Last month retired Inquirer sports columnist Bill Lyon met with editors Gary Miles and Kevin Ferris to talk about his ongoing fight against Alzheimer’s. An excerpt of that conversation follows.
I’ve been in purgatory for the better part of a year, held captive by Al — the face I’ve put on Alzheimer’s. It’s four years now since I was first diagnosed.
From time to time I am asked by people, “When will you be coming back?” That’s a good question.
To paraphrase Mark Twain, reports of my demise are greatly exaggerated. I know I’m at that stage in life where they’ve got the obit ready in the morgue. I say this with no bitterness at all because I know how the system works. Plus, I’ve had to write about 8,000 of those myself.
One reason for not writing was I had cataracts. That was an odyssey — it took 2½ months — but I had the surgery, it was a success, and I can see now. So that was a triumph. Of course, with Al there is always a trade-off of some sort. My tremors have increased in ferocity and velocity. That’s the main thing keeping me from writing.
I taught myself how to type as a sophomore in high school in 1955. You know, two fingers, hunt and peck. I got to be pretty good, and pretty fast, which pleased me greatly. I used to be able to make a typewriter sound like a machine gun.
But some months ago I found it was taking me longer to write. Then pretty soon I could barely put pen to paper. First, the paragraphs took a lot longer, and then the sentences. I couldn’t get it back. It’s writer’s block, and we all know what that is. But this was different because it was not only mental but physical. Literally physical. I couldn’t lift my hand up off the desk.
And it was so frustrating. I used to depart the Eagles pretty damn quick when I was writing my sports column after a game, so this was a hell of a blow. First to my ego. I couldn’t move. It was like I was in handcuffs. Or paralysis.
And it just got worse and worse, until finally to write a sentence would take the better part of a day. That was crushing.
So, finally, I gave up the ghost. I quit trying. I went into a fit of depression. Just stand in front of the TV and vegetate. I felt like I didn’t have the strength to live.
Finally, I thought I’d snapped out of it. But the tremors … they actually interrupt my train of thought. When I tried to type on a keyboard, the tremors were so bad it came out gibberish.
I am trying
Alzheimer’s robs you of your ability to communicate. And this is what makes Ethel, my wife, a saint. Somebody tells you something and you respond, or you try to, but there is a long pause — and it’s not because you’re not listening — that’s not it at all. Al is processing, and sometimes that takes maybe a second or two.
“You’re not trying.”
“Yes, I am.”
“Yes, I am trying.”
And it goes like that. It’s so frustrating.
Do I find myself getting angry? Only every other hour.
God’s waiting room
I still walk every day. I get six miles to the gallon on that thing — my wheeled walker with the seat. I’ve descended the ladder, all the way down from walking to a cane to now this.
Living where we live now, in assisted living, there is a whole squadron of those walkers. Being here, it’s one of the few times I’m one of the kids. And Ethel too.
People are very, very friendly. One guy told me, “Welcome to God’s waiting room.” He’s right.
But nobody here gives up. Much to Al’s chagrin. They take it all with such ease, such offhanded ease. I guess it’s an acceptance. It’s mostly being realistic, I think. You get to this stage in your life and you’ve got everything sorted out. And you decide whether you had a good run or not.
But before we get to there, I still want to work.
I want to write.
When first diagnosed, I said I wanted to write, well, until I can’t. That hasn’t changed.
Initially I felt sorry for myself. I was all in denial and went through the bargaining that you do. Then finally, I thought, “Enough of this.” You can either curl up in the corner and wait to die or you can get up on your hind legs and knock the crap out of somebody or something. I chose the latter. So all the writing since then has been keyed to fighting Alzheimer’s, because it’s such an insidious disease.
And now I look for other ways to fight. We’ve got a run coming up this month, Oct. 22, and we’ve raised a bunch of money.
One of the ways we socialize here, I call it the rodeo. After we’re done eating, some of us — and it’s become very spontaneous — we arrange chairs in a circle, 10, 12, 14 people and it’s just a bull session. The people who do the bull happen to be 100-some odd years old. Got a lot of those. If 99, you don’t need to apply yet.
So it’s just you and the like-minded. And it’s interesting to see the memory banks at work when you’ve got a bunch of octogenarians and up together, and they delight in each other. That’s a nice thing.
There is that old saying, misery loves company. There is misery, but you learn to adapt and adjust.
And you don’t ever, ever, ever, ever quit, which is our mantra for the crusade against Al: Resist. Persist. Never give up.
Bill Lyon (email@example.com) will be the honorary grand marshal for the eighth annual Intergenerational 5K/Walk to Defeat Dementia, which begins at 8 a.m. Sunday, Oct. 22, at Wesley Enhanced Living, 100 Halcyon Drive, Media, Pa. 19063. To register, visit www.runtheday.com/race/WEL5K.