Mostly what I want to do is copy her words. It’s how I started out, when I was a teenager, copying the words of the best writers, slowly, in cursive, in a small notebook, hoping that some of their insights and genius might rub off on me, surprised that words that are easy to read, that glide right along, can grip and gut, too.
Lisa Genova’s words, grip and gut. She shot to literary stardom with her breakout novel “Still Alice,” which was made into a movie not because she had a big publishing house backing her. She didn’t. She self-published and sold her books one by one. And one by one, word spread because Genova knows how to tell a story.
A neuroscientist who lives on the Cape, who graduated with a PhD from Harvard, she took up writing because her grandmother had Alzheimer’s and, as much as she read about the disease, as much as she understood the science, she didn’t know what her grandmother was feeling. To learn, she studied not just writing but acting, too.
What’s amazing about her newest novel, “Every Note Played,” is what is amazing about all of Genova’s books. She is both the neuroscientist and the actor when she writes. She tells not only the story of a person struck down by some disease. She tells the story of the disease, too. And you learn this way. But it never feels like learning.
When we meet Richard, he is a 45-year-old renowned and self-absorbed concert pianist, who plays flawlessly. Eight months later, “his entire right arm and hand are paralyzed. Dead to him, as if they already belong to a corpse.”
Richard has amyotrophic lateral sclerosis, or ALS, a progressive, neurodegenerative disease for which there is no cure. And the disease is killing him.
Divorced, angry with his former wife, not close to his away-at-college daughter, Richard, a loner, vacillates between hope and despair. “Maybe there will be a breakthrough, a new clinical trial drug, something to slow it down, a cure. It could happen,” he thinks.
A pianist first, last, and always, when he loses the use of his right hand he learns “Maurice Ravel’s Piano Concerto for the Left Hand,” composed for an Austrian pianist who lost his right arm in World War I. (And how did Genova know about this? She asked the executive director of the Cotuit Center for the Arts what he would do if his right hand became paralyzed. And he told her about Ravel.) Richard practices the piece over and over, then finally plays it alone in his apartment. And he thinks: “He could do this. He could tour this piece as a guest with symphonies the world over. Of course he could. His career isn’t over. His agent is going to love this.”
And then it plummets past rock bottom when he lifts his left arm and it tremors.
The steady progression of this disease, everything ALS does to Richard, everything it takes away, is the drumbeat of this book. And though the drumbeat gets louder with every page turned, it’s how Richard and his former wife deal with ALS and with each other, that is the book’s heart. ALS does not make them better people. Genova never once sacrifices truth for sentiment. But ALS does make them people who know that time is running out.
“Who gets ALS?” Richard asks himself. Anyone can get it. ALS is “an equal opportunity killer.” It doesn’t care that Richard is a pianist any more than it cared that Sal Grasso was an artist, Andy Scott a physical therapist, Tom Flatley a real estate entrepreneur, Richard Glatzer a gifted man who co-directed “Still Alice” by typing with the one finger he could move on his iPad.
“High tide is coming. The height and grandeur of the sand castle doesn’t matter,” Genova writes in a sentence that sums it up, the randomness and relentlessness of this dreaded disease.
Lisa Genova calls ALS ONE “an extraordinary organization determined to deliver a treatment or cure for ALS by 2020.” At the end of “Every Note Played,” she asks readers to go to www.lisagenova.com and click the “Readers in Action” button to donate.