Novelist and neuroscientist Lisa Genova has a personal fight against Alzheimer’s disease and other afflictions, but it wasn’t always this way.
Genova authored the best-selling “Still Alice,” a self-published novel that was rejected by 100 literary agents before Simon & Schuster eventually picked it up. Later, the book was adapted into a motion picture that earned actress Julianne Moore an Academy Award. Before finding literary success, however, she was a researcher in a lab coat.
Her science background (Bates College, then Harvard University) equipped the Waltham, Mass., native with the tools to understand the mechanics of how Alzheimer’s disease affects patients, and the approximate timeline of its progression in most people diagnosed with the disease. But she didn’t really understand the disease — its human side — until she experienced it through the eyes of her grandmother, who died in 2002.
“I had to become a storyteller. I’ve now humanized the experiences” of people with Alzheimer’s, Genova told a capacity crowd Wednesday night at Symphony Hall, during Lesley University’s Boston Speakers Series. Earlier in the day, Genova spoke with students, faculty and staff during a visit to Lesley's Marran Theater where she gave a brief talk and Q&A.
“We have to be able to feel what it feels like to have Alzheimer’s,” she said, adding that, in the process of reading stories, “we learn about ourselves.”
Genova presented some sobering statistics: 5.5 million Americans have Alzheimer’s disease, and 50 million people worldwide have it. Though she is optimistic that researchers are only 10 to 15 years away from finding a medical intervention, today no cure nor preventative measures exist.
By age 65, she said, 1 in 10 people will exhibit symptoms of Alzheimer’s disease. By age 85, that number is 1 in 3, rapidly approaching 1 in 2.
“Look at the person next to you,” she said, eliciting laughter, perhaps nervous laughter. If that person gets the disease, “You’re the caregiver.”
Improv and empathy
The role of the caregiver is multifaceted, Genova indicated, showing a short video of a man named Kristian Rex, who is in the position of caring for his father, a once-strapping individual with forearms like Popeye, who has been humbled by the disease. Much of the video involves Kristian shaving his father’s once-chiseled, now-squishy face, being careful not to nick or cut his tender skin.
Even before the physical limitations emerge, the signs of Alzheimer’s — not mere forgetfulness about where one has left one’s keys, but finding the keys in the refrigerator — will necessitate the empathy and patience of caregivers as the memories of the afflicted begin to vanish.
“My wise and beloved Nana, she forgot who I was,” Genova said. But the disease progression had its humorous aspects, as well.
“My grandmother began approaching every attractive man in the grocery store,” Genova said, explaining a departure from Nana’s typical norms of behavior as Alzheimer’s attacked the amygdala and limbic system.
On another occasion, during an overseas flight, Genova’s grandmother became convinced that a car was following them. An aunt patiently explained that what Nana was mistaking for a car was actually a jet engine. Eventually the travelers fell asleep but, upon landing, Nana realized, “That little car kept up with us the whole time.”
The story — particularly the interaction between the grandmother and the aunt correcting her — contrasts with a better way to approach someone with Alzheimer’s, a way reinforced during acting classes Genova took.
In the exercise of improvisational acting or comedy, the idea is to respond to every offering with “Yes, and …”
“This is called ‘accepting the gift,’” Genova explained, offering an example of an actor saying, “I’ve got a magic carpet, want to go for a ride?” and another actor responding, “Sure. It’s cold here, let’s go to Tahiti!” rather than negating the scene by pointing out that it’s just an ordinary carpet.
By refusing to negate the reality of someone with Alzheimer’s, such as when a patient is expecting a visit from a long-dead relative, a caregiver builds an important bond. Rather than explaining that the visitor is actually no longer living, a wise caregiver might instead offer to fix a cup of tea while they wait together.
“‘Yes, and …’ is a path to empathy,” she said. “Don’t negate her reality.”
The practice of improv, Genova said, exploits the reality of “mirror neurons” that naturally build empathy, which she demonstrated by pausing for a sip of water. As she took a drink, mirror neurons allowed the audience to experience her thirst, at first intellectually through observation, but then instantly feeling the thirst themselves.
“Without adding empathy, my understanding of Alzheimer’s was limited,” she said, and building empathy — and creating a worldwide conversation about Alzheimer’s disease and other afflictions like amyotrophic lateral sclerosis and autism, is why she left the role of research scientist in favor of becoming a storyteller.
“Reading stories is like going to the empathy gym,” she said.