Author: Lisa Genova
Publisher: Simon & Schuster
Copy: Courtesy of the Publisher
Lisa Genova is the bestselling author of Still Alice which has been made into an award winning film. It is the only Genova title that I have read but she is certainly one cemented on my watch list.
Every Note Played is an in-depth and insightful exploration of the insidious ALS, the disease at the heart of the Ice Bucket Challenge; suffered by Lou Gehrig and Stephen Hawking. ALS is a disease that doesn’t discriminate, it could strike anyone.
Genova pens a heartbreaking tale of ALS when it strikes an accomplished concert pianist, whose first love has always been the piano. On tour and in the prime of his life Richard heads to the doctor for what he thinks is a bout of tendonitis, only to discover that it’s the early stages of ALS.
Less than a year later and things are progressing faster than he would like. Denial is no longer an option and Richard is watching his life slip further away, and take his independence with it.
Karina is Richard’s ex-wife and the mother of his child. The two have a volatile relationship and now that their daughter is away at college they don’t speak at all. Karina is a piano teacher and not finding it as fulfilling as she once did but she is still paralysed by excuses and fear, afraid to pursue the career path that once excited her.
Every Note Played explores ALS and the effect it has on Richard’s body, and on his mind, but it’s also a story of making peace. Karina and Richard are both holding onto more than their fair share of resentment and anger about their failed marriage and they don’t seem to own any of the responsibility for what went wrong.
Richard finds himself unable to live on his own and the only real option is for Karina to become his carer and have him move back into the house they once shared. Their relationship is still strained and there is a lot of resentment, living in such close quarters gives them endless opportunities to work through their issues and find forgiveness but will such strong willed people allow themselves to bend that far.
Genova pulls no punches in her stark and heartbreaking portrayal of ALS and the devastation it wreaks on bodies. She shines a light on the 24/7 nature of care required and gives a nod to some of the other high profile personalities living with ALS. This story is touching as well as devastating. The long road that wound down a lot quicker than expected and the long road to forgiveness for a passionate couple who were once so deeply in love.
All relationships were assessed and analysed as Richard became more and more trapped inside his head, being cut off from reliable communication leaves him introspective. Terminal illness can make or break a family and in this case, I think there was finally some progress made, but it was still a long time coming.
Karina and Richard are both characters who were drawn in great detail, who we got to know intimately as they wrestled with their issues. They held resentments from long before Richard’s disease brought them back under the same roof but once they are back in their marital home and Karina becomes his carer they start to grow new resentments.
My favourite character in the whole story is Bill, he is one of the home health aides caring for Richard and he is the absolute embodiment of compassion. If I ever need a personal care nurse I want someone just like Bill. We learn the motivations for his chosen career and we get to know him. He is empathetic but he is also more than just a nurse. He becomes a friend but he also treats more than just the challenges Richard faces, his care encompasses the family. He is invested and makes sure that he can remain one of the carers after Richard moves out of his area.
Every Note Played is a story of finding the courage to forgive and to really live, it’s about learning the peace that you can find for yourself when you offer forgiveness. It is raw, heartbreaking and sometimes hard to read but at the same time it is well worth the read. Genova has obviously done her homework, the story is well researched, beautifully written and emotional. I love that she is shining a light on tough topics and helping to bring these diseases into conversation, to make them talking points and hopefully bringing them extra attention can assist in the long term goals of treatments and cures.
Definitely well worth read, I would wholeheartedly recommend Every Note Played.