Book review: Every Note Played by Lisa Genova

Every Note Played
Lisa Genova
Simon & Schuster Canada

Lisa Genova has done it again – written a brilliant, but terrifying, book about the human brain.
Her first book, Still Alice, was made into an Oscar-winning movie about a professor struggling with early onset Alzheimer’s disease.
Since then, she’s tackled the subjects of brain injury, autism and Huntington’s disease, all through human stories that reflect triumph and tragedy.
This time around, she explores ALS – Amyotrophic Lateral Sclerosis – a brain disease that slowly paralyzes a person so they can no longer move or breathe. Her protagonist is Richard, a gifted concert pianist who is also a bit of an arrogant ass.
He’s divorced from Karina, who was also a remarkable pianist, though she preferred jazz. She gave up possible fame to focus on his career and their baby, Grace. Grace is in college when her dad receives the devastating diagnosis. Richard is estranged from Grace – due to the divorce and his history of adultery – but he’s estranged from mostly everyone, including his father and brothers. His only companions are occasional flings.
Genova’s gift is her ability to take a complex medical diagnosis and bring it to life in a story that is detailed and complex with nuanced and genuine characters.
There will be tears in reading this book. As in real life, there are no happy endings with ALS. It is a fatal disease with no cure.
Genova said she was touched by the paralysis that affects people with ALS, but that she also wanted to explore emotional paralysis – when a person is stuck due to their fears or excuses or blame.
“We think we have forever and we don’t,” she said at an event promoting her book.
Genova’s research for the book included getting to know Richard Glatzer, co-director and co-writer of the film version of Still Alice.
“We talked about what it feels like to have ALS,” she said.
Genova was in Vancouver, in part, to do a TED Talk about reframing failure. When I asked her for context, she told me how Still Alice was rejected by many publishers and she ended up self-publishing the novel and selling it out of her car. Given the ultimate success of that book, and all of her books to date, I can imagine her TED Talk will be fascinating.
But back to ALS, a devastating disease and the core of Every Note Played.
Physicist Stephen Hawking died earlier this year from ALS, after living with the disease for several decades. He had a variant of the disease that allowed him to survive much longer than the disease’s average victim, who usually live two to five years after diagnosis.
The ALS Society of Canada says there has been more progress in the last five to seven years than there was in the past century, mostly thanks to $20 million raised through the Ice Bucket Challenge a few years ago.
Thanks to that funding, “the scientific community is now poised to find treatments that can significantly alter the course of the disease,” the ALS Society of Canada says.
Genova notes in an author’s note to the book that a new drug, Radicava, has been approved in the U.S., which in Japan showed a decline in physical symptoms by 33 per cent.
But that comes too late for Richard, Genova’s fictional concert pianist. Readers will get the nitty gritty on what it’s like to live with ALS, slowly losing control over the body. As I said, there will be tears. But there will also be raw emotions, character growth and familial love.

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