Review: EVERY NOTE PLAYED by Lisa Genova
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.
My husband also lost a family member to ALS and it was just such an awful time. I am definitely interested in this book more now. I liked Still Alice so I think I can see liking this as well. Great review!
Thanks! I was really impressed with how she chronicled the progression of the disease and how it impacts both the patient and the family, etc. It’s a compelling read and I learned a lot too. You can tell the author is a neuroscientist, that’s for sure.
This sounds like such a beautiful yet heartbreaking read. I haven’t heard of it before so thanks so much for putting it on my radar!
Genova’s books are always powerful and very real for me. It’s so hard to watch the characters decline.
Yes, exactly. It’s so hard to watch the characters decline and yet I still find that I can’t put the books down until I know how it ends.
Oh wow, this sounds like a really intense novel but fascinating too. I like that the author shows the step by step decline that happens when someone is diagnosed with ALS. I’m so sorry to hear you lost a member for your family from this horrible disease.
I think she does an incredible job of teaching her readers a lot about ALS while at the same time conveying such a compelling story. It’s a heartbreaking read but a powerful one too.
This sounds so heartbreaking. Diseases like this are horrendous. It sounds like it’s handled well, though, and I also very much appreciate that the relationship between Richard and Karina is portrayed realistically; that adds a nice depth to the story. I’ll definitely be checking this out–great review!
Thanks! I hope you enjoy the read as much as I did.
I haven’t read anything by Lisa Genova, but this does sound interesting.
Her books are really good. I guess I’d call them medical dramas if I had to label them. She’s a neuroscientist so she manages to make her stories educational while also still compelling and powerful reads.
This seems like it’s an emotional read. I understand what’s it like to see a loved one slowly deteriorate from disease my great-grandmother had Alzheimer’s and my grandma took care of her till she passed. Afterward, my grandma got down sick. Not many people understand both sides. Great review.
Yes, it was such a gut wrenching read.
What a wonderfully complex, emotional and gutwrenching book. There’s so much the author is taking on and doing it *well*, it’s very impressive. Diseases like ALS — god — they terrify me and they wreck me. My uncle has Alzheimer’s, which is nowhere near the same, but I had a conversation with him yesterday where he was telling me about how he’s packing for a wedding — that is next year. I had no idea how to respond to that nad just clumsily moved the conversation on to safer topics.
I know, I’m the same way, especially after seeing someone go through ALS and watching them visibly decline every time I saw them. My father-in-law was recently diagnosed with Pick’s Disease, which is similar to Alzheimer’s and yeah, it’s hard to know who to react when they just suddenly start talking about something that makes no sense or that happened years ago.
So happy to see your positive review on this book! Still Alice is a book that I have read like 20 times over the years, and I absolutely loved Left Neglected, as well! Somehow this book snuck under my radar and I didn’t even know about it until like yesterday, so I can’t wait to get a copy and start reading. Glad to see that Lisa’s newest novel is amazing!
She really does an amazing job writing about such difficult subjects. I’d like to read more of her books at some point.
Sorry to hear you lost a family member to this disease 🙁 I can only imagine how reading this book was for you. Mental Illness runs in my family and it is hard for me to read about it. But I do read it. However, cancer, which killed my mom… I cannot read. I watched The Fault in our stars and it was terrible. I sobbed the entire night. A Monster Calls totally undid me because it was about a sick mom. ow I can’t even look at the book! SO never again! It is great when you find the strength to read about something that is so emotional and important to you! I was very sad when stephen hawking died from this disease last week 🙁
It was definitely a tough read but I was pleased at how the author handled the topic and I’m hopeful that it will educate people about the disease and hopefully get people more involved in trying to find a cure. I’m so sorry to hear about your mom 🙁
Lisa Genova’s stories are so gut wrenching and often times incredibly sad, but with serious depth and beauty to the tale being told… This sounds just like her others, in a good way! This is probably my most anticipated title of the year, and I can’t wait to get my hands on a copy.
Brilliant review – thanks for sharing!
Thanks, I hope you enjoy the book when you read it!
Still Alice broke me! I definitely need to check out this one. Thanks for putting it on my radar!
Same here. It gutted me.