Remember to say ‘I love you’
Neuroscientist learned about life from the dying before writing her latest novel
Author Lisa Genova wants you to understand that life is short.
Her new novel, Every Note Played, is the story of an internationally renowned pianist with ALS and his caregiving ex-wife.
“We all think we have forever. We will say it later,” said Genova, who will be reading from the book at Indigo bookstore in Vancouver on April 12 at 7 p.m.
“ALS sort of crystallizes that you don’t have forever, there’s an urgency. You are going to die soon. All of us are going to die soon, so this idea of get to it now. Say I’m sorry. Say I forgive you. Say I love you.”
As a neuroscientist, Genova has made a career out of combining neurological issues with fiction. Before Every Note Played, Genova had penned four New York Times bestselling novels, most notably Still Alice. Still Alice, the story of a Harvard professor who has early onset Alzheimer’s, became a film starring Julianne Moore.
The new novel begins with the main character, Richard, still mobile, but with only the use of his left arm. His right is paralyzed and he knows that soon it will also be rendered useless and his beloved piano will become just another piece of dust-collecting furniture.
Soon Richard’s disease progresses and he no longer can take care of himself.
Insurance doesn’t cover costs and he is burning through any savings he had. His embittered exwife Karina sees the immediacy of Richard’s plight; she takes a deep breath and invites him to move back into the house they shared as a married couple — not the easiest thing to do for an ex-wife that was not only cheated on, but cheated out of her own musical career.
“I landed on that one right away,” said Genova, about making Richard a famous pianist. “It was in the course of doing research. One of the things people were saying was that they were getting weakness in their dominant hand. I heard that over and over again.
“Both hands would go. I was thinking, like with Still Alice, you want to raise the stakes as high as possible whenever possible and still tell the truth.”
In Still Alice, the high stakes was the fact Alice was a brilliant Harvard professor. In Every Note Played, Richard is a musician faced with losing his musical voice.
“What happens when we take that away from him. Does he still matter?” said Genova, about reducing Richard to a motionless man.
What does happen is humility and humanity. Bottom line — Richard needs Karina to live and Karina needs Richard to forgive.
“It’s hard enough when you love the person to be the caregiver,” said Genova, about Karina stepping up. “In this story it becomes a really interesting situation, an opportunity to see these characters maybe wrestle with what they might be able to fix and heal and maybe there is some redemption and resolution for them.”
For this novel, Genova did her usual prep of months of research on the disease.
“I do my homework before I write a single word about any character, before I even think about a character. For ALS I read the medical textbooks. I read scientific literature. I read memoirs and nonfiction on ALS,” said Genova, who also shadowed members of the ALS clinic at the Massachusetts General Hospital and engaged with neurologists and scientists and researchers.
Genova also got to know people with ALS. She spent time in their living rooms and their hospital rooms.
“Those relationships were so meaningful so quickly,” said Genova. “People with ALS don’t have a lot of time. We talked about real intimate stuff and got close fast.” Unfortunately, death followed. “It’s sad to lose people,” said Genova. “One of the things this book in particular, more than any of the others, taught me is to begin to practice and become familiar with facing our mortality and being familiar with dying.”
“I have learned so much about life from the people I have known who were dying.”
One of those people was the late Richard Glatzer.
Genova got to know Glatzer in 2013 when he was co-directing Still Alice. Already in the throes of the disease Glatzer communicated his directions by typing with one finger on an iPad.
“That was the starting point,” said Genova. “I definitely am committed to writing stories about people living with neurological diseases and disorders, so ALS is a logical option. It was certainly on my list, but I had no plan to write about it until I met Richard Glatzer.
“Right before we premiered in Toronto I asked if I could write about ALS in his honour and begin learning from him what it was like to live with it. He said of course. At that point he had lost the use of both arms and he was typing with his big toe. That’s how we corresponded,” added Genova. “It all began with Richard.”
Glatzer died just a couple of weeks after Moore won the Academy Award for best actress in 2015.
Right now Genova, who is in the midst of a North American book tour, is working on a non-fiction book on memory and a novel about bipolar disorder.
“I’ m writing novels because I want to help people understand these really unfamiliar overwhelming, scary neurological diseases, these mental illnesses, these things,” she said. “Because we shy away from the diseases, we are really shying away from people who are trying to live with these diseases.”
ALS sort of crystallizes that you don’t have forever, there’s an urgency. You are going to die soon.