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WALKING ON JUPITER

“If I forget thee, O Jerusalem, may my right hand forget her cunning.” - Psalm 137


People ask me, “How do you feel?”

This is a little different from the “Hi, how are you?” conversation opener we’re all familiar with. “How are you?” is the kind of question people ask without really expecting (or wanting) a lengthy disquisition by way of a response.

Sometimes, though, people really want to know what it feels like to be me these days. Assuming you are one of those people, I will try to tell you.

The best description is that I feel as though the gravity knob has been cranked up. Ever since I first noticed that things weren’t quite right four months ago, it just seemed as though I was heavier. Walking - even simply standing - took much more effort. Today, I feel as though I’m walking on Jupiter (if you can imagine Jupiter having a surface, that is). It takes all my effort to get from Point A to Point B, and those two points are growing closer together daily.

Bending over and picking stuff …

A FAREWELL TO IRONS

I play my pestilential game
Without a single speck of shame.
I hack my way around the course
With absolutely no remorse.
The fairways, I have rarely seen —
I struggle once I’m on the green.
My drives will hook, or maybe slice.
They do not follow my advice.
My shots all seek the woods and water.
They do not travel where they orter.
O, I’d forgo all worldly goods
If I could play like Tiger Woods
For just one game. ’Tis not to be;
I guess I’ll have to play like me.


I learned how to play golf under my mother’s exceptionally patient tutelage over a half-century ago. Since then, I have played at places ranging from municipal courses that were not much more than cow pastures to some of the most exalted cathedrals of golf: the Black Course at Bethpage, Pinehurst Number 2, and Medina, all of which have hosted the US Open.

This is not to say that my game was anything to write home about. My scores typically exceeded 100, peppered by the occasional pleasure of a round in the mid-90’s. Nevertheless, any given…

WHA’ HOPPEN? (PART 3)

It’s hard to imagine that Dee and I were looking forward to our appointment at Emory. You would think, given our nervousness at the potential of receiving bad, bad news, that we would've been dreading our visit there. But we weren’t. Perversely enough, we were almost eager.

The fact is, having the Damocles’ sword of uncertainty hanging over us was beginning to wear. It is nerve-wracking to know without question that something is seriously wrong, while at the same time to be unable to put a name on it... and to chart a forward course. Could whatever this thing was be fixed somehow?

We had, by now, pretty much completed our move into our new house in Woodstock, just seven miles up the road from our old neighborhood. We had also taken a ten-day road trip to visit our daughters in the Northeast. The driving was lengthy but manageable, and the only real difficulty I had was with walking any distance over a half-mile. Center City Philadelphia would have been completely unmanageable h…

WHA’ HOPPEN? (PART 2)

[When we last left our intrepid narrator, he was just beginning to experience that nervous, asshole-puckery feeling that comes with knowing that something is seriously wrong, but the wrongness does not as yet have a name: an inchoate sensation of dread.]

My internist had suggested that I visit my neurologist and get a nerve conduction test. OK, fine.

I had heard numerous stories about these tests, most of which had described them as some sort of mash-up between Weird Science and medieval torture. As it happens, my test felt totally inconsequential. A little electrode, a little zap, feel the muscle twitch. Afterward, I asked my neurologist whether the Big Bad Scary Diagnosis was a possibility.

“Well, it’s a possibility, but it’s extremely unlikely,” she said. “What I’d like to do is to order up an MRI of your cervical and lumbar spine, to see if something’s getting pinched.  I’m going to put down a tentative diagnosis of cervical radiculopathy.”

Cervical radiculopathy. I couldn’t help …

WHA’ HOPPEN? (PART 1)

For some time now, Dee had been subtly agitating for a household relocation.

We had been in the same oversized, overstuffed East Cobb residence for nearly two decades, during most of which time we were empty-nesters. There was more house than we really needed, except for those times when we would host family and friends for holiday or Sabbath dinners.

Two years ago, Dee took a bad fall, cracking her left hip and shattering her wrist. Suddenly, negotiating the stairs between the main level and our bedroom became a painful, physically challenging task to be undertaken twice a day: down in the morning, up at night. The idea of a house with a Master on the Main, in realtor parlance, started making a lot of sense. Who knew when the next physical challenges would be coming along, and who could tell how much warning we’d have?

I resisted the move. The whole idea of moving – selling the house, packing up our monstrous mass of detritus, finding another place to live – horrified me, especially …

GALLOWS HUMOR

You should be aware that the very first thing I said to my neurologist after he pronounced my doom was, “This may sound about as important as a fart in a hurricane, but... can I get a handicapped placard?“

Gallows humor? I has it.

Making fun of the unspeakable is, for me, a defense mechanism. It’s the way I cope with the inevitable feelings of sadness and fear that come with my condition. I’m not sure whether other people appreciate it, but it comes with the territory.

And you’ve got to have a sense of humor to deal with some of the bizarre synchronicities this universe throws at you.

F’rinstance: The very same day we got the Bad News, I found a message on my phone from the local cemetery, where my wife and I have a little bit of real estate. “Give us a call when you can, nothing urgent.“

Timing is everything.

Indeed, it was nothing urgent – just a request to set up a meeting to discuss their conversion from paper to digital record-keeping. But the timing was exquisite, amIright?

NAMING CONVENTIONS

When I decided to start this blog - my third! - I had to select an appropriate name for it. I decided on the one you see above, but several others were under consideration:

ALS well that ends well - Well, there’s only one way this ends – and it ain’t too good.

The Gehrig Chronicles - Lou Gehrig is the name Americans most often associate with ALS. But these are my chronicles, not his.

The Lame Duck Diaries - The term “lame duck“ refers to someone who is still in office but whose successor has already been selected. You’re still around, but you can’t accomplish much.

Writing a blog in these days of Facebook‘s ascendancy seems like a futile and stupid gesture. Nevertheless, I think there’s value in blogging. I have written on various electronic pages for fourteen years now, and I have my own opinions and motivations for doing so, not least of which are self-aggrandizement and time-wastage. But unlike people’s Facebook pages, blogs must seek their own audience. And I think there will be an a…