Sunday, April 5, 2015

Not today

For those who follow such things, happy Easter! And for those who follow such things, a blessed Passover. For the rest of you... it's a beautiful day, so go out and enjoy it!

A picture from oh my, at least two years ago, one of the last times I was at Oneonta Congregational Church; one of the last times I could even get to somewhere I could take a picture. There are many things one can say about Oneonta, many of them beautiful, but wheelchair-friendly, unless you're coming in the main doors and just wheel in and sit, it's not. At all.
Two years ago, I could at least sort-of walk up stairs and around the chancel.

Not any more.

Today, at least.

Speaking of today, I won't have much to add. My hands are so cold, I can barely 25-air-quotes "type" at all. I put some pics and new music (well, new for today, seems a common theme, the "today" thing) on my web site, and that's basically all I got. I think I'm going to find myself a snack and pack it in to the bed.

Keeping fed... something that I'm discovering to be hugely important. I don't really get "hungry," so I need to eat by the clock or pay attention to non-hunger-as-such signals, like salivation as a key for "eat now." Keeping fed means that I can transfer in and out of the chair more easily, so that what even passes for "function normally" can actually happen. Don't eat, because I don't feel the need or feel a little queasy, something that happens a lot, and "simply living" becomes unpleasant, unbearable. Last night, for example, I kept an "emergency nutrition bar" at my bedside, and after eating it, albeit slowly but at least I did it... anyway, transferring into the chair from the bed and such became quite doable... but insufficient feeding makes everything work quite poorly, such as merely swinging my legs off the bed. Typing this, I took a break to get something out of the refrigerator and let it come up a little closer to room temperature; eating cold things, I don't enjoy any more. Frankly, I don't need excuses to keep me from eating, so once things warm up a bit, eat away!

Ah, Easter... time was, I played showpieces for Easter postludes, like the finale to Widor organ symphony #2. Takes quite a bit of pedal work, which ain't happening, today. Or for several years, but definitely, not today.

This seems a common thread, on the MS highway... Oh, how things used to be different, and even wonderful, but not...

Not today.

MS changes all the time. For me, things just keep getting worse. Oh, think of nearly anything, and it was possible and even glorious. Things change all the time anyway, but things that had been not just easy, but precious, aren't doable.

At least, not today.

Ah, expressions that arise all the time. And probably don't help.

And here they are...

Nothing makes me feel better.

I'll just run to the... yeah, "running." And the final, sad word pair... Can refer to anything, as simple as making something unusual to eat, or finding a blank CD to share some music, or go out to a meal, or go see a friend, or anything else that involves going "off property"...

Not today.

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