Heart of the grey matter
Dionne Christian talks to the neuroscientist whose life is now fiction
Lisa Genova has battled a post-storm shutdown, which left her Cape Cod home without power or functioning WiFi and telephones, to make her way through the ice and wind to a Starbucks to talk on her mobile phone to a journalist in New Zealand at the precise time arranged. That is pretty damn impressive.
Or you might argue that Genova, 47, made the effort because she is an author with a book to plug.
Every Note Played is her fifth novel, a story about an acrimoniously divorced couple — the husband a famed classical pianist, the wife resentful at having put aside her jazz career — who are reluctantly reunited when he develops Amyotrophic lateral sclerosis (ALS).
It’s a form of Motor Neurone Disease but the story of Richard and Serena, and their making peace with each other, isn’t just another diseaseof-the-week misery.
Genova has good form when it comes to this kind of narrative.
Still Alice, her first novel, was self-published after being rejected many times. It became a New York Times best-seller and inspired an Oscar winning film of the same name. Julianne Moore won a Best Actress Academy Award for her portrayal of a Harvard professor who, at 50, develops early-onset Alzheimer’s disease.
“When the talk first started of making Still Alice into a film, I may have written Julianne Moore’s name down in a notebook and there may have been screaming when she said yes,” says Genova. “She’s phenomenonally smart, so talented and was so dedicated to making the film the best it could be.”
Rather than focusing on Alice’s illness, the film, like the book, homed in on her relationships with her family, played by fellow Hollywood A-listers Alec Baldwin, Kristen Stewart and Kate Bosworth. It’s a brutally honest depiction of what it’s like to have a degenerative disease.
That may owe something to the fact that director Richard Glatzer obtained the rights and, with partner Wash Westmoreland, adapted Genova’s novel for the screen shortly after learning in 2011 that he had ALS.
Genova recalls receiving long and smart emails from Glatzer — “the kind that are exciting to get from the director of the film of your book” — even though he had limited ability to type.
She says he never missed a day of filming and, by its end, could only communicate by tapping the big toe of his right foot on a specially designed iPad.
He died, aged 63, less than a month after seeing Moore win the Best Actress gong, which
I could find a lot of sympathy but couldn’t get to empathy.
she dedicated to Glatzer. Genova says she was honoured he wanted to make Still Alice his last film, describing the decision and outcome as remarkable and courageous.
“The film could have been a complete train wreck but they made it beautiful and for that, I am so very grateful.”
She, in turn, asked for Glatzer’s permission to write about ALS.
When Genova wrote Still Alice, she was already a successful neuroscientist, having obtained a PhD from Harvard University where she studied after graduating valedictorian from Bates College, in Maine, with a degree in biopsychology.
She wrote the book, indeed became a neuroscientist, because her grandmother lived with Alzheimer’s and she wanted to make a tangible contribution to understanding more about neurodegenerative diseases.
The more she read, the more Genova started to think there was a gap in the market.
“All the literature I was reading was written by outsiders looking in,” she says. “What was missing was empathy; I could find a lot of sympathy but couldn’t get to empathy — what it feels like to be in the shoes of a person going through this.”
So, Genova turned to fiction and was promptly told no one would want to read a book about a professional woman, living in a Boston Brownstone with what looked like a near-perfect family and Alzheimer’s disease because the market would be too small.
Genova decided to self-publish and was warned by one agent that it would kill her career. She did it anyway and, less than a year later, word-of-mouth led her to an agent and, a few days later, a six-figure contract with Simon & Schuster. Still Alice has now been translated into 25 languages and there are more than one million copies in print.
Genova had given herself a year to make a success of her new career or return full-time to neuroscience. She was just weeks away from this deadline when the Simon & Schuster deal came through.
Still Alice was followed by Left Neglected, Love Anthony and Inside the O’Briens — all had characters dealing with neurological disorders and all were New York Times bestsellers. Inside the O’Briens is rumoured to be headed for the big screen treatment — Russell Crowe and Nicole Kidman are reportedly signed up — while a Hollywood A-lister (Genova won’t say who) is reading Every Note Played.
Genova has been dubbed the Oliver Sacks of fiction and the Michael Crichton of brain science — she says both have influenced her writing — carving out for herself her own niche in fiction writing.
But Every Note Played is as much about the sacrifices made in relationships, and the resentments these can fuel, as it is about ALS.
“I might start with the disease but the book is always going to be about so much more. In Every Note Played, the relationship is very much an unresolved one and that offers the chance to talk about redemption and forgiveness. ALS serves as the catalyst to explore a universal human experience.”
Genova knows from past experience that when she writes about a condition, awareness grows and charities tell her they see a jump in donations.
It means she has no plans to stop any time soon.
“The books are vehicles for conversations that create social change and that helps to get rid of stigma, to reduce the isolation that people feel, to encourage hope and a familiarity with these things.”