Hogmanay is the Scottish celebration of New Year's Eve. Oh the party does indeed go on to New Year's Day, but the fun starts the night before.
Today, I'm celebrating, I hope, with a former student of mine. He is, as I type this, still languishing in the arms of Morpheus, but as soon as he comes up for air (to wreck the metaphor) I'll be taking him out for lunch. Or maybe dinner, we'll see how long the "waking up" bit takes. Someone who became my friend even as he became my student, in (oh my!) 1985. Yup, I've known him for quite a while.
My wife's mother is staying with us, this holiday; she asked me this morning, "How are you?"
I gave her my now-standard answer: "Same every day, different every day. Just like life."
Today's plans, beside seeing the friend out of our distant past... Bank; second bank, fortunately reasonably close to first bank (you'll notice that I don't think highly enough of them to capitalize them, in the common practice of my usual persiflage); grocery store to pick up prescription and a few other health supplies. Maybe, maybe, get Cat a new scratching pad (the parking lot for the Cat Place, I thoroughly dislike). Come home; send some e-mail, maybe twiddle some web stuff. Make tea. Maybe watch some Adventure Time, all episodes that I've seen before but I really enjoy them... Maybe I'll also catch some Z's during them as I'm waiting for Friend From The Past to wake up. All, of course, while I'm waiting for me to really wake up; which is itself always an ... interesting... journey.
And since, in the Old Church Practices today is still Christmastide, a musical gift for you. The "proper" (the "official text") of Christmas Day is the text "Hodie Christus natus est; hodie Salvator apparuit": Today Christ is born, today the Savior has appeared. Courtesy of our friends at SoundCloud, here's my setting of this text, performed by the choir and orchestra of St. Andrew's Presbyterian Church in Newport Beach, California, conducted by Dr. Larry K. Ball. With the composer (that'd be me) holding forth on the timpani.
Merry Christmas, happy Hogmanay, and a blessed new year to you, my friends. Enjoy some Christmas music while the season (and the year) lasts!
Monday, December 31, 2012
Thursday, December 27, 2012
Freedom (and not)
There are many, many, differences between wheeled chairs. Not just in their physical/mechanical makeup, but in the experience of being in them.
Yesterday, I went to Hollywood's Magic Castle to see a couple of my former students performing.
Oh, dang they're wonderful performers. I wish they had web sites, I'd send you to them. You want to see them perform. But that's another story. Anyway, back to the Adventures In A Chair...
The Magic Castle was built in 1909; it was, at the time, somebody's house. It's full of fascinating stories and interesting history, but that's for another day. What's pertinent to our discussion is that it's probably the most ADA-unfriendly place I've ever been. There's only one bathroom in the whole place that's even vaguely wheelchair accessible. But anyway, I spent the evening in my transport chair—the one that's a walker when I'm walking well. Which I wasn't, yesterday, so I used the chair as a chair. Not exactly sure why I was in that chair, I'm sure somebody thought "Oh, that'll be OK." But, alas, it wasn't. Being in that chair means that wherever I want to go, someone has to push me. Fortunately, one of the Castle staff did most of that pushing, including going up and down that nasty hill at the left of the above picture. Elevators? Don't even ask. Of course not. Nothing but stairs, and lots of nasty, nasty hills.
Lots of struggles, to get everywhere. And lots of simply being... left. Unable to move anywhere (see above under "not walking well, even with the walker"). So whoever was kind enough to push me inevitably just left me somewhere. Sometimes, that was OK. But not always... At the end of one of the shows, some Castle Guy snatched me out of the showroom before I had a chance to talk to my wife about where we'd meet/what we'd do. He took me back downstairs to the room one hangs in at the entrance (for those of you of A Certain Age, it's the room that held the bar you often saw in the Bill Bixby TV show "The Magician"). I had him leave me where I could see who was coming down the stairs, and where (I thought) people coming down the stairs could see me.
Not so much... I see my wife coming down the stairs, but instead of coming towards me, she headed somewhere else. So, here I am in my chair, wondering when my wife was going to come find me. She's maybe six seconds away (for someone who can walk), wondering where I am. And there I sit, unable to do anything. As I mentioned above, see above re: "can't walk even with the walker tonight." Well, eventually I got some Castle Guy's attention, and got him to take me outside where my wife was waiting for me.
We asked the valet captain to go get our car, Castle Guy went off somewhere, and ... I really don't know where my wife was, or went, or anything. Being in the transport chair, I couldn't even turn myself around to see what was going on. So here I am, this time outside in the cold (and it was quite cold), just sitting where I had been left. Again.
Let me reassure you, I found the "left alones" opportunities to practice some Zen detachment. There wasn't anything to "do," all I could do was "be," so that's what I did, and that was actually... OK. In a quiet, Zen way. But quiet Zen-ness notwithstanding, it did nothing to let my wife know where I was or me know where she was. And it was quite cold, outside, unable to move.
But that was yesterday. Today, wife and I celebrated our anniversary by watching Wreck-it Ralph. Wonderful, heart-warming movie. This time, I used the self-propelled wheelchair. Which was full of wonderful freedom. Gotta use the bathroom? No problem. I'll go there myself. Where's my wife? I know, I'll spin around and look for her. We're supposed to meet over there, yes? OK, I'll go there, and y'know, meet her.
I never thought a wheelchair would be such a liberating device. Boy, is it ever. Doors aren't designed for it. Thresholds aren't designed for it. Roadways aren't designed for it. But damn, is it liberating. And I'm especially blessed at being able to sort-of-walk the tiny distances required to heave the chair over the problem threshold or wrestle it/me through a problem door. And I'm definitely getting my "cardio" work done by pumping away at the wheels.
I love my walker. It's also liberating (and it's lighter than the wheelchair, when I have to lift it into/over something). When I can walk, that is. Which right now, I can't really. Fortunately, I can wall-walk around my own home, or all sorts of other places where there are walls or railings or other walking-assistance features, so I still am "able" to (monstrous air quotes) "walk" and I'm still doing so, when it's possible.
And I move much, much faster in the wheelchair than I do (huge air quotes) "walking." Another advantage.
I'm sure there are people—I used to be one of them—who will see a person in a wheelchair and think "Oh, how sad, how limiting."
Lemme tell you, given the non-walking that I do with my walking-assistance device... a wheelchair is neither sad nor limiting. And, most surprising, I have to tell you, it can actually be...
Fun.
But expect to have your creativity and humor tested to the max trying to use such things in a hundred-year-old Victorian building. Magic Castle provides quite the training ground for being in a wheelchair. I'm sure there are plenty of other facilities that are equally... um... challenging, let's say politely. Or, more to the point, that suck just as much or worse.
Oh well... at least, at Christmas time, it's quite nicely decorated. If you're going to trapped in a chair, having something interesting to look at does help dull the pain.
Of course since the Magic Castle has five bars, there are other ways to dull the pain. Which I don't use, so as not to pour incapacitating beverages into an already malfunctioning nervous system. But that is definitely another story.
Yesterday, I went to Hollywood's Magic Castle to see a couple of my former students performing.
Oh, dang they're wonderful performers. I wish they had web sites, I'd send you to them. You want to see them perform. But that's another story. Anyway, back to the Adventures In A Chair...
The Magic Castle was built in 1909; it was, at the time, somebody's house. It's full of fascinating stories and interesting history, but that's for another day. What's pertinent to our discussion is that it's probably the most ADA-unfriendly place I've ever been. There's only one bathroom in the whole place that's even vaguely wheelchair accessible. But anyway, I spent the evening in my transport chair—the one that's a walker when I'm walking well. Which I wasn't, yesterday, so I used the chair as a chair. Not exactly sure why I was in that chair, I'm sure somebody thought "Oh, that'll be OK." But, alas, it wasn't. Being in that chair means that wherever I want to go, someone has to push me. Fortunately, one of the Castle staff did most of that pushing, including going up and down that nasty hill at the left of the above picture. Elevators? Don't even ask. Of course not. Nothing but stairs, and lots of nasty, nasty hills.
Lots of struggles, to get everywhere. And lots of simply being... left. Unable to move anywhere (see above under "not walking well, even with the walker"). So whoever was kind enough to push me inevitably just left me somewhere. Sometimes, that was OK. But not always... At the end of one of the shows, some Castle Guy snatched me out of the showroom before I had a chance to talk to my wife about where we'd meet/what we'd do. He took me back downstairs to the room one hangs in at the entrance (for those of you of A Certain Age, it's the room that held the bar you often saw in the Bill Bixby TV show "The Magician"). I had him leave me where I could see who was coming down the stairs, and where (I thought) people coming down the stairs could see me.
Not so much... I see my wife coming down the stairs, but instead of coming towards me, she headed somewhere else. So, here I am in my chair, wondering when my wife was going to come find me. She's maybe six seconds away (for someone who can walk), wondering where I am. And there I sit, unable to do anything. As I mentioned above, see above re: "can't walk even with the walker tonight." Well, eventually I got some Castle Guy's attention, and got him to take me outside where my wife was waiting for me.
We asked the valet captain to go get our car, Castle Guy went off somewhere, and ... I really don't know where my wife was, or went, or anything. Being in the transport chair, I couldn't even turn myself around to see what was going on. So here I am, this time outside in the cold (and it was quite cold), just sitting where I had been left. Again.
Let me reassure you, I found the "left alones" opportunities to practice some Zen detachment. There wasn't anything to "do," all I could do was "be," so that's what I did, and that was actually... OK. In a quiet, Zen way. But quiet Zen-ness notwithstanding, it did nothing to let my wife know where I was or me know where she was. And it was quite cold, outside, unable to move.
But that was yesterday. Today, wife and I celebrated our anniversary by watching Wreck-it Ralph. Wonderful, heart-warming movie. This time, I used the self-propelled wheelchair. Which was full of wonderful freedom. Gotta use the bathroom? No problem. I'll go there myself. Where's my wife? I know, I'll spin around and look for her. We're supposed to meet over there, yes? OK, I'll go there, and y'know, meet her.
I never thought a wheelchair would be such a liberating device. Boy, is it ever. Doors aren't designed for it. Thresholds aren't designed for it. Roadways aren't designed for it. But damn, is it liberating. And I'm especially blessed at being able to sort-of-walk the tiny distances required to heave the chair over the problem threshold or wrestle it/me through a problem door. And I'm definitely getting my "cardio" work done by pumping away at the wheels.
I love my walker. It's also liberating (and it's lighter than the wheelchair, when I have to lift it into/over something). When I can walk, that is. Which right now, I can't really. Fortunately, I can wall-walk around my own home, or all sorts of other places where there are walls or railings or other walking-assistance features, so I still am "able" to (monstrous air quotes) "walk" and I'm still doing so, when it's possible.
And I move much, much faster in the wheelchair than I do (huge air quotes) "walking." Another advantage.
I'm sure there are people—I used to be one of them—who will see a person in a wheelchair and think "Oh, how sad, how limiting."
Lemme tell you, given the non-walking that I do with my walking-assistance device... a wheelchair is neither sad nor limiting. And, most surprising, I have to tell you, it can actually be...
Fun.
But expect to have your creativity and humor tested to the max trying to use such things in a hundred-year-old Victorian building. Magic Castle provides quite the training ground for being in a wheelchair. I'm sure there are plenty of other facilities that are equally... um... challenging, let's say politely. Or, more to the point, that suck just as much or worse.
Oh well... at least, at Christmas time, it's quite nicely decorated. If you're going to trapped in a chair, having something interesting to look at does help dull the pain.
Of course since the Magic Castle has five bars, there are other ways to dull the pain. Which I don't use, so as not to pour incapacitating beverages into an already malfunctioning nervous system. But that is definitely another story.
Sunday, December 23, 2012
Decisions
I was going to start this by saying "Wow..." but that word's about as far away from my current experience as any could be. At best, my experience rates a George Takei-esque "Oh my...."
I've been pretty much bedridden for several days. Yesterday, I was able to operate a computer for about ten minutes to roll a piece of music for somebody (a piece I had already arranged and completed, conductor just needed a couple of minor corrections, which were fortunately at the "click...click... done!" level of difficulty). And then I went back to bed.
I'm still in bed, today. I picked up this laptop at about 1:15, and as soon as I finish this post, it's getting shut off. Maybe... maybe... I'll make it into the living room and groove on the smell of the Christmas tree. Or maybe sit somewhere else. Or maybe I'll just lie back down.
Decisions, decisions.
None of my Medical Team has any idea where this inescapable fatigue is coming from. It's not just, or so we all think, "normal" M.S. fatigue, because there's so much sleeping involved. One guy thinks maybe I need to eat more frequently, maybe? Because I really am not eating that much, even by my current fading "standards." Nice idea, I guess, but I'm also currently living in a world of "maybe I'm going to be nauseated" and stomach does not particularly want to be used for anything more than water, right now.
Decisions, decisions.
So, here we are... day after the Mayan apocalypse was to occur, or so it was said.... but the Syfy channel is running Star Trek V, not once but again, which I guess is a sign of the End of Days in its own way... but if the world really is going to come to an end, the way I feel right now, I'm going to sleep through it. Probably. Maybe. Or not... who knows?
Decisions, decisions...? Like I actually have the energy to do even the deciding, much less do anything about my decisions.
Well, the laptop's running out of power, and so am I. Decision to continue is going to be made for me, in spite of what I "want" to do or not... which is pretty much the way "deciding" is going, right now.
I've been pretty much bedridden for several days. Yesterday, I was able to operate a computer for about ten minutes to roll a piece of music for somebody (a piece I had already arranged and completed, conductor just needed a couple of minor corrections, which were fortunately at the "click...click... done!" level of difficulty). And then I went back to bed.
I'm still in bed, today. I picked up this laptop at about 1:15, and as soon as I finish this post, it's getting shut off. Maybe... maybe... I'll make it into the living room and groove on the smell of the Christmas tree. Or maybe sit somewhere else. Or maybe I'll just lie back down.
Decisions, decisions.
None of my Medical Team has any idea where this inescapable fatigue is coming from. It's not just, or so we all think, "normal" M.S. fatigue, because there's so much sleeping involved. One guy thinks maybe I need to eat more frequently, maybe? Because I really am not eating that much, even by my current fading "standards." Nice idea, I guess, but I'm also currently living in a world of "maybe I'm going to be nauseated" and stomach does not particularly want to be used for anything more than water, right now.
Decisions, decisions.
So, here we are... day after the Mayan apocalypse was to occur, or so it was said.... but the Syfy channel is running Star Trek V, not once but again, which I guess is a sign of the End of Days in its own way... but if the world really is going to come to an end, the way I feel right now, I'm going to sleep through it. Probably. Maybe. Or not... who knows?
Decisions, decisions...? Like I actually have the energy to do even the deciding, much less do anything about my decisions.
Well, the laptop's running out of power, and so am I. Decision to continue is going to be made for me, in spite of what I "want" to do or not... which is pretty much the way "deciding" is going, right now.
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