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: Amazon, Art, Book Conservation, Pandemic, Plague, Publishing, Science Fiction, Society, Wales, Writing stuff | Tags: Amazon, book conservation, bookbinding, Communion of Dreams, Covid 19, Covid-19, Kickstarter, Koob, Legacy Bookbindery, life, pandemic, St. Cybi's Well, writing
As I noted a couple of months ago, I found a printer to produce the pages for a hand-bound copy of St Cybi’s Well. This is a photo-essay of the process of turning those pages into finished books. This is not intended to be actual instruction on how to bind books.
If you would like your own hand-bound copy of St Cybi’s Well or Communion of Dreams, click the links. Each edition is limited to just 53 numbered copies, plus two Artist’s/Author’s proof copies. At either link you can also order one of the remaining copies of the Amazing Koob, as well as signed paperback copies. And of course, you can always download the books from Amazon (remember, they’re free on the first of each month).
That completes the next-to-last phases of my Kickstarter. The final phase will be the design and completion of the leather bindings.
Jim Downey
Filed under: Amazon, Art, Bipolar, Book Conservation, Brave New World, Emergency, Feedback, General Musings, Health, Kindle, Pandemic, Plague, Preparedness, Society, Survival, Wales, Writing stuff | Tags: bipolar, book conservation, bookbinding, Covid 19, Covid-19, health, Legacy Bookbindery, life, mental health, pandemic, St. Cybi's Well, writing
So, about a year ago I made a fairly big change in my life, and posted the following to my professional website:
September 1, 2019 – Please note: due to increasing difficulties with arthritis in my hands, I am curtailing how much conservation work I am doing. Henceforth I am prioritizing established clients and works of notable historic value.
Yeah, this has been a developing problem for me the last few years, limiting just how much detailed work I could do. It’s gotten to the point where I can typically do only a few hours a week of the difficult, careful work required. Other kinds of hand work isn’t nearly as demanding, unless it involves shock to my hands, so for the most part I’ve been able to continue with the rest of my life with minimal difficulty.
So, after posting that, I started referring new queries about conservation work elsewhere, and focused on my established clients and institutional work.
Then Covid-19 showed up.
After we got a good handle on just what that meant, I stopped meeting with even established clients. Because while my health today is just about better than it ever has been, I am nonetheless at very high risk of having a very bad case of C-19, should I catch it. Frankly, I probably wouldn’t survive it. So I’ve been telling clients that things can wait until there’s a safe & effective vaccine, and I’ve gotten my dose(s) of it.
Which is fine, because there’s rarely a reason to “rush” conservation work. And besides, I had a backlog of work waiting for me in my safe, as I always have.
Well, had.
Last week one of my institutional clients popped by to collect the last couple of items I had to work on. Just a brief, masked, socially-distanced visit. Previous projects had been mailed off, or likewise returned to clients with minimal contact/interaction.
And now the cupboard is bare, so to speak. For the first time in literal decades.
I mentioned a couple of months ago that Covid had likewise changed something else for the first time in decades: my usual mild bipolar cycle. That’s still disrupted. Well, honestly, it’s almost nonexistent. I don’t really have any sense of change currently; I’m in just a new, vague limbo which is neither good nor bad. It’s an odd feeling. Like so much, these days.
Anyway, to ‘run out’ of conservation work isn’t really a problem for me. We’re fortunate enough to be financially stable at this point in our lives, and I had been accounting on much reduced income from conservation for a while.
And, in a way, it’s good. Just this last week I also got the ‘proof’ of the printed pages of St Cybi’s Well, so I can do the hand-bound editions of that book soon. Here’s the proof copy:
That’ll keep me busy for some time.
And beyond that? Well, reinvention is an American’s birthright. I have more artistic impulses to explore and revisit. I have more writing I want to do (no, I’m making no promises of anything). I have life I want to enjoy.
So, for the time being, I’m going to take reasonable precautions to make sure that I can enjoy it, and do those things. I’ll get back to meeting with clients, and doing book conservation, when it is safe (in my assessment) to do so.
Take care of yourself.
Jim Downey
Communion Of Dreams 