A once accomplished concert pianist, Richard now has ALS. As he 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. This is a masterful exploration of redemption and what it means to find peace inside of forgiveness.--Amazon.com.
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, and 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.”
The author did a BRILLIANT job with Richard. I hated him at first but when his body starts to fail him, he changes in so many ways. Karina is not a saint either. She does help him when he needs her the most. But, she cannot let go of the damage he already caused.
The tragedy of a life unfinished, the tragedy of family and marriage, the tragedy of this disease are just a few areas touched on in this book. This is about past hurts, past regrets, and lost dreams. This is a roller coaster ride of feelings! Don’t miss it!
I received this novel from Netgalley for a honest review.
This is a book that I was not able to put down. It is wonderfully written and painfully real. Have your tissues ready, because you are going to need them.
My thanks to netgalley and Gallery/Scout Press for this advanced readers copy.
I've read nearly all of Lisa Genova's novels and she never ceases to amaze me. She has a Ph.D. in Neuroscience and uses that knowledge to write wonderful books that entertain and educate us about neurological diseases and disorders. This novel tackles ALS which is also known as Lou Gehrig's disease. It's a devastating, debilitating disease that gradually takes away all muscle control in the body.
Ms. Genova is a talented fiction novelist and includes interesting characters and plots. Her characters are always well-developed, the pacing is perfect and even though there is not a lot of action, the interest is always there as we learn about the disease. I knew next to nothing about ALS but now I understand just how ravaging this disease can be. It not only destroys the victims but affects all those who are near and dear to them because of the extensive care needed.
This novel is heart-wrenching and just plain sad but Ms. Genova's storytelling is very skillful and you find yourself wanting to find out more as the disease progresses. I give it 5 tearful stars.
Of course, it does continue to get worse. When Kathy visits him, in spite of their contentious relationship, she sees that he is incapable of taking care of himself living in his fourth floor walkup. Reluctantly, she invites him to move back home, where she can care for him.
In addition to being a wonderful author, Genova has a Ph.D. in neuroscience from Harvard. Because of this, and because she spoke with a number of people with ALS, she is able to describe in great detail what it’s like to live with the disease.
I personally have been in a situation where after waking up from being in a coma for two and half weeks, I had extreme muscle atrophy and could not move my arms or legs. I was also on a vent with a trach and could not speak. I think Genova perfectly captured what it’s like to be a prisoner in your own body – both the fear and frustration. Luckily, unlike Richard, I made a full recovery. Unfortunately, there is no cure for ALS.
I think this book would make an excellent book club selection. Discussion points could include whether or not you would be able to make the sacrifices Kathy made to care for Richard for someone you didn’t really like. There is also much to talk about surrounding the ending. I won’t spoil it for you though. Lastly, Kathy kept a big secret from Richard during their marriage that members could give their thoughts on.
Lisa Genova has become one of my favorite authors and Every Note Played did not disappoint. It’s the only book that has ever made me cry! Highly recommended.
Through this book, I learned a lot more about this dreadful disease and the ways that it takes over your body and what will eventually happen to you. Although the time frame is different for all who have the disease.
This book tells it all through a story about a very egotistical classical pianist who has enjoyed the fortune and fame of being famous. It has definitely gone to his head. All he can think about is himself, music, his piano and other women. He leaves his family, including his daughter, who he has left right alongside his wife.
An eye opening, very sad story about ALS, divorce and family.
I recall my first tear while reading this book. It was near the beginning of the book, when the pianist discovered his plight. This one phrase "Could that be the last embrace of his life?" really hit me hard.
Thanks to Gallery, Threshold and Pocket Books and Net Galley for providing me with a free e-galley in exchange for an honest, unbiased review.
This is a brilliant book about a devastating illness. It is about relationships that sometimes grow destructive and about the effort to move beyond that pain and suffering. It is about the healing or inability to heal, emotionally and physically, of all those involved.
When the book begins, the reader learns that Richard, a celebrated concert pianist, and Karina, a piano teacher, are divorced. They have one child, Grace, who is in her first year of college. Her relationship with her father, however, has been non-existent for more than a year since her devotion lies on the side of her mother when it comes to the reasons that ended their marriage.
When Karina discovers that her ex-husband, Richard, has cancelled his concert tour, at first she believes it is a publicity stunt. Richard is a self-important man, however, she visits him and learns that he is indeed suffering from a very debilitating illness which has robbed him of his ability to play the piano and will slowly deprive him of all his bodily functions, although his mind will remain alert until his inevitable death. Who will tell Grace?
Perhaps because the author is in the medical field, she was able to write a clinical, descriptive narrative that will take the reader into the characters’ lives as they work through this dreadful news. She has managed to draw a picture of the gradual degradation of this illness and at the same time to create a love story which illustrates great courage and endurance, devotion and loyalty. The characters will rise to the occasion as the occasion warrants as all different types of relationships are explored and examined minutely. The book not only describes the involuntary breakdown of the body, it also illuminates the way couples voluntarily cause the breakdown of their own relationships with secrets and lies. The need to be right overtakes the need to do what is right. As the characters relate to each other, sibling to sibling, husband to wife, parent to child, doctor to patient, a wide variety of emotions and reactions are illustrated.
Although both Richard and Karina profess to hate each other, his enormous need and the lack of finances to engage full time care, forces them back together again. Karina volunteers to care for him and becomes his major caregiver. It is often a thankless, time consuming, emotionally draining and physically exhausting job, a job that is not pretty. As Richard’s disease advances, and as he grows more and more paralyzed, Karina is required to maintain his body and his appearance in all its phases of failure. Richard, on the other hand, has little to do, but he has much time to think. He begins to realize what he has given up by living the life of a rogue, cheating and traveling and neglecting his family, always putting his own needs first. Karina realizes that he was not completely in the wrong, and that she bears a great share of the burden of guilt. She was not honest with him and betrayed him in serious ways. However, she did give up her career as a jazz pianist, for his career, moving to Boston from New York City for him. He has played piano for audiences on many of the great stages of the world, and so her resentment and anger grew steadily as years passed and she no longer followed her own dream.
As the author traces the awful decline of Richard’s body, while his mind remains always alert, she makes the reader bear witness to the steady erosion of his independence and arrogance. With the loss of mobility, he rethinks his past decisions and the accomplishments and shortcomings of his brief life, although he is unable to verbalize these thoughts. He reminisces about his life with his mother and his siblings and with the father who rejected him for not being manly enough. Karina, a Polish immigrant, rethinks her deceptions and realizes her guilt. She remembers her mother. She knows that she has been cruel, pretending that she was unable to have more children, but she hoped to have her own career someday, and wanted to stop sacrificing her future for his. Now that he no longer has a future, she realizes that she used her resentment and anger as an excuse. In reality, it was her flight from success, not Richard’s race toward success that caused her to make her decisions.
I am not sure that this book is for everyone. It is painful to read, actually, it is a tear-jerker of the first order. Still, I am glad I read it because the author did an excellent job of illustrating what a family goes through when faced with devastating illness in the real world, medically, financially and emotionally. Options are not always available and the hardship is massive. For me, the book was particularly difficult since like one of the men who wrote and directed “Still Alice”, Richard Glatzer, my very dear friend suffered and died from Bulbar ALS, which begins in the neck and throat. Watching her decline and losing her great friendship was difficult for me, but of course, was far more difficult for her. Although she was brave and refused to allow anyone to even discuss the fact that she was ill, as the disease progressed, there was no way to escape from it. I missed the sound of her voice and her easy camaraderie. I thought about the time when she was well, and we would meet at 6AM to walk and talk before she went to work. Bulbar ALS is cruel, and it robs the victim of voice and communication first; our conversations soon stopped. We did email as long as she was able, but soon, even that was impossible and my only contact was with her children who would describe her decline and her anxiety.
Another emotional moment for me, in the book, was the mention of the musical piece, Fur Elise, a favorite of Richard’s. I always loved that piece and another dear friend, from early childhood, who was robbed of life early, always played it for me. So I cried a lot during the reading, and others will surely also identify with many of the emotions exposed. Also, though, as I did, I think readers will begin to better understand the courage and suffering of the victims and the enormous sacrifice of the caregivers. Keep tissues handy when you read this novel, but it is well worth the stress and distress you will experience.
This stunning, raw, heartbreaking glimpse into the world of ALS from Lisa Genova will leave you emotionally spent and in awe of those living with this cruel disease, and in awe of their loved ones and the real-life superheroes that are their caregivers.
Richard is a renowned pianist that sells out concerts all over the world, a fine-tuned instrument that executes his performances with precision and passion. Fast forward eight months—Richard has been diagnosed with ALS and no longer has the use of his right arm. The loss of his hand is like the loss of a true love, like his own divorce from Karina. It is only a matter of time before it is his left hand, and the rest of his body.
Karina hasn't moved on from her divorce from Richard, in fact she is stuck in limbo in an unfulfilling life as a piano teacher. It is easy for her to blame Richard for where she has ended up and for the dissolution of the marriage.
When the disease progresses to the point that Richard is fully paralyzed, Karina reluctantly steps in to care for him. He moves back in with Karina, in the home that they once shared with their daughter, Grace, who is away at university. As Richard becomes a shell of a man he once was, the couple is forced to face their regrets head on and learn what it means to forgive.
What I love about Genova's books is her ability to educate her reader, not only in matters of the heart and relationships, but about actual neurological diseases and conditions that most would not be familiar with unless they were affected personally. She doesn't "dumb-it-down", instead she elevates her reader and empowers them with knowledge. It is this knowledge that makes her stories rich, not only in information, but in character development, yet doesn't bog down the narrative. Her writing is poignant, sharp, and captivating. Lisa, congratulations on this book, and your continued success—it is always a pleasure to read and review your work.
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.
Richard is a world class pianist - he lives to play. He's also a father and an an ex-husband - both roles he is/was not so successful at. But then Richard starts having problems with his hand - and his arm. And then the diagnosis - ALS (Amyotrophic Lateral Sclerosis) - a disease that paralyzes the diagnosed - and there is no cure. With no one else to turn to and limited finances, Richard asks his ex-wife Karina to tend to him. She reluctantly agrees.
Genova's exploration of love, loss, grief and ultimately forgiveness and redemption is so gut wrenchingly good. We are privy to both Richard and Karine's thoughts as they navigate this new uncomfortable reality while trying to make peace with what has come before - before it's too late.
Genova is a neuroscientist. Her descriptions of the progression of Richard's ALS are graphic, real and hard to read. Hard to read as I had tears in my eyes multiple times. I was aware of this devastating disease, but learned much through this book.
I chose to listen to Every Note Played. Some books are even better as an audiobook. This was the case with Every Note Played. The narrators were absolutely perfect. Dennis Boutsikaris 's voice is expressive, capturing the range of emotions that Richard is experiencing. His enunciation is clear and his voice is pleasant to listen to. He changes his delivery as Richard's disease progresses. Dagmara Dominczyk's voice is quietly measured, not rushed and very much suits the character of Karina.
Genova's words are powerful, her characters authentic, and her premise relevant to everyone's life in so many ways. Absolutely recommended.
Then there is the story of the victims of ALS. This is a tragically hard story that rips you apart as you wonder if life is worth living without the use of your hands, your legs, your feet. Is life worth living when your body becomes a prison over which you have no control but your mind is alert, active and aware that this is the best you can expect. The worst is so horrible that it is better to look away.
The ultimate story is breathtaking in its brevity and excruciating in its description. By acknowledging the gift of life in exchange for the loss of another Lisa Genova brings into focus not only what the victims of ALS suffer but the terrible toll it takes on family care givers. This is a story about a ferocious disease told by an insightful, skilled author.
Thank you NetGalley and Gallery/Scout Press for a copy
His former wife, Karina, is also a very talented pianist, who deferred to Richard's career rather than pursuing her own. Their marriage ends in an acrimonious exchanges of transgressions they each had against each other. Karina demonstrates enormous compassion and generosity of spirit as she becomes his primary care taker in her home.
ALS is a relentlessly cruel disease, and Genova charts Richard's decline in heartbreaking detail. This is a book that will be long remembered by anyone who reads it.
I spent most of the time reading this book inwardly screaming at these two to voice their thoughts to each other; to heal the rifts that developed over the course of their lives together, to finally say all the things they never had the courage to tell each other; to apologize.
I finished the book with tears streaming down my cheeks, far more knowledgeable about the ramifications of this terrible disease and motivated to heal my own relationships before, heaven forbid, something happens and it's too late.
Cue up Schumann's Fantasie in C Major, Op. 17. Not a piece easily navigated on the ivories - requiring superlative technique, heart and confidence. Genova was brilliant in the choosing of her protagonist, Richard, an arrogant, self-absorbed, cocky and an incredibly talented concert pianist. He's played all the famous halls and with all the great orchestras around the world. That is until his right hand becomes too weak to navigate the repertoire. Perhaps it's merely a touch of tendonitis. Sadly, it's far worse. It's ALS, what we often hear called, "Lou Gehrig's Disease". Had he been purely an academic, he could have continued for some time sharing with the world what existed in his mind. But no, he had lived and breathed through his hands as they caressed the keys of his grand piano coaxing her exquisite voice from her sonorous strings and sharing in musical ecstasy. Now his hands and arms are paralyzed and he is divorced from his ebony mistress. She sits idle by the window of his Comm. Ave condo never to be stroked by his deft hands again.
Time marches on and Richard becomes increasingly diminished by this insidious disease. At a particularly low and debilitating moment he mistakenly calls his ex-wife (and equally gifted pianist), Karina. She's close by and heads on over to help him. She is affronted by how far his illness had progressed in such a short time. There's no question, he cannot continue living as he has with just a few home health care aides. Karina suggests that he move back home with her. Perhaps it was through some element of guilt or even compassion for the father of her college-aged child. Richard and Karina have much history from shared joy to deep regret. Will they be able to forgive and reconcile with one another before it's too late. Theirs is a tremendous story of love, resentment, loss, agony, redemption and forgiveness.
Through a very well written fictional story, author Lisa Genova educates the reader on the various stages of and technical hardware needed for getting through life with an ALS diagnosis. It is a horrific disease about which few know much. That is unless they work with ALS patients, have ALS or care for someone with ALS. There is no cure as of yet. To exist with it is to have a mind imprisoned in an atrophying body. Kudos to Genova for bringing this disease to light and encouraging people to pick up the gauntlet and support those struggling with the disease and find a cure to make it a distant memory for future generations.
I am grateful to author Lisa Genova, publisher Simon and Schuster and Goodreads First Reads for having provided a free advance reader's edition of this book. Their generosity, however, did not influence this review - the words of which are mine alone.
Synopsis (from uncorrected proof's back cover):
From Lisa Genova, neuroscientist and the New York Times bestselling author of Still Alice, comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.
An accomplished concert pianist, Richard, received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.
Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.
He knows his left arm will go next.
Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.
When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.
Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.
Karina is also a talented pianist and still, in many ways resents Richard for the affairs, for not appreciating her desire to become a jazz pianist, for moving them from New York with its strong jazz community where she was beginning to get a name for herself, to Boston where jazz has never developed much of a following. When she hears from old acquaintances about Richard's condition, she decides to visit him. Although shocked by the changes in him, she is determined not to get involved with his care but, as his condition deteriorates, she decides that he should move back with her so she can care for him. His care requires more and more of her time and, not surprisingly, she begins to feel resentment both towards him and even herself for taking this on. But, as he becomes more dependent on her and outside care and with the aid of one of his caregivers, she begins to reassess their relationship. She realizes that blame for their divorce was not all one-sided and starts to understand that she chose to make many of the sacrifices she had made throughout the marriage.
Every Note Played by author Lisa Genova is a beautifully written and heartbreaking story about the terrible cruelty of diseases like ALS as they rob their victims not only of their health but of their dignity while leaving the mind fully intact and aware of what is happening so that, by the end, death is a welcome relief. It also shows the difficulties, hardships, and sense of guilt at the inevitable feelings of resentment it places on family members who are forced into the role of caregivers and the necessity for empathetic and professional aid to help them. By making Richard and Karina both complex characters, both imperfect, with flaws, regrets, and resentments as well as moments of clarity, kindness, and, in the end, forgiveness, Genova makes the book even more poignant, heartrending, but also relatable.
Every Note Played is not an easy book to read - it could even be described as painful as the reader accompanies Richard and Karina through the tragedy of ALS - but it is also a very well-written and compelling story as well as a very informative book not only about ALS but the physical and psychological trauma experienced by both the sufferers and their caregivers. This is the kind of story that stays with you long after you have finished reading it and I cannot recommend it highly enough.
Thanks to Netgalley and Simon & Schuster Canada for the opportunity to read this book in exchange for an honest review
Sadly, I never emotionally connected with Richard or his estranged wife, Karina, who became his full-time carer. Neither were very likeable and both were full of bitterness and resentment over their broken relationship. Richard, especially, was arrogant and self-centered, and willingly gave up on his marriage and daughter to follow his first love, classical music. However, Karina was not without fault, refusing to give Richard the large family he always wanted. Personally, my favourite character was Bill, Richard's home-help aide. He brought warmth and humour to the story, treated Richard with dignity at all times and gave support and advice to Karina.
"Every Note Played" educates the reader about ASL, showing both the physical decline and the emotional one as well, it also focuses on relationships, guilt, loss and forgiveness. One of the highlights, for me, was all the musical references throughout the story which I loved. I also thought the ending was touching. A touching read.
Playing the piano has been the one thing Richard has loved and excelled at his whole life. When this disease hits, suddenly he can’t do that anymore. “He picks up his lifeless hand to play the piano and can’t and realizes that “this is the cruelest moment of his life.”
“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?”
Richard’s ex-wife Karina surprisingly ends up being Richard’s caretaker when he begins to lose control and movement of his body. The couple had an ugly divorce and have not spoken in a long time.
Karina has lived all these years blaming Richard for the life of a successful pianist that she did not have for herself. She was cheated out of her life’s dream in order for Richard to achieve his. She used to be fearless but she has become afraid. “The fear of her certain and overwhelming inadequacy locks her life’s greatest wish in a box.”
Can Richard’s ALS provide them a way to make amends and finally forgive each other?
As the disease continues to deteriorate his body, Richard tries to come to terms with the life he has lived. He realizes that “he didn’t live the life he intended and there’s no way to do it over.” “He promised himself as a young man that he’d be a better father to his children than his father was to him.” He struggles to try to repair the damage he has to done to his relationship with his daughter, Grace. He always put his career before his family and now the regret weighs heavy on his heart.
He still struggles with the relationship he never had with his own father and the disappointment his father always felt in him. His father never accepted him and he has lived his whole life with “silent wounds stored in his deepest, darkest core.” He still longs for his father’s love and approval.
As the book ends, Karina realizes that “She’s been wearing a mask. She’s been hiding, an imposter, unable to give herself permission to play jazz, to be who she is, shackled inside a prison of blame and excuses.” So perhaps something good may come from Richard’s illness after all?
“Every note played is a life and death.”