“Everything begins and ends. Every day and night, every concerto, every relationship, every life. Everything ends eventually.”
The author, Lisa Genova is a neuroscientist and it shows (She is also the author of “Still Alice”, a book about Alzheimer’s and probably better known for its movie adaptation that won Julianne Moore her first Oscar). Her description of the disease and every step of its horrifying effects on the body is very fully described to the last detail. She dispels the myth that ALS patients live long a la Stephen Hawkings. It is a fast moving disease and most people die within 15 months of being diagnosed.
The disease itself is such a monster to contend with that there was no need to embellish anything in the book. As there is no cure for ALS, it was basically the non-human focal point in the story and served for a constant, slow creeping sense of doom and ending we all know is coming. The book takes us on such an intimate journey with ALS and the lives it affects.
Richard is a famous and talented pianist who develops ALS or Lou Gehrig disease. A disease that affects the motor neutrons in the body. He has sacrificed every other aspect of his life to become the amazing pianist that he is. He’s been a terrible husband, a neglectful father and now all his chickens have come home to roost. When his precious fingers become paralyzed he is forced to take account of his life and what’s left of it.
He eventually moves back in with his ex wife Karina who offers to care for him which is an offer that she can’t believe she’s making and he’s accepting. She offers to care for a man who cheated on her and was barely there for his family and the few times he was there, he practiced the piano 10 hours a day instead.
Genova does not present us with a sympathetic main character. She does not pull any punches on exactly who he is. He is an arrogant, self centered man who cheated on his wife, is part of the reason she never pursued her own pianist career and was a shitty father also. But there is something still deeply sad about seeing this once proud man stuck in a wheel chair with his whole life falling apart.
My problem with this book was how it was sold. The summary made me believe that the book was about a couple dissecting the demise of their marriage, so I went in thinking it was a book about a crumbled marriage and instead it was about an illness, as mentioned above.
I kept thinking the two main characters would at least talk about their marriage and what led to its end but what we were given were individual thoughts on their marriage with no actual dialogue that could have led to some kind of closure or understanding from both sides. As Richard’s ability to speak starts eroding I kept waiting for them to have a conversation and actually talk to each other while they still could but I never got that satisfaction.
“His neurons are dying, and the muscles they feed are literally starving for input. Every twitch is a muscle stammering, gasping, begging to be saved. They can’t be saved.”
I ended up giving this book 3 stars because the expectations I had based on the publisher’s blurb were not met. Even though I found myself ugly crying in public while reading the final 20 pages of this book, I still really enjoyed this book and would absolutely recommend. Read this book because it is heart wrenching and important. Then read the author’s plea at the end of the book for more donations towards ALS research. It’s hard to read this book and not go rushing off to donate, I know I did.