I’m a classical music lover. Let the words “opus” or “variations” appear in a title and I have to listen. I never learned to play the piano–we didn’t own one. I mastered several band instruments instead–clarinet, bass clairnet (a rich, amazing sound I still adore), saxaphone (alto and tenor) and something called a mellophone. So, this book caught my attention immediately.
Say the names Stephen Hawking, Lou Gehrig, David Niven—what comes to mind? How about the phrase “ice bucket challenge”? A.L.S.–Amyotrophic Lateral Sclerosis. In short, one of the most hellish things a human being can endure. [Sidebar: Because of the disease Rich Little dubbed David Niven’s voice in his last film. Yes, the diesase takes that away, along with every other muscle function.]
There are two stories here. The first, and obvious one is of Richard–a concert pianist, divorced from Karina and the father of Grace. At about age 45 A.L.S. strikes ending his career, his independence and, soon, his life. The second, less obvious one (isn’t it always?) is of Karina and her abandonment of life. When Karina goes to Richard’s aid and they decide he must “come home,” life changes for both of them.
Richard’s progression thru the horrors of A.L.S. is the stuff of nightmares. My personal dread is of Alzheimer’s, which took my grandmother away. Now I have a second–A.L.S. Both burden family and caretakers more than anyone ever wants, both rob the victim of all shreds of dignity and independence. But, Alzheimer’s at least, occasionally, has moments of “life.” A.L.S. eventually takes it all.
No matter his sins, I hated the thought of Richard never being able to play again. I screamed at the thougth of that music therapist intervention, too.! Dear God, No!! I wanted to shield Richard from any music but that in his memory. I wanted to surround him with beauty–fresh flowers, lovely silk pajamas, a lovely view, natural light, lovely works of art.
I knew Grace’s feelings–my Dad was robbed of most of his faculties and much of his movement after an operation went wrong–I knew the cringe-y despair of being near him. She couldn’t possibly mature enough in that short time to let bygones be bygones. Worst still, Richard would know that.
But it was Karina’s side that affected me most. Without forgiving, without forgetting, torturing herself with her own sins, she goes forward and takes Richard back. She cleans the shit from his balls and pumps glop into his feeding peg. She makes sure the door is propped open so he isn’t isolated. She does the unimaginable.
Her joy in jazz, her thoughts of her own stillborn career, have vanished over the years of being a good wife, a devoted mother. Her life, until Richard’s care takes over, is one of stupifying suburban ennui. The sort that led 50’s housewives to rise up and scream for liberation. But her world is today–not 60 years ago. Sin again.
“…her unfulfilled life has always been a prison of her own making. The fear…the blame…telling her that her dreams were too big, too impractical, too unlikely, too hard to achieve, that she didn’t deserve them….”
Juxtaposed with Richard’s A.L.S. her situation is solveable and she knows it. Guilt, shame, despair, anger–they overhelm. Finally the dam must burst and it does.
The last minutes of their life together give Richard and Karina a few nanoseconds of something on the joy scale–not real joy, something else. But it is enough. I despise the word “closue” and thank God it wasn’t in the book (I suppose I could have missed it, but I don’t recall it)–for that is ridiculous idea. You never close the score on the composition that is your life. You don’t magically heal and move on. You learn to crawl and then to walk and maybe, just maybe, to run again. That is the feeling I had of Karina at the end of this book. Not that she would magically have her forgotten career, but that she would start over with it. Pay new dues. Put in new time. Achieve new highs and fall to new lows. She would do it for herself, for Grace and even for Richard. But this time it would be mostly for her.
Reading this book drenched me with emotions too deep to articulate. No mere tears. Deep, within the tissues and sinews, were the sort of emotions I experienced her. Some dismiss books like this, but for me, books like this are a form of very useful and successful therapy–unleashing the fears and unsayable thoughts tormenting me in the day as well as in the night. I need them , search for them, hunger for them.
Book Clubs everywhere will want to read this. I hope those who don’t do book club, whether becasue reasing is too personal (as it is for me) or they are too introverted (me!) of they had enough of literature class in high school (me!) will also want to read it. Don’t dismiss it a s a suburban housewife book club book. It isn’t. It’s far too rich for a mere label.
Note: I listened to the unabridged audio version.
Every Note Played by Lisa Genova
Thank you to blogger Novels and Nonfiction for bringng this book to my attention in this post.
Check out an ice bucket challenge for A.L.S. here