Sunday, November 18, 2012

HUGE weekend

The past weekend was huge for me. Huge. Huge.

Last weekend, I made a presentation at the 55th annual convention of the College Music Society. I've presented for this organization before... I think this is my fourth time total, second time at a national convention. It's at least a little gratifying that I can still do doctoral-level, university-faculty-level, research. Original research, on a subject that's either not discussed or even mentioned in the books about this subject, or what minuscule information that is there just plain wrong in said books, because I was looking at actual, physical evidence that next to nobody knows even exists. This is real research. And doing the research, and presenting it, felt good.

Another surprise: This sort of thing wasn't always appreciated by the unholy machine—The Enterprise—and certain people in positions of authority within said machine, at the place where I used to work. They just didn't "get it." Time was, when I'd be truly hurt and angered by this. Nowadays... I don't really care. I did real work, I did good work. If people whose opinions I don't respect anyway don't understand the level of work I'm doing... I don't care, any more. I don't know whether I'm just in a different kind of denial or have actually gotten over the whole thing, but not carrying around resentment does feel good, for its own sake. The audience at my presentation spent a lot of time very evidently enjoying themselves. And that's good enough.

To celebrate, my wife and I went out to a real Japanese restaurant. Real Japanese. My wife an I were the only English-speakers there. It even looks like something you'd see in Japan...

The bad news... that tiny little aisle was not really wide enough for me to use my walker. The good news... the size of the place made "wall-walking" trivially easy. So, managed to make it to the end-of-the-hall bathroom easily enough.

And boy, was it ever worth it to eat there. Traditional, especially very traditional, Japanese is one of the easiest cuisines for someone on a non-dairy diet to enjoy.

Dang, was  it good.

More surprises... I was actually able to do all the driving—all the driving—myself, in my hand-control truck. The long hours of sitting got a little uncomfortable sometimes, and I did have to take a few minutes just to lie down in the bed of my truck (not to sleep, just to lie down "in neutral" for a few minutes), but the drive was doable. We broke it up... drive an hour, have lunch, drive a couple of hours, we're there; on the way back, drive a couple of hours, pick up some vegan pumpkin pie for the next day (which is amazingly good), drive an hour or so. 

And the love and patience of a beloved spouse makes even the potholes on the M.S. Highway bearable.

My wife did a lot of just-plain-pushing of my walker in transport-chair mode. She got more "cardio" than I did, this trip; well, at least I have lost a lot of weight, I am reasonably easy to transport. But I'm sorry she has to do so much transporting and so much of "together" is such a prisoner of "my fatigue may kick in at any moment" or "my bladder isn't going to accommodate that" or "I can't sit there for that long because it's going to be too uncomfortable" or... Thank God she realizes that when I say "I can't because it'll hurt or something will go south," she knows I'm telling the truth, not just trying to not do things that I'm not interested in doing. I always knew I was lucky to have her as a wife, but I had no idea how lucky until The Disease became an unwelcome guest in our lives together.

Well, what's next? I don't know... I'm still in the "I have to do a lot of lying down" mode, everything—everything—takes much longer than I expect it will, I almost fall down a lot, I have to stop what I'm doing and move to a comfy chair or full-on "hide under the covers" hide in the bed. Will I be able to accomplish anything that I want to accomplish—because I'm not comfortable about moving from "want to" to "plan to," I just can't trust whether I'll be able to do anything, at any given moment, even if last weekend, I somehow was able to... There was a lot of stuff I didn't do in San Diego, like explore the (I was told quite colorful and fun) neighborhood of the hotel, like sit somewhere and look at the ocean; besides make the presentation, I did nothing besides lie in the bed. Sometimes, to sleep. Sometimes, just to lie. I guess I feel good about what I was able to accomplish, but about what I couldn't do... I don't know how I feel. I haven't really settled on "how I feel" about the whole "I can't do [whatever]" issues, and Lord knows I don't know how long the "can't do anything, gotta lie down NOW" is going to continue/recur/whatever...

As always... we'll see.


Judy at Peace Be With You said...

Congratulations on your accomplishments.

Muffie said...

I'm thrilled for you! Giving a meaningful presentation at a national convention with MS is awe-inspiring. I did one of those (in education, of course, not your elite music)but it was before my MS really began to manifest itself. Lugging the laptop, being sure it interfaced with the projector in the conference room, and speaking for an hour was exhausting. So, I can't begin to imagine how you did it -- even if you did need naps!
It was so nice seeing you and your wife -- a lovely couple!!