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Shining a light

Shining a Light, April 2018 Cape Cod LIFE | capecodlife.com

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.

One difference, Genova notes, is that ALS progresses much more swiftly than Alzheimer’s. “It can take 10 to 20 years from an Alzheimer’s diagnosis to death, so death doesn’t really take center stage,” she says. Noting she is good friends with Cape Cod writer Greg O’Brien, whose book “On Pluto: Inside the Mind of Alzheimer’s” is about his early onset Alzheimer’s diagnosis, she says, “We spend our time talking about him living. With ALS you can’t escape that this is a disease about dying.”

ALS, or amyotrophic lateral sclerosis, is a disease that causes the death of neurons that control voluntary muscles. The speed of the disease’s progression makes for a sense of urgency that comes through in “Every Note Played,” and Genova says it played into her research. “For people who are in this kind of crisis, time is short, and people get really real with you, quickly,” she says. “It’s so physically and emotionally intimate to know someone with ALS.”

Another difference is that while Alzheimer’s affects cognitive ability, ALS typically impacts only physical function, so a person may lose the ability to walk and to speak but remain mentally sharp.

As Richard faces each new hurdle posed by ALS, he mourns his music and his identity, but Genova portrays him honestly without sugarcoating his anger or his courage.

In writing the book, Genova drew on universal themes like forgiveness, regret and redemption. Aside from the death sentence of ALS, one frightening aspect for people is “What happens when I’m completely paralyzed?” she says. “And how many of us are paralyzed in some way? There are a lot of self-imposed limitations in how we allow ourselves to live. A lot of us are stuck; a lot of us don’t live the biggest and most beautiful version of our lives.”

Adding the dynamic of a divorced couple deepened the story, she says: “There’s so much opportunity in a broken relationship, things left unsaid. I like the idea that, in a disease where there is no cure, where can there be healing?” Further, she reflects, “And there’s the communication piece: How many of us say I’m sorry when we’re wrong? Do we communicate these things while we can?”

Writing and researching the book was an emotional experience for Genova. “Eight of the 12 people I came to know really well with ALS died before I finished the final draft of the book,” she says, including Glatzer, who died weeks after seeing Julianne Moore win an Oscar in 2015 for her performance as Alice. To honor them and others, Genova is working with the organization ALS ONE, and held a fundraising book launch for the organization in March. She also supports Falmouth-based Compassionate Care ALS, whose founder, Ron Hoffman, was instrumental in her research.

“With each book I write I try and become an advocate,” she says. “I hope this book will do for ALS what ‘Still Alice’ did for Alzheimer’s.”

“One thing I always want to do is portray the truth—with respect and dignity, pull the curtain back,” she adds. “I want to shine a light on people living and dying with these illnesses so they can be seen and heard. And that’s what we all want, to be seen and heard.”



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