The best day (Friday) of the week is almost here.
Over the last few days I have posted books by Lisa Genova. As much as I love her books, if I think too much about them for extended periods of time, they really do scare me.
Health, or lack of it can be frightening. So many advancements have and are being made in the medical world, but there is still so far to go. Too many people are suffering from incurable diseases.
Today brings the spotlight to the fifth and most recently published book by Genova.
Every Note Played
Although I can relate more personally to Still Alice, which was featured in yesterday’s post, Every Note Played is not only her best book to date, but also her most terrifying.
I first received this book from Overdrive on my Kindle during the summer of 2018. I began reading it and about 20% in I had to stop.
I had no personal tie to this story and the disease it is about, but it was just too heavy for me at the time. Skip ahead to just a few months ago. I came across this book and thought, ok, I’m going to try again.
I finished it in record time and was horrified.
Every Note Played is about Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig’s Disease. After reading this, there are no words to describe how disgustingly terrible this disease is.
This story follows Richard, who is a concert pianist who has performed the world over. His fingers are, “finely calibrated instruments” (book flap) that allow him to play with incredible deft and precision.
Richard’s right arm begins to feel weird and then his fingers, hand, and arm become paralyzed.
He is diagnosed with ALS.
After this he begins playing music written for just one hand, although knowing his left arm will follow the same suit as his right.
During the beginning of this story you learn that Richard wasn’t/isn’t necessarily the most likable person. Since his divorce (way prior to the diagnosis)he has become a very arrogant womanizer. He and his ex-wife Karina have a grown daughter who is away at college.
As Richard’s illness progresses, his doctor attempts to prepare him for what the future holds. ALS takes away all muscle control, putting a person in to a completely paralyzed state from head to toe. ALS even takes your voice. His doctor recommends making voice recordings for those he holds dear. Initially he sort of brushes it off. Even with his right arm paralyzed, the realty of what he is ultimately going to face takes time to set in-yet time is what he doesn’t have.
He has to order a specialized wheelchair that he can control with his mouth way before he needs it, his home which has stairs has to be sold. His career is gone. The things he held dear are slipping away at record speed.
While this is going on you learn more about Karina, and although she holds a lot of anger towards Richard, she is also still heartbroken over the divorce.
When Richard’s condition worsens he can no longer live alone. He has a home care worker who comes every day (this character is amazing and brings another layer of wonder and amazingness to this story), but is still in need of someone to live with him full-time. This is when Karina, despite her anger steps in and moves in with Richard.
Their relationship is intense and is a beautiful part of this, at many times, ugly story. Moving in and helping Richard is not something Karina wants to do even though she feels sorry that he has ALS. It’s a rocky combination to say the least, but Richard and Katrina grow incredibly alongside each other and also within themselves despite this terrible disease. Their story, along with the other characters make this one incredible book.
This story, if I could only pick one of Genova’s books, is the one I would recommend most to you. I think what bothers me most about ALS is that the mind is still aware of everything versus something like Alzheimer’s where the mind goes first (usually).
This book will break your heart, I promise. But I also promise you will learn (if you didn’t already know) so much about ALS and that knowledge cannot help but make you a more compassionate human being.
This world needs many things, and of kindness and compassion, there will never be enough.
“Every note played is a life and a death.” – Lisa Genova, Every Note Played