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In Lisa Genova’s novels, tragedy and hardship reveal individual worth and the power of love.
By Emily Esfahani Smith
In 2007, Lisa Genova was selling self-published copies of her first novel, Still Alice, to independent bookstores from the trunk of her car. By 2015, that novel—about a Harvard professor suffering from early onset Alzheimer’s disease—had been adapted into a film starring Julianne Moore, earning her an Academy Award.
Today, Genova is a New York Times bestselling author of five celebrated novels chronicling the fate of ordinary people who are diagnosed with extraordinary and often fatal neurological diseases. Her novel Inside the O’Briens follows a Boston police officer suffering from Huntington’s disease. Her latest work, Every Note Played, is about a concert pianist whose life is turned upside down by a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease or ALS.
Genova’s characters live out our nightmares—they lose the ability to think and move, they forget the people they love, they suffer excruciating pain, and they learn that their children have inherited the same fatal disease. But Genova’s novels are essentially life-affirming. She wants readers to see that even amid horrible suffering and loss, an individual’s life continues to have value and worth.
Laying the Groundwork
Genova has spent her life collecting the material that would eventually inform her novels. She comes from a large extended Italian family from Waltham, Massachusetts, the blue-collar town where she grew up. Neither of her parents graduated from college—her mother stayed home to raise Lisa and her brother, and her father was a computer programmer. She recalls a childhood full of love and an especially close relationship with her grandmother, in whose home she often spent overnights.
Growing up, Genova didn’t want to be a writer; she loved science. In college at Bates, she decided to major in biopsychology. Her sophomore year, she took a class called physiological psychology, where she learned how the brain affects human behavior and psychology. Around the same time, she read The Man Who Mistook His Wife for a Hat, Oliver Sacks’ classic book about patients with unusual neurological disorders. Those two experiences hooked her: She decided she wanted to become a neuroscientist.
“If you think of the other organs,” Genova says, “the heart is a pump and the kidney is a filter. But the brain is so much more than a computer. It contains our personalities, our moods, our desires, our ability to remember—to walk, talk and think.”
After college, she earned a Ph.D. in neuroscience from Harvard University and planned to spend her career researching questions like what happens in the brain during addiction. But when she was 33, her life took a sharp turn after she and her husband divorced.
Seed of an Idea
Six years earlier, Genova’s beloved grandmother had been diagnosed with Alzheimer’s disease. As the resident neuroscientist in the family, Genova plunged into research on Alzheimer’s to help her family make sense of what her grandmother was going through. Although she found dozens of research papers and books written on the disease from the point of view of the doctors, caregivers and social workers, there was nothing detailing the experience from the perspective of the person with the disorder.
“As a granddaughter, I felt stranded,” Genova says. “I wanted to know what it feels like, from my grandmother's point of view, to have this disease, but there was nothing out there.”
That’s when Genova got the idea of writing a novel. Alzheimer’s patients often become alienated from their communities because people fear the disease. But Genova realized that reading fiction, cultivates empathy by absorbing readers in the life and experiences of others. Maybe she could humanize the disease, she reasoned, if she wrote about it from the perspective of someone who has it. At the time, she was still married and working full-time as a consultant, so her plan was to write the novel someday—perhaps when she was retired. Then her marriage started falling apart.
Break into Writing
Genova was a stay-at-home mom with a 3-year-old daughter when she got divorced, and the break forced her to re-evaluate who she was and what she wanted out of life. She asked herself what she would do if she didn’t care what anyone thought of her. The answer that immediately came to mind was write the novel. Supporting herself and her daughter with some money she’d saved, she started writing Still Alice at a Starbucks near her home outside of Boston while her daughter was at daycare.
A year and a half later she had a manuscript. She sent it to 100 literary agents who either didn’t write back or rejected it as too depressing. One of them told her, “You have a Ph.D. in neuroscience, why are you writing fiction at all?”
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Genova self-published Still Alice in 2007. She made it available online, sold it bookstore by bookstore, and offered readers free copies in exchange for posting online reviews. One day the book happened to catch the attention of a writer for the Boston Globe, who wrote a glowing review of it in the paper. That was Genova’s big break. Another author who saw the piece in the Globe introduced Genova to her literary agent, who sold the book to Simon & Schuster in 2008. When the publishing company released the book nationwide in 2009, it debuted on the New York Times bestseller list and was eventually translated into 37 foreign languages.
Lessons in What Matters
Still Alice and Genova’s other novels are fundamentally compassionate. As her characters struggle to make sense of what’s happening to them, they ask themselves questions like “If I can’t recognize my children, then what value does my life have?” and “If I can’t continue working as a professor or police officer, then who am I? Do I still matter?” and “Will my family still love me if I’m a burden to them?” Some of them contemplate suicide, concluding that life with Alzheimer’s or Huntington’s or ALS is not worth living.
“People ask me if it’s depressing writing about these hideous diseases,” says Genova. “And there is certainly tragedy and heartache, but I don’t find it depressing. I find it inspiring. I learn so much about how to live from people who are dying or coping with various diseases.”
One thing she’s learned is that these diseases may kill people, but they do not destroy their ability to lead meaningful lives. She thinks about an insight given to her by a friend who has Alzheimer’s disease. “Ten minutes later, he’ll forget, but that doesn’t mean the conversation didn’t matter,” says Genova. Or she thinks of the man who inspired her new novel Every Note Played, the codirector of the movie Still Alice, Richard Glatzer, who was diagnosed with ALS in 2011. By the time the movie was being shot in 2014, he had lost his ability to speak and move most of his body—but he never missed a day on set. He communicated with a text-to-voice application by using his finger or right toe to type notes onto his tablet. He watched Julianne Moore accept the Academy Award for best actress in Still Alice from his hospital bed and tragically passed away two weeks later.
“Your value as a human being doesn’t depend on your memories or what you can and can’t do or whatever disease you may have,” says Genova. That’s the lesson the characters in her novels learn. By the end of Still Alice, the character Alice no longer recognizes the people she loves, but she still can experience love and joy with them. In Inside the O’Briens, Joe, the police officer with Huntington’s, wants to kill himself, but his daughter reminds him that just as she and her siblings have learned so much from him over the years, now they need to learn their final lesson from him: how to live with this disease that he’s passed on to them. In Every Note Played, the main character, Richard, loses his ability to move and therefore to do the thing that makes his life worth living—play the piano. But he realizes before he dies that his real legacy isn’t his professional achievements but the forgiveness and love he gave and experienced in repairing the relationships he’d spoiled as he’d blindly pursued his career.
“All my books are about empathy,” Genova says. When she interviews people who have the diseases she writes about, she asks them what they ultimately want. They say: “I want to still love and be loved. I want to still matter. I want to be seen and heard.”
Emily Esfahani Smith is a writer and the author of The Power of Meaning: Finding Fulfillment in a World Obsessed With Happiness. She is also an editor at Stanford University’s Hoover Institution, where she advises the Ben Franklin Circles project, an initiative to build belonging and meaning in local communities. Her work has appeared in The New York Times, The Wall Street Journal, The Atlantic, The New Criterion and other publicationsVisit her website at emilyesfahanismith.com.