The Good News about Bad News
Step up! You’re next!
by Lauren Kessler
I've been writing a lot about death lately. Death, disease, dementia, frailty, old age. There's my book, Dancing with Rose, which follows me into the land of Alzheimer's when I take job as a bottom-of-the-rung aide at a memory care facility. There's a piece I wrote for newsweek.com about the hardscrabble life of the nickel-and-dimed women who work in eldercare. There's a story I wrote this spring for the L.A. Times magazine on "death with dignity," the end-of-life legislation that allows terminally ill people to hasten their own deaths with self-administered doses of legally prescribed drugs. (It's a law in my home state of Oregon and nowhere else.) There’s a story coming up in O (Oprah's) magazine on a program called "No One Dies Alone," in which volunteers sit in hospital rooms with dying "elderly orphans" in the last hours of their lives.
You might imagine the writer behind these projects to be morbid, morose and melancholic. Or just weird, like the Winona Ryder character in Beetlejuice, all gaunt and kohl-eyed and gloomy. Actually, I'm not. Well, I may be odd — that's for others to determine — but I am decidedly not somber. Although I am pessimistic about the things one would expect any sane person to be pessimistic about (the state of our health care system, U.S. incursions into places we do not belong, and Big Gulps), I generally think sunny thoughts. I am healthy and active and hang out with other healthy and active people. So what's up with all this death and disease stuff?
I think it's because one day, not all that long ago, I woke up and realized I was the next in line. You know the line I'm talking about. At the head of the line are your grandparents; then, behind them, come your parents (uncles, aunts), and finally, way back, lolling at the end, slacking off, paying so little attention that you don't even realize there is a line, comes you.
For me, for most of my life, the line moved so slowly that I don't think I knew it was moving. My great-great grandmother, known in the family as Old Oldie, held up the line for quite a while, living to 102. Then there was my great uncle Louie in Providence, the cigar store owner, who lived almost as long (smoking a stogie every day). My grandmother, feisty until the end, lived until age 94. After she was gone, her sister, my great aunt Jo, stepped to the head of the line and stayed there for quite a few years.
With that generation gone, I fully expected the line to stall for a long time, crowded as it was with my mother and father, my aunts and uncles. But then, within just a few years, my mother got Alzheimer's, and my aunt got sick, and my other aunt got sick, and then my father, my irascible, bullheaded, tennis-playing, octogenarian father, started to fail. How could that be?
This guy was a rock — and by that I mean hard, elemental, unchanging. He was strong and steadfast in body, mind and opinion. I could (and did) disappear from his life for years, resurface and find him just the same. I always knew where I stood with him, and where I stood was usually in the doghouse. Still, when he died two summers ago, my foundation trembled. Then his older brother, my indestructible, mind-like-a-steel-trap, 92-year-old uncle, followed a year later.
Which left me at the head of the line.
Which left me: Next.
Until all this happened, I had been basking in the luxury of not having to think much about death — my own or anyone else's. It's a luxury we've only recently started enjoying as a culture. Just a few generations ago, people were parents at 20, grandparents at 40 and dead at 60. Back not that long ago, people lived with, near or among the "elderly" — however that category was defined at the time. This was when oldsters were still a visible, every day part of the culture, not sequestered behind the wrought iron gates of Leisure World or Sunset Gardens or Harbor Pointe or Ridgeview Village. This was back when ordinary people — not just health care professionals — regularly encountered disease and death, when death was thought of as, well, part of life.
Now, watching that long line shorten in front of me until there was no buffer, I figured it was time to start seriously considering this whole circle of life thing. And the way writers come to terms with things, or at least the way this writer comes to terms with things, is to write about them.
The good news from the death and disease front? As I discovered writing the Death with Dignity story, taking control of the end of one's life, being the author of that final chapter, can be an extraordinarily powerful and deeply meaningful experience for both the person dying and the family. As I discovered writing the No One Dies Alone story, simply being present (literally and in the profound Zen way) can be an astonishing gift. And, as I discovered in Dancing with Rose, there is real life, vibrant, quirky, intensely experienced life, lived by those who have Alzheimer's. We are very much more than the sum of our remembered pasts.
It is not so bad to look this stuff right in the eye. Really.
LAUREN KESSLER, the editor of Etude, is the author of five works of narrative nonfiction, including, most recently, Dancing with Rose: Finding Life in the Land of Alzheimer’s. This column is adapted from a blog she wrote for powells.com in July.