I have really enjoyed all of Lisa Genova’s novels, Still Alice and Inside the O’Briens being my favourites. Her latest, Every Note Played, now joins them.
This time neuroscientist Genova tackles ALS – Amyotrophic lateral sclerosis, also known as motor neuron disease, and Lou Gehrig’s disease, which destroys neurons, affecting the use of muscles in the body.
Richard is diagnosed when he is at the height of his career as a classical pianist. He has devoted his life to music, touring the world playing all the best concert halls, to the detriment of his relationships with his wife Karina and daughter Grace who is now in college.
The novel is told in the third person alternating from the perspective of Richard, and then Karina, who despite being divorced from Richard, ends up being his carer. This highlights the issues for the cared and the carer with this ghastly disease, and that ‘the story of their lives can be an entirely different genre depending on the narrator’.
Karina, escaped Poland, when it was under Russian oppression, to America. She met Richard when they were studying music, and is herself a great pianist. This was put aside when their daughter was born, and then when they moved to Boston for Richard’s career, and she ends up teaching rather than playing piano. ‘Regret shadows her every step, a dog at her heels’.
Richard is initially in denial, ‘wishing he could stop time, hiding from his future’, and as he steadily loses the use of limbs he swings from where his ‘morale is battered and defeated’, to having hope that there will be a breakthrough, a cure.
The family dynamics make this so much more than a novel about a man with a disease. Richard’s mother, who he was close to and supported him in his music, died when she was forty-five, ironically the same age he is diagnosed. His father is a sports-loving man who openly objected to Richard’s choice in piano over football, that his brothers excelled at and receive their father’s approval. This is repeated in Richard’s relationship with Grace.
Richard and Karina’s complicated and bitter relationship is also played out with all of the betrayal, resentment, blame, shame and regrets that they each hold. This is shared with Grace who sides with her mother reinforcing the gap between her and her father.
I didn’t know much about this disease, as was the case with most of the characters in the book, but have been made aware of all of the aspects of it – the factual, the physical – the emaciation, the ‘creeping metamorphis’, where ‘everything he needs feels invasive. The introduction of each new medicine, adaptive device, specialist, and piece of equipment comes with a corresponding loss of function and independence’ and the emotional side – the lack of control, the indignity, the emasculation, the demoralisation, trying to ‘suck it up’, the feeling of ‘why me’. Genova has such a knack at seamlessly weaving information into fascinating plots, that you don’t realise how much you are learning while you are engrossed in what is happening.
Reading over the sections I had highlighted to write this review brings tears to my eyes again, as it did many times on reading the book, as Richard recognises the life he has lost through his own actions. He is faced with this cruel disease, ‘the unfinished song, his interrupted life’, but it brings him a connection to his ex-wife, daughter and brothers that he never had. Ultimately it shows that the love of family is key.