Chatham — As her first bestseller was being made into a movie, author Lisa Genova decided on another project after meeting Richard Glatzer, co-director of “Still Alice,” the film based on Genova’s book about a woman with early-onset Alzheimer’s disease. It was September 2013 when they met over dinner to talk about “Alice.”
But Glatzer couldn’t speak, at least not with his voice, since he’d recently been diagnosed with amyotrophic lateral sclerosis. “I was amazed by his attitude,” says Genova, an animated talker herself. “He’s wearing a bib, he’s got ALS, and he wants to make this film. ALS went to the top of my list when I met Richard.”
The film won an Oscar, Glatzer succumbed to the disease, and Genova is now writing that book.
Glatzer was battling the disease while directing “Still Alice.” He died in March 2015, shortly after Julianne Moore won an Oscar for her portrayal in the title role. ALS is a fatal neurodegenerative disease that often robs people of the ability to speak, eat, move, and breathe.
“I never heard Richard’s voice,” says Genova, who lives in Chatham with her three children. “And he had the courage to show up. He had the use of one finger, and he’d turn the iPad around and offer his very perceptive and big-picture thinking on it. He was very beloved on the set.”
Genova, a neuroscientist-turned-novelist, has combined her knowledge of the brain and her love of writing to tackle neurological disorders such as Alzheimer’s, brain injury, autism, and Huntington’s disease.
She has been researching ALS for a year and has written five chapters of her fifth novel, working on a laptop in a Starbucks near her home. Though the manuscript is not due for months, Genova will speak about her project at a May 20 gala in support of Compassionate Care ALS at the Fairmont Copley Plaza. She also spoke at the January launch of ALS ONE, a nonprofit founded by Kevin Gosnell, a Hanover businessman with ALS, to bring together doctors, researchers, and caregivers in hopes of finding a cure.
The events mark the first time Genova has advocated for a cause while still writing about that cause. Why is she doing it now?
“Because I was asked,” she says. “First, by Kevin Gosnell for the launch of ALS ONE, now by Ron Hoffman for Compassionate Care ALS. They’ve given so much to me and my understanding of ALS.”
The main character in her novel-in-progress is named Richard, a concert pianist who has ALS. He is being cared for by his ex-wife, who is a piano teacher.
“The ex-wife is a reluctant caregiver,” says Genova. “It’s about feeling trapped, and letting go. It’s about regret and forgiveness.”
She adds: “This is not ‘Tuesdays With Morrie.’” The bestseller by Mitch Albom detailed the last months of Albom’s college professor, who was dying from ALS, and dealt with issues of love, acceptance, and happiness.
Genova grew up in Waltham, graduated valedictorian and summa cum laude from Bates College with a degree in biopsychology, and earned a PhD in neuroscience from Harvard. She intended to spend her career researching diseases of the brain, publishing articles in scholarly journals such as “Neuroscience Abstracts” and “Synapse” on issues like global ischemia in rats.
But when her grandmother got Alzheimer’s, Genova’s fear led her to fiction. “I didn’t know how to march through her dementia,” she says. “That lack of understanding kept me at such an arm’s length from her.”
‘They’re accessible stories about people living with neurological conditions who are ignored, feared, or misunderstood. I see the stories as a vehicle for empathy and social change.’Lisa Genova, author
Genova’s first marriage was failing, and she was terrified of failing again: “I never wrote a word in my life, except scientific stuff.” She sent out 100 query letters to literary agents and didn’t get one nibble. In 2007, she self-published “Still Alice,” and sold copies out of her car. A positive review caught an agent’s eye, and Genova’s personal story had a happy ending: Simon & Schuster published her.
“This is a very strange career I’ve stumbled into,” says Genova, who recently went through “a difficult divorce” from her second husband. “They’re accessible stories about people living with neurological conditions who are ignored, feared, or misunderstood. I see the stories as a vehicle for empathy and social change.”
Hoffman, founder of Compassionate Care ALS, a Falmouth-based nonprofit that supports people with the disease and their families, has been a huge help to her, she says.
Hoffman was glad to help. “She’s been able to shadow me as I’m visiting families, and has seen up close and personal how people are navigating the complexities of living with ALS,” he says.
And he is grateful that she’s doing a book on the disease, and speaking at his fund-raiser. “She touches hearts,” he says. “Most people aren’t aware of what this journey looks like.”
Genova was one of them. She understood the science behind the condition, but had never met anyone who suffered from it, until Glatzer. He had bulbar ALS, which typically robs people of their speech before moving to their extremities, causing paralysis.
“The disease moves so quickly, so you’re presented with a choice,” Genova says. “What do you want to do with your life? Richard wanted to make this film, and that took my breath away. Not able to speak, he still had the courage to show up.”
He also wanted to get married. He and his co-writer and co-director on “Alice,” Wash Westmoreland, married in 2013 after spending nearly 20 years together.
By the fall of 2014, Glatzer was typing with his big toe. Genova told him she wanted to write about ALS. What did he want her to know?
“We had a few e-mail exchanges about ALS,” she says. A week before the 2015 Academy Awards, Glatzer suffered a heart attack. He watched Moore accept her Oscar from a hospital bed, and died a couple of weeks later, at 63.
Shadowing Hoffman, Genova says she has spent a lot of time “in people’s living rooms,” from those in the early stages of illness “to people on vents with tracheostomies and feeding tubes, requiring round-the-clock care.”
She’s speaking at the gala, she says, because she admires Hoffman, and now appreciates what families afflicted by the disease endure. “Ron is so committed to giving people the care they need at the most vulnerable time in their lives,” she says. “Our health care system doesn’t provide that, but Ron does.”
Her book will delve into the fear of death, but also the fear of losing the ability to communicate. “That’s a terrifying thought for people,” she says. “How many of us are walking around without telling people that we love them, or saying we’re sorry when we should? So my book is about what we say and don’t say. People faced with ALS often have the opportunity to heal some of the relationships in their lives.”
Despite the Ice Bucket Challenge, which went viral in 2014 and raised millions of dollars for ALS, Genova believes few people really understand it. “The world is now familiar with the three letters because of the Ice Bucket Challenge,” she says, “but very few people have a sense of what ALS looks like and feels like.”
Though no longer a practicing scientist, Genova feels her books contribute to the medical causes by educating people and raising money. “If you can get the public’s hearts and minds aware of an illness, the money follows,” she says. “You need to generate a conversation that can lead to a change in policy and funding, and that leads to treatments, and that leads to survivors.”
With her newest project on ALS, she says, “I hope to instigate the conversation.”
Lisa Genova will speak at the CCALS fund-raiser gala May 20, 6 p.m., at the Fairmont Copley Plaza. www.ccals.org/2016-galaBella English can be reached at firstname.lastname@example.org.