RankFamily Archives: December 2004
Friday, December 3, 2004
Well, the gloves are definitely off in the fight against the impingement of ALS on my lifestyle. No, not things like volleyball and rock climbing. Things like showering and dressing. It takes me about five or six minutes to open a blister-wrapped package of aspirin, if I can do it at all. Though I may be retiring from pills taken orally altogether, following a gag-fest a few nights back brought on by trying to take a couple of sinus capsules. Linda has to open all my vitamin capsules now, and crushes any tablets for me. But even though I need to sit and rest after trivial activities, the development I am most concerned about is my music. I am having trouble getting my hands to work. They are very slow, I can't play scales with any speed at all anymore, but even more troubling is that my fingers are losing the control to play the chord fingerings that are ingrained. Weakness is also a problem, but reaching the notes with the fingers is most important. No matter how hard the fingers press, they have to be over the right keys. So I sense the window closing on my piano playing. It's not slamming shut, but I can see the movement. But again, I'm not giving anything up. I'm going to make ALS take it from me, and not without a fight. I'll play till I embarrass my bandmates, bore the audience, and can't press the keys anymore. Actually, there is a benefit of having your abilities reduced—you find out how to make simple ideas and minimalistic technique sound good. Well, sound ok. But if you have the choice between ALS and playing too many notes, I'd opt for the too many notes. Hey, what can I say? Hind-sight is 20/20.
The holidays are here, for all intents and purposes. And we have received a gift that surpasses all generosity. It is like a miracle of sorts. We had a contractor come in to give us an estimate on some work to modify the house for my accessibility needs, and it turns out that he is related to someone who has ALS. Well, our house is not in Architectural Digest's top 11,796,992 homes, and he recognized that in addition to making some changes for me, there was a lot that needed to be done quite apart from accessibility modifications. The funky blue walls, the bare floors in our bedroom, the warped counter-tops, etc. So he asked us to make out a wish list, and upon receiving it, he came in with an architect and took a look around. Well, one thing led to another, people started volunteering, and it turns out that for 5 days we'll be relocated while our humble domecile undergoes a major renovation. And when I say major, I'm talking "additional bedroom" major. I think they'll do everything on our list, which includes a total repaint, new carpet, squaring the door jambs, and a lot of other work, plus they've told us they have a lot of surprises in store for us. They did divulge the new bedroom, because they wanted our approval on that, but the rest they're keeping under their hats. We do know that between materials, financing, and physical help, about 150 people are involved. And we've met a grand total of three of them. The work will begin in just under two weeks, and we'll have what will essentially amount to a new home for Christmas. How do you express your gratitude for something like that? "Thank you" just sounds pale and scrawny in the shadow of this gesture of kindness all these people are doing for us. Well, that gives me something to work on between now and then. I'll probably post it here when I get it all worked out.
And by the way, remember its only a matter of time till I get my piano chops back, swallow pills (and pizza and hamburgers and ...) again, rock climb with my kids, speak intelligibly, walk to the mailbox, and other fun things. So be patient, but don't let your hope or faith fade. You just never can tell when a miracle will get dumped in your lap.
Posted by joe @ 10:53 AM CST