The genre of this book is “medial fiction.” Like Genova’s other books, she spares none of the ghastly details and the loss of control of bodily functions and dignity when living with ALS. Genova herself is a neuroscientist and her knowledge and research is impeccable. But part of her writing brilliance, for me, whether I was reading “Still Alice” or this book, is how she is always able to celebrate humanity.
Richard is a celebrated concert pianist. His tours and infidelities have put a strain on his marriage to Karina – also a world class pianist. But Karina’s real love is for jazz. When Richard decides they will be living in Boston, this brought Karina’s career to an abrupt stop. And after the birth of Grace, Karina gives up her dreams entirely and settles for being a full time mom and teaching piano lessons in their home. She will never be living in New York or New Orleans playing with the very best jazz musicians in the world.
After the divorce, Richard is living in a swanky downtown condo, playing in concert halls around the world, awing audiences with his “rare combination of emotional resonance and flawless technique.” Grace leaves for college and finally Karina can make her own life. That was eight months ago.
Now Richard’s entire right arm is paralyzed, his fingers like fat slugs at the end of his cement filled arm. While stumbling through some music composed solely for the left hand, Richard knows it is only a matter of time before he loses that arm too.
Genova takes us on a journey with Richard losing muscle after muscle. He can no longer live alone, and so he moves into Karina’s den. She is a reluctant care giver, but there is no one else. The proceeds from the sale of the condo are quickly eaten up with nurses, a “Mercedes” wheel chair, a bathroom lift, a computer program where Richard can point to the keyboard with the sticker on his nose, to communicate.
Genova is a masterful educator who schools us on extremely difficult medical issues. She gives us characters who are real and engages us emotionally. This is well worth reading.
Voice banking is a process that allows a person to record a set list of phrases and words with their own voice while they still have the ability to do so. This helps with communication when they can no longer speak.