Shining a light
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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