t seem to execute in words, but his hands are even more useless than his voice” (p. 192).
While the ending seems inevitable, the lessons woven through the pages that contain the story within are lessons we all need and lessons that are often learned when it’s already too late.
Still Alice, the first of Genova’s books, is still my favorite. I’m more about the science than the story, and her last two books, Inside the O’Briens and Every Note Played, in my opinion, have been more story than science-centric. However, given her background as a neuroscientist, all of her books focus on fictional characters living with real life neurological diseases. They weave fact and fiction, and give a glimpse into the lives of characters whose suffering is very, very real.
One thing that really struck me, actually, was the acknowledgments of the book. Genova thanked many people who had ALS and helped her learn about the disease. Sadly, it was noted that all of them have since passed away as of the time of publication. That was striking to me because I had never read an acknowledgment like that before, and it is a testament to the research that is still needed to learn about and eventually cure this disease.
Despite this, however, the book does offer promise about the future of ALS while remaining resigned to the fate of the book’s main character:
“He’s not deluded into thinking modern medicine can save him. He’s already gone too far down the rabbit hole, and he knows it. It’s too late for him to be saved. He’s in the trial because he’s doing his part, contributing this small step in the long march toward the cure… On the road leading to any great achievement are a thousand missteps, a thousand more dead ends. Success cannot be born without the life and death of failure… Someday, scientists will discover a vaccine, a prophylactic, a cure, and people will talk about ALS the way they talk about polio” (p. 188).
I saw a story recently about a Rabbi with ALS that was incredibly important and highlights how faith combines with living with an incurable disease.
If you’re interested in reading a memoir about ALS, I highly recommend It’s Not Yet Dark by Simon Fitzmaurice.
For more information on ALS, visit https://www.alz.org/.