Filed under: Uncategorized | Tags: AIA, arthritis, ataxia, balance, blogging, Covid-19, economics, fasciculation, genetics, health, introvert, jim downey, Lake of the Ozarks, Machado-Joseph Disease, medicine, MJD, neurology, neuromuscular disease, pain, pandemic, peripheral neuropathy, restless leg syndrome, RLS, SCA3, science, self care, sleep, society, spinocerebellar ataxia type 3, vertigo, Wikipedia
Yesterday I spent the most I’ve ever spent on a glass of water. And I couldn’t be happier about it.
See, my wife had a business function at a conference center at the Lake of the Ozarks. She’s retired, but still somewhat active with the AIA in a volunteer/mentor capacity. We drove down, checked into the hotel, dropped off our bags, and changed to go to a reception we thought also included dinner, awards presentations, and a full evening. I had a glass of water to take my routine evening meds, and we went off in search of the reception.
All went fine, but it quickly became clear that our expectations for the evening were somewhat at odds with what was actually planned. This was the first time this particular event was being held post-Covid, and contrary to the pre-pandemic routine (we’ve attended a number of these events), there was just a reception and brief awards ceremony. It was good that we were there, since my wife is a previous recipient of the same big award, and she was happy to support the new recipients. It was also important for her to be recognized for her past work on behalf of the profession.
But it was all over by 7:00 PM.
Now, since it was just an informal reception, we’d all be standing around chatting (and then listening to the presentations) for a couple of hours. A couple of hours during which some of my MJD symptoms made it abundantly clear just how much had changed for me since the last time I’d attended such a function (pre-Covid). I wasn’t miserable, but I was painfully aware of just how fragile I was feeling (as noted recently). Just being around people was work — even moreso than my usual introvert reaction to such events.
So, as we walked back to the room from the reception, we talked about just checking out and heading home. In just 90 minutes we’d be back in our refuge, I could sleep in my own bed and get back to my usual routine. It meant forfeiting the room cost, though.
I decided it was worth it. One of the lessons I’ve learned in my life is that sometimes you just have to write off the sunk costs of a decision, and get on with things.
So we changed again in the room, gathered up our things, and left. Got home safe & sound, played with the cats, crashed. I slept well (which I never do at a hotel), and this morning was able to get in my usual sunrise walk and exercise routine.
This wasn’t entirely due to MJD, of course. Partially it was due to the weird almost-over-but-not-really pandemic reality we’re still adjusting to. My ‘extrovert batteries’ aren’t what they once were, due to lack of use. And there was a breakdown in communications as to what was happening, so our expectations were at odds with what actually happened. Had we known that the event was going to be over so quickly, we would just have planned all along to return home after it was over.
But I do have to say that the changes I have experienced due to MJD were a major factor. None of my symptoms were noticeable to anyone else, and we didn’t discuss it with anyone. Yet I felt it, and it took a toll.
Lesson learned, and adjustments made.
Jim Downey
Filed under: Connections, General Musings, Humor, Music, NPR, Science Fiction, Society, Writing stuff | Tags: Alwyn, blogging, Darrell Scott, Fat Tire, humor, jim downey, Lake of the Ozarks, music, New Belgium, NPR, Science Fiction, St. Cybi's Well, Tim O'Brien, travel, writing
At about 7:45 in this interview:
NPR: “I wonder: your original CD together Realtime is so beloved by your fans, does that make you just a tad nervous about how this much-anticipated follow-up might be received? Or do you just block that stuff out?”
O’Brien: “Ah, you know, I’m gettin’ over that.”
NPR: “But not yet? You’re still working on it?”
* * * * * * *
It was a hard week. He may have been only a dog, but his absence was entirely too distracting.
* * * * * * *
The other night I played supportive spouse and accompanied my Good Lady Wife to a professional meeting she had at the Lake of the Ozarks.
The Lake (as people in Missouri almost universally refer to it) is an interesting sort of place, from a purely anthropological perspective. Originally built to help generate electricity, it then became a tourist trap in the 1960s, then evolved into something of a Spring Break party spot for college kids throughout the state. It still has something of that reputation, though it has now branched out a bit into being a general purpose convention/resort area. I’ve written about it previously.
Anyway, like these sorts of meeting things go, the first night there was a cocktail party with an open, but limited selection, bar. I walked up to the bar, nodded to the nice very clean cut young man behind it, asked “Got any Fat Tire? ”
“Sorry, just domestic beer. ”
I blinked, a bit stunned.
He explained further “We don’t have any of those Belgium beers.”
* * * * * * *
At about 7:45 in this interview:
NPR: “I wonder: your original CD together Realtime is so beloved by your fans, does that make you just a tad nervous about how this much-anticipated follow up might be received? Or do you just block that stuff out?”
O’Brien: “Ah, you know, I’m gettin’ over that.”
NPR: “But not yet? You’re still working on it?”
O’Brien:“Well, there is a sort of a fermentation that happens in people’s minds, and I guess it happened in my mind too, that you know, what, can we do that again? Can we go back to that? And then, at some point I just said ‘well, you know, if we don’t try we’ll never do anything together again'”.
Scott: “To me the word is ‘fearless’. Putting it out there, and then, with the right ingredients it’ll probably turn into something edible.”
Something edible, indeed. Back to work.
Jim Downey
Communion Of Dreams 