My Alzheimer's fight: Never, ever quit

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Former Inquirer sports columnist Bill Lyon and wife Ethel — his “warrior woman,” who has battled cancer and emphysema — at their Broomall home. He was found to have Alzheimer’s disease three years ago.

First in a series.

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.

Introductions

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.

So far.

Al has no known cure.

Yet.

That "so far" and that "yet" are important from a psychological standpoint. We don't concede an inch to Al. Defy him at every turn. Fight dirty. Loose the dogs. No mercy.

Al is a sneak thief who comes in the night and steals away with something precious, the links to your past.

You wake up one morning and something is missing and you're not sure how or what.

So what do we do?

Resist.

And persist.

And never, ever, ever give in.

Behold the brain

So there it sits, perched atop your neck, squatting between your shoulders, looking rather like a small football, a squishy-looking three-pound marvel of engineering, tauntingly mysterious, hopelessly complex, breathtakingly alluring, a confounding maze of intricate wiring that houses more than 100 billion nerves - 100 billion - and trillions of synapses and neurons and connectors and they are all firing at warp speed and you can't help thinking that inside are lights of blinding colors that swirl and dance, like a giant pinball game busily sending out commands to you:

Stand up.

Sit down.

No, over here.

Now let's find your glasses.

Did you remember to take your meds?

 

What an altogether extraordinary organ. You stand before it in dumbstruck awe. Yes sir, there it sits, so inviting, so tantalizing, bidding you to come on in and browse. And just as you enter you are rudely shoved aside by some interloper.

Al.

Of course. He loves your brain. It amuses him to watch you flail about, trying to free yourself from his clammy, reptilian embrace.

Patience. Soon it will be our turn. Strap it on, Al. Strap it on.

Jackhammer serenade

It's called an MRI, short for magnetic resonance imaging. It goes inside uncharted territory. Like Peeping Toms. They shoehorn you inside this cylinder and it's like entering a cave or a packed elevator and you're probably better off closing your eyes and thinking sandy beaches, frosty drinks with little umbrellas, and bikinis . . . lots and lots of bikinis.

There's also the noise. Roughly akin to standing at a construction site while a chorus of heavy jackhammers bust up 10 miles of concrete.

To help you ease through it, picture Al inside the cylinder, with your washing machine set on high rinse, busting his mercy-pleading butt.

Feel better?

How long?

So you ask the man in the white lab coat what's the longest you've had someone live after the initial diagnosis?

Believe it or not, he said, smiling, 20 years.

I was 75 at the time, so I said 20 more would take me to 95 . . . so then, put me down for 96 (at least).

Teammates

I'm not in this alone. Far from it. It starts with a warrior woman named Ethel. She and I have been wed for more than half a century and have seen both sides of that extraordinary arrangement called caregivers.

She went first. Cancer. I told her that if the chemo took her hair I would shave my head bald and we could line up side by side and pretend to be bowling balls. So I retired from following athletic mercenaries around the world and we settled in to face off with cancer together.

And cancer didn't have a chance. My warrior woman is 5-1 and 90 pounds, but she has the heart and soul of a middle linebacker.

What caregiving and marriage teach you are that generally you get out of it what you put into it. You learn to say "I'm wrong" and you learn to say "I'm sorry" and you learn to say both of them together even when you're not. Especially when you're not.

Ruth Graham was married to the celebrated evangelist Billy Graham for 64 years, and she pretty much raised their five children while he was off preaching. She was asked if she had ever considered divorce.

"Divorce, no," she said. "Murder, maybe."

About three years ago, it was my turn. Al introduced himself.

And then my warrior woman came down with emphysema.

Didn't seem fair.

But, we decided, we're surrounded by three generations of family, plus a legion of friends, and when you add it all up, Al, we've got you right where we want you.

Why?

My intent is to write columns about my dementia, starting with a series of five that begin today and will run Sundays in Currents through July 3. I'll write more on an occasional basis after that. My hope is that the columns will be cathartic and perhaps be of some help to anyone else who's going down this same long and winding road. Let's gang up on Al.

My intent is to write until . . . well, until I can't.

Bill Lyon is a retired Inquirer sports columnist. lyon1964@comcast.net