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Every Note Played
Every Note Played
Every Note Played
Ebook301 pages4 hours

Every Note Played

Rating: 4 out of 5 stars

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About this ebook

“Unsparing in her depiction of the disease’s harrowing effects, neuroscientist Genova also celebrates humanity.” —People

“Sometimes it’s easier to tell truth in fiction…And she tells it with heart and hope.” NPR

“Her juxtaposition of scientific detail with compassionate, heartfelt storytelling is unparalleled.” Bookreporter

Every Note Played will grip and gut you.”The Boston Globe

From neuroscientist and New York Times bestselling author of Still Alice comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.

Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.

He knows his left arm will go next.

Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.

When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.

Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.

Editor's Note

Tragic & touching…

Both tragic and touching, the latest from Lisa Genova (“Still Alice”) imagines the physical and emotional ramifications of a degenerative disease by exploring the regret, forgiveness, and guilt that come along with it.

LanguageEnglish
Release dateMar 20, 2018
ISBN9781476717821
Author

Lisa Genova

Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa Genova is the New York Times bestselling author of Still Alice, Left Neglected, Love Anthony, Inside the O’Briens, and Remember. Still Alice was adapted into an Oscar-winning film starring Julianne Moore, Alec Baldwin, and Kristen Stewart. Lisa graduated valedictorian from Bates College with a degree in biopsychology and holds a PhD in neuroscience from Harvard University. She travels worldwide speaking about the neurological diseases she writes about and has appeared on The Dr. Oz Show, Today, PBS NewsHour, CNN, and NPR. Her TED talk, What You Can Do To Prevent Alzheimer's, has been viewed over 2 million times.  

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Reviews for Every Note Played

Rating: 4.219435659561129 out of 5 stars
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  • Rating: 4 out of 5 stars
    4/5
    The focus of this book is Richard, who is arrogant, self-absorbed and a very accomplished concert pianist. He receives devastating news of his ALS diagnosis, and begins to examine the mistakes he has made as a husband to Karina and father to their only child, Grace, as his body slowly deteriorates.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.
  • Rating: 4 out of 5 stars
    4/5
    Wow! What a compelling yet heart-breaking read - ike moths drawn to a flame.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.
  • Rating: 5 out of 5 stars
    5/5
    This is a powerful fictional story if what it is like to have ALS or Amyotrophic lateral sclerosis, a progressive neurodegenerative disease. Lisa Genova starts with a divorced couple who already have the secrets that they are holding and both are yearning for forgiveness for what caused their divorce yet they do not know how to be open with each other, release their anger and let go of their negative feelings, Richard is a famous concert pianist and Katrina is his Polish immigrant ex-wife. Katerina now teaches piano but she has sacrificed her dream of being a jazz pianist. They have a daughter, Grace who is in college and always felt the piano meant more to Richard than his daughter. This is a very emotional story already but then Richard notices that one of his thumbs is twitching. There are spasms going through his body. He learns later that his muscles are dying. He learn ALS has started. For a while he thinks to himself that this paralysis and wasting away of his muscles will stop but it never does.The author talked to patients, researchers, friends who had it and reates to the listener the fullest as possible the torture and pain of living with this horrific disease.Everyone needs to read this book to understand this terrible disease.
  • Rating: 4 out of 5 stars
    4/5
    Wow, this is brutal.
  • Rating: 5 out of 5 stars
    5/5
    One of the main characters is a classical concert pianist who has ALS - Lou Gehrig's disease. He is cared for by the other main character, his ex-wife (and mother of their college-age daughter) who was a pianist in her own right, although she preferred jazz. Excellent book. Lisa Genova has become a master at demonstrating the awful effects of some incurable conditions on the lives of the victim and their families.
  • Rating: 4 out of 5 stars
    4/5
    What a sad story. All stories about ALS are sad. What a cruel and merciless disease. Richard is a divorced concert pianist who get ALS in his late forties. He´s quite alone with no one to take care of him in his last days. His ex-wife steps up and becomes his caregiver. The author describes quite well the anguish and dispair of the ALS patient and the exaustion of the caregiver. I read this book because I have a friend that is dying of ALS and I felt this book would give me the perspective of the disease from the patients point of vue. I only gave this 4stars because I felt so sad and disheartened while reading the book. The author was successful in conveying the pain and hoplessmess of the ALS patient.
  • Rating: 4 out of 5 stars
    4/5
    Very moving.
  • Rating: 5 out of 5 stars
    5/5
    Another great book by Lisa Genova, who transports the reader inside the realities of a failing body and a complicated and broken marriage. This was a heartbreaking but life affirming read about ALS, love and life. I could not stop reading until I finished. Highly recommended.
  • Rating: 5 out of 5 stars
    5/5
    Lisa Genova writes the most brilliant stories. Her latest book, Every Note Played, is one of her best.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.
  • Rating: 4 out of 5 stars
    4/5
    Excellent book. Well done on death and choices. The good and bad of remaining cognitively intact with a body that fails.
  • Rating: 5 out of 5 stars
    5/5
    Thank you to Simon & Schuster Canada, Gallery/Scout Press and NetGalley for providing me with an e-galley of Every Note Played by Lisa Genova in exchange for an honest review. This is the third novel, written by Lisa Genova, that I have read. She does not disappoint. With Every Note Played, the author of Still Alice and Left Neglected puts the reader inside the body and mind of a concert pianist stricken with ALS. Richard's talent has brought him devoted audiences from all over the world. Until the diagnosis of ALS. He is divorced from Karina due to lack of communication and his cheating with other women. It soon becomes evident that Richard cannot manage his illness while living alone and Karina moves him back to the family home that he left years before. What shines in this novel is the way the author presents this illness in such a sympathetic and detailed way. You will find yourself holding your breath when Richard has difficulty breathing and you will also experience the disease through Karina's eyes. This is not just the account of an illness. It is the story of a man and a woman. Highly recommended.
  • Rating: 5 out of 5 stars
    5/5
    I love love love Lisa Genova! This is the story of a very successful concert pianist that has been diagnosed with ALS (Amyotrophic Lateral Sclerosis) and his slow and painful deterioration.

    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.
  • Rating: 5 out of 5 stars
    5/5
    Thanks to the publisher, Gallery/Scout Press, via NetGalley for an e-ARC in exchange for my honest opinion.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.
  • Rating: 4 out of 5 stars
    4/5
    I never really knew a lot about ALS before this book. I had only heard of it - connected to Lou Gehrig and Stephen Hawking. Also, there was an episode on "Suits" about it. I only knew it was a disease that could cause paralysis and death. 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.Excellent read!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.
  • Rating: 5 out of 5 stars
    5/5
    This book is sad, tragic and devastating. The author has done a fabulous job of capturing a life with ALS.
  • Rating: 5 out of 5 stars
    5/5
    Moves along, great characters, sad...but in a good way. %\
  • Rating: 5 out of 5 stars
    5/5
    From the minute I began reading this book I was glued.

    As I reached the last 30 pages, I was continuously crying. This book is truly powerful and captures the forgiveness, heartbreak and struggles that not only ALS carries, but any incurable disease brings..

    A bittersweet, beautiful book...
  • Rating: 4 out of 5 stars
    4/5
    Richard is a famous concert pianist and, in his mid-40s, has been diagnosed with ALS (Lou Gherig’s Disease). He starts off by losing the use of his right hand, and has lost “only” (only in comparison to what’s to come) this (so far) when his ex-wife, Karina, learns of his diagnosis. Karina might have also become a famous pianist, if not for her marriage and the arrival of their (now college-aged) daughter, Grace. What a horrible disease. I can’t even imagine living on my own (as I do) and having to face, little by little, every step that happens with this degenerative disease. And at the same time, completely losing one’s independence. It’s a scary thought – what would I do without someone to care for me, to help me, if it happened to me? At the start, Richard does live alone and has only the help of a few home-care workers, whom he can only afford for about 4 hours per day. I loved one of these workers in the story, though – Bill. These are amazing people, those who care for the terminally ill, and with diseases where bit-by-bit, someone else needs to help with every single thing. And to go through it all, over and over again, with different people. Have to admit, though, that I didn’t (at least for the first bit of the book) like either Richard or Karina. Of course, we learn more about them, their relationship, their histories, and how they ended up where they are as the story goes on.Hard to imagine it being me… hard to imagine it being a loved one… even hard to think about those amazing people who look after those with ALS day after day, even if not a loved one, but to help multiple people and go through it with each of them over and over.
  • Rating: 4 out of 5 stars
    4/5
    Although "Still Alice" is still my favourite novel by Lisa Genova, "Every Note Played" was a fascinating novel about one man's horrendous journey with ASL. Richard Evans was a world renowned pianist whose life came crashing around him when he discovered he could no longer use his right arm. Being a neuroscientist, the author was able to highlight this insidious disease and its consequences. She provided detailed insights into Richard's horrific decline as ASL gradually paralysed his body, and emphasised the effects it had on his family.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.
  • Rating: 4 out of 5 stars
    4/5
    Every Note Played by Lisa Genova is one of the best books I have read in a long time. The book is about Richard, a very accomplished and successful pianist, and his battle with ALS. Imagine having a disease that takes away the one thing you love and then slowly destroys the rest of your body as you helplessly watch it decay. 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.”
  • Rating: 4 out of 5 stars
    4/5
    It's obvious that Genova has done her research as she poignantly describes Richard's thoughts, feelings, symptoms and struggles as he progresses towards his inevitable death from ALS. His ex-wife Karina is lovingly and genuinely characterized as she resentfully but dutifully accepts the role of full-time caretaker even though the couple has divorced. 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.
  • Rating: 5 out of 5 stars
    5/5
    Lisa Genova is a gift to medicine. As a neuroscientist she has a clear understanding of disease. Her novels are written for the non-scientists. She presents patients living with severe disorders with brutal honesty and compassion.Richard Evans is a renowned classical pianist newly diagnosed with ALS. He's also alone since his marriage has ended in a bitter divorce. He is estranged from his father, brothers, and daughter. His ex-wife cares for him as his disease progresses. Their relationship is strained but some peace and resolution result.The author forces the reader to empathize with all characters. You are also forced to consider the effects of the disease, possible outcomes, and quality of life decisions.The topic means this is not an easy book to read. But I'm grateful that I did read it.
  • Rating: 5 out of 5 stars
    5/5
    Richard is a middle-aged, highly accomplished and successful concert pianist whose whole life has been focused on music. However, his personal life has been rather less successful: following an acrimonious divorce from Karina, and a total lack of contact with his daughter Grace, he is now living alone in an apartment in Boston. When he first begins to experience a problem controlling his right hand he puts it down to stress but, when this becomes worse and he is forced to cancel concerts, investigations show that he has ALS, Amyotrophic lateral sclerosis – more commonly known in the UK as Motor Neurone Disease. Although the symptoms start in his hands, he knows that the relentless and progressive nature of the disease will, eventually, affect all his muscles and lead to total paralysis. Although in the early stages of this progression he is able, with the help of daily carers, to remain in his apartment, he eventually realises that he has reached the time when he needs expensive, full time care. At this point Karina, still living in the family home and knowing that Richard cannot afford the twenty-four-hour care required, reluctantly invites him to return to the family home where she becomes his full-time carer. The couple had met at music college where she had been at least as talented a pianist as Richard. However, her potential became the neglected “victim” of his growing success, his concert tours and her need to care for their daughter. She now works from home as a piano teacher but is full of regret and resentment about the career she sacrificed, although when she is honest with herself, she is aware that she could have done more to pursue this, especially once Grace went to college. She is also angry and resentful about the ways in which his long absences meant that she and Grace often felt neglected, feelings exacerbated by the various affairs he had. As Richard and Karina begin the steep learning-curve of how to deal with the terrible reality of his condition and his increasing physical dependence, they struggle to find ways to re-engage with each other and to reconcile their differences before it is too late.Lisa Genova, as she did when writing about Alzheimer’s in her novel Still Alice, has written a moving and well-researched story about the devastating progression of ALS. She demonstrated, in an intensely powerful way, what it feels like to be faced with the experience of living with a disease which unpredictably, but relentlessly, paralyses every single muscle in your body, progressively robbing you of the ability to use your hands, to walk, to chew your food, to swallow without choking, to communicate with coherent speech and, ultimately, to breathe without mechanical help. She also captured, in a raw and affecting way, how this awareness remains acutely distressing because, whilst the body is failing the mind remains unaffected, able to track every incremental moment of loss and the inevitable descent into total dependence, with the moments of profound indignity which become inevitable. In many ways neither Richard nor Karina initially came across as particularly likeable characters but, in so many ways, this is why the story is so powerful and convincingly credible. As the story is told from their alternating perspectives, you gradually become aware of the intense complexity of their relationship, their thoughts and old resentments, the excuses they make for their past choices and actions, their tendency to blame each other for all that went wrong in their relationship, their current ambivalent feelings as, for different reasons, they find themselves imprisoned by the inter-dependence they are now being forced to negotiate. The fact that the author didn’t in any way romanticise their current relationship, which was so often full of mutual hostility and resentment, but instead demonstrated that, in spite of this, they attempted to find ways to let go of old patterns, to forgive each other and, ultimately, to build bridges, was an impressive demonstration of her understanding of human psychology. Equally impressive was the way in which she explored the effects of a debilitating illness on everyone involved with the sufferer and the relentless nature of being a full-time carer. How do you show caring and compassion when there are moments when you almost hate the person for making these demands on you? It is all too easy to see how resentment and anger can tip over into abuse. I thought that the relationship with daughter Grace was sympathetically told and was a reminder that each and every member of a family is affected by the diagnosis of a life-changing disease. The role of external care-givers brings its own dynamics and, yet again, these were dealt with in a sensitive and credible way. Bill, one of Richard’s earliest carers and also his most loyal, was a delight and I ended up feeling that every family struggling in this way should have the support of a person like Bill! There were times when it felt almost too painful to continue reading this story because the author, in almost forensic detail, evoked such an acute awareness of the range of losses a person with this disease faces. The description of Richard, now being fed by a tube into his stomach, reflecting on the memory of what food used to taste like and its different textures, of his memories of being able to enjoy the layers of complexity in a glass of good wine, really captured just one of the incidental losses which resulted and gave me an insight which I had never previously considered. In fact, it is this educational aspect of Lisa Genova’s writing which is one of the reasons I appreciate her novels; I feel that I learn a lot and yet don’t feel that I am being “preached” at. In conclusion, although there are moments when this is a profoundly sad and distressing read, it is full of empathy and one which explores second chances, forgiveness, redemption, courage and the power of love so, whilst it at times made me cry, it also reminded me of the amazing resilience of human beings. The nature of all the themes covered would make this novel an ideal choice for reading groups. My thanks to Readers First and Allen and Unwin for a copy of this book in exchange for an honest review.
  • Rating: 4 out of 5 stars
    4/5
    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.

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  • Rating: 5 out of 5 stars
    5/5
    Richard Evans is a world-famous concert pianist who has recently been diagnosed with ALS. As his health quickly deteriorates and as he requires more and more complex and expensive care, he thinks back on his life and on the mistakes he has made and the regrets he has for things he has done or not done. He misses no longer being able to play the piano; he misses close relationships he has had with women including his ex-wife, Karina; he regrets how he treated Karina and wishes he could ask for her forgiveness while he still can; but most of all, he regrets that he had not been a better father to Grace, their now college-aged daughter.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

    1 person found this helpful

  • Rating: 5 out of 5 stars
    5/5
    Every Note Played, Lisa Genova, author; Dennis Boutsikaris, Dagmara Dominczyk, narratorsThis 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.
  • Rating: 4 out of 5 stars
    4/5
    A special thank you to NetGalley, Simon & Schuster Canada, and Gallery/Scout Press for an ARC in exchange for an honest review.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.
  • Rating: 4 out of 5 stars
    4/5
    ALS took his music, but that was only the beginning. Richard was an accomplished concert pianist. Perhaps not the nicest person, but certainly a successful one. Divorced from his equally musically talented wife, he had a great life. Great, that is, until ALS intervened. Within months, the disease devastated him, robbing him of his hands, his arms, his independence, and his dignity. Soon, an accidental phone call to his ex-wife made her aware of his situation. Having no one else, she became his primary caregiver. Author Lisa Genova gives her readers a graphic picture of what it means to live with ALS. But this story is much more than that. It delves into the problems relationships can have when people are not honest or faithful, about resentments that fester when one partner’s ambitions are repressed, and what happens when sacrifices are not appreciated. In watching Richard’s decline, it is evident that regrets are more about failed relationships rather than failed careers, and it is never too late to ask for forgiveness.
  • Rating: 5 out of 5 stars
    5/5
    Richard just found out he has ALS. His hands and arms succumb to the disease first which is devastating because he’s a world renowned concert pianist. He’s recently divorced from Kathy and his only daughter Grace is away at college so he has no one to be his caregiver. And anyway, he’s incredibly stubborn and in denial that his disease will eventually take him down.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.
  • Rating: 5 out of 5 stars
    5/5
    This book is amazing! Richard is not really a character you like. He is an accomplished pianist which has toured the world. He is arrogant, a terrible father, and definitely not a great husband. When he is diagnosed with ALS, his world changes for the worst.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.

Book preview

Every Note Played - Lisa Genova

PROLOGUE

Richard is playing the second movement of Schumann’s Fantasie in C Major, op. 17, the final piece of his solo recital at the Adrienne Arsht Center in Miami. The concert hall is sold-out, yet the energy here doesn’t feel full. This venue doesn’t carry the prestige or intimidating pressure of Lincoln Center or the Royal Albert Hall. Maybe that’s it. This recital is no big deal.

Without a conductor or orchestra behind him, all audience eyes are on him. He prefers this. He loves possessing their undivided attention, the adrenaline rush of being the star. Playing solo is his version of skydiving.

But this entire night, he’s noticed that he’s playing on top of the notes, not inside them. His thoughts are drifting elsewhere, to the steak dinner he’s going to eat back at the hotel, to the self-conscious examination of his imperfect posture, criticizing the flatness of his performance, aware of himself instead of losing himself.

He’s technically flawless. Not many pianists alive today could traverse this demandingly fast and complex section without error. He normally loves playing this piece, especially the bombastic chords of the second movement, its power and grandiosity. Yet, he’s not emotionally connected to any of it.

He trusts that most, if not all, of the people in the audience aren’t sophisticated enough to hear the difference. Hell, most people have probably never even heard Schumann’s Fantasie in C Major, op. 17. It forever breaks his heart that millions listen to Justin Bieber all day long and will live and die without ever hearing Schumann or Liszt or Chopin.

Being married is more than wearing a ring comes to mind. Karina said this to him some years ago. Tonight, he’s just wearing the ring. He’s mailing it in, and he’s not sure why. He’ll get through this last piece and have another chance here tomorrow night before flying out to LA. Five more weeks of this tour. It’ll be summer by the time he gets home. Good. He loves summer in Boston.

He plays the final phrasing of the third-movement adagio, and the notes are gentle, solemn, hopeful. He’s often moved to tears at this point, a permeable conduit for this exquisite expression of tender vulnerability, but tonight he’s unaffected. He doesn’t feel hopeful.

He plays the final note, and the sound lingers on the stage before dissipating, floating away. A moment of quiet stillness hangs in the hall, and then the bubble is punctured by applause. Richard stands and faces the audience. He hinges at the waist, his fingers grazing the bottom of his tuxedo jacket, bowing. The people rise to their feet. The houselights are up a bit now, and he can see their faces, smiling, enthusiastic, appreciating him, in awe of him. He bows again.

He is loved by everyone.

And no one.

ONE YEAR LATER

CHAPTER ONE

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. Even as a child, she never doubted this. Location matters in destiny as much as it does in real estate.

In Gliwice, it was every girl’s birthright to take ballet. The ballet teacher there was Miss Gosia, a former celebrated prima ballerina for the Polish National Ballet prior to Russian martial law, and because of this, it was considered a perk to raise daughters in otherwise grim Gliwice, an unrivaled privilege that every young girl would have access to such an accomplished teacher. These girls grew up wearing leotards and buns and tulle-spun hopes of pirouetting their way out of Gliwice someday. Without knowing specifically what has become of the girls who grew up in Gliwice, she’s sure that most, if not all, remain firmly anchored where they began and are now schoolteachers or miners’ wives whose unrequited ballerina dreams have been passed on to their daughters, the next generation of Miss Gosia’s students.

If Karina had grown up in Gliwice, she would most certainly not have become a ballerina. She has horrible feet, wide, clumsy flippers with virtually no arch, a sturdy frame cast on a long torso and short legs, a body built more for milking cows than for pas de bourrée. She would never have been Miss Gosia’s star pupil. Karina’s parents would have put an end to bartering valuable coal and eggs for ballet lessons long before pointe shoes. Had her life started in Gliwice, she’d still be in Gliwice.

The girls down the road in Bytom had no ballet lessons. The children in Bytom had the Catholic Church. The boys were groomed for the priesthood, the girls the convent. Karina might have become a nun had she grown up in Bytom. Her parents would’ve been so proud. Maybe her life would be content and honorable had she chosen God.

But her life was never really a choice. She grew up in Zabrze, and in Zabrze lived Mr. Borowitz, the town’s piano teacher. He didn’t have a prestigious pedigree like Miss Gosia’s or a professional studio. Lessons were taught in his living room, which reeked of cat piss, yellowing books, and cigarettes. But Mr. Borowitz was a fine teacher. He was dedicated, stern but encouraging, and most important, he taught every one of his pupils to play Chopin. In Poland, Chopin is as revered as Pope John Paul II and God. Poland’s Holy Trinity.

Karina wasn’t born with the lithe body of a ballerina, but she was graced with the strong arms and long fingers of a pianist. She still remembers her first lesson with Mr. Borowitz. She was five. The glossy keys, the immediacy of pleasing sound, the story of the notes told by her fingers. She took to it instantly. Unlike most children, she never had to be ordered to practice. Quite the opposite, she had to be told to stop. Stop playing, and do your homework. Stop playing, and set the dinner table. Stop playing, it’s time for bed. She couldn’t resist playing. She still can’t.

Ultimately, piano became her ticket out of oppressive Poland, to Curtis and America and everything after. Everything after. That single decision—to learn piano—set everything that was to follow in motion, the ball in her life’s Rube Goldberg machine. She wouldn’t be here, right now, attending Hannah Chu’s graduation party, had she never played piano.

She parks her Honda behind a Mercedes, the last in a conga line of cars along the side of the road at least three blocks from Hannah’s house, assuming this is the closest she’ll get. She checks the clock on the dash. She’s a half hour late. Good. She’ll make a brief appearance, offer her congratulations, and leave.

Her heels click against the street as she walks, a human metronome, and her thoughts continue in pace with this rhythm. Without piano, she would never have met Richard. What would her life be like had she never met him? How many hours has she spent indulging in this fantasy? If added up, the hours would accumulate into days and weeks, possibly more. More time wasted. What could’ve been. What will never be.

Maybe she would’ve been satisfied had she never left her home country to pursue piano. She’d still be living with her parents, sleeping in her childhood bedroom. Or she’d be married to a boring man from Zabrze, a coal miner who earns a hard but respectable living, and she’d be a homemaker, raising their five children. Both wretched scenarios appeal to her now for a commonality she hates to acknowledge: a lack of loneliness.

Or what if she had attended Eastman instead of Curtis? She almost did. That single, arbitrary choice. She would never have met Richard. She would never have taken a step back, assuming with the arrogant and immortal optimism of a twenty-five-year-old that she’d have another chance, that the Wheel of Fortune’s spin would once again tick to a stop with its almighty arrow pointing directly at her. She’d waited years for another turn. Sometimes life gives you only one.

But then, if she’d never met Richard, their daughter, Grace, wouldn’t be here. Karina imagines an alternative reality in which her only daughter was never conceived and catches herself enjoying the variation almost to the point of wishing for it. She scolds herself, ashamed for allowing such a horrible thought. She loves Grace more than anything else. But the truth is, having Grace was another critical, fork-in-the-road, Gliwice-versus-Bytom-versus-Zabrze moment. Left brought Grace and tied Karina to Richard, the rope tight around her neck like a leash or a noose, depending on the day, for the next seventeen years. Right was the path not chosen. Who knows where that might’ve led?

Regret shadows her every step, a dog at her heels, as she now follows the winding stone path into the Chu family’s backyard. Hannah was accepted to Notre Dame, her first choice. Another piano student off to college. Hannah won’t continue with piano there. Like most of Karina’s students, Hannah took lessons because she wanted to add plays piano to her college application. The parents have the same motive, often exponentially more intense and unapologetic. So Hannah went through the motions, and their weekly half hour together was a soulless chore for both student and teacher.

A rare few of Karina’s students authentically like playing, and a couple even have talent and potential, but none of them love it enough to pursue it. You have to love it. She can’t blame them. These kids are all overscheduled, stressed-out, and too focused on getting into the best college to allow the nourishment passion needs to grow. A flower doesn’t blossom from a seed without the persistent love of sun and water.

But Hannah isn’t just one of Karina’s piano students. Hannah was Grace’s closest friend from the age of six through middle school. Playdates, sleepovers, Girl Scouts, soccer, trips to the mall and the movies—for most of Grace’s childhood, Hannah was like a younger sister. When Grace moved up to the high school and Hannah remained in middle school, the girls migrated naturally into older and younger social circles. There was never a falling-out. Instead, the friends endured a passive drifting on calm currents to separate but neighboring islands. They visited from time to time.

Hannah’s graduation milestone shouldn’t mean much to Karina, but it feels monumental, as if she’s sustaining a bigger loss than another matriculated piano student. It trips the switch of memories from this time last year, and it’s the end of Grace’s childhood all over again. Karina leaves her card for Hannah on the gift table and sighs.

Even though Hannah’s at the far end of the expansive backyard, Karina spots her straightaway, standing on the edge of the diving board, laughing, a line of wet girls and boys behind her, mostly boys in the pool, cheering her name, goading her to do something. Karina waits to see what it will be. Hannah launches into the air and cannonballs into the water, splashing the parents gathered near the pool. The parents complain, wiping water from their arms and faces, but they’re smiling. It’s a hot day, and the momentary spray probably felt refreshing. Karina notices Hannah’s mom, Pam, among them.

Now that Hannah is moving to Indiana, Karina assumes she won’t see Pam at all anymore. They stopped their Thursday-night wine dates some time ago, not long after Grace started high school. Over the past couple of years, their friendship dwindled to the handful of unfulfilling moments before or after Hannah’s weekly piano lesson. Tasked with shuttling her three kids to and from a dizzying schedule of extracurricular activities all over town, Pam was often too rushed to even come inside and waited for Hannah in her running car. Karina waved to her from the front door every Tuesday at 5:30 as Pam pulled away.

Karina almost didn’t come today. She feels self-conscious about showing up alone. Naturally introverted, she’d been extremely private about her marriage and even more shut-in about her divorce. Assuming Richard didn’t air their dirty laundry either, and that’s a safe bet, no one knows the details. So the gossip mill scripted the drama it wasn’t supplied. Someone has to be right, and someone has to be wrong. Based on the hushed stares, vanished chitchat, and pulled plastic smiles, Karina knows how she’s been cast.

The women in particular sympathize with him. Of course they do. They paint him as a sainted celebrity. He deserves to be with someone more elegant, someone who appreciates how extraordinary he is, someone more his equal. They assume she’s jealous of his accomplishments, resentful of his acclaim, bitter about his fame. She’s nothing but a rinky-dink suburban piano teacher instructing disinterested sixteen-year-olds on how to play Chopin. She clearly doesn’t have the self-esteem to be the wife of such a great man.

They don’t know. They don’t know a damn thing.

Grace just finished her freshman year at the University of Chicago. Karina had anticipated that Grace would be home for the summer by now and would be at Hannah’s party, but Grace decided to stay on campus through the summer, interning on a project with her math professor. Something about statistics. Karina’s proud of her daughter for being selected for the internship and thinks it’s a great opportunity, and yet, there’s that pang in Karina’s stomach, the familiar letdown. Grace could’ve chosen to come home, to spend the summer with her mother, but she didn’t. Karina knows it’s ridiculous to feel slighted, forsaken even, but her emotions sit on the throne of her intellect. This is how she’s built, and like any castle, her foundational stones aren’t easily rearranged.

Her divorce became absolute in September of Grace’s senior year, and exactly one year later, Grace moved a thousand miles away. First Richard left. Then Grace. Karina wonders when she’ll get used to the silence in her home, the emptiness, the memories that hang in each room as real as the artwork on the walls. She misses her daughter’s voice chatting on the phone; her giggling girlfriends; her shoes in every room; her hair elastics, towels, and clothes on the floor; the lights left on. She misses her daughter.

She does not miss Richard. When he moved out, his absence felt more like a new presence than a subtraction. The sweet calm that took up residence after he left filled more space than his human form and colossal ego ever did. She did not miss him then or now.

But going to these kinds of family events alone, without a husband, tilts her off-balance as if she were one cheek atop a two-legged stool. So in that sense, she misses him. For the stability. She’s forty-five and divorced. Single. In Poland, she’d be considered a disgrace. But she’s been in America now for over half her life. Her situation is common in this secular culture and imposes no shame. Yet, she feels ashamed. You can take the girl out of Poland, but you can’t take Poland out of the girl.

Not recognizing any of the other parents, she takes a deep breath and begins the long, awkward walk alone over to Pam. Karina spent an absurdly long time getting ready for this party. Which dress, which shoes, which earrings? She blew out her hair. She even got a manicure yesterday. For what? It’s not as if she’s trying to impress Hannah or Pam or any of the parents. And it’s not as if there will be any single men here, not that she’s looking for a man anyway.

She knows why. She’ll be damned if anyone here looks at her and thinks, Poor Karina. Her life’s a mess, and she looks it, too. The other reason is Richard. Pam and Scott Chu are his friends, too. Richard was probably invited. She could’ve asked Pam if Richard was on the guest list—not that it mattered, just to be forewarned—but she chickened out.

So there it is, the stomach-turning possibility that he might be here, and the even more putrid thought that he might show up with the latest skinny little twentysomething tart hanging on his arm and every self-important word. Karina rubs her lips together, making sure her lipstick hasn’t clumped.

Her eyes poke around the yard. He’s not standing with Pam and the cluster of parents by the pool house. Karina scans the pool, the grilling island, the lawn. She doesn’t see him.

She arrives at the pool house and inserts herself into the circle of Pam and Scott and other parents. Their voices instantly drop, their eyes conspiring. Time pauses.

Hey, what’s going on? Karina asks.

The circle looks to Pam.

Um . . . Pam hesitates. We were just talking about Richard.

Oh? Karina waits, her heart bracing for something humiliating. No one says a word. What about him?

He canceled his tour.

Oh. This isn’t earth-shattering news. He’s canceled gigs and touring dates before. Once, he couldn’t stand the conductor and refused to set foot onstage with him. Another time, Richard had to be replaced last minute because he got drunk at an airport bar and missed his flight. She wonders what reason he has this time. But Pam and Scott and the others stare at her with grave expressions, as if she should have something more compassionate to say on the subject.

Her stomach floods with emotion, her inner streets crowding fast as a fervent protest stands upon its soapbox in her center, outraged that she has to deal with this, that Pam especially can’t be more sensitive to her. Richard’s canceled tour isn’t her concern. She divorced him. His life isn’t her problem anymore.

You really don’t know? asks Pam.

They all wait for her answer, lips shut, bodies still, an audience engrossed in watching a play.

What? What, is he dying or something?

A nervous half-laugh escapes her, and the sound finds no harmony. She searches the circle of parents for connection, even if the comment was slightly inappropriate, for someone to forgive her a bit of dark humor. But everyone either looks horrified or away. Everyone but Pam. Her eyes betray a reluctant nod.

Karina, he has ALS.

CHAPTER TWO

Richard lies in bed awake, satisfied by a full night’s sleep, his eyes alert and unblinking, staring vaguely at a curled slice of peeling paint on the vaulted ceiling directly above him. 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.

He’s in his own bedroom when he should be waking up in the Mandarin Oriental in New York City. He was supposed to play a solo recital at David Geffen Hall at Lincoln Center last night. He loves Lincoln Center. The almost-three-thousand-seat venue had been sold-out for months. If he were at the Mandarin, he’d be about ready to order breakfast. Possibly for two.

But he’s not at the Mandarin in New York, and he’s not in the company of a lovely woman. He’s alone in his bed in his condo on Commonwealth Avenue in Boston. And even though he’s hungry, he waits.

Trevor, his agent, sent out a press release canceling his tour, claiming tendinitis. Richard can’t understand the point of publicizing this misleading information. They bite the bullet now or they bite the bullet later. Either way, the barrel of the gun stays firmly pointed at Richard’s head. True, he first assumed he was dealing with tendinitis, a frustratingly inconvenient but common injury that would heal with rest and physical therapy. He’d been so frustrated with taking even a few weeks away from the piano, worried about what it would do to his playing. That was seven months and a lifetime ago. What he wouldn’t give to have tendinitis.

It’s possible his agent is still in denial. Richard is scheduled to play with the Chicago Symphony Orchestra in the fall. Trevor hasn’t canceled this gig yet, just in case Richard is somehow better by then. Richard gets it. Even now, six months after his diagnosis, he still can’t fully wrap his mind around what he has, what’s going to happen. Many times in any given day, when he’s reading or drinking a cup of coffee, he’s symptom-free. He’ll feel totally normal, and he’ll either forget that the past several months have happened, or a confident rebellion rises.

The neurologist was wrong. It’s a virus. A pinched nerve. Lyme disease. Tendinitis. A temporary problem, and now it’s resolved. Nothing’s wrong.

And then his right hand won’t keep time when playing Rachmaninoff’s Prelude in G-sharp Minor, chasing and not catching the tempo. Or he’ll drop his half-full cup of coffee because it’s too heavy. Or he doesn’t have the strength to manage the fingernail clipper. He looks down at the grotesquely long fingernails of his left hand, the neatly trimmed nails of his right.

This is not a temporary problem.

He will not be playing in Chicago in the fall.

He’s naked, has always slept in the nude. All those years next to Karina in her high-necked flannel pajamas and kneesocks. He tries to picture her naked but can only imagine the other women. This would normally arouse him, and he’d welcome the pleasant distraction of masturbation right now, but the dreadful anticipation of what’s coming has him anxious, and his dick lies limp and still like the rest of him.

His body heat has created a cozy cocoon beneath the covers, a stark contrast to the uninviting temperature of his bedroom. He braces for the shocking sharpness of cold air against his skin as he whips the sheet and comforter off his body. He wants to see it when it comes.

His eyes scrutinize the length of his arms, each knuckle of each finger, especially the index and middle fingers of his right hand. He evaluates his chest and stomach for irregularities amid the rise and fall of his breathing. He drops his gaze to his legs, his toes; his senses heightened and ready, a hunter scanning for a flash of white fur.

He waits, his body a pot of water on the stove, the setting dialed to high. It’s only a matter of time. A watched pot will eventually boil. Of course, he hopes it won’t come. But also, perversely, he lies there welcoming it, its familiarity dancing through his body.

The

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