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Every Note Played

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Goodreads Choice Award
Nominee for Best Fiction (2018)
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. 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.

307 pages, Hardcover

First published March 20, 2018

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About the author

Lisa Genova

30 books9,758 followers
Lisa Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University.

Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa has captured a special place in contemporary fiction, writing stories that are equally inspired by neuroscience and the human spirit. She is the New York Times bestselling author of STILL ALICE, LEFT NEGLECTED, LOVE ANTHONY, INSIDE THE O'BRIENS, and EVERY NOTE PLAYED.

Her first nonfiction book, REMEMBER: The Science of Memory & the Art of Forgetting, will be released March 23, 2021.

STILL ALICE was adapted into a film starring Julianne Moore, Alec Baldwin, Kristen Stewart, Kate Bosworth and Hunter Parrish. Julianne Moore won the 2015 Best Actress Oscar for her role as Alice Howland.

EVERY NOTE PLAYED is being adapted into a film starring Angelina Jolie and Christoph Waltz, directed by Michael Sucsy.

The film adaption for INSIDE THE O'BRIENS is in production.

In 2015, Lisa was named one of the U.S. Top 50 Influencers in Aging. She has appeared on Dr. Oz, the TODAY show, CNN, PBS Newshour, NPR, and several documentary films.

Her TED Talk, "What You Can Do To Prevent Alzheimer's" has been viewed over five million times.

She received The Pell Center Prize for Story in the Public Square, for "distinguished storytelling that has enriched the public dialogue," The Sargent and Eunice Shriver Profiles in Dignity Award, The Global Genes RARE Champions of Hope Award, and The American College of Neuropsychopharmacology Media Award for "informing the public about Treatment and ongoing research in medical illness."

In 2016, she received an Honorary Doctorate of Humane Letters from Bates College, The Alzheimer's Association's Rita Hayworth Award, and The Huntington’s Disease Society of America Community Awareness Award.




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5 stars
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Displaying 1 - 30 of 6,205 reviews
Profile Image for Emily May.
1,962 reviews293k followers
November 14, 2018
His neurons are dying, and the muscles they feed are literally starving for input. Every twitch is a muscle stammering, gasping, begging to be saved. They can't be saved.

I don't know what it is that makes these, um... medical dramas(?) of Genova's so damn compelling. Some writers just seem to have that certain way with words that draws you into the story and the characters' lives. It doesn't matter that her books aren't action-packed; they are pageturners anyway.

Every Note Played sees a famous and extremely talented pianist developing ALS (or Lou Gehrig's disease). Richard has dedicated his entire life to the piano and music. It is who he is on a deep, cellular level. In fact, he has sacrificed many other areas of his life to focus on his career playing with various orchestras around the world. When his precious hands start to fail him, he is forced to look at what's left of his life.

It is obvious that the author is a neuroscientist. She knows the details of the disease and takes us through the grueling daily challenges of living with ALS that most of us probably never thought about. She dispels myths surrounding the disease - such as that ALS sufferers tend to live a long time, like Stephen Hawking. Hawking has lived an abnormally long time with the disease, and most people die within a few years of diagnosis. There is one pitiful treatment option available. There is no cure.

Genova also creates some really interesting character dynamics. There's no pity party for Richard. In fact, the perspective of the novel moves between Richard and that of his ex-wife Karina, and we discover that Richard has kinda been an asshole for a lot of his life. Arrogant. Self-absorbed. And yet this works really well and feels less manipulative than if Richard had been a saint.

You might think we would have less sympathy for a man like this, and yet there is something deeply sad about it. To see this proud, arrogant man dress up in his tux, alone in his apartment, and play left-handed until he can play no more is hard to witness. In both this book and Still Alice, Genova explores what it means to experience an ultimate loss of self - an intelligent woman losing her memories, a pianist losing use of his hands - and how a person must live with this.

Her books are often sad books, but they feel refreshingly free of manipulation. They are not tear-jerkers that set out to make us cry. She simply creates interesting characters in terrible situations and explores how they deal with them. I like this. I equally like that she chose to focus on an unusual dynamic - that between a divorced middle-aged couple who really dislike each other. The relationship between Richard and Karina is as fascinating as everything else.

Also, I was surprised how the author pulled me into the music part of the story. I’m not a musical person, to be honest. I love listening to all kinds of music, but I often feel cold when authors describe the feeling of being extremely passionate about playing an instrument and getting lost in the notes. That’s not something I’ve ever really understood and if you played me a note I couldn't even hazard a guess if it was ABCDEF or G, so books about music are usually boring to me. But the passion for music here really worked. The intoxicating feeling of the music as Richard uses it to escape reality is a good source of relief between the progressions of the disease.

In short, Every Note Played is an unputdownable character portrait that informs about ALS on a painfully human level.

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Profile Image for Elyse Walters.
4,004 reviews36k followers
November 12, 2019
Any reader or movie goer by now has at least heard of “Still Alice”, about Alzheimer’s and dementia by Lisa Genova, which was first published in in 2009.
I read that book back in 2009...before the entire world had started raving about it — which they should rightfully so - for being one of the best books they had ever read about the disease —hearing specifically from the person who ‘has’ the disease.
I had bought the book myself many times and given it as a gift.
I’ve never thought of Alzheimer’s the same again since first having read Lisa’s book. “Sill Alice” literally change to me.

I’ve since read all of Lisa’s books. In each one I’ve learned about a disease from a PERSON WHO HAS IT .....and/or such as the people ( family), whom the disease also most effects in a very real/personal - raw way —while also being accurately educated on the grueling gut wrenching factual details of the disease itself — the developmental stages - the care involved - not leaving out any of the painstaking realities. Every book has been worthy of my time to read.
Lisa’s comprehensive research- being a brilliant Harvard/linguistics teacher and researcher....along with being a wife and mother brings so much compassion and sincerity to her books, that I can barely pull myself away.

I had recently read a couple books on ALS. One was an excellent graphic memoir , about how one wife coped with her children when her husband was diagnosed with ALS, called “Last Things”, by Marissa Moss...which was very moving and powerful..... so, although I wanted to read Lisa’s book, before I began, I had mixed feelings because I already knew this was a horrifically sad disease. I thought I pretty much knew everything.
WHO WAS I KIDDING? Geeeee. What I knew only skimmed the surface.
Lisa COMPLETELY CHANGED how I see *ALS* - my relationship to it if you will - not sure how to express it — my association with ALS has completely been shifted- elevated - and turned upside down and around! ( and I knew about this disease) —-I actually didn’t know about Alzheimer’s in 2009, when I read Still Alice.
Today I do know more. Lisa opened the door to Alzheimer’s awareness ...with more research being done maybe even because of her.

I’m suggesting that ANYONE who reads this book will walk away with MORE INFORMATION ABOUT ALS than any other mainstream book. ( unless this is your field of study or you have the disease yourself or are living with someone who does). I’m shocked and humbled by just how much I really didn’t get — not the nitty-gritty details which Lisa gives us. Lisa actually trusts us - the reader to hear the truth leaving nothing out. And its not pretty. Wasn’t for me.

I thought this book was brilliant, and possibly Lisa’s best book to date. It was GUT WRENCHING— I MEAN GUT WRENCHING for me to read some of the chapters —-
....reading about feeding tubes, choking, shitting, pissing,breathing, swallowing, all the equipment, the details about the ASL clinic, the neurologist, pulmonologist, radiologist, speech-language, pathologist, gastroenterologist, barium mixed in applesauce, x-rays, special wheelchair, the BiPAP cart, the HeadMouse, liquid shakes, worry not to lodge the windpipe, aspiration pneumonia, food syringes....all of it could make me cringe.
Honestly- I just wanted THE SUFFERING to end - I WISHED FOR A MERCY KILLING.
I’m sooooo sorry for those who have it - and God Bless the caretakers.

BUT WAIT.......THERE IS ALSO STORY IN HERE TOO... about love, family, regrets, forgiveness and music.
I’m a weeping mess.....THIS IS LISA’S BEST!

.....You’ll meet Richard Evans- concert pianist.
......You’ll meet Karina - who not only was once an excellent pianist herself who now teaches piano out of her home - but that woman can cook Polish food like nobody’s business. She’s the ex-wife to Richard. They had one hell of a nasty divorce.
.......Grace- is their daughter in college.
.......Elise — ( always fun to read about a character with my own name) is Karina’s friend.
.......Bill — Richard’s loving - fun - gay caretaker

My heart is enraptured ........I have a much deeper understanding for what it feels like to live with ALS.

Lisa invited readers to take a moment to make a donation to ALS.....@
www.LisaGenova.com. “Readers in Action: ALS”. - button to donation.
ALS ONE, is an organization determined to deliver treatment or cure for ALS by 2020 and dedicated to offering improve care now.
For more information on ALS ONE, go to www.ALSONE.org

Thank You Gallery/Scout Press, Netgalley, and the inspiring dedicated Lisa Genova
Profile Image for Debbie.
441 reviews2,783 followers
March 28, 2018
I couldn’t take it!

No no no!! This read like a detailed, precise instruction manual for caregivers whose patients are dying horrible deaths. I wanted fiction! The fact that the book had characters and a plot couldn’t save it for me—I was too distracted by the endless and often gross descriptions of the ALS demon. I might as well have been reading about a puppy getting tortured to death.

It’s just me, folks. Genova is an excellent writer and educator. I just think she went overboard this time. Everyone else loved this book, so just ignore my review. It’s so hard to admit that I hated it; I wanted to be in the gush club with all my buds. Perhaps a fuller review to follow.

Thanks to NetGalley for the advance copy.
Profile Image for Susanne.
1,159 reviews36.8k followers
March 29, 2018
4 Brilliant Stars.

Lisa Genova does it again. In “Every Note Played” – she tackles the toughest of medical diseases: “ALS” – also known as “Lou Gehrig’s Disease” and she does it with dignity and finesse.

Richard is a successful classical concert pianist. His life is his work. He gave up his family for it: his marriage fell apart and his daughter Grace has become a stranger to him. Yet his career has thrived. One day however, Richard loses all feeling in the fingers of his right hand and then his entire arm becomes paralyzed. Unfortunately for him, this is only the beginning. Karina is Richard’s ex-wife. She too, is a pianist. If Richard is honest, she was a better classical pianist than he was. After they got married, Karina had Grace and her life took on a different path, one which she has never truly been satisfied with.

Once Karina finds out about Richard’s disease, everything changes for both of them and she steps into a role she never imagined. Being Richard’s caretaker is not easy on either of them. Karina and Richard each have to find a way to let go. Of the pain and the resentment they feel. Richard towards the cards he is dealt and Karina towards her ex-husband.

At its core, “Every Note Played” is a novel that explores pain and suffering, love, loss and forgiveness and what it means to find peace within oneself and with one’s life.

Lisa Genova is an incredible storyteller. In “Every Note Played” she expertly tells the story of a man who has ALS. She provides information about his disease in a way that gives us background, without overloading the reader with medical jargon. Ms. Genova makes it about Richard, Karina and Grace rather than just about the disease itself. Having read all of Ms. Genova’s prior novels, I can say that she always does her research and that was clearly the case here. I say this speaking from experience having lost two relatives to this awful disease.

There are no winners here. ALS is heartbreaking, completely unfair and just plain horrifying. “Every Note Played” reminds us how important it is to hold your friends and relatives close and make sure we show and tell them each and every day how much we love them. At times, this novel may tear your heart to shreds, make your heart flutter and make your eyes fill with tears which simply can’t help but runneth over.

Thank you for bringing such an important story to the hearts and minds of all of us Ms. Genova. Well done.

This was a Traveling Sister read. It was an extremely emotional book for many of the sisters and I was lucky to read it with them. Thanks for the discussions sisters! For the Full Traveling Sister Group Review, please see Brenda and Norma’s Amazing Blog: https://twosisterslostinacoulee.com/

Published on Goodreads, Amazon and Twitter on 3.29.18.
Profile Image for Diane S ☔.
4,734 reviews14.1k followers
December 17, 2017
Once again Genova takes us deep into the world of a debilitating illness, and it's effects on the person and their family. Richard was a man who was considered a success, a world renowned pianist, he has played all over the world, with many different symphonies, in many different venues. Piano has been his life since he was a young child, much to his father's dismay, and he has lost much in the quest for his career. Divorced from his wife Karina, his only daughter who he barely knows, now in college, he is basically alone. First his right hand would no longer respond, a doctor's visit, eventually the diagnosis, ALS.

Although I have heard of this devastating condition, I had previous to reading this, no first hand knowledge of this disease. Genova does not spare the reader as they learn of the horrifying progress of this disease. We read Richards thoughts as the degree progresses, as he loses not only his career, his love for his piano, but control of his body, step by step. Forced into a situation he has no choice but to accept, we watch as this very self involved man regrets many of the steps he took in his life. Karina, narrates her own story, the back story of she and Richard, and why she is doing what she feels she needs to now.

Sad, yes, but this is also a novel of love, courage, second chances, regrets, responsibility and family. The hardships of caregivers, the fear of failing, and the amazing people who make this their career. It is humbling, scary, and emotionally engages the reader. All the things, this author, does so ably, both informative and personal, another unforgettable story.

ARC from Edelweiss.
June 2, 2018
4.5 stars!

Powerful. Emotional. Heart wrenching. Captivating. Eye-opening. Informative.

Every Note Played is the story of Richard, a world famous pianist who, in the midst of his thriving career, develops ALS. We witness this devastating disease take over and paralyze his body, stripping him of his career, relationships, pride, independence, freedom and more.

I admit I knew next to nothing about ALS prior to picking up this engrossing book. Lisa Genova beautifully writes an engaging and deeply moving story that took me on a journey that I will never forget. Genova compassionately reveals the private details - the symptoms, medications, side effects, equipment needed and family decisions that this devastating disease forces upon you. It is not an easy read, but it is an important one.

This book impacted me so deeply. At the end of the novel, there is “Lisa’s Call To Action”. It asks the reader to put ‘empathy to action’ by making a small donation to ALS care and research. (For more information, please visit www.lisagenova.com and click on the “Readers In Action” button). Upon finishing this novel, I headed straight for that website. My donation is in the hopes of research finding a cure, but also as a way to ‘thank’ Lisa Genova for writing this deeply touching and unforgettable book.

This was a Traveling Sister Read which largely enhanced my reading journey. To find this review, along with the other Traveling Sister reviews, please visit Norma and Brenda’s fabulous blog at:


A big thank you to NetGalley, Simon & Schuster Canada and Lisa Genova for providing me with an ARC in exchange for an honest review! It was an absolute honour and pleasure to read this fantastic book!
Profile Image for Norma.
551 reviews12.2k followers
April 16, 2018
Wow!! EVERY NOTE PLAYED was an absolutely phenomenal book and it was quickly placed into my 2018 favourite reads shelf!

EVERY NOTE PLAYED by LISA GENOVA is a deeply moving, sad, and an absolutely fantastic novel that had me totally emotionally engaged and interested throughout the entire book. I was totally immersed in this story making it extremely hard for me to put down.

LISA GENOVA delivers an empowering and beautifully written story here with an extremely enthralling storyline that was easy to understand and follow. The story is told in two different perspectives from Richard’s point of view who is a world-renowned concert pianist living with ALS and his ex-wife’s, Karina his caretaker. I was totally in awe with what I learned about ALS, the characters courage throughout this book and the familial dynamics between the characters.

To sum it all up it was an interesting, powerful, unforgettable, emotional, and an enjoyable read with a very touching, heart-wrenching, and bittersweet ending. Would highly recommend!!

Thank you so much to NetGalley, Simon & Schuster Canada, and Lisa Genova for the opportunity to read an advanced copy of this book. It was an absolute pleasure!!!

Review written and posted on our themed book blog:
Two Sisters Lost In A Coulee Reading

Coulee: a term applied rather loosely to different landforms, all of which refer to a kind of valley.
Where I live I am surrounded by Coulees!
Profile Image for Jen CAN.
486 reviews1,356 followers
May 10, 2018
ALS. Another disease that robs people of who they are and leaves them in a carcass of who they once were.
Richard, an established and famous pianist, develops ALS and loses his ability to play and so much more. His ex-wife, Karina, in a unselfish act to reconcile their differences as he nears death, offers to assist him with what's left of living.
Genova is a masterful educator. Not only skilled in the neurological expertise she possesses but shares it in a story telling fashion that takes the cold science out of the disease and makes it compassionately human. 4.25⭐️

Profile Image for Larry H.
2,484 reviews29.4k followers
November 25, 2018
When I read Lisa Genova's Still Alice nine years ago, I remember how much it wrecked me emotionally. I was on a business trip and remember sitting on the bed in my hotel room, sobbing, as I finished Genova's story of a woman fighting through Alzheimer's disease.

Perhaps it was the memory of the sniveling mess I was that kept me from picking up any of Genova's other books, but enough time had elapsed, so I decided to read her newest book, Every Note Played . Once again, she balances her knowledge of neuroscience with her immense creativity and empathy to create a memorable story of someone struggling with a neurological disorder, and how their struggle affects those around them.

Richard is a famed pianist, traveling the world and performing for crowds to great acclaim. It is the piano first and foremost for him—which posed a challenge to his marriage and his relationship with his daughter, who is now in college. But although he's mostly alone, that doesn't faze him, since anything is essentially a distraction from his music.

"Maybe human beings are capable of only so much passion. The pie has only so many pieces. For Richard, all but a sliver is devoted to piano. He loves women, appreciates them as much as any man, but ultimately they find themselves achingly hungry with him. And he refuses to feed them. His artistry for playing piano seduces them. His lack of artistry as a man is why they leave."

When his right hand starts disobeying him, not hitting the right notes, or taking too much time to move from note to note, he gets a horrible diagnosis: ALS. While the realization that he probably won't make it until his 50th birthday, and the fact that he'll be fully dependent on people for the most basic activities not too long from now is overwhelming, knowing his days at the piano are limited may be the toughest cut of all. Before long, his right arm becomes paralyzed, quickly followed by his left.

As the disease quickly runs its course and leaves him weaker and at risk of death with every day, he knows there will come a time in the not-too-immediate future that he'll need round-the-clock care. His ex-wife Karina agrees to take care of Richard and let him move back in to their old house, even though she's still angry with him for many things that occurred during her marriage, from infidelity to her being forced to abandon her own musical dreams so he could pursue his.

"Richard always seemed invincible to Karina, as if he could conquer anything, and he did. He was an unstoppable force that awed and intimidated her and, at times when she was most vulnerable, trampled her. Now he's the vulnerable one, and she can't help but wonder what it would feel like to sit at the other end of the table."

In Every Note Played , Genova follows Richard's decline and his coming to terms with his imminent demise, as well as how Karina and their daughter Grace deal with his illness. Beyond the disease, however, Genova looks at the years of resentment, anger, betrayal, and regret that Karina felt regarding her relationship with Richard, as well as his feelings about her. The book is full of things both characters want to say to each other but are afraid to, and how the way we navigate relationships is often shaped by our earlier relationships.

As you might imagine, this is an emotional read, full of realistic detail about the physical toll that ALS takes on a person, as well as all of the possible side-effects that treatments cause. As difficult as reading about the physical challenges is, reading about how what it's like to come to terms with the fact that you're going to die much sooner than you thought, with things remaining unsaid.

The one challenge I had with the book was that while I certainly felt sympathy for Richard, he was far from a sympathetic character, and I had difficulty feeling much sympathy for Karina because she seemed fairly detached at times. Regardless, this was a tremendously well-told, emotional story that will stick with me for some time.

See all of my reviews at itseithersadnessoreuphoria.blogspot.com, or check out my list of the best books I read in 2017 at https://itseithersadnessoreuphoria.blogspot.com/2018/01/the-best-books-i-read-in-2017.html.
Profile Image for Jennifer ~ TarHeelReader.
2,122 reviews30.2k followers
March 25, 2018
5 educational and emotionally resonant stars to Every Note Played, my first Lisa Genova novel! 🌟 🌟 🌟 🌟 🌟

I cannot imagine this book being any more emotionally-engaging than it was! I was enthralled from the first chapter, and part of it may have been due to a small personal connection.

Richard is a famous concert pianist diagnosed with ALS. His ex-wife, Karina, teaches children piano lessons in his shadow. When Karina learns of Richard’s diagnosis, she walks through many different expected emotions, especially since their divorce was less than amicable.

As the heartbreaking effects of ALS ravage away Richard’s body and his ability to do what he loves most, he is forced to accept help, and eventually it comes from the most unexpected person, Karina. What follows is a captivating tale of redemption and sacrifice.

I learned a vast amount about ALS- its effects, how it progresses, but most importantly, how it might affect the emotions of the individual with the diagnosis, as well as the loved ones impacted.

On a personal note, my dad was diagnosed with Parkinson’s disease a few years ago. While it is not ALS, I felt an attachment because as Richard lost his ability to play piano, what he loved most in his life, I was repeatedly thinking of my dad who has lost his ability to sing due to Parkinson’s. My dad studied voice and music, and even though he’s self-conscious about singing now, he was able to sing a few words of Happy Birthday to me back in December. A memory I will treasure, as I will cherish the experience of reading this book. I couldn’t help but feel personally connected to Richard’s story.

Overall, Every Note Played is a book I highly recommend because it’s well-written, thoughtful, enlightening, and poignantly powerful.

This was a Traveling Sister Read with the best kind of book to share with my sisters. Please check out Brenda and Norma’s blog for all the Traveling Sister reviews: https://twosisterslostinacoulee.com

Thank you to Lisa Genova, Gallery/Scout Press, and Netgalley for the copy.
Profile Image for Cheri.
1,740 reviews2,266 followers
March 28, 2018
4.5 Stars

”If Karina had grown up fifteen kilometers down the road in either direction, north or south, in Gliwice or Bytom instead of Zabrze, her whole life would be different. Location matters in destiny as much as it does in real estate.”

Growing up in Zabrze, Karina had the advantage of learning how to play the piano by Mr. Borowitz, who taught his students to play Chopin. The piano became her way out of Poland to America and to everything that life brought to her after. In America, she met the man who would become her husband, Richard, and together they brought a new life into this world, their daughter Grace. As this begins, Grace is off to college, not quite one year after Karina and Richard’s divorce was finalized the September before.

Richard is a classical concert pianist, world renowned, as this begins, and he’s just been given the diagnosis of ALS. For a while, he’s in a bit of denial, and then, one day he can’t control the rhythm of his hand trying to keep time with the music. And then there are other symptoms, dropping a half full cup of coffee, no longer having enough strength to clip his toenails, spasms in his fingers, his thumb.

”This is not a temporary problem.”

When Karina hears this news, not – of course – from Richard, but at a party, she can’t believe it is true, and so she makes an impromptu visit to Richard’s place, and it ends with Richard angry, upset, and Karina sitting on the steps outside crying.

Coming to terms with this disease can’t be an easy thing to face, and just as Lisa Genova excelled in ‘Still Alice’ on the topic of early-onset Alzheimer’s, robbing the victim of memories and abilities over time, she excels in this disease that slowly robs Richard of more and more of his ability to take care of himself, to do the one thing that brings him joy: playing the piano.

Eventually, he moves back to the home he had lived in with Karina before they divorced, and even while she’s offering this option to him, she can’t believe that she is offering to do this, to care for this man who was unfaithful to her, and physically and emotionally distant to both her and their daughter. Richard has a difficult time believing it, either.

Many, maybe most, people live their lives without taking too much time out for reflecting on why they’ve behaved badly toward another, to make amends, to find a sense of peace for all. This is quite reflective on the subject of forgiveness, both offering it and receiving it. It is also a thought-provoking story of how quickly ALS typically progresses, and how quickly life can change with just three letters.

There are also the thoughts of a man whose life has changed from touring the world, playing at such venues as Carnegie Hall, and when he wasn’t playing for others, he would play for his own enjoyment. To go from that to losing some ability to play, eventually losing more abilities, having less freedom to go and do, and being left with little alternative to spending entire days with only his thoughts.

As bleak as that may sound, this isn’t a depressing story. It’s sad, of course, but Genova does such a wonderful job of injecting humour and lightness through the darkness.

”Someday, scientists will discover a vaccine, a prophylactic, a cure, and people will talk about ALS the way they talk about polio. Parents will tell their children that people used to get something called ALS, and they died from it. It was a horrible disease that paralyzed its victims. Children will vaguely imagine the horror of it for a moment before skipping along to a sunnier topic, fleetingly grateful for a reality that will never include those three letters.”

From your pen to God’s ears, Lisa Genova.

Many thanks, once again, to the Public Library system, and the many Librarians that manage, organize and keep it running, for the loan of this book!
Profile Image for JanB .
1,143 reviews2,506 followers
April 27, 2018
Lisa Genova has done it again – this is an absolutely brilliant book about ALS and the effects on the entire family. Genova has a gift for putting her readers right there with her characters. She does a great service in fostering knowledge and empathy for all those affected by the diseases she writes about. I buddy read this with my GR friend Victoria and it inspired some truly fantastic discussions. Thanks Victoria!

Richard is a world-class pianist who is “loved by everyone and by no one”. His professional career has never been better while his personal life is a disaster. He’s divorced from Karina and estranged from Grace, his college-aged daughter. Yet, when it becomes clear Richard can no longer care for himself, Richard moves back to the family home and Karina becomes his reluctant caregiver.

This is not an easy book to read. It’s messy, it’s horrifying. The situations are so vividly drawn, so real, I could feel Richard’s pain, shame, and humiliation. Genova unflinchingly shows us the physical and emotional devastation as ALS robs Richard of everything he holds dear. The difficulty of the caregiver role is not ignored or glossed over as we see Karina struggle with emotional and physical exhaustion.

It can be uncomfortable reading, but how can we have compassion and truly empathize without fully understanding what it’s like to walk that path?

The work of dying is emotional as well as physical. There are a lot of unresolved issues this family must work through: regret, guilt, anger, resentment. As their past is revealed, there are a few surprise revelations in store for the reader. The family is a dysfunctional one and no one talks to one another about the stuff that matters, which can be frustrating as a reader. So much pain, so much misunderstanding could have been resolved if only they talked to one another long ago. I didn’t find Richard and Karina the most likable of characters and the fact that I felt enormous empathy for them is a testament to the author’s talent. Seeing growth in the characters was one of my favorite parts of the book.

The epilogue was moving as Lisa Genova gives credit to the people affected by ALS who opened up to her as she did research for the book. Sadly, none are alive to read this book.

Highly recommended!
Profile Image for Dorie  - Cats&Books :).
991 reviews2,765 followers
May 9, 2018
To me there is no doubt that the main “character” in this book is ALS. I had watched someone, from a distance, at the Y where I belong go from being a Navy Seal to losing everything. It was terrifying just from the little that I saw every few weeks.

Richard is not a likable character. He has led a selfish life centered around his career as a concert pianist. He distanced himself from his parents and brothers, was never present for his daughter Grace and moved the family to Boston. His wife Karina gave up her Jazz piano career as there were not a jazz movement in Boston. Then she had Grace and centered her life on her.

When Richard first hears his diagnosis he is in denial, as I guess most people would be. He is convinced that somehow the disease will not progress in him. When his arm and hand begin to stop working and he can no longer play the piano, the awful weight of this disease is finally apparent to him.

The novel is told from Richard’s point of view and Karina’s. They have both hurt each other, Karina denied Richard more children without his knowing and blamed him for her stymied career. Richard was selfish, unfaithful and never encouraged Karina’s career.

This book is about ALS and we are informed in very descriptive, sometimes scary language which at times is hard to read. This book is also about forgiveness, redemption and telling those you love how you really feel.

The writing is very good, sometimes too technical and unfortunately the only glimpse of hope comes in the author’s notes “about the same time that I finished the final draft of this book, the FDA approved a new drug for the treatment of ALS. Radicava will become available by prescription to patients in August 2017, after this book goes to press” “In a trial in Japan Radicava slowed the decline in physical symptoms by 33%”.

I received an ARC of this novel from the publisher through Edelweiss, thank you.
Resubmitting my review because I would like my Facebook friends to share it :)
Profile Image for Taryn.
325 reviews299 followers
August 1, 2018
High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

Accomplished concert pianist Richard Evans feels blindsided when he's diagnosed with ALS. Soon, he'll lose the ability to press a single key on his beloved piano. Moreover, all the time he thought he had to deal with his regrets and resentments has suddenly dissipated. His ex-wife Karina is still angry at him for his multiple betrayals, but she feels drawn towards him again when she discovers his condition. She knows he has no one else. It initially appears that she feels a sense of duty towards the father of her daughter and the man she spent so many years with, but bubbling under the surface is the need to atone for something she's not ready to confront. This family has lots of unfinished business to work through, but not much time to resolve it.

He understands the breadth of what can be communicated in the smallest subtlety of sound. A single key played on the piano can convey the entire range of human experience. Middle C can be played staccato and fortissimo, a loud and sudden yell! It could mean anger, danger, surprise. The same note played pianissimo is a whisper, a tiptoe, a gentle kiss. Middle C held down, along with the foot pedal, can convey a longing, a wondering, a fading life. (Note: There's a scene in the last third of the book that made this passage especially poignant to me.)

This story didn't immediately catch my attention. After reading the first few chapters, I actually thought I was going to hate it! Richard was a narcissistic asshole, Karina was aloof, and I usually start dozing off during overly sentimental descriptions about music. Despite the shaky start, I ended up feeling this story deep in my gut. I went from totally uninvested to full-on ugly crying for a full 30 minutes after the last page. I love when an author can take me on that type of journey! Just like with Lisa Genova's debut  Still Alice , I couldn't put the book down until the last page. I also thought the factual information was more seamlessly integrated into Every Note Played than in her first book.

Everything living is in motion, going somewhere, talking, walking, pecking, flying, doing. Life is not a static organism. Every day, he’s a little more shut down, shut in, turned off. A little less in motion. A little less alive. He’s becoming a two-dimensional still-life painting, slipping inexorably into the alternate dimension of the sick and dying.

ALS is a disease that progressively destroys the motor neurons that control voluntary muscle movement. Richard is confronted with his mortality every day as he gradually loses his independence. He wakes up every morning knowing that each day could bring his next loss of movement. Genova is especially effective at describing the practical losses, the everyday freedoms most of us take for granted. Every passing day carries the chance that it'll be the last day he's able to pull a book off a bookshelf or participate in a loving embrace. Technology makes Richard's life easier, but it has its limitations. ALS carries a high financial and emotional cost. The family is routinely forced to decide between multiple lamentable options. Even the briefest delay in a decision can remove options from the table altogether. At one point they have to decide if a quality-of-life improvement is worth the financial cost if Richard only has a few months to live.

Making him wrong allows her to feel right, and feeling right is her drug of choice. And she’d like to be forgiven. But she can’t bring herself to apologize to Richard, to say the words. She’s handcuffed by shame and a stubborn, self-righteous logic that supports her side of the story. She had her reasons. Maybe her actions now can be the words she’s still too afraid to offer.

Genova writes about people who are diagnosed with neurological disorders, but it's the stories of families navigating their way through impossible circumstances that make her books memorable. ALS is the dominant part of the story because its reach extends to every aspect of their lives, but the emotional core is the tale of a family that fell apart. Richard and Karina's marriage became an endless cycle of hurt and recrimination that went on for so long that it's impossible to pinpoint how it all began. Their resentment towards one another built until it was all-consuming. Both of them find it easier to point fingers at each other than to admit to their own shortcomings, even though that carried a huge emotional cost for them and their daughter. Deep down, they both know that they have to confront their own culpability in the dissolution of their marriage in order to move forward, but knowing time is limited doesn’t make atoning or forgiveness any easier. The tough circumstances don't turn Richard or Karina into perfect, selfless people. The responsibilities of being a primary caretaker are crushing for Karina, even with amazing help ("God bless Bill."). Richard resents what he assumes are Karina's motivations for helping him. They’re both complex, flawed people pawing their way through the darkness and they don't always get it right. I felt for them because they were so devastatingly human.

He needs things to be right between them before . . . He needs things to be right between them before his circumstances force him into finishing that sentence. For now, not finishing that sentence, not squinting his eyes to bring into focus what’s blurry and waiting for him on the horizon, or even ignoring what is hovering two feet in front of his face, is his only line of defense against this disease. Denial, blunt and dull and shaped more like a spoon than a knife, is the only weapon he’s got.

When Karina is frustrated with one of her piano students, she thinks, "Millennials. They’re all afraid to make a mistake. Dylan would rather sit on this bench, paralyzed in fear and indecision, than play the wrong note." I had to smile at her lack of self-awareness! Karina and Richard wasted so many years of their lives because they were afraid of taking the wrong step. It's always tempting to delay difficult conversations or decisions, but sometimes time runs out. Richard's devotion to his career alienated him from everyone, including his daughter. He assumed he had plenty of time to make up for his mistakes, but an unexpected diagnosis stole the luxury of time and limited his ability to communicate. Karina spent years making excuses for her life's course by blaming outside factors, while also moving the goalposts when those factors were no longer relevant. How did a woman who left everything she knew to make a life in the United States become so afraid? How did a marriage that began with love and admiration fall so far off the rails? Every Note Played is about communication and the narratives people create to protect themselves from blame or avoid hard conversations. The moments of closure are bittersweet and not every conflict is resolved perfectly, if at all. Sometimes the characters just have to make do with the options they're given. I was thankful for the small bits of comfort these characters were able to find but left with heartache for the words that will forever be left unspoken.

Funny how the story of their lives can be an entirely different genre depending on the narrator.

• If you're interested in learning more about what it's like to live with ALS, you might be interested in the following books:
> It's Not Yet Dark - A memoir by Irish filmmaker Simon Fitzmaurice. He was diagnosed with ALS when he was 34 years old.
> I Found My Tribe - Simon's wife Ruth wrote a memoir about the challenges she faced as a wife and caretaker of a person living with ALS.
• I highly recommend reading the acknowledgments, because Genova writes about some of the people with ALS who inspired her. One of the men she mentions is Richard Glatzer, one of the writers and directors of the movie Still Alice.  She also encourages readers to google Chris Connors's obituary: here's a link.
Voice Banking, (2)- Technology that allows people who are losing their ability to speak to continue using their own voice.
• Part of the reason Every Note Played resonated with me is that I like stories about couples faced with difficult circumstances and bittersweet endings. If you have similar interests, you might also like American Marriage or Stay With Me. Those two books are more in the literary realm (+ a tad bit of soapiness).
Call to Action: LisaGenova.com > Readers in Action > Donation link to ALS ONE.

I received this book for free from NetGalley and St. Martin's Press/Minotaur Books. This does not affect my opinion of the book or the content of my review. It's available now! 
Profile Image for Erin.
2,956 reviews485 followers
March 4, 2018
Thanks to NetGalley, Simon& Shuster Canada, Lisa Genova, and all those who shared thier personal ALS journey in the makings of this book.

First, I have to stop crying. This is perhaps the most powerful book Lisa Genova has written since Still Alice. Amyotrophic Lateral Sclerosis( ALS ) is the medical storyline brought to the surface in this contemporary family drama. Richard and Karin are the divorced couple that reluctantly find it becoming part of their world. Both Richard and Karin are carrying a lot of anger and hurt from their rocky road of a marriage, but when Karin becomes the default caregiver for Richard- both must confront the past. As well, the couple's only daughter, Grace, has a rocky relationship with her father and Lisa Genova skillfully weaves this into the story as well.

Lisa Genova is the master storyteller of our era, bringing very difficult diseases( Alzheimer's, Huntington's and ALS) to the attention of her readers. She does it the hard way too! Like her other books, we are told the story not just from the spouse's point of view, but the patient himself. That alone can be a daunting task, but LG does it with the utmost care and respect.

I am beyond excited to talk about this book with my fellow readers! But they might have to bring their own Kleenex box!
Profile Image for Esil.
1,118 reviews1,336 followers
March 14, 2018
Lisa Geneva’s novels are purposely didactic, in the sense that she uses her fiction to teach. In her case, she strives to teach her audience about medical conditions and illnesses. For example, she’s written about Alzheimers (Still Alice) and autism (Love Anthony). Every Note Played focuses on ALS or motor neurone disease.

I have found Geneva’s books uneven as fiction. Still Alice blew me away, but some books felt like the didacticism overtook the story. Every Note Played didn’t blow me away, but it’s definitely one of Genova’s strong books in my view. Richard Evans is a forty five year old concert pianist when he is diagnosed with ALS. Out of necessity, his ex-wife Karina becomes his caregiver. The book is fairly short and Genova does not dawdle on the progress of the disease. Rather the story moves forward in robust increments, showing the brutal rapid devastation caused by ALS.

Besides the story of the disease, Genova does a good job with Richard and Karina. As Richard’s disease slowly traps him in an increasingly uncooperative body, she shows how people can trap themselves in their own thought patterns. Karina helps Richard out of a sense of duty and he accepts her help because of necessity, but there is nothing sweet or easy about this. There is some reckoning at the end, but Genova does not lapse into sentimentality. Much remains unsaid and regretted. Sad but realistic.

As I write this, I’ve just found out that Stephen Hawking died today. He had ALS. The course of his illness was unusual. Most people with ALS die much younger and most do not continue to live brilliant productive lives. Genova does a good job of highlighting this brutal disease with unsentimental humanity.

Thanks to Netgalley and the publisher for an opportunity to read an advance copy.
Profile Image for Liz.
2,020 reviews2,521 followers
March 18, 2018
Lisa Genova always tackles the tough issues. Alzheimer’s. Autism. Huntington’s Disease. This time it’s ALS, Lou Gehrig’s Disease. But this one doesn’t go for the obvious sympathy vote. Richard is a concert pianist and is losing the one thing he loves, which is the piano. But he’s also a prick. Divorced from his wife, estranged from his college aged daughter. He’s on top of the world as far as his profession, but once the symptoms of ALS start, he’s forced to see how empty his life is.

You’re quickly shown how hard and fast this disease is. Things we take for granted become first difficult and then impossible. My head spun taking it all in and I was just reading about it, not experiencing it. As his ex-wife, Karina, thinks, this isn’t something you wish on your worst enemy.

The story is told from the alternating perspectives of Richard and Karina. In addition to the story being about ALS, it’s also about the equation of relationships - who has the power, who is giving more, who is or is not communicating. “They never talked about any of it. The were complicit in their mutual silence.” I’ve known divorced couples that “reunited” when one became ill and the other became a caretaker. I'm not sure if it shows that the initial love still lurks somewhere underneath the hate. Or what. I really don’t know if I could do it.

My father has needed nurses after breaking his hip two years ago. So, I have come to see how special the people are that fill those roles. As Richard finds, the health aide quickly becomes so much more - “equal parts brother, doctor, parent and friend”.

As Richard deteriorates and Karina has to do more and more, Genova does a great job of exploring all her emotions. At times, the book can feel dry but at other times, the emotions explode all over the page. The book reminds you there are no do overs. Time lost is lost. But there can be forgiveness.

Not as good as Still Alice, but still very well done.

My thanks to netgalley and Scout Press for an advance copy of this book.

Profile Image for Lisa.
621 reviews234 followers
April 21, 2018
Every Note Played
Lisa Genova

MY RATING ⭐️⭐️⭐️⭐️⭐️
PUBLISHER Gallery/Scout Press
PUBLISHED March 20, 2018

An emotional profound chronicle of the terrifying effects of ALS disease and the opportunity for redemption it brought to one family.

Richard Evans loves the attention and applause when he plays. He’s an accomplished classical concert pianist and has played in the most famous concert halls all over the world. His fingers are finely calibrated instruments that dance across keys, making music come alive. But now Richard has ALS and his right arm is paralyzed, his left is not far behind. Karina, his forty-five year-old ex-wife is also paralyzed, paralyzed by excuses and fear, and stuck in an unfulfilling life as a piano teacher, having given up her dreams of a jazz pianist long ago. She’s despises Richard and blames him for their failed marriage and her lost career. As Richard’s ALS progresses and he is no longer able to live on his on, Karina becomes his reluctant caretaker.

“He counts five other people close enough to hear him if he yells, but they might as will be in Timbuktu because he’ll never asked any of these strangers for help. And he’ll never ask his father or brothers in New Hampshire or his daughter in Chicago. And he can’t ask Trevor in New York or his medical team at Mass General or even Bill, who is somewhere with his next client. He is alone in the Public Garden. He’s alone in his home, He’s alone in his ALS. And he’s suddenly, overwhelmingly terrified.”

Every Note Played is about much more than ALS. It is about taking something as horrific as ALS, and using it to make amends, to set things straight and to apologize for all the hurt Richard and Karina have caused each other, before it’s to late. Basically it’s about forgiveness. The feelings and emotions brought out in the story were striking and the character development was superb. Lisa Genova’s writing is amazingly lyrical, much like the beautiful Schumann’s Fantasie in C Major that Richard played at Carnegie Hall. Genova derived her vivid descriptions of Richard’s symptoms and her understanding of the disease and its progression directly from several very dear friends with ALS. Similar to her 2009 book Still Alice, and her mother’s Alzheimer’s disease, for her, it’s personal. That is precisely what makes Every Note Played one of the best books of 2018.

Thanks to Netgalley, Gallery/Scout Press and Lisa Genova for an advanced reading copy of this book in exchange for a honest review.

“Every note played is a life and a death. “
March 8, 2018
4.5 sad sad stars

Perhaps you have heard of Amyotrophic lateral sclerosis, Lou Gehrig's disease commonly referred to as ALS. To receive a diagnosis of this disease is a death sentence coming in the form of the destruction of your neurons that control all your voluntary muscles. These nerve cells affected are located in you spinal cord and your brain ultimately leaving one trapped in a body that doesn't work, doesn't move, doesn't function, while your mind stays fully functioning. The cause for most patients is unknown while in a very few, it can be traced to a genetic link.

For Richard, a renowned concert pianist, this is the diagnosis he has received. He will experience the loss of the use of his hands, then his arms, and as this disease progresses he will be person locked within a body that will no longer work. He will no longer be that concert pianist receiving those standing ovations, being acclaimed, being loved by many. Who will care for him? Who will travel this road with him? Who will be able to make that journey and be strong for him?

Richard was formerly married to another pianist, Karina. They had a daughter, now in college, but now they are divorced and Karina has many painful memories of what her life with Richard had entailed, the unfaithfulness, the absences while Richard jetted around the world giving concerts, the giving up of her career to be mother to their daughter. However, once she learns of Richard's illness she makes a decision that will change her life, bring her a level of acceptance and ultimately find the peace that comes with forgiveness.

Ms Genova gives us an intimate look into ALS. She shows us its devastation, the way in which it robs one of life and perhaps of hope as well, since right now, there is no cure. She writes of the care givers, generous loving people who provide for ALS patients and the support system the family so desperately need. She takes us into the mind, heart, and soul of not only the one affected but also the toil it takes on family. It was not an easy book to read. There is no happy ending for ALS patients, but perhaps there is hope for the families they leave behind when they know that all has been done to provide the best quality of life for their loved ones through the various organizations that provide care for these patients. Perhaps you know someone with ALS. Perhaps you have heard of their trials and illness. Perhaps the goal, fostered by the ice bucket challenge to cure ALS will be achieved by 2020. I have known of three people with ALS. All of them were wonderful people, loved by family and friends, productive, accomplished, and sorely missed by the family and friends they left behind. I hope and pray that soon this disease will become a memory that it will no longer terrorize and destroy lives that are so worth living.

Thank you to Lisa Genova, Gallery Scout Press, and NetGalley for providing this reader with an advanced copy of this most moving and heartbreaking book.
March 31, 2018
Norma and I were lost in the all my heart and emotional lush coulee with three of our regular visiting Traveling Sisters reading Every Note Played.

Lisa Genova writes skillfully with knowledge and compassion as she explores a family’s journey through ALS. She shows us insight into the reality of ALS for people with this disease and their family who cares for them.

Lisa Genova does an amazing job creating well-developed characters here with Richard and Karina and we loved the dynamics between them. Through both of their perspectives, we see each coming to terms with their failed marriage, their past decisions and find forgiveness and facing the truth. We see not only the physical decline of Richard’s health but also the emotional ramification of the disease has on him as well.

We found the ending so well done and love Lisa Genova’s ability to write so beautifully with understanding, hope and compassion with her characters and giving them strength in times of such heartache. Truly one of our favorite Traveling Sister Reads this year so far. We highly recommend.

Publication date March 20, 2018

Thank you so much to NetGalley, Simon & Schuster Canada, and Lisa Genova for the opportunity to read and review a copy of this book.

Review is written and posted on our themed book blog Two Sisters Lost In A Coulee Reading.
Coulee: a term applied rather loosely to different landforms, all of which refer to a kind of valley.
Profile Image for Kelli.
850 reviews394 followers
April 27, 2018
Lisa Genova does it again with another brilliant portrayal of an insidious disease stealing the life of her main character. As is always the case with her novels, the ugly truth is revealed about flawed families, broken dreams, and the indignities of this cruelest disease. I wonder with each of her books just how long her formula will yield (such spectacular) results, but she got me again...glued to this compulsively readable story and in the end sobbing for its unlikeable protagonist, then for those who aided her research and for a whole bunch of people I’ve never met. Devastating story with a redemptive quality. Though excellent, it’s no Inside the O’Briens which was my favorite of hers followed closely by Still Alice.

I loved the author’s moving tributes to those people she met while researching this book and I applaud her efforts to raise funds for each disease she profiles in her books.

4.5 stars
Profile Image for Bam cooks the books ;-).
1,849 reviews231 followers
March 17, 2018
Lisa Genova has done it again! In Still Alice, she wrote movingly about a professor who in mid-life develops Alzheimer's disease and we experience the progression of that memory-stealing disease through her eyes.

In this her latest book, the disease Genova takes on is ALS, ironically in the news again this week with the death of physicist Steven Hawking. In her story, the man who learns he has ALS is a classic pianist by the name of Richard Evans and the first blow he suffers is the loss of the use of his right hand, so devastating for a pianist. Again we experience the progression of this dread disease through Richard's experiences.

This is also a very touching story about the dynamics of family relationships when life-changing disease strikes, the story alternately told by Richard and his ex-wife Karina, who it ironically falls to to take care of Richard as his health fails. His career took its toll on their marriage and their family but there are other secrets that drove them apart: can they forgive each other and themselves before it is too late? And will Richard be able to repair his relationship with his only child Grace, who feels he loved piano more than he ever loved her?

I learned so much from this book: about ALS and caregivers, about Polish holiday traditions (I may bake a poppyseed roll for Easter!) and I enjoyed listening to the various classic piano pieces mentioned in the story while reading, courtesy of youtube.

Many thanks to NetGalley, the author and publisher for granting me the privilege of reading an arc of this new book for an honest review. And thanks to Lisa Genova for suggesting ways to contribute to the pursuit of a cure for ALS.
Profile Image for Suz.
1,096 reviews565 followers
November 30, 2022
Such care and empathy in this story, and I love the author’s notes and acknowledgments.

I was constantly reflecting on how much the author must have known about music, as so many scenes used music to convey very serious thoughts and feelings. This was so enjoyable, I love music, cannot play it, but appreciate the ups and downs and the colours and moods it can represent. And for music to be reflected on the condition called ALS to show the reader what this must be like, I found this extraordinarily moving.

Richard, an early forties man and accomplished pianist, has just been given the diagnosis. Initially thinking this may be one of the many ailments struck by pianists, he hoped in blind way, it was something small, something treatable when he suffered symptoms affecting his arms and hands. He was a relatively young and healthy man living out his full creative potential.

This was not to be.

Richard was used to the high life, touring the world, and playing in amazing concert halls. He was the ultimate player, and he had many dalliances and many women falling at his feet. His live was changing inexplicably.

He also had an ex-wife and college aged daughter who was not aware of his diagnosis. This was surprising, but when we begin to learn more about his fractured relationships, and that of his own family of origin this becomes clearer.

Richard’s ex wife, Karina, was also a pianist, and her talent was shown throughout this story, and her role as Richard’s carer as he was losing his life was heartbreaking and loving. Their daughter also began to get to know her father again, as well, just at the time Richard’s body is becoming rapidly paralysed. Karina loved Jazz piano, and Richard never understood this passion. There is a constant undercurrent of dissatisfaction between this former married couple, and the commitment shown by Karina is palpable, but very hard on her. I love how she knows what music to play for Richard, and when to play.

As a neuroscientist, this author has again tackled a subject that she knows, but as stated in her acknowledgements cited the many friends she had made along the way, and the organisations that supports this illness and the hard work so many people put into this. One of these dear friends started an organisation to raise funds and awareness, and that also, another friend with a different form of ALS, Richard Glatzer, wrote and co-directed the film Still Alice. With one finger on an iPad. She had never heard his voice. Hearing her talk of these special people was heart wrenching. She was changed by these people she loved.

A very well written story, thoughtful and eye opening. I am grateful for my good health and that of my family, but books such as this will always open my eyes. And this is necessary.

This author has a way of showing the wider population who would not normally know much about health conditions that take lives away, but who also shows how people get on with the hands they are dealt, still showing strength, courage, and tenacity. The final section made me sit and think for minutes as I stopped my car. I loved the audio version of this. This is why I am a reader.

I took the author's advice and looked up this gentleman's obit, it's worth a look: https://www.legacy.com/us/obituaries/...
Profile Image for Holly.
1,430 reviews983 followers
April 9, 2018
3.5 stars

Don't get me wrong, this book was pretty gut wrenching at times, had a really insightful look into the progression of ALS, and had some very realistic characters - but in the end I only kinda liked it. This book suffers in part because I can't help comparing it to Genova's other book I have read, Still Alice, which I freaking loved. Both books deal with the progression of a disease that can't be stopped and slowly erodes everything away. But this book takes a slightly different tack, by making both of the main characters pretty unlikable even as they deal with these new horrifying circumstances. Normally I like this kind of thing, but it just made me want to shake them seeing as the level of denial, lack of communication, their past needlessly hurtful decisions, and current lack of empathy all got to be a bit too much for me. I mean, they come to realize their faults and finally gain some level of forgiveness/acceptance, but for the most part it's all internal. They don't have any real conversations. It's infuriating. So that took my enjoyment of the book down some. But I liked it, just didn't love it.
Profile Image for Victoria.
412 reviews317 followers
May 20, 2018
“Everything begins and ends. Every day and night, every concerto, every relationship, every life. Everything ends eventually.”

There is what happens in this story, but also what this story is about. As much a powerfully moving story about ALS as it is about bitterness, resentment and, ultimately, forgiveness. Flawed characters and a fractured family, each with their own story to tell…'funny how the story of their lives can be an entirely different genre depending on the narrator.’

I was so captivated by the story, the forward motion and emotionality of it all that even though Genova’s writing is at once both tactile and also profound and I would have normally been bookmarking every other line, instead I read without pause, as immersive a novel as I’ve read in recent memory. Genova made me feel what every day with ALS would feel like, each and every loss of motor function, every new indignity, every day one step closer to the inevitable. All the while feeling for these characters, what was, what could have been and what would never be.

This is my first book by Lisa Genova and I now join her legions of fans, she is a remarkable storyteller. I will be adding her highly regarded books to my reading list knowing that I will find more heartbreak, but also more compassion and understanding. Highly recommend.

P.S. I’ve avoided this author’s books, they always seemed more science than story, but with a friend with ALS and another whose college friend was just diagnosed--that’s two degrees of separation from two people with this seemingly rare, yet monstrous disease--I felt I had to tackle the subject head on. No longer could I avoid the pain I was sure this book would inflict and my friend Jan mercifully agreed to read along with me. Thank you, dear friend, for patiently wading through all of the thoughts and feelings this evoked, our shared experience made this all the more exceptional.

Profile Image for Veronica ⭐️.
970 reviews196 followers
July 8, 2018
"I’m not a cryer,"I say as I’m trying to stop the tears welling.
Here they come again, "But I’m really not a cryer."
"Ok, you’ve got me Lisa Genova. I’m a blubbering mess now."

Every Note Played is an emotional and well researched story on the degenerative disease ALS. When Richard, a concert pianist, is diagnosed with ALS he is at first in denial but as the degeneration of his muscles progresses he must face a life without his beloved piano. Richard is a person who has a single minded love of playing piano that is at obsession level. the notes and tune are all he thinks of during his waking hours.
"He is no longer playing the music. The music is playing him." "Without the piano, how can he live?"

Genova describes the symptoms and the progress of the disease in a poetic and personally touching voice laced with overwhelming compassion. The characters' inner feelings are expressed with clarity and sensitivity.

Richard and his wife are divorced after a bitter buildup of blame on both sides. The accusations and hurt had still not been resolved and as it burned away in both of them neither knew how to start the repair.

Genova focuses on relationships and forgiveness, the all consuming job of caring for a terminally ill loved one and the wonderful job done by home help workers. As devastating as the disease is the advances in technology to aid the sufferers and their carers is amazing to read about.
A recommended read. The emotion is real and not over dramatised

This review is part of the Beauty & Lace Bookclub
To read the original review on Beauty & Lace please visit http://bookgirl.beautyandlace.net/boo...
Profile Image for Jenny.
269 reviews98 followers
August 5, 2018
Another heart wrenching story from Lisa Genova. Her stories are honest and told from all sides. Genova doesn’t pull any punches or sugarcoat the story but does tell it from a place of humanity. Her books will linger with you and make you think. #lisagenova
Profile Image for Carolyn.
2,172 reviews615 followers
April 8, 2018
ALS or MND is an awful relentless disease with gradual creeping paralysis that will eventually lead to death in a short time. If you don't know much about ALS, Lisa Genova has created a very accurate picture of every stage of this horrible disease. Her main character, Richard is a famous concert pianist so loss of the use of his hands and then his arms was particularly devastating. Estranged form his father and brothers and divorced from his wife Karina, Richard had no one to help care for him when his disease advanced to his legs and he had to start using a wheelchair. Reluctantly, Karina offers to take him in and help care for him once he can no manage on his own.

Karina and Richard's marriage started to fall apart when he moved the family from New York to Boston, away from the jazz groups and venues that Karina was starting to get involved with in her developing career. When their daughter Grace was born, Karina instead threw herself into raising their child while Richard travelled the world playing to packed concert halls. However she had always resented his success and her failure to have a career in music and eventually her decision to not have another child and Richard's affairs away from home led to the end of their marriage. Now with Richard dying they have a second chance to look at their shared history and relationship in a kinder light.

There is a lot of very clinical detail about what patients with ALS and their families can expect to experience in this book in that the stages of the disease, the medical equipment and assistance from carers required are all carefully discussed. In some ways this overshadows the personal story here and I felt some emotional distance from what Richard, Karina and their daughter Grace. a college student would be experiencing. However, it is still a powerful well written account a man dying of ALS and his family grappling to find forgiveness and love for this man put his career ahead of being a good husband or father.

With thanks to Netgalley and the publisher Simon & Schuster for an advance copy of the book.
Profile Image for Jennifer Blankfein.
384 reviews653 followers
April 7, 2018
I am a huge fan of Lisa Genova's and have enjoyed and highly recommend her four previous novels, Still Alice, Inside the O'Brien's, Left Neglected and  Love Anthony.  Genova has a degree in Biopsychology and a Ph.D. in Neuroscience, and her medical knowledge adds powerful enrichment to her heartbreaking and life affirming stories that tackle real neurological diseases.

In Every Note Played, concert pianist, Richard, experienced life's joy through playing piano, his expert fingers on the keys were his livelihood and his passion.  Once given the detrimental diagnosis of ALS, Richard started losing the use of his hands, then arms.  His ex-wife, Katrina was leading an unfulfilling life, teaching piano to disinterested kids after school.   Years ago her career was put on hold for Richard, and she never faced her fear to pursue her dreams.  Feeling like she has little choice, Katrina reluctantly decides to be Richard's caretaker.

Genova expertly explores regret, guilt and forgiveness as we witness the progression of this deadly disease. Richard and Katrina tip toe around their past while they attend to the growing responsibilities and challenges ALS demands of them.   Fighting their feelings of denial and anger, Richard, Katrina and their daughter use their fleeting time together to work through the disappointments of their relationships from the past and try to connect again one last time before it is too late.  

Every Note Played is a tragic and upsetting story about a horrible degenerative disease, but with the eye on human relationships and great insight, Genova explores life choices and their consequences, giving us incentive to be less selfish, and strive for peace and understanding amongst family and friends before we run out of time.  I highly recommend this book.

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Profile Image for Erin Clemence.
1,052 reviews311 followers
March 30, 2018
So much thanks given to the publisher, NetGalley and the author for a free, electronic ARC of this novel received in exchange for an honest review.

Lisa Genova is back with her newest novel, “Every Note Played”. Richard is a world-renowned classical pianist, a passion that has taken him around the world, and has cost him both his wife and daughter. When he is diagnosed with ALS, Richard must quickly come to terms with the fact that his passion and the love of his life, piano, can no longer be part of him. Soon, his ex-wife Karina moves in with him to help him with his daily care, as he dwindles from the strong, talented pianist, to a weak, disabled man who needs help with his most basic needs. As Karina steps up in her caring role for Richard, the two work to repair their relationship with each other and Richard’s relationship with his daughter, and soon they are faced with the ultimate, life- ending question.

As always, Genova’s novels touches parts of my soul that make me grateful every day for the simple things in life. Genova’s well-researched novels always play with my emotions, and “Every Note Played” definitely fits that role. The powerful depiction of life and death with ALS is not only powerful and thought provoking, but sad and bittersweet as well.

Richard and Karina are simply two people who used to be in a relationship and, due to mistakes made by both parties, are now only connected through their shared adult daughter. They are forced back together by horrible fate, and their bond intensifies, forgiveness is given and words held back are finally said. These two have an honest and real relationship, and never once does Genova force them back into a romantic role, which would be completely unbelievable and actually, quite cheesy. Their powerful and honest relationship immediately made me fall in love with both characters.

The ending of the novel is powerfully moving and brings the storyline to a firm and concise close. The story is told from the perspective of both Karina and Richard, and the reader is able to witness the struggles of ALS first hand, from both the patient and the caregiver.

It is evident that Genova puts everything she has into her novels, portraying her characters with as much honesty as she can, while still portraying the painful reality of this most tragic neurological disease.

With the death of Stephen Hawking just last week, this novel was a particularly poignant one for me, as he was mentioned several times throughout this novel as being an ALS “champion” and the face of ALS. I am always blown away by the way Genova’s novels stick with me, and “Every Note Played” will be one of those novels. Although I am completely tone deaf and not at all musically inclined, the thought of losing something that defines me as a person is horrifyingly scary.

Kudos to Genova for yet another powerful novel on the nightmares that the human body can wreak, and the simple things we take for granted.
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