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: Alzheimer's, Amazon, Connections, Feedback, Humor, Kindle, Marketing, movies, Privacy, Promotion, Publishing, Science Fiction, Violence, Writing stuff | Tags: Alzheimer's, Amazon, blogging, Communion of Dreams, direct publishing, feedback, free, Her Final Year, humor, introvert, jim downey, John Bourke, Kindle, literature, Monty Python, movies, privacy, promotion, reviews, Science Fiction, This I Believe, violence, writing
Today’s the official Third Anniversary for the publication of Communion of Dreams, and in celebration, you can download the Kindle edition today for free! Who doesn’t like free? I mean, yeah, sure, if someone walks up to you and offers you a free punch in the nose, you might not like it, but other than that …
Sorry I haven’t posted much lately. I was honestly surprised when I looked and saw that the last blog entry was ten days ago. I haven’t been ill, or traveling, or anything. But after I recorded the essay for “This I Believe” I was feeling very … quiet. As I explained to a friend:
It may be hard to understand, and I didn’t make a big deal out of it, but it (recording the essay) was actually a very hard thing for me to do. It wasn’t just any essay or promotional piece I’d written, not like doing interviews or anything. The essay was powerful because of the emotions behind it — I’m certain that’s why it has resonated for people. But that same source of power cuts very deep for me. Particularly after the stuff last month, it took a hell of a lot for me to come to terms with it all again, and to do so in such a public fashion.
You probably wouldn’t think so from reading this blog (or the book which came out of it), but I am actually a very private and introverted person by nature. My writing has always been a way for me to push myself out of my comfort zone, to force myself to be somewhat more public, more sharing. And it’s worked. Mostly. But there are still times when I just need to withdraw, to recover my energy and self-confidence. This last week+ has been one of those times.
Thanks for understanding. Now, go download that book if you haven’t already.
Jim Downey
Filed under: Art, Connections, Humor, movies, Writing stuff, YouTube | Tags: Apple, art, blogging, extrovert, introvert, jim downey, movies, Steve Jobs, Steve Wozniak, video, writing, www youtube
I’ve mentioned before that I am intensely introverted — but that I have “good extrovert batteries”. Meaning that while I in many ways dread large gatherings and over-stimulating environments, I can usually function pretty well in them for reasonable periods of time.
Anyway, saw this item this morning, thought I would share it:
Hope to have news about the site updates later today!
Jim Downey