With Latest Novel, Genova Hopes To Raise Empathy For ALS Sufferers

By: Debra Lawless

Topics: Local authors

Author Lisa Genova. COURTESY PHOTO

Lisa Genova of Chatham hopes her new novel, “Every Note Played,” about a concert pianist who has recently been diagnosed with ALS, will help people empathize with those suffering from the disease.

Story is such a powerful vehicle for empathy,” Genova said in an email interview last week.

ALS is short for Amyotrophic Lateral Sclerosis and is sometimes called Lou Gehrig’s Disease after the famous New York Yankees baseball player who died of the disease in 1941. Stephen Hawking, who died on March 14, was the most famous sufferer in recent times. In 2014 ALS was in the news with the Ice Bucket Challenge which raised $115 million toward research. Did this boost empathy?

“I think the Ice Bucket Challenge planted the seed. It placed those three letters—A-L-S—in the world’s consciousness,” Genova says. “But in terms of empathy, I don’t think it did much. You could dump your bucket of water, go have lunch, and continue on with your day and week and life without ever really imagining what it might be like to live and die with ALS. This is where I hope ‘Every Note Played’ steps in and makes a difference.”

And who wouldn’t feel the acute pain of a pianist losing his ability to do what he loves best?

“I chose a character whose career—and identity—would depend on fine motor function in his hands,” Genova says. “And in making him a rather successful concert pianist, his expansive life on a world stage would collapse into the restricted space of his apartment and wheelchair. So the stakes and opportunity for change would be enormous.”

Richard’s right index finger is the first to go numb. This is followed by his right hand and arm. “His motor neurons are being poisoned by a cocktail of toxins, the recipe unknown to his doctor and every scientist on the planet, and his entire motor neuron system is in a death spiral,” Genova writes.

Yet Richard is, for a time, resilient. And believe it or not, there is a solution for a pianist who lacks a right hand. It is Maurice Ravel’s Piano Concerto for the Left Hand. “That piece played an important role for Richard in the story,” Genova says.

Music permeates “Every Note Played.” This may have created more of a challenge for Genova, who has a Ph.D. in neuroscience from Harvard University, than writing about the specifics of ALS did. She began with a reading list on classical and jazz piano that included “Thinking in Jazz: The Infinite Art of Improvisation” by Paul Berliner, “Miles: The Autobiography” by Miles Davis, and “Journey of a Thousand Miles” by Lang Lang.

She went to concerts and heard Jeremy Denk play classical piano, and Joey Alexander and Wynton Marsalis play jazz. She interviewed several professional pianists.

And she enrolled in piano lessons. “It’s hard, but I love playing!” she says.

“Every Note Played” is Genova’s fifth novel with a neurological disease at its heart. Genova’s debut novel, “Still Alice,” stayed on the New York Times bestseller list for 56 weeks. The 2014 film stars Julianne Moore in the title role of Alice, a professor suffering from early-onset Alzheimer’s Disease.

Genova has also written about traumatic brain injury in “Left Neglected” and autism in “Love Anthony.” Her 2015 novel “Inside the O’Briens” was about Huntington’s Disease, a neurodegenerative disease dubbed “the cruelest disease known to man.” Genova begins her books by thoroughly researching a particular disorder through interviews with specialists in the field as well as meeting with patients and their families.

As Richard’s disease progresses, he realizes he will need a caregiver. A feeding tube and a wheelchair are in his near future. Complicating matters is Richard’s apartment – he lives on the fourth floor of a Boston brownstone with no elevator. He and his wife Karina are divorced, and on shaky terms. Their daughter does not know he is ill.

As the novel moves along, so does Richard’s illness. The average number of months a person lives with ALS is between 27 and 43. “Look at Stephen Hawking,” people say to Richard, trying to bolster him. Hawking was diagnosed with ALS at age 21 and lived to age 76. What was his secret, aside from top-notch care?

  “I think it had something to do with the will to live a meaningful life. His extraordinary imagination, curiosity, and brilliance were unaffected by the ravages of ALS, and he found great meaning in living,” Genova says.

And as Genova intended, the reader has, by the final page of “Every Note Played,” a great deal of empathy for Richard.

What’s next for Genova?

“I’m doing another TED talk in April in Vancouver and writing a nonfiction book about memory,” she says. “My next novel will be about a woman with bipolar disorder.”

Genova will speak at a literary luncheon at the Wequassett Resort in East Harwich on Thursday, July 5. The event is sponsored by Where the Sidewalk Ends Bookstore. The ticket price of $110 includes a luncheon, a signed hardcover copy of “Every Note Played” and a donation to fight ALS. For tickets, go to www.booksonthecape.com or visit the store.