Published by Scout Press on March 20th 2018
Genres: Fiction, Contemporary Fiction
FTC Disclosure: I received a complimentary copy of this book from the publisher via Netgalley. All opinions are my own.
Lisa Genova’s compelling and poignant new novel Every Note Played gives her readers an intimate and in-depth look at how a debilitating disease can impact not just the one who is suffering from the disease but also the family and caregivers as well. For those who are familiar with Genova’s writings, she takes readers on a similar journey in Still Alice with Alzheimer’s Disease as her subject matter. In Every Note Played, she tackles ALS (or Lou Gehrig’s Disease as it is sometimes called).
For those unfamiliar with ALS, it is a devastating disease in which a person’s neurons start to die off, basically paralyzing the person a little at a time until they can’t walk, can’t use their arms, can’t chew and swallow food without choking, and eventually cannot even speak and must communicate through the blinking of their eyes. By this point, an ALS patient is typically also struggling to even breathe on their own and usually have to have breathing assistance machines.
As horrific as all of that is, perhaps the cruelest part of the disease, however, is that while the person’s body is rapidly failing them and becoming a prison, the disease doesn’t impact their mind at all. So they are fully aware that they are trapped and dependent on those around them for even the most basic of needs. As of my writing this review, scientists haven’t figured out a definitive cause or cure, and have developed very few options for treatment, so ALS is unfortunately a death sentence. In rare cases there are people like Stephen Hawking who successfully lived with the disease for decades, but the typical lifespan is about 3 years after diagnosis, sometimes even less. (Sorry for going overboard on the medical details of ALS, but I lost a family member to this disease and so this book hit me really hard on quite a few levels).
Every Note Played follows Richard Evans, a gifted and world-renowned pianist who suddenly loses the use of his right hand and is subsequently diagnosed with ALS. Richard, whose entire life has revolved around playing the piano – to the detriment of both his marriage and his relationship with his now grown daughter – cannot fathom what kind of life he can possibly have if he can no longer do the one and only thing he loves to do, play music. As the disease progresses and takes away so much more than just his ability to play the piano, Richard starts to reflect more and more about his life and all that he has thrown away for the sake of his career. He knows he’s going to die and starts to wonder if there’s time to make amends and make peace with those he has forsaken for most of his life.
Richard’s ex-wife Karina is paralyzed in her own way. She and Richard split up three years ago and yet she has refused to move on with her life. When they were first married, Karina, also a gifted pianist, gave up her dreams of becoming a jazz pianist to follow Richard to Boston so that he could become a classical pianist. Now that she and Richard have split, it would be easy enough for Karina to move back to New York and its jazz scene, but she chooses not to, always finding excuses and always blaming Richard and their failed marriage for every chance she refuses to take.
When Karina finds out about Richard’s condition, however, and knows there’s no way Richard can afford the ‘round the clock care he needs, she reluctantly offers to become Richard’s caregiver. Will Richard and Karina be able to put their differences aside and make peace with each other before it’s too late?
The complex characters and their even more complex relationships were what I found especially compelling about Every Note Played. In Richard Evans, Genova creates a man who, pre-ALS, was not an especially likable guy. In many ways, he was selfish, arrogant, and self-important. His career was the most important thing in his life, and nothing else mattered. His passion for the piano eclipsed everything else, including his relationship with his wife and daughter. After Karina and Richard divorce, in fact, his daughter rarely ever even bothers to try to communicate with him because he has done so little to ever cultivate any kind of a relationship with her. So yeah, the guy’s kind of an ass.
That said, however, Genova paints the portrait of what ALS does to a person so vividly and gut-wrenchingly that you can’t help but feel tremendous sympathy for Richard anyway. ALS is a disease you wouldn’t wish on your worst enemy. This is why his ex-wife Karina, even though she swears she hates Richard, can’t help but offer to take care of him once she realizes what this disease is going to do to him.
I love that Genova keeps it real here though. The dynamic of their relationship doesn’t magically change just because Karina feels sympathy for Richard and wants to help him. The hostility and resentment are still bubbling just below the surface. Karina still hates Richard and he doesn’t particularly care for her either so their interactions are often strained and awkward, as one would imagine a divorced couple would be around one another. They need to have some serious conversations if they are ever going to forgive each other and make peace, and those conversations aren’t the easiest to start. Then there’s the added pressure that they’re on the clock. Unless there is a miracle cure, Richard’s days are numbered…
In addition to this messy ex-couple and what they each bring to the table in this story, I also thought Genova did a tremendous job of teaching her readers a lot about ALS, especially about its progression and how it impacts both the patient and the patient’s family. She presents the story in alternating chapters from both Richard’s and Karina’s perspective so we are presented both with the details about how the disease is progressing as well as each of their thoughts about it.
As I mentioned above, I lost a family member to ALS and reading Richard’s journey brought back a lot of sad and painful memories because Genova’s depiction of the disease is so spot-on. I very much appreciated her attention to detail and really hope that people will read her book, learn more about the disease, and will want to donate money to help find a cure or at least some more viable treatments for ALS.
I could see some readers getting somewhat bored with the story if they don’t connect with Richard or don’t want to see a step-by-step progression of a debilitating disease. This was not an issue at all for me, but I just wanted to mention that so that people understand what they’re getting when they pick up this book.
Every Note Played is a powerful and poignant read that is sure to make you shed a few tears. Although it’s predominantly a story about how devastating ALS is, it also has its uplifting moments when it comes to family, forgiveness, and redemption. I would definitely recommend this to anyone who was a fan of Genova’s Still Alice but also to anyone who wants to know more about ALS.
From neuroscientist and New York Times bestselling author of Still Alice comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.
An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.
Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.
He knows his left arm will go next.
Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.
When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.
Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.