BOOK REVIEW: Every Note Played by Lisa Genova

BOOK REVIEW: Every Note Played by Lisa Genova

Simon & Schuster Australia
April 2018
Paperback, $32.99
Reviewed by Natalie Salvo

Fiction / Modern & Contemporary Fiction

7/10

Some people’s experience with motor neurone disease or amyotrophic lateral sclerosis (ALS) is confined to their knowledge of the late Stephen Hawking. Others may also know about the late baseball player Lou Gehrig, former American football player Steve Gleason, or the ice bucket challenge that became popular online. Author and neuroscientist Lisa Genova has added to this dialogue with her fifth novel, Every Note Played. The book is a heart-wrenching and graphic tale about an accomplished concert pianist who is diagnosed with ALS.

Who gets ALS? From what he’s witnessed at the clinic, the answer is anyone. He’s seen a twenty-five-year-old medical student, a sixty-five-year-old retired Navy SEAL, a social worker, an artist, an architect, a triathlete, an entrepreneur, men and women, black, Jewish, Japanese, Latino. This disease is as politically correct as they get. It has no bigotries, allergies, or fetishes. ALS is an equal opportunity killer.
Why did a forty-five-year-old concert pianist get ALS? Why not? He hears his mother’s voice: Don’t answer a question with another question. But this is the only answer he can find.

Genova is no stranger to writing fictional stories based on protagonists with neurological conditions. She has previously written Love Anthony about autism and Inside the O’Briens about Huntington’s disease. Genova is capable of making readers empathise with the individuals who have these diseases. Her most famous novel, Still Alice, was adapted into a film starring Julianne Moore as the titular character who had Alzheimer’s disease. She was inspired to write Every Note Played after witnessing the co-director of Still Alice, Richard Glatzer, grappling with ALS.

He stands before his closet, demoralized by so many sleeves and buttons, and considers not dressing at all. But then he remembers what he’s ready to play, and inspired, he goes in the completely opposite sartorial direction. He pulls out his best tuxedo.
Socks and trousers are challenging but doable. Lace-up shoes are history. He slides his feet into patent-leather loafers. Now the top half. His eyes fill with sinking dread as he hopelessly puzzles over the pleated shirt, the waistcoat, the cuff links, the bow tie. To hell with all that. He threads his tuxedo-jacket sleeve over his lifeless right arm and buttons a single button over his bare-chested body with relative ease. There. Ready to perform.

The two main characters in Every Note Played are flawed individuals. Richard is a successful but arrogant musician. He has selfishly put his career and talent above his personal relationships. This resulted in a divorce from his wife Karina three years ago. He was also an absent father to their daughter, Grace.

Karina is also wrestling some of he own demons because she gave up on her jazz career to support Richard when the pair were married. Looking back now, she regrets her choices. After Richard’s diagnosis, Karina is thrust into the role of reluctant caregiver to her ex-husband. It might be hard for some readers to get into or behind this story if they find they don’t like or empathise with these two protagonists. Genova also uses profanities in her prose and this won’t be appreciated by all readers.

She squeezes the sheets in her fists. She wants to pull every strand of hair out of his ungrateful head. Who does he think just wiped up his piss? Who will interrupt every piano lesson this afternoon to suck his mouth dry so the students don’t have to listen to him sputter and gag between notes and worry that he’s dying in the next room? Who is up all hours of the night adjusting his mask so he can breathe? Who does he think washes his bedding and clothes and takes him to his doctor’s appointments? But, otherwise, yeah, he mostly stays out of her hair.
“I’m exhausted.”

This novel is quite short and sharp and probably could have done with being a little longer. Genova’s character development of Grace, for instance, is pretty non-existent. Richard’s decline also happens quite rapidly, even though at the outset it is just his right arm that is paralysed. This could be an accurate portrayal of how ALS develops, attacking the body’s muscles and impacting physical function, as the average life expectancy for those with the disease is just three years. Stephen Hawking defied the odds and lived for over five and a half decades following his diagnosis.

“You never know. You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”
Richard smiles. He appreciates the thought, but that isn’t how muscle atrophy in ALS works. The disease doesn’t discriminate between strong and weak muscles, old or new. It takes them all. Exercise won’t buy him more time. High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

This story alternates between the viewpoints of Richard and Karina. The two have some unfinished business to attend to. Richard must also overcome his denial at his diagnosis and make peace with his disease. At its best, this book can be quite harrowing, educational, and emotional but there are other moments where Genova gets a tad too clinical and insensitive in her prose:

So here he sits, Mr. Potato Head without arms or legs, a bobblehead on a breathing torso. His neck is too weak to hold his head up reliably, especially later in the day—making use of the Head Mouse, even when he’s wearing a neck collar, an exercise in frustrating madness, so he’s disconnected from his computer until they get the Tobii eye-tracking-technology device. It’s been ordered. He’s down to 120 pounds from 170, physically disappearing, and yet he’s taking up more and more space—his wheelchair, the hospital bed, the BiPAP machine, the shower chair, the Hoyer lift that should arrive any day now.

Every Note Played is a difficult story to summarise. On the one hand it is at times a rather powerful exploration of a tragic illness and looks at things like forgiveness, regret, sacrifice, and second chances. But at other moments it veers almost into the realm of misery porn. It is most likely that Genova’s heart is in the right place and that she wants people to understand an overwhelming and complex neurological condition, so hopefully this book resonates just like a good symphony with those who need it.

Category: Book Reviews, Other Reviews