Richard Evans is a classical piano virtuoso, but not much of a husband or dad. That's fine with him as long as he can perform for audiences worldwide. But then his body betrays him. What starts as occasional weakness in his fingers is diagnosed as ALS, a degenerative disease that will shut down his body bit by mortifying bit. The man who needed no one is going to need help with everything.
Lisa Genova, the neuroscientist and author who riveted audiences with her tale of early onset dementia in "Still Alice," delivers another gripping journey through a dread disease in "Every Note Played."
This time she trains her masterful storytelling skills on ALS as it plays out in a fractured family.
"Eight months ago, his right hand held five of the finest fingers in the world. Today, his entire right arm and hand are paralyzed. Dead to him, as if they already belong to a corpse," Genova writes.
When denial no longer works, Richard is forced to move in with a most unlikely caregiver: his ex-wife, Karina, a thwarted jazz pianist with a trove of blame banked from years of marital discord. Between his infidelities and her deceits, the former family home is a hothouse for resentment. "It's as if she were programmed to respond to him, an unthinking and immediate ouch to his pinch."
Both exes see the value of reconciling their hard feelings, if only for their college-age daughter. But can they bring themselves to do it before it's too late? Time for "I'm sorry" ticks away as Richard loses motion and speech with each passing chapter. "He needs a magic pill and a time machine … to when Grace was six, he'd celebrate her 100 percents on spelling tests, he'd read bedtime stories to her and kiss her good-night."
Genova continues to refine her niche of using fiction to describe the scientific and emotional impact of disease on the stricken person and their caregivers. Between "Still Alice" in 2007 and this book, she has explored autism, Huntington's disease and a bizarre condition called "left neglect."
This time Genova enriches the medical story with the power of music, capturing in words what sound feels like. On a rare weekend break, Karina is entranced by a jazz pianist. "He dances across the keys, courting the notes, loving them, and the music is a gentle morning rain playing on a windowpane, delicate, lonely, longing for a lover, a childhood friend, a mother."
Such deft phrasing eases the reader's passage through a story that can't end happily.
As Karina begins to consider moving on with her life, Richard sees his end looming. Even with all that ALS has taken from him, he wants to live. So, finally, does Karina.
As the ultimate life-or-death decision arrives, Genova crystallizes the choice that so many real-life families feel when disease strikes:
"It's either his life or hers."
Maureen McCarthy is a Star Tribune team leader.
Every Note Played
By: Lisa Genova.
Publisher: Scout Press, 320 pages, $26.