Interesting gifts

Spent the day with a friend who's struggling with "I'm on the wrong road." Many... most... of my Yale class- of-'82 chums reported a similar problem... either "I'm in the wrong job" or "I'm working for the wrong people."

We M.S.ers, we have all sorts of stuff to deal with, physiologically/neurologically... if there's one thing we all share, it's increased sensitivity to—well, pretty much everything, and having just lived through it myself, I know all about "I'm on the wrong road" dissonance.

Personally, having to completely take myself "off the board" and go on disability, certainly came with a lot of issues that demanded (still demand) processing... but we do get a kind of permission to "press the reset button" because of our neurological-ity. It isn't necessarily easier, but when you're "accessorized" the way we are, when you say "Look, I just can't take this any more," it's somehow OK, because you've got The Disease.

But I've had friends who were (and alas, are) destined to come down with some sort of disease (fortunately not necessarily neurological, of course), because they were in such horrible dissonance with the road they were walking. That they felt they had no choice but to walk. Lady Adira, a character in Babylon 5, said that we say to ourselves that "we have no choice" to comfort ourselves with a choice we've already made, and aren't willing to change... and bad choices do cause a great deal of very, very painful dissonance.

Walking ANY highway is an interesting thing. We M.S.ers, we're gifted with especial sensitivity to any highway we travel... to every highway we travel. We are also gifted with societal/familial permission to say "I can't take X" without being somehow condemned for "lack of stick-to-it-ive-ness" or whatever. Somehow, we're permitted to say "No. Enough!" in ways we couldn't without the assistance of The Disease. Yes—the assistance of The Disease.

And yet, when you're on the wrong road, it hurts just as much, Disease or no Disease.

This gift... is a very interesting one.

Differences

Two things to talk about, today.

Thing 1: I spent the day with some organ builders, looking at an organ that I used to play, and that I (along with one of said organ builders) helped renovate. When I was last an organist at that church, it was working; it isn't now. The expert assessment of the instrument, about it's cause for non-playability:

The electrical system is bad. In another word, its nervous system is bad.

Well, I certainly know about that. Art imitates life. Or, more precisely in this case, life imitates life.

Thing 2: I spent some time yesterday talking with another friend from Long Ago. I first met him in 1985 when he was just a 9th grader; he's now a father of two, he has both a Ph.D. and a J.D., and a whole bunch of other very impressive accomplishments. He, apparently, had the same contretemps with The Academy as I had with my now-former employer, and we both had a great deal of sympathy for each other. And many a story that ended "Yup. I know what that feels like."

But one thing he said to me, I really want to share with my fellow M.S.ers: I told him that I was sad about what I was no longer able to do, specific thing upon specific thing upon thing that I used to be able to do, but for long list of reasons specific to each Thing, my experience of The Disease was preventing me from accomplishing said Thing. And how I felt that I wasn't able to—and there are the words I used with him and that I use a lot, nowadays—"accomplish anything."

I told him about a couple of other things I was involved in at the moment, and for which in my (I suppose I must be honest, perhaps at least a little over-inflated) opinion, I wasn't doing much (again, my words)...

And he stopped me, and said, "You're still making a difference."

So these are my words of encouragement for my fellow travelers on the Neurological Highway. "Difference" matters to the person for whom the difference is made. Your—my—opinion about its size means nothing. My friend still remembers one sentence I said to him, years ago, I don't even remember when I said it (but he certainly does); and he stressed how much difference it made to him, and that I was the only person who ever said something that encouraging to him.

So, my friends... pardon my language, but fuck this disease. You are still making a difference.

Your, and my, misbehaving nervous system is an irritant, but it means nothing. The difference that you make in someone's life is precisely the difference that they need made for them. The size of the difference that you perceive, the means and methods that you (I) use now, are different than they were, and that's where we get hung up. But none of those matter.

What we perceive as what we do for others doesn't matter.

The difference we make in their lives does.

Narrow escape

Took a quick jaunt down to the Rose Bowl today, to watch the space-shuttle-shuttle flyby.

Well, unfortunately, it wasn't as quick as I'd hoped... of course the "bladder alarm" went off, while I was sitting in the car, in the just-above-comfortable heat, waiting for the Magical Moment to arrive. That'd be the shuttle flyover, not my bladder, of course.

So, it's not crowded, but there are quite a few people around, and I think, Great... even if I use my P-cup and do it in the car, there are all these people around...

And then, it dawns on me: Every last person here is staring up at the sky. I could take my clothes off and lie naked in the bed of my truck, and nobody would ever see it, because they're all looking up at the sky, hoping to catch sight of the shuttle.

So, I make hasty furtive use of The Cup, praying desperately that this moment is not going to be the time the shuttle flies over and I miss it because I have to pay attention to what I'm doing...

Success. No missed shuttle flyover. I feel great about making it through this moment of challenge.

And then...

It happens again.

Apparently, B-san (Mr. Bladder) doesn't like committing. I thought you were done, I think... Nope, he says, I've still got a lot to give... and I want to give it now NOW NOW!

So, Furtive Desperate Use of The Cup, take 2... and again, I get away with it. Everyone's still looking at the skies. And I don't miss the space shuttle flyover.

A narrow escape. But a successful one. In not that many moments, the shuttle finally flew by, and it was totally cool. I was especially surprised at how... dinky it looks, when compared to a 747. And a final note—apparently, it took a long time to get to where I was waiting because it was flying by the Hollywood sign and the Griffith Observatory, time after time. Now, I'll admit, that's definitely a fantastic photo, you can catch it and many others on the web, but still... JPL and Caltech helped get, and keep, the bloody thing in the air, they could have done multiple flybys for them, too. After all, it's only fair.

But, their delay was my blessing, in my Battle With The Bladder. A small and quiet triumph, but a triumph nonetheless.

But the most fun of it was... it didn't just "fly by" where we were... it buzzed us. Dang, it was cool!