'Every note played' by Lisa Genova

I love the Nelson City and Tasman District Libraries and their displays. That’s where I found Every note played by Lisa Genova. I’m not sure why the story of the slow and miserable death of one of the main characters drew me in, but it did.

 Richard, a famous pianist, has ALS, a motor neuron disease that slowly but surely paralyses him. It starts in his right hand – he can’t perform any more, but early in the book he can still play with his left hand, and walk.

The book observes with depressing details the loss of mobility. How much of our identity is connected to what we do most of the day? The piano was a passion and a drug that allowed Richard to avoid a closer look at his relationships. The loss of his ability to play piano creates unwelcome space for reflection.

Some of the scenes remain in my mind weeks later. Richard can still walk but has no use of his arms. He can’t open a door. Can’t eat as he can’t open the fridge. He can’t go to the toilet, can’t open the zip, pull down his pants, wipe his bum.  He is utterly dependent on his helpers, the book describes the relationship and admiration for relentlessly cheerful Bill.

Richard slowly but surely loses mobility, the use of his hands, his speech becomes slurred, and by accident his ex-wife Karina comes to his rescue in an utterly undignified situation as the phone detects her name rather than that of the professional helper.

Karina rescues Richard, becomes his carer yet loathes that once again Richard is in her way of doing what she wants, after she gave up her career to follow him and care for their daughter. Her unresolved resentment affects the way she interacts with Richard who now lives in her house, the former marital home, again.

 Both reflect back to a sliding door moment, the move from a place where Karina’s career was budding, to a place where he flourished and she hid behind baby and piano teaching. Yet, while Karina resented Richard for being away so often, his absence allowed her to dominate in their daughter’s life – he resents his lack of access and connection.

Resentment oozes between the two, much of the realisations they make on their own remain unspoken.

It’s a sobering book. A book that made me appreciate my healthy body. A book about a marriage, its demise and a kind of reconciliation after death. It’s not a joyful book, but I am pleased I read it, and if you can stomach being close to the slow demise of a competent person I highly recommend it.