Lisa Genova is best known for the heart breaking novel Still Alice which describes a brilliant woman diagnosed with early onset dementia. Her fictional stories highlight diseases which impacts many individuals and their loved ones. In Every Note Played she has brought this awareness to ALS (also known as Amyotrophic Lateral Sclerosis, Lou Gehrig’s disease, or motor neuron disease) which impacts 2500 to 3000 Canadians (www.ALS.ca).
Every Note Played is the story of ALS and of Richard and Karina. Richard was an accomplished pianist with a busy life travelling to concerts. His marriage to Karina had ended. He was enjoying his single life when he started to notice difficulties with the mobility in his hands. He was diagnosed with ALS which “gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body” learning that “as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe” (ALS Society, Canada). Initially, he kept his disease to himself, cancelling concerts without sharing the reason, hiding it from his ex-wife and delaying the conversation with his university aged daughter.
As Richard’s disease progresses, he could no longer hide it and realizes needs help. He can no longer live alone, can no longer afford his apartment while paying for professional caregivers The impact of this disease is devastating, and at times humiliating, but it was exaggerated in Richard, a man who’s life was sharing a love of music through his role as a renowned concert pianist. As the disease progressed, he lost his ability to play the piano and slowly lost the ability to get dressed, feed himself and live independently. Despite their relationship issues, Karina became his full-time caregiver, attempting to hide her resentments and comes to terms with their past relationship issues as they both avoid talking about their divorce.
As well as educating about the disease, readers see the tragic impact on caregivers . It highlights the challenges of living in the United States where home care is not provided by government agencies but is self paid. The story makes Canadian readers reflect on the care offered through government funded home care services.
I had difficulty putting down Still Alice (dementia), Love Anthony (autism), Left Neglected (acquired brain injury) and Inside the O’Briens (Huntingtons disease) but the characters in Every Note Played did not impact me quite the same. They did not seem quite as real although as a health care provider, felt that it was a very accurate portrayal of a devastating disease. Reading Every Note Played inspires me to reread Still Alice and to encourage my palliative care colleagues to pick up a copy of the book.
Would I recommend this book? Absolutely! Anytime readers can learn through fiction, it is a book worth reading. This narrative will give readers an accurate understanding of a terrible disease and make them consider the role of caregivers. Although difficult on the patient, caregivers deal with loss, sadness, frustration and exhaustion. They need the help and support of others including family, friends and professional caregivers.
Thank you to Simon and Schuster for sending an Advanced Reader Copy of Every Note Played. Watch for a separate blog post of the event with Lisa Genova at the Waterloo Library.