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Shining a light

Shining a Light, April 2018 Cape Cod LIFE |

Lisa Genova’s latest novel explores love and forgiveness along with ALS

In the course of her gripping, sensitive novels, Cape author Lisa Genova has tackled Alzheimer’s disease, brain damage, autism and Huntington’s disease. Her latest novel, “Every Note Played,” enters the frightening world of ALS, better known as Lou Gehrig’s disease, with empathy, compassion and strongly authentic characters.

Richard Evans is a world-class pianist who has performed to ovations all over the world and now faces the loss of his beloved music, as his hand is the first victim of the degenerative disease he has been diagnosed with. As he becomes increasingly helpless, his ex-wife, Karina, recognizes he has few options and feels compelled to become his caretaker. Grappling with a fatal disease, Richard is forced to face the mistakes he has made. Karina, who gave up a promising career as a pianist in favor of motherhood and teaching piano, begins to confront her own choices. Both realize this may be their last chance for forgiveness, peace and closure—not only for themselves but for the sake of their daughter.

“In some ways this book was harder than any of the others,” says Genova, who lives in Chatham. “This has been my most extensively and intensively researched book.”

Genova, who holds a Ph.D. in neuroscience from Harvard University, has once again combined her academic and professional background in neuroscience with a talent for storytelling. The first of her acclaimed novels was her 2007 release, “Still Alice,” about a 50-year-old college professor diagnosed with early onset Alzheimer’s disease. The novel—which Genova originally self-published after receiving several rejections—became a New York Times bestseller and was subsequently made into a movie starring Julianne Moore and released in December 2014. The making of that movie planted the seed for “Every Note Played.”

Richard Glatzer, script writer and co-director of “Still Alice,” had been diagnosed with ALS by the time Genova began working with him. Because Glatzer’s ALS was the type to affect the vocal cords first, “I never heard the sound of his voice,” Genova recalls, noting he was on the set every day using an iPad to communicate. “It took so much courage and grace,” she says of his work. When they finished the film, she asked him if he would help her research a novel about ALS. So began a journey that would bring her close to a number of people living with the disease.

In addition to her research on ALS, Genova delved into the world of music in order to know Richard and Karina. “I didn’t know anything about classical or jazz music,” she says. “I took piano lessons, interviewed pianists, and went to New Orleans to hear the jazz that Karina loves.”

Noting there are parallels between ALS and Alzheimer’s, Genova says Glatzer brought great sensitivity to his work on the film, in one instance rewriting the speech Alice makes about her struggle with Alzheimer’s. “There were so many similarities in terms of how it felt for him,” she says. Both diseases are progressive, and both vary in terms of how they progress in every case. So far, there is no cure for either disease.

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