Every Note Played by Lisa Genova
My rating: 4 of 5 stars
Lisa Genova writes novels about severe illnesses as an attempt to raise awareness and funds for research of them. I read Inside the O'Briens, about Hungtington's, and have seen the film based on Still Alice, which is about early-onset Alzheimers (and consequently gave my husband and I both more nightmares than we have ever had from any horror movie.) I hadn't quite made the connection to her previous work when I requested a galley of this novel; I was more focused on the classical pianist angle.
Richard is an acclaimed pianist. He is also recently divorced, a messy one, after his infidelities and some other secrets that were hidden. His wife and daughter are not in his life, his daughter having chosen her mother over her father, who often chose piano or his flings over time with her.
But as he is preparing for a tour, his fingers stop responding the way he expects and he is diagnosed with ALS. Eventually he has to figure out who in his family can help him as he loses the ability to care for himself.
This is a timely read with the very recent passing of Stephen Hawking, who lived far longer with ALS than most people do. Most people have the sentence of 3-5 years once they are diagnosed, and much of those years depends on which kind of treatment they get, or more accurately, which kinds of treatment they can afford. Since this is set in the United States, and Richard is limited to the insurance he purchased himself as a fairly healthy self-employed pianist, his insurance doesn't cover his expensive wheelchair, and certainly not the 24/7 care he would have required if he had elected to have the surgery that would have ended up with machines breathing for him. He could have had that surgery, but the rest of his body would still have deteriorated. There is no cure for ALS.
All to say that this presents some difficult decisions, and harder because by the time they are past denial in dealing with the disease, he has already lost much of his ability to communicate. No cure, no insurance coverage - these facts sometimes force a decision that may not be the best, but the options are pretty limited.
This is not a cheery read! It reminds me in some ways of the cancer novels I used to read as a pre-teen although I do think the author has a nobler goal, in raising money. I feel like some of the ending was less realistic, with many of the relationships coming to resolution. Not everyone gets to do that, whether they understand they are dying or not.
Another book about ALS that I read in the last few years is Home is Burning by Dan Marshall. It is a memoir, from the perspective of the son of someone with ALS, as he moves home to help his father as his body starts to go downhill. This novel shows more of the internal emotional struggle (and external physical struggle) of the person with the diagnosis, which I felt made for a richer read.
Thanks to the publisher for providing access to this title through Netgalley. It came out March 20, 2018.
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