“Every note played is a life and death.”

Lisa Genova is a brilliant writer who uses her real world neuroscience degree to educate and entertain (if you can call these stories entertaining) a mass audience about a variety of brain disorders. Her most famous novel, Still Alice, tackles Alzheimer’s and was turned into a movie but she has also written about Huntington’s, Autism and unilateral neglect. Her latest novel, Every Note Played, focuses on the cheery topic of ALS, or Lou Gherig’s disease and its March 20th release date feels eerily timely next to Stephen Hawking’s March 14th passing.

“Jazz improvisation is a speech without a script. It’s twelve notes and doing anything she pleases. There are no rules, no boundaries. Verbs don’t have to follow nouns. There is no gravity. Up can be down.”

Three years ago Karina and Richard, a famous concert pianist, divorced following years of resentment and growing apart. With their only child, a daughter named Grace, off in Chicago for college there is little reason for the Boston couple to cross paths but when Karina overhears Richard has cancelled his tour due to illness she pays him a visit. He downplays his disease and Karina leaves pretty quickly. However, months later, his ALS has progressed and he is rapidly loosing mobility, he gets locked out of his apartment and accidentally calls Karina instead of his home health service. Alarmed by his deterioration Karina invites her ex husband to move back into their home so she can help care for him.

Karina and Richard alternate narration and it is a fascinating look between a care provider and a care recipient. Particularly when Richard becomes less verbal and his portion of the narration is from the perspective of someone who is nearly locked into their brain. This dual narrator approach is made more interesting by the strained dynamic between ex husband and ex wife. It may sound unrealistic that the ex wife of a womanizing man would martyr herself to caring for him as he loses his ability to eat, talk or clean himself but the scenario is presented in a way that doesn’t seem so far fetched.

ALS, like Huntington’s and Alzheimer’s, is a horrific disease and there is no happy ending for its victims. Genova is a skilled writer and manages to put human faces to diseases that a lot of people have little experience with. If you can stomach the heartache this is a must read.