Pre-performance terrors

Yes, I know that I've done 38 commencements like tomorrow's before. Many of them in a gymnasium. Yes, I know I've played the processional for I-can't-begin-to-count-how-many weddings. I've even done huge processionals for 1,000-plus graduates in the same service.

I'm still freaking out about it.

Partially because that's what I always do. Partially because this year's is a year where my disability is worse than ever. I must confess, I did play the service music on an organ the other day, and everything went just fine, even with no pedal use. (Depressing, as always, when I tried to use the pedals. Maybe it'll work tomorrow, I try to reassure myself. I expect to be depressed again when I try, and go to the already-planned-for plan B. Which, frankly, is actually plan A.)

But I'm feeling completely drained. Just walking around the house, usually not that big a deal, is a big deal today. I successfully adventured to Kinko's to xerox some music, I made it just fine to the store to pick up dinner and cookies for the techies tomorrow—I always bring the techies cookies. They're always very helpful to me, I like thanking them. But if I thought there was any way I could bail out of this, I would. Of course I can't, and honestly, there's no way that I ever would—I'd rise up out of the grave just to play one last service. But on some level, I sure do wish it would just happen without me. It would break my heart if it did. But still... I just want to hide and let if all just be over.

This is very unusual for me. I get a case of nerves before every show, no matter what it is, especially when I'm the one who starts it. Yeah, the clock "starts" this show, but still, the prelude and processional are entirely on me.

I conduct (and even play the cymbals on) the recessional. But I only have ordinary performance nerves about that. Because the benediction cues me to start. Something else "pushes the 'launch' button."

Performance nerves and a constant adrenaline jag is pushing all of my "M.S. symptom" buttons. Am I going to survive the processional? I always have. Do I truly believe that tomorrow is going to be any different? No. I played the processional without pedals last year, too, and everything was just fine. To everyone but me. But, I perform for them, and everything is wonderful when they're happy. That's what's important. But still...

As of this moment: it's about 24 hours plus 15 minutes until liftoff. Ten-ish minutes later, after the prelude/processional/national anthem are over, I go backstage and sink into blessed, blessed, relief. I wait I have no idea how long until the diplomas are all handed out, head back to the pit, wait for the benediction, and away we go with the recessional—the easiest part of the show, because I don't have to worry about anything.

My favorite part of the show. Can't come soon enough.

Goodbyes; unexpected lessons

I said goodbye to some of my students today.

For the last twelve years, we've had an every-Friday anime-watching club. We watched all sorts of stuff... Brain melters, like Serial Experiments Lane and Boogiepop Phantom; full-on works of literature, like Gankutsuo; and laugh-riots like Ouran High School Host Club and, the way we concluded the year, Kamichu.

We had lots of fun, over the years.

Today, we ended the reign of the anime club; we took the wall scrolls down from the club room—excuse me, of course I mean "classroom". But I didn't just take my wall scrolls home; I gave them to the students. And I told them that continuing the club... was now their job.

Well, telling them that they were to have the scrolls—that caused many, very loud, squeals of joy.

The kids went off to lunch at a local Japanese restaurant. Then they came back to school, bearing a cake. I think it might have been someone's birthday, but mainly, they just wanted a cake. I made tea for them. Many laughs, lots of fun. Absolutely no darkness about how things were going to be different next year; they said they'd miss me, but we agreed that we would definitely be reconnecting. One of the kids even still has some of my DVDs; I told he she could keep them until we could find time this summer to go out to lunch, and she wholehartedly agreed.

Why do I bring this up? Because these wonderful young people have a wonderful way to say goodbye. Never was a head hung, never was a tear shed; yeah, it sucked that they had to say goodbye, but it was the end of the school year, and even fun things end. But that's OK, because there'll be a summer vacation, and then something new will be underway all too soon.

Well, we M.S.ers, we don't exactly have a "summer vacation" popping into our lives, providing something to look forward to. Not the way they do, at least... But we don't know the details of what's going to happen next [whatever], any more than they do. And yet, they don't simmer themselves in regret, or sorrow, or anything... except excitement about "what's next?"

It's sad when something wonderful ends. But something exciting and new awaits just around the corner.

A wonderful thing, such a beautiful lesson. Those whom I have taught so much this year, in our last moments together, are now teaching me.

There's a lot I won't miss, leaving this school. But the students... oh yes. Them, I'll miss. But to honor their last lesson... No regrets. A fun farewell, and then... what's next? Who knows?

We'll see. But ... we look forward to meeting "what's next." And when I can meet this particular challenge, as wholeheartedly as they do...

It's gonna be fun.

Wheelchair lessons

To my M.S.-accessorized companions on the Neurological Highway, who may be perhaps facing further accessorizing with a walker/transport chair/wheelchair... some musings on my travels with it/them last weekend.

I normally use a "translator," a walker/transport chair that's a walker (when I'm doing well) or a transport chair (when I'm not). As an experiment, at the Yale reunion I borrowed a standard push-it-with-your-arms big-wheel wheelchair, just to see what the differences in being relegated to a different device would be like. Your mileage may vary (as the saying goes), but for those of you who may find yourself needing to avail yourself of such devices, here's what I learned about the differences between them.

First, the translator in "walker mode" is vastly superior in locations that are only vaguely ADA'ed, or not-really-at-all ADA'ed. Some of the biggest impediments to my passage were one-to-two-inch "steps," sometimes as high as four to five inches. If you're still "walking" (if we can call it that), you can "step over" big lumpy things, and avoid divots/pot holes. In restaurants that haven't really left enough room between tables for wheelchairs, you can partially collapse the walker so it's wide enough to use but not as narrow as you'd "squish" it to fit into the back of a car, and you can thread your way through the tables. Of course, that doesn't work for anything in "wheelchair mode," but the translator at its widest is still is a little narrower than the push-it-yourself wheelchair—and width is a major inconvenience when you're trying to wend your way through a not-well-planned restaurant.

If you're stuck in transport chair/wheelchair mode, the ride is much smoother with the big wheels. The smaller wheels of the transport chair get stuck in, and stopped by, everything. Sidewalk-to-street wheelchair ramps are often very poorly executed, with huge gaps or lifts or gulches between the concrete of the sidewalk and the asphalt of the street, and the smaller wheels of the transport chair always get stuck. Always. The wheelchairs often have "step on it to pop a wheelie" pedals that enable a person pushing you to lift the front wheels over anything, and that's a great feature, but if you're by yourself, you obviously can't use them.

In both kinds of chairs, going backwards often works better. In any chair, that puts the larger wheels first, which often solves problems.

If you're wheeling yourself in a wheelchair, get gloves. Otherwise, your hands will get very dirty. Or scraped, or something else unpleasant.

And the motorized versions? I love them. I have one at school, I drive all over the place in it. But it's no good when the incline gets too steep (it really isn't designed to go "up hills"), they can get stuck in the mud and/or spin out, and more importantly: they're heavy. Nasty heavy. My translator is light and collapsible enough that my 14-year-old students can pick it up and toss it in the back of the truck. You can't just tuck one of those motorized suckers into the back seat of a car, or the back of a truck, you really need a device that attaches to the back of your vehicle that it rides on. They'll tell you that you can take it apart, and you can, but it's nasty inconvenient. You want convenience? You want a translator.

And speaking of off-roading: You want the translator in "walker" mode. Doesn't matter how bumpy the lawn (or whatever) is; as long as you can keep everything upright and on solid ground, you're fine. Big wheel chairs can sink into soft ground or otherwise get stuck; translator in walker mode, you can just lift up, reposition it, and keep going.

Don't use a wheelchair as a wheeled walker. My translator has bicycle-style brakes on its handles, and those are massively convenient; if you need to stop your forward motion for whatever reason, you can do it. And, if you're unloading it from your car and you want to make sure it doesn't get away from you (which it almost did, once, from me), you can. The big-wheel wheelchairs are not walkers. Something happens while you're "walker-ing" with it and you want it stop—you can't make it. It has brakes, but you can't reach them, and you're going to keep rolling forward until you hit something. Not good.

And in terms of what it "costs," energy-wise: Well, you're sure to get your cardio with the big-wheel wheelchair. Right now, I "walk" really crappy if I have to use shoes, but great in just stocking feet—the latter isn't always an option, especially on public streets covered in hot asphalt, mud, or medical waste—using shoes exhausts me very quickly. I went about as slowly wheelchairing myself as I did "walking," but that'd speed up if all I was doing was wheelchairing; practice makes perfect, as the saying goes. Even with no practice, I found myself tired but not significantly so after a day with the wheelchair. Using the translator as a walker, without shoes I can "walk" all day, but with shoes, I tire profoundly, and quickly.

The big-wheel wheelchairs have their advantages in specific situations. I like using them in museums; my wife and I look at things at completely different paces, so we can each look at things the way we each want to, and then she pushes me to the "next stop." They've got a wonderful turning radius—they spin in place, the transport chair can't. The ride is significantly smoother, they're much better when the roads/paths aren't really ADA'ed properly. But if you can walk at all, you want the translator.

Electric's the choice for distance and speed, but definitely not for off-roading! A good choice if you can leave it in the place you're going to use it daily, but if you want to transport it so it can transport you, you'll either need special equipment to facilitate that, or a very strong helper. And don't forget to keep it charged, and you may very well have to replace the battery more often than you like.

So that's that. The people who sell you this stuff will tell you certain things, medicos that prescribe them or teach their use will tell you other things, but you don't really understand them until you use them. By yourself. Without help.

And of course, my prayer for you is that you won't require these things daily... but I was very surprised by how easy it was to get used to them, and damn! They are wonderfully helpful. One can't wall-walk everywhere, convenient as that may at times be. And no matter what you may (or with luck, may not) need for transportation assistance... good luck!