Every Note Played by Lisa Genova

I finished this book a couple of days ago, but I needed a little time before I could write about it. Every Note Played is a novel written by Lisa Genova, bestselling author of Still Alice. In this newest book, Genova explores what it is really like living with, and dying from, ALS. Richard is a world-renowned concert pianist who has spent literally most of his 45 years at the piano, practicing in excess of ten hours a day and devoting his life to his music to the detriment of his family. Divorced from his wife Karina and estranged from his only daughter, Richard lives alone in a fancy Boston apartment when he isn't on tour playing the most prestigious concert halls in the world. As weakness begins to develop in his right hand, he desperately tries to deny anything is wrong until the music begins to suffer. His ALS is a devastating and relentless blow to all that he holds dear. When the course of the disease leaves him with no choice but to turn to his ex-wife, he must come to grips with who he was, who he now is, and what he will become before ultimately succumbing to his illness.

This book was fantastic and fascinating and frightening all at once. I was heartbroken reading the indignity and anguish that Richard endured as well as that of Karina and their daughter Grace. Passages like this one made me weep for him:

  

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?

And this one:

...he plays a single note, D, with his pinkie. He holds the key and the foot pedal down, listening to the singular sound, bold and three-dimensional at first, then drifting, dispersing, fragile, decaying. He inhales. He listens. The note is gone.

Every note played is a life and a death.

As I read this book, I carefully marked the names of the musical pieces mentioned by both Richard and Karina and then searched for each of them on YouTube. I cannot recommend enough that you do the same. It will give you a whole new appreciation for the talent that Richard possesses and then excruciatingly loses. 

Lest you think Genova is just sitting in her office making up all these stories, let me assure you she is quite qualified. She earned a degree in biopsychology from Bates College where she was the valedictorian and then went on to earn her doctorate in neuroscience from Harvard University. Genova interviewed many patients with ALS as well as their caregivers. She communicates their loss, their pain, and their fear. She also shares their bravery and courage and love. Reading the acknowledgements section of this book should not be skipped, no matter how tear-filled and snot-covered you might be at the end.

After Still Alice released, Genova gave a TED Talk about how to possibly prevent Alzheimer's disease. I think you will find it both interesting for the content and also for the opportunity to hear the author of this wonderful book speak.

Still Alice is still sitting in the pile on my bedside table, but it will quickly be making its way to the top. I can't wait to read more Lisa Genova.