What it’s like inside a body dying of ALS

Iwant you to read this book. I hope you find it just as depressing and painful as I did. The book is “Every Note Played,” by Lisa Genova. You may have read some of Genova’s previous books, particularly “Still Alice,” which leads you through the life of a woman as she chronicles her decline into dementia.

This book chronicles a similar decline, but into ALS — Amyotrophic Lateral Sclerosis, often called Lou Gehrig’s Disease, or “what Stephen Hawking had.”

But, where “Still Alice” led readers through the gradual loss of a university professor’s memory and reasoning, it stopped before Alzheimer’s Disease ended her life. It was sad, but not shattering.

“Every Note Played” pulls no such punches. It takes you through to the end, and beyond.

I suppose that’s a “spoiler alert”— don’t expect happy-everafter endings.

In this book, Genova writes about a world-renowned classical concert pianist, a man whose fame depends on entirely on the coordination of 10 amazing fingers on the keyboard. ALS causes progressive loss of muscle control — who better to choose as her central character than a concert pianist?

The narrative follows him from his first symptoms of atrophy — the index finger of his right hand, the hand that plays the melody line — to his whole hand, his left hand, both arms, his legs, his bowels, his ability to swallow his own saliva. And finally, his breathing.

Along the way Genova brilliantly recreates on paper the increasing awkwardness of his speech, as first his lips, then his vocal cords, no longer respond to the commands of his brain.

But, it’s also the story of the pianist’s wife. His ex-wife, angry, bitter, and resentful. Who realizes with horror that she is the only person who can take him in, who can be his caregiver.

You should read this book for two reasons.

First, because 100 per cent of us are going to die. Not necessarily with ALS. Statistics say that fewer than one in a thousand North Americans will get ALS. But, everyone will die. Period. And unless you get snuffed out instantly in a car crash or a heart attack, you are going to experience some of the same symptoms of progressive decline.

And you may need to decide how long to sustain life, when life itself has become intolerable. So this is about you, someday. And when you are dying, you will need a caregiver, someone who can be there more than a few hours a day. Health services provide professional help, but they can only visit on a defined schedule. You will need someone the rest of the time.

And you may need an advocate, who can argue on your behalf with impersonal and often uncaring bureaucracies.

If you’re not the person dying, you may well have to be that caregiver, that advocate, that decision-maker. Under normal circumstances, one member of every couple will die before the other. Guaranteed. At least half of us will become caregivers. Maybe more than half, when adults become caregivers for their parents, their siblings, even their children.

Our son didn’t die of ALS, but of cystic fibrosis. But, I can say from my own experience that Genova’s portrayal of watching while someone you love takes a breath, and another breath, and then doesn’t take another, rang absolutely true.

Reading “Every Note Played” will not let you escape the pain, the frustration, the bone-racking weariness of being a caregiver, when and if that time comes.

It certainly won’t give you any secrets for avoiding dying.

But, it may help you to realize, when you’re up to your eyeballs in a gut-wrenching relationship, that you already know something about what’s going on. It will not be totally unfamiliar territory for you. You are not alone.

From my brief participation in a caregivers’ support group, feeling alone may be the biggest problem facing caregivers.

They didn’t choose to be caregivers. They didn’t train for it. They didn’t do anything to deserve having their lives taken over. By individuals who are no longer who what they used to be. Who often can’t appreciate the sacrifices you’re making for them.

In what I increasingly think of as an inspired choice of wording, the United Church’s “New Creed”— not actually new but 50 years old this month! — starts and ends with the assertion, “We are not alone…”

If nothing else, “Every Note Played” will remind you, when your time comes to live in the valley of shadow of death, that you are not alone.

Jim Taylor is an Okanagan Centre author and freelance journalist. He can be reached at rewrite@shaw.ca. This column appears Saturdays.