I am a commuter these footloose and fancy free days. Yes, that’s sarcasm. Care giving rides with me all the time. It knows when I’ve been sleeping, it knows when I’m awake, it knows that I’m trending badly and never good enough… Whee! Everybody sing!
Still, the time in the car lets me enjoy reading, by which I mean listening to audio books.
I just finished Every Note Played by Lisa Genova.
This simultaneously brutal and beautiful novel is primarily a call to compassion for those suffering with ALS, commonly called Lou Gehrig’s Disease.
It’s also an honest and sympathetic portrayal of care giving.
The story follows world renowned concert pianist Richard as the disease takes control of his life.
At the same time, it gives voice to his decidedly estranged ex-wife Karina. As the disease progresses, it falls to her to become his primary care giver.
The fictional Karina will become an immediate confidant to any real life care giver who reads or hears the story. Like most of us, care giving falls in on her. Her life is taken over by ALS, too.
The author brings out the full range of care giving emotion. There are all of the bitter, ugly feelings and daydreams. There are also the splendid discoveries and inner healings that would never come without the demand to take care of another in ways above and beyond “normal.” There’s painful honesty about playing the victim and blaming others or an out-of-our-control illness for life choices we did have and failed to make – or made poorly.
The story also brings in the perspectives and significance of others called upon to care for Richard; there’s Bill, a home therapist who found his calling by caring for a partner with AIDS; Grace, Richard’s and Karina’s collegiate daughter who must slog through the fallout of their divorce to reconnect with her father; and an array of medical and therapeutic specialists whom the author imbues with distinct personalities and gifts that they bring to bear as Richard’s need escalates.
Genova does noble work in articulating, through Richard, the point of view of the person receiving care. There’s the flood of gratitude for what seem like minor gestures, and the cold indifference or flaming hostility to big ticket technology that can add convenience but deepen feelings of imprisonment and humiliation. There’s the need for power to make some choices, from the right music to play to life and death decisions about treatment options.
By exploring Richard the caree and Karina the primary care giver with depth and honesty, the story makes their struggle to be at peace credible, dramatic and moving. If your tear ducts still work, they will find opportunity to represent as this story unfolds.
My minor quibble with the book derives from its core strength. It is a detailed explanation of ALS in story form, but the quest to get in all the info about the disease sometimes overflows the narrative and comes out like a lecture. A chapter that mentions a palliative drug cocktail lists the specific medications at least three times by name. There’s an infrequent but noticeable tendency to wander away from expressing the disease through what Richard is experiencing, thinking and feeling to sentences that seem disembodied and didactic. The info is worthwhile, to be sure, but sometimes intrudes on the connection with the characters that is the heart of the book.
But taken as a whole it is an excellent novel. It is a story in which the heroes are the villains and vice versa. Richard and Karina are each, as Charles Lamb said of Coleridge, An Archangel a little damaged. Although their story is driven by ALS, their struggle will ring true for family caregivers in any setting.