Cover Image: Every Note Played

Every Note Played

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Member Reviews

Every Note Played did not pack the emotional punch for me that other novels by Lisa Genova, but it was an immersing and realistic depiction of the struggles of living with ALS, or caring for someone with the disease. I found the animosity between the main characters a bit undeveloped - the back story that was presented didn't seem to justify the level of almost hate that they felt for each other, and it honestly didn't make a ton of sense when she elected to be his primary caregiver. But, the bones of the story were good, and I did thoroughly enjoy it overall.

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As a special education teacher and six weeks shy of completing my master's degree in special education, I loved the book. I think it painted a realistic picture not only of the debilitating disease, ALS, but the anger and other feelings that come with losing control of your body. Many people who never had control also struggle with these feelings. Richard's fast plummet into paralysis was sad yet realistic to anyone going through ALS or other diseases that leave its victims paralyzed, a shell of their past self.
I found some of the assistive technology mentioned fascinating like the HeadMouse. It's amazing how technology has been able to help make the lives of people easier than anything they may have experienced only a decade ago.
The feelings between Richard and Karina are so realistic for a divorced couple. The irony between the divorce and "death do us part" in this book is sad yet satisfying. Their growing relationship shows how sometimes life is so much more important than a divorce and Karina's love for Richard, even divorced is honorable and heartwarming. The hatred she feels for Richard is overcome with her compassion as a human being and she slowly learns to look past his flaws and begin to forgive and come to peace with where their lives have taken them. Her feelings of resentment are very understandable and I ended up feeling bad for all parties involved for all of the different reasons they're suffering.
Lisa Genova did a great job painting the hardships and disappointments of ALS and also painting a picture of relationships. The feelings involved were realistic and she did not set out to make our characters perfect just because of the disease. It was a great read  and very informative no matter if you were interested in the ALS portion or the character developments.
The many references to Stephen Hawking were surreal. They were important in understanding the disease if you were unfamiliar with it. It was surprising being that Stephen Hawking just died, clearly after the book was written but before it was published. It's a sad thought.
All in all, I loved it. It was inspiring, sad, and eye opening beautiful.

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Richard Evans loves music. He loves it so much that he chooses his career as a classical pianist over his family. Conflict reigns in his household, but it doesn't matter as long as he has access to his art...

We all know where this is heading. For Richard, diagnosed with ASL is equivalent to dropping dead. His music career is no more now that he cannot use his hands, and as he tackles with this life-threatening illness, and the heartbreak and despair that come with it, he encounters some important revelations, and must decide what's important in life.

"He can feel it coming, an invisible presence creeping, like ions charged and buzzing in the air before an approaching electrical storm, and all he can do is lie still and wait for it to pass through him."

This is not an easy read. Lisa Genova writes a beautiful and compelling story about passion and priorities, and how one blurs the other. More important, one should not outdo the other, especially with your marriage and children. The writing transports you, the message moves you, and the message -- while difficult -- is on point. If you're in the bargain for a literary novel with heart, I suggest you read this wonderful book. I give it five iced Cinnamon Almond Milk Macchiatos.

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This is the second book I have read of Lisa Genova's. The first was Still Alice, which I read twice and watched the movie. Both of these books share a first hand experience of living with a devastating disease.

In the book Every Note Played, Richard a concert pianist is diagnosed with ALS. The book shows how Richard has to live with the fast progressing disease and also how it effects his ex-wife Karina and his family. Every note played is not just about ALS it is also a story of a broken family struggling to get past the hurt and help each other through a very difficult time. When I started reading Every Note Played I thought I knew about ALS. But, thanks to Lisa Genova this book has taught me there is so much more to learn.

This book would make a great Book club selection and I hope to see it in a movie soon. I look forward to reading the other books by this author.

Thank you to Netgalley and the publisher for the opportunity to read this book for my honest review.

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hmm.

i had high hopes for this one, as high hopes as you can have for a book about ALS, knowing it will rip out your heart and stomp all over it.

I read Still Alice in 2015 and I've had other Lisa Genova books on my list since then, but seriously, my heart was still bruised from Still Alice. That book wrecked me. It was heartbreaking but so... I don't know, real, emotional, just got right in my soul, you know? So when I saw this on netgalley, I was like YES perfect, it's about time I got back in the Genova saddle, what better way than with a netgalley book I 'have' to read, and one where the hype or reviews won't get to me before I start it.

I mean, I still had high expectations based on loving Still Alice. I waited for when I was at home, with nothing to do, so I could bawl my eyes out and demand a hug when needed.

Except.. I didn't need a hug. I am a super sensitive emotional crybaby. So I cried, at the end. And I got emotional during the book when you can just feel the despair and hopelessness.

But other than that? It just did not get in my soul. I realise that sounds trite or ridiculous, but I just felt so disconnected from these characters, they were not likable or relatable to me. Of course, I feel like an ass saying a guy with ALS isn't likable, but I'm sorry, he wasn't. He didn't deserve ALS, no one does, fictional or not, but I just... didn't care.. no, that's wrong. It was sad, but I didn't feel like I was losing a family member, the way I felt when I read Still Alice. I didn't like any of the main characters except for Bill or Dr George.

Genova is a fantastic writer, but this one just felt a lot more detached, impersonal. I wanted to love it. I wanted it to destroy me, truly. I love a good emotional book. But this one was... I'm sorry, just not for me.

All that being said, I am more aware of ALS than ever before and I do appreciate that Genova wrote this book and shared what she shared. My review is based purely on my enjoyment of the book, which unfortunately was not where I wanted it to be.

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Richard is an accomplished concert pianist, he has gone around the world to play and has received lots of standing ovations. He is an amazing pianist and he knows it, he also knows that is best asset is his hands and he takes care of them a lot. He also spends most of his day practicing on the piano because to him to be this amazing and know how to play this well you have to keep practicing, practicing is everything. But everything has changed for Richard, he now has ALS and the first thing he lost was his entire right arm, the whole arm, including his hand and fingers is paralyzed. This first loss is like a death, a loss of true love. He is in denial first, he goes and sees all the medical doctors and all the ALS medical team that he needs to see, but it all goes in one ear and out the other. He knows the next thing to go will be his left arm and he can't even imagine how that will be like.



Then there is Karina, Karina is Richard's ex wife. They have been divorced for three years, she tells herself that she is ready to move on, but the truth is, she hasn't moved on. She is always finding excuses and she is afraid to go after her dream, so she's stuck been a piano teacher and blaming Richard for their failed marriage and all of it.



But when Richard becomes paralyzed and is longer able to live on his own, Karina becomes his caretaker. As Richard's muscles, voice and breath fade, both he and Karina try to find a way to reconcile their past and find a way to forgiveness.



One of the things that I loved about this book is that is told on both Richard and Karina's POV; to get to know what each of them are going through and what happened to them in the past and the reasons that got them to where they are now. Getting to know both POVs and know what Richard is feeling as to what he's going through is so inspiring and heart breaking at the same time, I cried and believe me it was multiple times. And yes there were times that I also got mad at him, why? Because, Richard was been brutally honest and for the first time in his life he realized that he did screw up a lot with his wife and daughter and we got to read about it. Don't think I also didn't get upset a Karina, yes I could totally understand her from the beginning but the more she opened up and the more honest she became we also got to see that she was at fault too. But I really think the main focus of the book was the ALS and how quick it can change someone's life, either you want it or not. And it will not only change the person going through it but also the caregiver and the family members too. It's heartbreaking and emotionally draining to just read a little about it, I give so much respect for all the medical team that are involved with those patients, also to all the families going through it, the caregivers and my heart goes out to all the patients.



Lisa Genova did such an amazing job writing this book, the story was inspiring, it touched the subject on such a respected way. Her writing is amazing, once you start reading you just cannot stop, the book becomes a page turner. Bow down to her...

Finally I only have to give this book 5 out of 5 stars and recommend it a million times. Please, please read it and recommend it.

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Lisa Genova has hit it out of the park AGAIN!!!! A wonderfully informative, sensitive and heartbreaking story of a concert pianist who learns he has aggressive ALS and the ex-wife who decides to take care of him throughout his illness. The family relationship that was splintered because of his infidelity and travel and the things left unsaid all play a part in this wonderful book. This is sure to be a bestseller!

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I had a hard time reading this book through the tears I was shedding. I think ALS is a terrible disease, It honestly took me no time to read this book because I did not want to put it down. It's a "medical drama" but it's super compelling. I hadn't ever read a book by this author before this one and I am so glad I found her. I have read other reviews that say most of her books are phenomenal and often tear-jerkers, so I'm going to keep her in mind when I need a nice tear-jerker book!

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Did not finish the book . unable to connect with the characters and chose not to finish the book.

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This was a difficult book to read. Not because Every Note Played was poorly written, but because Lisa Genova has done such a masterful job of portraying the anguish brought about by the debilitating Amyotrophic Lateral Sclerosis also know as Lou Gehrig’s Disease.

While ALS would devastate anyone of the population unfortunate enough to contract this fatal illness, how much worse for a world renowned concert pianist to watch his distinguished acclaim shattered as the muscles in his limp arms and hands are no longer able to respond to even simple commands, leaving the keys on his Steinway Grand gathering dust.

Richard’s career always took precedence over both his wife and daughter. Karina, also a gifted pianist, resented her assigned status as a second class talent when their move to Boston wiped out her plans to play jazz in New York City. After Grace came along, Karina found herself a stay-at-home mom, raising a daughter while giving a bunch of talentless kids piano lessons. As Richard’s reputation soared, resentment blossomed in his wife, inflamed by her husband’s gadding about, leaving his family to fend for themselves as he pursued his own passions – both on the stage and in his mistresses’ beds. Divorce was inevitable.

Left there this would just be another tale of two college students with common interests who fall in love, marry and start a family, torn apart by diverging, incompatible life goals leading to a bitter divorce. Yet what happens when a disease such as ALS knocks at ones door mummifying the body while keeping cognition intact? Denial is the first reaction as Richard refuses to ask for help and Karina fails to recognize the seriousness of the situation until it is almost too late. However, despite their differences, Karina finds herself the caretaker for a man she has hated most of her adult life. Richard, at the mercy of the woman he has hurt, doesn’t know how to ask for forgiveness, but has no where else to turn as his physical and financial assets dwindle. Genova, adept at exposing the underside of various crippling diseases through her novels, takes us through the process, step by step, watching the couple try to find peace in a situation which becomes increasingly grave.

Not for the squeamish, since the author does not sugar coat any of the details, often getting down and dirty as she describes the effects on both victims – the man with the disease and the caretaker. The reader who finishes this book does not leave unscathed.

Since Every Note Played was written two events have occurred – the death of 72 year old Stephen Hocking who chose to miraculously extend his life by using a ventilator and the approval by the FDA of a new drug Radicava, which in trials has slowed the decline of physical ailments by up to 33 percent. Like everything else connected with ALS, the cost of survival is beyond the means of most and it is unclear whether insurance companies will cover the monthly $1000 infusions. Still, a positive step forward for this catastrophic disorder which destroys indiscriminately.

Four stars and a thank you to Netgalley for providing this ARC in exchange for an honest review.

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There is an analogy in this book that talks of a racing car in the distance and then suddenly it is parked next to you. The car signifies ALS, but it also correlates to the ending of this book. You know what is going to happen, you can see it in the distance, and then suddenly there you are with Richard struggling for his last breath.

Narcissistic Richard Evans has played in the greatest music halls around the world and has admitted that he loved music, the standing ovations, and the adoration of his fans more than he loved his daughter Grace. That he made decisions for his family solely on what he wanted and in turn crushed his wife’s soul and alienated his daughter. When the weakness first began in his finger and then progress to his hand, his manager told the world that it was tendonitis yet the truth was much more devastating. Now having to come to terms with a withering body and an ex-wife that is his caregiver, Richard must confront the choices that he has made and the family that he has pushed aside so that he could live the life that he thought he deserved.

As Richard becomes trapped in his body, he must come to terms, and in his own way, travel the five stages of grief -- denial, anger, bargaining, depression and acceptance. It is with the final stage that he begins to repair the damage that he has created, and with it, regaining an honesty and peace though apology and forgiveness, that he had stubbornly denied those that needed it most.

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A world-renowned musician receives a devastating medical diagnosis. As his condition deteriorates his estranged ex-wife becomes his caretaker, and the two of them reflect on their relationship as everything comes to an end. Author Lisa Genova brings all her scientific knowledge to illuminate yet another mystifying disease in the informative yet unsatisfying novel Every Note Played.

Richard Evans knows how to enthrall a crowd. He’s done it for years, and the attention makes him preen. Piano fans all over the globe have listened to him play the most complicated pieces with flawlessness.

Of course, his personal life is far from flawless. After several years of resentment and neglect, his wife decides she’s had enough and they get a divorce. But that doesn’t really matter to Richard. Why does he need the attention of one woman when the entire world sits with bated breath at his feet?

Then comes the day when his fingers stop doing what he wants them to, and Richard goes to the doctor. He doesn’t have tendinitis or any other condition common to pianists. Richard has Lou Gehrig’s disease, known in the medical world as Amyotrophic Lateral Sclerosis‎, or ALS. Most research states he’ll die within five years.

Since the divorce, Karina has done what she can to live a normal life. She sits at a piano day after day trying to impart some love and appreciation for the instrument to kids who come for lessons. The majority of them plunk their way through those 30-minute sessions, torture for students and teacher both.

Karina despises Richard, no doubt about that. When she had the opportunity to take her own music career forward in a major way, he convinced her to move from New York City to Boston. The move benefitted Richard tenfold. It took Karina’s music away from her. It didn’t help that she started as a classical pianist like Richard and veered into the world of jazz, something Richard has sneered at time and again. No, she’s happy to have her space now that he’s gone.

Then she finds out about Richard’s diagnosis. Her initial attempts to offer her sympathy get rebuffed, but that doesn’t surprise her. What does surprise her is the day Richard calls, desperate after he falls and no one is around to help. Even though she would rather slam the cover of the piano keys over her own fingers repeatedly, Karina tells Richard he needs to move out of his Boston brownstone and back in with her.

As Richard’s disease progresses, the two find neutral ground. When Richard musters up the courage to tell Grace, their college-aged daughter, about his disease, Karina acts as mediator between the two. Whether she wants to forgive him or not for the utter carelessness he showed her during their marriage, Karina realizes she won’t have a choice. One way or the other, she will simply have to let Richard go.

Author Lisa Genova shows her command once again in tackling a neuroscientific disease. As with her other books, Genova takes the complicated issues surrounding the disease and presents them in laymen’s terms. If a person knows absolutely nothing about ALS before reading Every Note Played, they will be armed with a wealth of information by the end of the novel.

It’s truly a shame, then, that Genova’s detailed research and lively descriptions aren’t supported by characters worthy of either. Richard’s arrogance as a concert pianist may seem justified in the start of the book, but his arrogance never wavers. Even when he’s completely dependent on Karina for the simplest of tasks like wiping his chin, everything about his life revolves around what he thinks and wants.

As the wronged wife, Karina may deserve sympathy at first. At some point her willingness to let Richard push her around makes her character balance that fine edge between a dignified partner and a whiny victim. It’s hard to tell sometimes what role she wants to play.

Their daughter, Grace, figures into the book more as a placeholder. The story really revolves around Richard and Karina and their individual struggles. Even knowing they were previously married makes it difficult to imagine them as a unit. They don’t like one another at all, which may make it harder for readers to suspend their disbelief when Karina allows Richard to come back home for the duration of his life.

Fans of Genova’s work will definitely appreciate her careful detailing. For other readers, however, I suggest they Borrow Every Note Played.

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Lisa Genova has become one of my favorite writers! Her writing is amazing and the stories are so much more than a normal story. I really feel like I get an education with each book that I read of hers. The emotional side of Lisa's books are also amazing. I truly feel attached to the characters.
Every Note Played deals with ALS, so be prepared to have your heart broken. The story of Richard and Karina is ........well there are really no words to describe the perfect imperfections of these two!
Every Note Played is a beautiful story that must be read! With the lesson to live and love you will surely be moved by this amazing story.
I can not wait until Lisa Genova releases another must read!

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4.5 Stars!

This book is a short but powerful story.

Let me start off by saying, I didn't know much about ALS going into this book. I am fortunate that I haven't had any family or friends effected by this disease so I went in blind. After finishing this book I am now well educated on the effects (both phsyically, emotionally and mentally) this has on both the person who has ALS and people around them.

We meet Richard who is an accomplished Pianist. He travels all over the world and is one of the best out here. We then Meet Karina who is Richard's ex wife. They fell in love in college over music (they both play piano) and both have extreme talent. They have one daughter together, Grace, who is in college. Karina and Grace live on their own and Richard lives on his own. Unfortunately Richard was never close to either of them due to some past experiences in his own childhood.

We find out that Richard has been diagnosed with ALS, however since he alienated a lot of people in his life and chose Piano over them, he doesn't have anyone to go to. Karina learns of his diagnosis but has so much hate towards Richard that she has as tough time feeling sympathy. Grace is also feeling the same way after not having a relationship with her father.

This book had me all over the place with my emotions. At first I was thinking wow Richard is a real jerk and Karina really needs some help to get over their relationship. But then you start to see the rawness that plays out within the books events. The family has to find a way to come together over this horrible disease. It raises the questions of How do we find forgiveness? Is this my burden to bare? Can you hate someone but also love them? and ultimately, When will be too late?

Needless to say by the end of this book I was a crying mess. ALS is truly a devastating disease and I wish it on no one. The choices and things this family had to give up to support one another was incredible and I'm sure not everyone who has ALS gets that chance.

My hats off to the Author, Lisa Genova, for this powerful tale. I would recommend this to anyone. Just be ready to shed some tears.

Thank you to Netgalley and Gallery Books/Scout Press for an ARC of this book.

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5 educational and emotionally resonant stars to Every Note Played, my first Lisa Genova novel! 🌟 🌟 🌟 🌟 🌟

I cannot imagine this book being anymore 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.

Thank you to Lisa Genova, Gallery/Scout Press, and Netgalley for the copy.

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I received this book for free from Netgalley. That did not influence my review.

Lisa Genova’s new release, Every Note Played, is a gritty, realistic, and yet beautiful novel following the physical decline and emotional growth of a man dying from ALS. This is the first book I’ve read by this author, but I can understand why she is so widely read.

Richard Evans is a brilliant classical pianist, whose career comes crashing to a halt when he is diagnosed with ALS. Cruelly, the disease has attacked his hands first, robbing him not only of his life’s work, but of the very core of his identity. A year earlier, his marriage ended and this crisis has made him aware of how very alone he is.

Karina is the wife who divorced him. An exceptionally talented pianist in her own right, she has sacrificed her career to support his, devoting her time to bringing up their daughter. She teaches piano to ungifted, uninterested suburban students. Still mired in resentment– Richard cheated on her repeatedly as well as tearing her away from her promising start as a jazz pianist–Karina thought she would be reborn after the divorce, but instead is stuck. Their daughter is now in college and her ex-husband has moved out. No one is holding her back anymore and she has nowhere to place blame for her dissatisfaction.

Both believe the love they once shared is dead and buried. Responsibility for the failed marriage falls to both parties, but neither can relinquish old grudges. This is emotionally entangling enough, even without the addition of the slowly progressive, deadly disease. But the disease is what the story hinges upon.

Richard becomes increasingly physically dependent and Karina takes him home to be his support person.

The plot revolves around the progression of the disease. The novel is well-researched and graphic in its medical details. It’s heartbreaking and painful to read. Realistically, there can be no happy ending. And yet, there is healing of a sort for these broken people. The reader journeys through the process with Richard and Karina, engrossed.

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I have read all of Lisa Genova's books so I was happy to receive her new book as an ARC. This is much like many of her other books in that the main character has a disease or some sort of issue and the story shows how that is affecting the character, their life and their family. In this book, Richard is diagnosed with ALS. He is a concert pianist and is slow to believe what is happening to his body. Eventually he is forced to move back in with his ex-wife. They have all sorts of issues to work through while dealing with his new reality. Overall, I really enjoyed the book, however, somehow it seemed that the book dwelled more of the disease and I wished for a bit more story. I would give it a 3.5 stars but rounded it up to 4 stars.

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Richard Evans is a man on top of the world. He is a concert pianist that plays with raw emotion and incredible technique. To Richard playing the piano is breathing, it's life. He gave up so much to live this life of fame but suddenly he is feeling regret. His playing is perfection but his heart is starting to not be in it. His mind drifts elsewhere instead of getting lost in the music that his fingers are producing. Something is wrong. Audiences jump to their feet after his solo performances at some of the top concert halls in the world. He is loved by his fans and yet loved by no one all at the same time.

His current tour is suddenly cancelled. His agent is telling everyone that Richard has tendonitis, a common ailment that most pianists battle at some point or another in their career. Richard is trying to tell himself that as well, hoping that if he avoids the truth that the truth will magically change. Richard has been diagnosed with ALS.

Other than his adoring fans he has no one. Him and his wife Karina have been divorced for three years and have a searing hatred for one another, and their daughter Grace, who is in college, refuses to speak to him, taking her mom's side on everything. He's only had one other serious relationship that ended right before his diagnosis, the rest were just meaningless flings. He is estranged from his dad and two older brothers, and his mother passed away right before Richard turned 19, his only ally in the family.

The doctor's tell him to get prepared, no one knowing just how rapidly Richard will deteriorate, but where does he turn? Who can help him? He holds out as long as he can, losing both of his arms to ALS and relying on home health aids before anyone knows the severity of what is going on. He is completely alone in his empty apartment with his thoughts, in mourning, losing the love of his life. Playing the piano was his air, his life, his love, his everything. Without his ability to play, what does he really have?

A chance phone call brings him and his ex-wife Karina back together and a choice is made that she will bring him home and take care of him for as long as it takes, her too having to battle the raw emotions of being an ALS caretaker as well as dealing with her feelings about her ex-husband and their past together.

Every Note Played is a beautifully heartbreaking story that will stick with you long after you read the final page. Told predominantly from Richard's perspective, you glimpse into the life of someone that has to endure this scary disease, and get into the mind of someone that has to deal with slowly losing their life, as well as glimpses from Karina's perspective, dealing with her ex-husband and the painful memories that go along with that, as well as being a caretaker to someone with ALS.

To imagine that so many people in our country have to brave this painful disease on a daily basis leaves me speechless. My prayers are with anyone that has been affected by this illness. Before reading Every Note Played I knew little about ALS but now I feel informed and am in awe of how Lisa Genova, being a neuroscientist herself, can paint such a vivid picture of ALS through the eyes of the diseased. You feel heartbreak not only for that person but everyone involved, see the cleansing of forgiveness, and personal freedom in several forms.

I truly believe that everyone should read Every Note Played. There is adult language as well as mild sexual content for those that are sensitive to those aspects but given the situation I believe it goes with the territory. We all need to be aware of this disease and do our part to help find a cure. Please to go ALSOne.org to find out how you can help find better treatment options or a cure for ALS.

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Lisa Genova writes novels about severe illnesses as an attempt to raise awareness and funds for research of them. I read Inside the O'Briens, about Hungtington's, and have seen the film based on Still Alice, which is about early-onset Alzheimers (and consequently gave my husband and I both more nightmares than we have ever had from any horror movie.) I hadn't quite made the connection to her previous work when I requested a galley of this novel; I was more focused on the classical pianist angle.

Richard is an acclaimed pianist. He is also recently divorced, a messy one, after his infidelities and some other secrets that were hidden. His wife and daughter are not in his life, his daughter having chosen her mother over her father, who often chose piano or his flings over time with her.

But as he is preparing for a tour, his fingers stop responding the way he expects and he is diagnosed with ALS. Eventually he has to figure out who in his family can help him as he loses the ability to care for himself.

This is a timely read with the very recent passing of Stephen Hawking, who lived far longer with ALS than most people do. Most people have the sentence of 3-5 years once they are diagnosed, and much of those years depends on which kind of treatment they get, or more accurately, which kinds of treatment they can afford. Since this is set in the United States, and Richard is limited to the insurance he purchased himself as a fairly healthy self-employed pianist, his insurance doesn't cover his expensive wheelchair, and certainly not the 24/7 care he would have required if he had elected to have the surgery that would have ended up with machines breathing for him. He could have had that surgery, but the rest of his body would still have deteriorated. There is no cure for ALS.

All to say that this presents some difficult decisions, and harder because by the time they are past denial in dealing with the disease, he has already lost much of his ability to communicate. No cure, no insurance coverage - these facts sometimes force a decision that may not be the best, but the options are pretty limited.

This is not a cheery read! It reminds me in some ways of the cancer novels I used to read as a pre-teen although I do think the author has a nobler goal, in raising money. I feel like some of the ending was less realistic, with many of the relationships coming to resolution. Not everyone gets to do that, whether they understand they are dying or not.

Another book about ALS that I read in the last few years is Home is Burning by Dan Marshall. It is a memoir, from the perspective of the son of someone with ALS, as he moves home to help his father as his body starts to go downhill. This novel shows more of the internal emotional struggle (and external physical struggle) of the person with the diagnosis, which I felt made for a richer read.

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Richard owns the world. He is a renowned pianist; booking sold old concerts all over the world. He’s a man-about-town, a most-wanted bachelor, and rarely sleeps alone after each of his outrageously perfect concerts. He’s divorced with one daughter, has a dad and brothers who always laughed at him for playing piano, and he works tirelessly to prevent that baggage from slowing him down in his ambitions and quests.
Without warning, Richard can’t control his hand. Richard has ALS and is terribly, sadly alone.
Karina had a great shot at jazz; she was a natural and in her element. Until her then-husband, Richard insisted they move in order to further his own career. She never found a jazz niche in New York. It simply didn’t exist. As their daughter, Grace grew; Karina’s career and desires fell by the wayside while Richard’s career took off. Karina, in her anger and determination to keep one personal desire to herself, the desire to have no more children, lies to Richard until they’re finally divorced and free of one another.
How do these two people, each with so much pride, guilt and deep-rooted anger, end up together three years after their divorce when Richard needs help so badly? These undertones of human error and forgiveness are overshadowed by the cruel, relentless and uncompassionate symptoms of ALS. Each day, each hour is a new loss, each remaining ability, simple motor skills, such as breathing, swallowing, talking, become a cherished function that is on its way out.
So sets the stage for Every Note Played. It’s a realistic glimpse into the lives of one family affected by the disease with no cure. As Richard’s health fails, Karin and Grace’s ability for compassion and forgiveness strengthens.
The author, Lisa Genova, is an amazingly accomplished person. I respect her tremendously and am always eager to read her works. Her personal history and education are so impressive, and her compassion that comes thru in her writing is sobering. She accomplished that with Still Alice and has opened my eyes to the slow, steady decline of ALS with this new novel.
Ms. Genova’s notes from the author at the end of the book really add such a personal touch to her writing. She is sincere. This comes thru so strongly in her characters. Although it is a sobering subject, I thoroughly enjoyed reading this book. It reveals so much about the disease, compassion, forgiveness and basic humanity.
(I received an advance copy of this book from NetGalley in exchange for an unbiased review. Thank you to Gallery / Scout Press and NetGalley for making it available.)

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