Every Note Played

Pub Date:   |   Archive Date: 29 Mar 2018

Member Reviews

Every Note Played is the emotionally wrenching story of an internationally celebrated pianist, the family he left behind to pursue his musical career, and his sudden diagnosis at age 45 of ALS.  The reader is given a no holds barred look at this horrific, degenerative disease and all of its devastating effects on both Richard Evans and his very reluctant caregiver, his ex-wife Karina, and their daughter, Grace.  We get an intimate look at Richard's and Karina's realized dreams, sacrificed dreams, and the selfishness that wrenched them apart and completely destroyed their marriage.  

This book is well composed, compassionate and excruciatingly honest.  It continually touched my heartstrings as I ran through a gamut of emotions while reading it.   The characters are well written, and all too human -- which makes Every Note Played so particularly moving.  I am so glad I had the opportunity to read this book and very highly recommend it.
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I didn't know much about ALS besides the ice bucket challenge that was everywhere a few years ago. This book was poignant. bittersweet, and emotionally charged. I couldn't put it down, and it was all character-driven. They were flawed but redemptive.
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This is my second Lisa Genova book and I’m so glad I got the chance to read this one.  Wow this one affected me so deeply.  As someone who suffers from chronic pain and often has to rely on my husband to take care of me, watching our couple go through all the stages of care from this disease was incredible.  The story was true to life, I felt like the characters were real and often forgot this this was fiction.  Lisa has a great talent in writing her characters in such a way that you feel that they are people you know in real life.  She writes stories that will make you feel deeply while also reflecting from within on how you would feel and handle these situations.  I love her writing and the emotions she can bring to the surface for me.
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Thank you netgalley for this free e-ARC. Every Note Played is a truly beautiful story. I loved it from page one!
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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.

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.

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.

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.

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.
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I finished this book a couple of days ago, but I needed a little time before I could write about it. Every Note Played is a novel written by Lisa Genova, bestselling author of Still Alice. In this newest book, Genova explores what it is really like living with, and dying from, ALS. Richard is a world-renowned concert pianist who has spent literally most of his 45 years at the piano, practicing in excess of ten hours a day and devoting his life to his music to the detriment of his family. Divorced from his wife Karina and estranged from his only daughter, Richard lives alone in a fancy Boston apartment when he isn't on tour playing the most prestigious concert halls in the world. As weakness begins to develop in his right hand, he desperately tries to deny anything is wrong until the music begins to suffer. His ALS is a devastating and relentless blow to all that he holds dear. When the course of the disease leaves him with no choice but to turn to his ex-wife, he must come to grips with who he was, who he now is, and what he will become before ultimately succumbing to his illness.

This book was fantastic and fascinating and frightening all at once. I was heartbroken reading the indignity and anguish that Richard endured as well as that of Karina and their daughter Grace. Passages like this one made me weep for him:
  
He'll never play the piano again. This is the loss he's imagined in microscopic detail from the first hints of this disease, the one that guts him through his center and keeps him from sleeping and makes him want to swallow a bottle of pills and end his life now. Because without the piano, how can he live?

And this one:

...he plays a single note, D, with his pinkie. He holds the key and the foot pedal down, listening to the singular sound, bold and three-dimensional at first, then drifting, dispersing, fragile, decaying. He inhales. He listens. The note is gone.
Every note played is a life and a death.

As I read this book, I carefully marked the names of the musical pieces mentioned by both Richard and Karina and then searched for each of them on YouTube. I cannot recommend enough that you do the same. It will give you a whole new appreciation for the talent that Richard possesses and then excruciatingly loses. 

Lest you think Genova is just sitting in her office making up all these stories, let me assure you she is quite qualified. She earned a degree in biopsychology from Bates College where she was the valedictorian and then went on to earn her doctorate in neuroscience from Harvard University. Genova interviewed many patients with ALS as well as their caregivers. She communicates their loss, their pain, and their fear. She also shares their bravery and courage and love. Reading the acknowledgements section of this book should not be skipped, no matter how tear-filled and snot-covered you might be at the end.

After Still Alice released, Genova gave a TED Talk about how to possibly prevent Alzheimer's disease. I think you will find it both interesting for the content and also for the opportunity to hear the author of this wonderful book speak.

Still Alice is still sitting in the pile on my bedside table, but it will quickly be making its way to the top. I can't wait to read more Lisa Genova.
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The amount of research that must have gone into the this book definitely shows in the knowledge of the topic and the way the writing seamlessly flowed to capture the thoughts and feelings that possibly go through someone's mind who has ALS.  The story was heart-wrenching yet at the same time heart-warming in parts and captured the essence of thoughts that also go through loved one's minds as they also deal with the idea of how things chance for a person with ALS and how it changes the dynamics in the family.  I requested this book because I have enjoyed another of Lisa's books and also my mom died from ALS quite a few years ago and I wanted to see how Lisa tackled the topic.  She did a great job of researching and telling the story.,.  I did have to stop reading a few times because it touched so close to home.
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Like she did in Still Alice, Genova gives the reader a (fictional) first-person account of what it is like to live with a horrible disease (in this case, ALS). I appreciate that Genova doesn't sugar coat things, or make her characters into saints. 

I remember being compelled by the storyline and the tragedy of Still Alice, but here I was impressed by Genova's writing as well. Every Note Played goes far beyond descriptions of a medical issue and deep into characterization.
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How do I tell people I enjoyed a book novel dealing with a devastating disease? First of all, I tell readers that it is written by Lisa Genova, and she brings a wealth of background and research to anything she writes. Second, I tell readers that the characters are not their disease, that they are complex and layered and Every Note Played explores respectfully how they do, and sometimes do not cope, adjust or accept the disease's limitations and prognosis..  Every Note Played carries the devastating disease ALS as it's pivot point. Third, I tell readers that Every Note Played is as much a story of the supporting characters as it is of the main protagonist, and that they are every bit as compelling in their thoughts and actions. 
I really think that Every Note Played would make an excellent book discussion selection.
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I was a little nervous about reading this book because I thought the subject matter of ALS might be very sad. While there were certainly sad parts, there were also joyful parts along with funny sections. I not only learned so much about ALS, but I also found it to be a moving story. It is a book I hope everyone reads!
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Lisa Genova is the master at taking an ever-increasing health condition and showing how it affects the individual and their families. This is a very poignant story.
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Like all Genova books, this one explores the relationship in the context of the onset of disease.  Made me think, what if I was her?or him? I felt it was informative too.
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Lisa Genova is one of the most elegant, compassionate writers I have ever had the pleasure of reading.   Her ability to research and transform medical science into an engaging and touching story that we can all relate to is unmatched.  In this wonderful and powerful book, she has humanized the disease of ALS and given the victims of this disease a voice, helping us understand just how devastating it is for all involved. Parts of it may make you uncomfortable, but the honesty with which she writes is one of the reasons her books are so compelling.  You will leave this story with a sense of empathy for those afflicted with ALS, as well as those who care for them.  Beautifully written, unforgettable, emotional and gut-wrenching, this is not one you should miss.  Many thanks to the publisher and NetGalley for allowing me to read a review copy.  This is my honest opinion.
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As a portrait of what it’s like to suffer from ALS, and the devastating effect it has on the sufferer and his or her family, this book is second to none. It explains how the disease progresses, what can be done to alleviate some of the effects in the early stages, and worst of all, how the patient’s inexorable decline plays out. As a novel, however, it’s very unsatisfactory indeed. Genova has sacrificed artistic integrity for her message. The plot, such as it is, is predictable and there are no narrative surprises. What we are left with is a banal tale about a fractured family who through extreme suffering find redemption. Given her characters this is a most unlikely outcome. Richard is a classical pianist who is struck down with the disease when at the peak of his career. He has sacrificed wife and child to that career and his marriage has broken up and his daughter Grace is alienated from him. When he begins to need more help, Karina, in spite of her resentment at his previous behaviour, moves back in to look after him. Naturally – and inevitably – Richard is forced to reflect on his past actions and naturally – and inevitably – has some sort of epiphany and says sorry and everything’s is resolved. This is lazy writing. I’m not saying it couldn’t happen but given what we know of Richard, Karina and Grace, our credibility is stretched to the limit. A handbook for ALS, certainly. A compelling, well-written novel, certainly not.
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Last year, my Facebook feed was filled with people doing the "Ice Bucket Challenge"; agreeing to have themselves videoed while pouring ice water on themselves, in exchange for donations for ALS research.  Here in New Orleans a local hero is Steve Gleason, a former player for the Saints, who has lived with ALS since 2011.  Both this book and the story of Steve Gleason's life make it clear that ALS is one nasty disease.  



When Richard is first diagnosed, as many people do, he went through a "denial" stage--his disease would progress slowly, he would manage to be independent, he wouldn't lose his voice but  the losses came anyway.

Richard and Karina had divorced and of course each was well aware of what the other had done to break trust.  Each was still hurting over the break-up of the marriage but since they weren't the one at fault, neither could really move past it either.  Marriage vows are taken "for better for worse, in sickness and in health" and while Richard and Karina were not able to live those vows while healthy, Karina was able to live them when Richard became ill.  By caring for him through his decline and death, she showed that love is a decision, not just an emotion and, in the end, her love was, in some way, returned. 

This book deeply moved me, which is unusual in a book where I really didn't like any of the characters.  Richard was way too self-centered.  Karina struck me as one of those people who just didn't know how to be happy--her problems in life before Richard got sick weren't all that much different or greater than many people's problems but she couldn't just relax, focus on the good and be happy.  Rather she spent her time focusing on what she didn't have and refusing to move on with life.  Their daughter was a rather self-centered college student, but I guess that's pretty par for the course at that age.  I did like the primary home health aid and if there was ever a job that is way underpaid, that's it.  



I'd like to thank the publisher for making a review copy available via NetGalley.  Grade:  A.
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“Every note played is a life and a death.”

Most of us won’t get the time to reflect upon our lives and make amends before we die. Some people do and Richard is one of them. A renowned concert pianist, he first notices signs of his disease when his right hand won’t play the notes on time and he keeps dropping things. He is diagnosed with ALS and the only thing worse is realizing he has the disease and no one who loves him.

I requested an advance copy of Every Note Played from NetGalley to review. The plot looked very interesting. It was published in March. I have not read any of Genova’s other books, but plan to after reading this book.

Richard’s ex-wife, Karina, finds out about his ALS diagnosis from some friends and despite the bad blood between them (lies and affairs), she ends up taking him back to their home to take care of him. While Richard focuses on possibly making amends with his own father, he starts to realize he should also make amends with his own daughter and his wife. As his disease progresses and he can no longer talk, he thinks more about how life could have been different for all of them if he had loved them as much as he loved the piano.

I really enjoyed this book as it’s about love, redemption, forgiveness and regret. All the characters grow in the book and it is very realistic in its presentation of relationships and ALS. The book is for adults as there are adult-themed thoughts from some of the characters and death is a central theme to the book. It is a very memorable read.
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I received a free ARC from NetGalley in exchange for an honest review. 

Lisa Genova is a great writer. She has the ability to bring some really scary thoughts into really honest, real stories. The diseases about which she rights are so frightening, but real. She tells not only the effect of the patient, but the family as well. ALS is not a great thing to think about, yet she writes a wonderful, thoughtful book about someone going through it. I'm glad I read it.
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Lisa Genova has once again spared no details in depicting a horrible, debilitating disease. Here she focuses on ALS, commonly called Lou Gehrig’s Disease. Even cringe-worthy details like helping a grown man out of pants smeared in excrement, are painfully recounted. 

This is the story of Richard, a gifted classical pianist who slowly succumbs to ALS. He became famous for his virtuosity and with fame, came his philandering ways. As a result, he now has an ex-wife who despises him and a daughter who is distant. His entire life changes when he first loses the use of one hand and then the other. He no longer can engage in the one passion that has consumed him his entire life – playing music. Now that he is alone and desperate, his former wife Karina has assumed the role of caretaker. She has taken this on despite the hatred she still has for him. 

The book follows the disease’s progression as Richard loses more and more control of his bodily functions. There is no sugar-coating, no glossing over the lurid details of the toll ALS takes on the body. Genova carefully documents the agonizing progression of symptoms. Even the mental struggle of Richard and Karina is beautifully characterized as they both struggle with their personal hurts and anguish over the situation they find themselves in. Forgiveness is something that is part of the inner conflict for both of them. The past sits heavily between them, but as his world crumbles, it’s just the two of them left to face the world together.

Genova’s book is powerful and impressive. It’s not an easy read and it certainly brings a greater understanding of this debilitating illness. Never again will readers not fully fathom what an ALS diagnosis entails. 
4.5*
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I've read several other books by Lisa Genova, and in all, she finds a way to not only spotlight drastic medical conditions but to show the human impact of people dealing with diagnosis and life-altering diseases.

In Every Note Played, she showcases the horror of a life irreparably changed by ALS. Using both Richard and Karina's perspectives, we're led through the stages of deterioration, each with its own sets of loss, frustration, humiliation, and increasing dependency. Truly, this is an eye-opening book in terms of what it feels like to lose ability and control, as well as what it feels like to be the witness to a process that can't be stopped.
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First time reading this author and I thought this book was great! I loved it. The book was beautifully written! Can not wait to read more of her book..
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