A reader alerted me to this series that just wrapped up in the Philadelphia Inquirer, and I honestly don’t know of anything else out there quite like this. It is a collection of weekly essays by fabled Philadelphia sportswriter Bill Lyon—six time finalist for the Pulitzer, two-time Emmy winner, inductee in the Philadelphia Sports Hall of Fame—in which he recounts, with riveting clarity and candor, his battle with Alzheimer’s.
In the winter of 2013, with the February cold bone deep, I sat in one of those cramped and sterile little examining cubicles in the Penn Memory Center and listened to the man in the white lab coat ask if I knew what Alzheimer’s was.
Death by inches, I said.
And you have it, he said.
I’m pretty sure the world stopped at that moment, and then there was a roaring sound, like a freight train barreling through my brain pan. I sat there, frozen, and I remember thinking what a crummy job this poor guy’s got.
I call him Al, for short. We’ve been joined to each other for going on three years now. We’re a popular couple – more of us elders join the ranks every year, Alzheimer’s being the name that we used to use to describe “natural causes.” Or, as my grandmother used to say: “Parts just wear out.” (Maude Murphy’s parts lasted 95 years, and I hope fervently that she has passed along that DNA.)
Al is an insidious and relentless little bastard, a gutless coward who won’t come out and fight. Instead, he lies in ambush in my brain, and the only way I can put a face on him is to look in the mirror.
So what do you want to do? the man in the white lab coat asked.
I should very much like to kick Al’s ass, I said. Which was a sweeping response woefully short on details but long on passion and sincerity.
Al is undefeated, you know.
You need to read the rest. All the installments are archived on that one page, including a fascinating essay by his doctor, explaining how it is that someone in Bill Lyon’s condition can write so clearly and eloquently:
So how does he do it? Here’s my take:
What makes the answer to this question so compelling is that he’s doing this even as he’s entirely aware of his symptoms. Some would rather die than live that way. Bill Lyon shows it’s possible to be aware and to live well.
Many patients don’t perceive that they have significant cognitive problems or know what lies ahead. Some observers think this ignorance is a form of bliss, though family members will tell you it usually adds to the strain of coming up with a plan to live well. They even have to practice “loving deceptions.”
“I feel like a child,” he once told me. “Stigma,” I thought, and I prescribed sertraline to treat this anxiety and frustration with his symptoms.
Technology has helped, too. His cellphone has an app that shows his family where he is.
Even more effective than the drugs and the apps is the world he made for himself.
All brains live in a world. My philosophy colleagues call the brain-world connection the mind.
I first met Bill Lyon’s world at his new patient assessment. The whole family includes not only his wife, but his children, their partners, grandchildren, a great-grandson, and a dog. They all live close by. Next door, even. But of course, a sportswriter knows it takes a team to win.
That team decided to face up to the problem and take action.
Read the whole series. Share it with someone you know who is facing this disease—or caring for someone who is. It is an affirmation of life, and a gift of hope. And for that reason—along with the courage, clarity and profound honesty with which it is written—this series should give Bill Lyon his long-overdue and well-deserved Pulitzer.
It won’t be a pity prize. It will be for an achievement that has served a great public good—that has done what all great journalism does: shedding light on places of darkness.
God bless you, Bill Lyon. And thank you.
Photo: Clem Murray