Last year, my Facebook feed was filled with people doing the "Ice Bucket Challenge"; agreeing to have themselves videoed while pouring ice water on themselves, in exchange for donations for ALS research. Here in New Orleans a local hero is Steve Gleason, a former player for the Saints, who has lived with ALS since 2011. Both this book and the story of Steve Gleason's life make it clear that ALS is one nasty disease.



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

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

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



I'd like to thank the publisher for making a review copy available via NetGalley. Grade: A.

“Every note played is a life and a death.”

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

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

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

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

I received a free ARC from NetGalley in exchange for an honest review.

Lisa Genova is a great writer. She has the ability to bring some really scary thoughts into really honest, real stories. The diseases about which she rights are so frightening, but real. She tells not only the effect of the patient, but the family as well. ALS is not a great thing to think about, yet she writes a wonderful, thoughtful book about someone going through it. I'm glad I read it.

Lisa Genova has once again spared no details in depicting a horrible, debilitating disease. Here she focuses on ALS, commonly called Lou Gehrig’s Disease. Even cringe-worthy details like helping a grown man out of pants smeared in excrement, are painfully recounted.

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

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

Genova’s book is powerful and impressive. It’s not an easy read and it certainly brings a greater understanding of this debilitating illness. Never again will readers not fully fathom what an ALS diagnosis entails.
4.5*

I've read several other books by Lisa Genova, and in all, she finds a way to not only spotlight drastic medical conditions but to show the human impact of people dealing with diagnosis and life-altering diseases.

In <em>Every Note Played</em>, she showcases the horror of a life irreparably changed by ALS. Using both Richard and Karina's perspectives, we're led through the stages of deterioration, each with its own sets of loss, frustration, humiliation, and increasing dependency. Truly, this is an eye-opening book in terms of what it feels like to lose ability and control, as well as what it feels like to be the witness to a process that can't be stopped.

First time reading this author and I thought this book was great! I loved it. The book was beautifully written! Can not wait to read more of her book..

If you are looking for a tear-jerker to add to your book stack this month, then be sure to add Genova’s latest novel, Every Note Played.

I have read everything that Genova has written and this has been my favorite of all her incredible books. This story explores the disease ALS (Lou Gehrig’s disease) and the swift decline that occurs when someone is faced with this illness.

Richard is a world-renowned pianist that has chosen to make playing music the focus of his life, even over his family. Divorced and estranged from his daughter, he bounces from one relationship to the next. When he begins having difficulties playing piano, particularly with his right hand, he sees a doctor and is faced with the devastating news that he has ALS and will soon see paralysis throughout the rest of his body.

Unable to afford the care that he needs, he must ask his ex-wife to help care for him, someone he had cast aside and cheated on during their marriage. This dynamic is quite toxic as Richard and Karina must learn to live together again and face the horrific and heartbreaking decline of Richard’s health.

Richard is an unlikable character from beginning to end and I do think that this makes Karina’s sacrifice even greater because he is so ungrateful. Some readers may struggle with a connection to him, but you definitely won’t struggle to sympathize as you see the gravity of this illness and how quickly it takes over the body.

I cry about once a year over a book, thanks to a hardened soul and reading so much.

This book WRECKED ME.

I was crying reading it and then two days later I was still crying about it. It moved me emotionally, in ways that books rarely do.

Once I came to the end and saw all of the people that Genova lovingly mentions that shared their journey with ALS with her, you see how much thought and research went into this project. Genova’s compassion in telling this story is, truly, a gift.

Be sure to add this one to the top of your book stack this month!

Another Lisa Genova neurology novels. This one deals with a concert pianist that has ALS. Very heavy, but a good depiction of the decline that occurs as part of the disease. Very well-written.

4+ stars. I am a huge Lisa Genova fan, having read and loved every one of her books now (Still Alice is still my favorite). I always learn so much in her books, and each is about a different disease or condition that someone outside of the medical community like me may not have heard much about--as in Still Alice and Love Anthony, or were completely unaware of-1as in The O'Briens and Left Neglected).

One of my Utah cousins, when we first found each other 13 years ago as a result of our genealogical research, told me at that time that his wife had ALS, which I had only heard of as Lou Gehrig's disease, and I knew only that it was very bad. My cousin gave me periodic updates on her deterioration (I never met her), until death finally freed her from her misery. What I remember most is when she could no longer swallow. How can your body fail you like that and yet you're still hanging on? But it wasn't long after that.

In Every Last Note, Richard had been a famous classical pianist before ALS struck. He was divorced and living alone when he lost the use of one arm and then the other. Then one leg; then both. His ex-wife didn't want to do it, but offered up her home, formerly his home, where she would take care of him along with the home health aides Richard was already paying for. Genova always gives us the big picture, not only how a disease strikes the victim but also the affects on the caregivers. She makes us think about our resilience, adaptability, our ability to forgive, and how to move on. The ending was a tear jerker but I can't see how it could go any other way.

Thanks to NetGalley and the publisher.

Karina’s musical talent surpasses her boyfriend Richard’s, but she sacrifices her dream to their marriage and child, and then falls in love with jazz, a genre abhorrent to Richard. He builds his career as an international classical pianist, his inflating ego one of many factors in their divorce. He attempts to hide the onset of ALS from his fans, his agent, and Karina. Due to circumstances and finances, Richard moves back in with Karina, who takes over his care with the help of home health aides. In the year that robs Richard of his body, he at last opens up emotionally to his estranged daughter, and eventually he and Karina find a kind of peace.

Beyond being a graphic, heart-wrenching depiction of a man succumbing to a fatal disease, this story shows how women accommodate men and lose themselves, accepting a smaller life. It’s also a homily to home health aides who make the effort to maintain the dignity of their clients. The rolling flow of the writing is interrupted only by the excessive use of analogies, whole paragraphs at times. In Author Notes, Genova offers a peek into her research and sources for an accurate representation of living with ALS. The details are so vivid, if she’d written in first person, this novel would have read like a memoir.

I was fortunate to receive a digital copy of this wonderful story from the publisher through NetGalley.

I posted my review to my website, Goodreads, Facebook, Twitter, and B&N.

Lisa Genova is a must read author for me. I have read and enjoyed each of her books. While they all are emotional reads, Every Note Played wrecked me. Richard, a concert pianist, is diagnosed with ALS. The novel follows his devastating battle with the disease. As always, Genova provides an up-close looks at how the disease ravages the patient, but also how it affects family members, in this case ex-wife Karina and college age daughter Grace. I think this is Genova's best novel yet.

Thanks to NetGalley for providing me a digital copy to read.

Every Note Played is a heart wrenching story about a couple who lost their way but not their respect, for one another. Karina and Richard are both musicians who fell in love over the piano. Karina plays jazz and Richard is more of a classical purist, yet they are able to find commonalities even beyond their instruments. Over time though, secrets and insecurities creep into their marriage, ultimately contributing to its demise. This aspect of the story is not unique or new; the added dimension is that Richard acquired ALS about xx years after the divorce, and Karina becomes his caretaker. They each have to face their own internal demons as well as make peace with how they treated one another.

As Richard’s disease progresses, he begins to develop humility. Karina rediscovers long lost confidence. The two figure out a way to live together while also facing Richard’s certain death sentence. Their ability to find a way to communicate and even somewhat reconcile make for a compelling read. Side characters include their college age daughter, Richard’s caretaker and Karina’s best friend; each one offers insight into the character’s development and move the story along.

Overall, though not an upbeat book, it is honest and informative. It was hard to put down, as I wanted to find out what would happen next. The emotional complexities made the book compelling. I also have relatives with this disease and learning about what they go through was difficult to process, yet I appreciated learning more about the disease. Though fiction, the author did a tremendous amount of research and I think that what it is in the book is an accurate depiction of some one with ALS. She also shared information at the end about new trials, which offer hope to those afflicted. Strongly recommend.

“He turns his head ninety degrees left, then right, testing himself, relieved that he can still do this. Once his neck and voice are paralyzed, he’ll be reduced to eye-gaze technology and a computer-generated voice for communicating. He opens his eyes wide and pinches them shut tight. Good. When he can no longer blink, he’ll be locked in. He doesn’t want to die, but he hopes he dies before that happens. Maybe that won’t happen.” • •

I will be honest and admit in the beginning I had some concerns -- I really, really disliked the main characters in this novel, so much so that I almost put the book down. I am so glad that I kept going because Genova did what she does best — she humanized a devastating disease within these pages and penned a gorgeous story of forgiveness. Every Note Played is the story of Richard, a world-renowned pianist who is forced to retire early from his career when he is diagnosed with ALS. Due to his abrasive nature (he is a COLOSSAL ass), no one is lining up to care for him. Once he comes to terms with the fact that he can’t do this alone, he reluctantly agrees to accept help from his ex-wife, Katrina. •
•

My favorite character was Richard's nurse, Bill. He was a ray of light, laughter and kindness and my heart was so tender to him. Having recently gone through the hospice experience with my own dad, I have the utmost respect and appreciation for the people who work day in and day out to make a patient's last days as comfortable as possible. I shut the book a sobbing wreck and was reminded how precious our time with our loved ones is and how we need to make the most of every day we have. This is a beautiful story of the grace it often takes to forgive those who have deeply hurt us and the strength required to watch a loved one succumb to a sickness that you have no power to stop. ⭐️⭐️⭐️⭐️ emotional Stars.

Just as Genoa’s previous book, this one was just as moving. I love how the characters were developed and the music background added an element to the story. The story was sad and touching. Similar to stories like You’re Not You by Michelle Wilder and Me Before You by John Moyes, this is another caretaker storyline where it involves husband and wife who are divorced. I liked the way the story weaves each partners part in the demise of the marriage and how they worked to communicate the hurt. I am glad that the two were able to come to a healing place. At first when we learn that Richard has ALS it was unclear why Karina would take him in when he didn’t even offer. She felt so angry with him that she would go visit and then volunteer to let him move back in with him felt so wrong. Feeling with Richard was going through and all his thoughts was helpful in understanding how one lives with ALS. It feels like a hostage situation where no outcome feels safe and he is helpless and trapped in his own body. I always find myself fascinated with this topic: grief and dying but ALS is one where there is no cure for. This story actually makes you feel what it feels like to suffer with it.

This novel centers on a heartbreaking situation: Richard, a concert pianist, develops ALS. He loses his career, his independence, and his dignity. His acrimonious divorce from Karina, also a pianist who'd put her career on hold when his took off, becomes a factor when his illness robs him of the ability to live alone. Both Richard and Karina are forced to deal with mistakes of the past. ALS is described in brutal, excruciating detail. A good story, but given the topic, not a fun book to read, and I had a hard time liking either of the two main characters. I felt sorry for them, but didn't really care about them.

2.5 stars. This book missed the mark for me. This should have been a tearjerker as there were so many opportunities for emotional scenes, but they were just instead glossed over. The author does do a phenomenal job describing ALS and the struggles both physically and mentally.

This was a beautifully written and poignant story. It touched on all the human aspects of ALS , not only those with the disease , but the caregivers and loved ones that surround them daily. The redemption of past wrongs and how love and understanding was able to right them was the best and central part of the novel.

Lisa Genova once again exhibits her amazing ability to humanize disease and medical conditions in Every Note Played. She is a master storyteller who develops characters that are very realistic and easy to relate to. I highly recommend this novel..

I read Lisa Genova's Still Alice in 2014 and it made my best-of list that year. That book really spoke to me and I was impressed with Genova's ability to combine the science of an illness and a really wonderful story. It was not the first book I'd read by Genova; in 2012 I read Left Neglected and felt very much the same about it. Which meant that I am prone to want to read anything that she writes and was eager to read this one when I first found out about it.

One of the things that I said about both Left Neglected and Still Alice was that the characters felt so real and relatable. Unfortunately, I didn't feel the same way about the characters in Every Note Played. The focus here is very tightly pulled in on just Richard and Karina so it's very important that readers care about them. But I found that I didn't care enough about them as people. Certainly I felt sorry for Richard as he watched his life slip away from him and sorry for Karina as her life becomes entirely wrapped up in having to care for him. Yes, they both had very tough childhoods which should have made me understand them better. But the crux of really caring about their relationship is that readers need to believe that, once upon a time, they were in love so that we can care about how their relationship failed. But, I didn't feel that way, so it was harder to be sad that their marriage had failed and harder to buy into the need to forgive each other and try to remember what they once had.

Genova has plenty to teach readers about the terrible betrayal of the body that is ALS. Stephen Hawking was the poster boy for ALS for decades but the truth is that those who contract ALS rarely live that long. I was astonished by how fast Richard's disease progressed; although I haven't looked into how accurate that was, Genova does have a PhD in neuroscience and her books seem well researched so I always feel like I've been well educated when I've finished one.

I only wish the story here had been one that drew me in more, that I had cared more about the characters. Still, I must admit that I did tear up near the end. So maybe I did come to care more than I realized.

4 Very solid stars.
The concert pianist is loved by everyone. And no one.
I loved Every Note Played. Characters were real and faulty, they tried. They hurt, they healed. They loved.

ALS is devastating for anyone, but as a musician, I ached with Richard as he lost one hand, then another, his livelihood, his passion, his purpose. “Eight months ago, his right hand held five of the finest fingers in the world. Today his right arm and hand are paralyzed. Dead to him, as if they already belong to a corpse…the cool sleekness of the keys, and the touch is sensual, seductive. The keys want to be caressed, the relationship ready and available to him, but he can’t respond, and this is suddenly the cruelest moment of his life.”

I ached for Karina, his ex, who stayed in their “three- bedroom colonial museum of her devastated marriage." Genova’s writing says so much with so little. The story stole my heart from the beginning. Background stories added depth and understanding to these struggling souls. Genova knows her medical stuff. I learned a lot without ever plodding through overdone details.

Some humor lifts the story. “Listening to Schumann is like looking at a Picasso, like breathing in God. Listening to Bill serenade him with Broadway tunes is a fork dipped in vinegar, stabbing him in the eye.”

He plays a single not, holding the key and pedal down, listening to its dimension, then it is “drifting, dispersing, fragile, decaying. He inhales. The smell of coffee lingers. He listens. The note is gone. Every note played is a life and a death.” Our world is transient. Take time and relish each note moment. Love as many of them as you can.

Thank you to NetGalley, the author and publisher for granting access to an arc of this book for an honest review.