Richard Evans is a man on top of the world. He is a concert pianist that plays with raw emotion and incredible technique. To Richard playing the piano is breathing, it's life. He gave up so much to live this life of fame but suddenly he is feeling regret. His playing is perfection but his heart is starting to not be in it. His mind drifts elsewhere instead of getting lost in the music that his fingers are producing. Something is wrong. Audiences jump to their feet after his solo performances at some of the top concert halls in the world. He is loved by his fans and yet loved by no one all at the same time.
His current tour is suddenly cancelled. His agent is telling everyone that Richard has tendonitis, a common ailment that most pianists battle at some point or another in their career. Richard is trying to tell himself that as well, hoping that if he avoids the truth that the truth will magically change. Richard has been diagnosed with ALS.
Other than his adoring fans he has no one. Him and his wife Karina have been divorced for three years and have a searing hatred for one another, and their daughter Grace, who is in college, refuses to speak to him, taking her mom's side on everything. He's only had one other serious relationship that ended right before his diagnosis, the rest were just meaningless flings. He is estranged from his dad and two older brothers, and his mother passed away right before Richard turned 19, his only ally in the family.
The doctor's tell him to get prepared, no one knowing just how rapidly Richard will deteriorate, but where does he turn? Who can help him? He holds out as long as he can, losing both of his arms to ALS and relying on home health aids before anyone knows the severity of what is going on. He is completely alone in his empty apartment with his thoughts, in mourning, losing the love of his life. Playing the piano was his air, his life, his love, his everything. Without his ability to play, what does he really have?
A chance phone call brings him and his ex-wife Karina back together and a choice is made that she will bring him home and take care of him for as long as it takes, her too having to battle the raw emotions of being an ALS caretaker as well as dealing with her feelings about her ex-husband and their past together.
Every Note Played is a beautifully heartbreaking story that will stick with you long after you read the final page. Told predominantly from Richard's perspective, you glimpse into the life of someone that has to endure this scary disease, and get into the mind of someone that has to deal with slowly losing their life, as well as glimpses from Karina's perspective, dealing with her ex-husband and the painful memories that go along with that, as well as being a caretaker to someone with ALS.
To imagine that so many people in our country have to brave this painful disease on a daily basis leaves me speechless. My prayers are with anyone that has been affected by this illness. Before reading Every Note Played I knew little about ALS but now I feel informed and am in awe of how Lisa Genova, being a neuroscientist herself, can paint such a vivid picture of ALS through the eyes of the diseased. You feel heartbreak not only for that person but everyone involved, see the cleansing of forgiveness, and personal freedom in several forms.
I truly believe that everyone should read Every Note Played. There is adult language as well as mild sexual content for those that are sensitive to those aspects but given the situation I believe it goes with the territory. We all need to be aware of this disease and do our part to help find a cure. Please to go ALSOne.org to find out how you can help find better treatment options or a cure for ALS.
*I received a complimentary copy of this book from Gallery/Scout Press and NetGalley in exchange for an honest, unbiased review. All opinions are my own.
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