Filed under: Art, Book Conservation, Brave New World, Connections, General Musings, Genetic Testing, Health, Humor, Machado-Joseph, New Horizons, Predictions, Preparedness, Science, Society | Tags: art, arthritis, ataxia, balance, blogging, book conservation, bookbinding, Communion of Dreams, fasciculation, genetics, guns, health, jim downey, Legacy Bookbindery, Machado-Joseph Disease, medicine, MJD, MMJ, neurology, neuromuscular disease, pain, peripheral neuropathy, SCA3, Science Fiction, spinocerebellar ataxia type 3, St. Cybi's Well, travel, vertigo, Wikipedia
For about 30 years, I’ve been a conservator of rare books & documents.
That came to an end yesterday when I met with my last institutional client and explained that I need to retire officially as a practicing conservator. Since they follow my blog posts and social media presence, this did not come as a surprise.
As I was driving home from the meeting, I was working through a fairly predictable mix of emotions. Guilt, because I know that this means that important works in their collection won’t get the treatment they need anytime soon. Relief, because now I won’t worry about accidentally damaging some important/valuable book or document. Loss, because my career was now over. Pride, because I know that I have done good work over the years, and made a real difference. And disorientation, because for some 30 years a big part of my identity was being a Book Conservator in private practice — something almost as rare as many of the items I have worked on over the last four decades.
I think anyone who reaches retirement age probably has some mixed emotions about actually retiring. But for most people, they’re ready to retire — to live life on their own terms, to travel, to just get out of the office, to get away from annoying co-workers.
The problem is, I wasn’t ready to retire. And I had already arranged my life so that I lived it largely on my own terms. I’ve traveled. I didn’t have an office I had to go to. I don’t have co-workers who annoy me. I had honestly expected that I would continue to do conservation work until old age claimed me, since the work is typically not strenuous.
MJD had other ideas, as I’ve noted.
So, officially, I am no longer a Book Conservator.
Yes, I am still many other things. An artist. A writer. A cool, handsome guy who is just 64 and certain that he’s still a babe magnet.
OK, maybe not that last one.
But the point remains that there are still many facets of my identity that remain, even though I have of necessity set aside the title “Book Conservator”.
I suppose “Retired Book Conservator” still sounds pretty cool.
Jim Downey
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Recently I drove out to Las Vegas, for the first post-Covid national meeting of the Liberal Gun Club (I can be seen at several points in the video, wearing a red & white flannel shirt). It’s a drive I’ve made previously in two days (about 12 hours each day), but I decided that it would be wise for me to split it up into three days each way, to better reduce my stress and better accommodate the unpredictable episodes of MJD symptoms (since I didn’t want to take any of the painkillers or MMJ stuff that help me manage those episodes while I was driving).
It was a good decision. When I had an flair-up of symptoms, I knew that I could take a break without feeling a lot of time-pressure.
And it gave me more time to think.
To think about this past year, and where I’ve found myself. To think about the LGC event (particularly after it was over, and I could reflect upon what happened there). To think about the near-term future.
As I noted yesterday (and in this series of MJD-related blog posts generally), it’s been a challenging year. And there’s nothing like going naked (in the sense of not taking any meds) for a prolonged period of time to show you, honestly and clearly, what your real condition actually is.
Mine isn’t bad. But it is perhaps a lot worse than I had realized, in my day-to-day life. That’s because being able to take things that help manage it means that I can largely ignore the symptoms. Without those meds, though, the truth tends to be a little sharper edged (as is the pain). While teaching a black powder workshop I had hand spasms that were so bad I couldn’t hold onto the gun I was using at the time, let alone manage to load it. So much for the idea that being focused on a given task (which I was) would be enough to set aside that symptom. I verbally walked my students through the process, and we got on the other side of it fine. But it was a sobering moment.
A moment that drove home the idea that it was time for me to make some changes. Specifically, that it is time for me to pretty much completely retire from conservation work. As I noted in this blog post last May:
As a conservator, I can’t afford to celebrate my mistakes. There will of necessity come a time when I need to stop doing conservation work, out of respect for the items entrusted to my care. That time is rapidly approaching; indeed, it may already be here.
I think I crossed that line sometime this summer. So the time has come for me to (mostly) stop doing conservation work altogether, at least in terms of being hands-on.
That’s a big change for me. I’ve largely defined myself as being a book conservator for 30 years.
* * *
Western Utah is stunning. But also bleak. And more than a little alien to my Midwestern eye.
I think those vistas, and the mental space I was in on my drive home, helped me realize something else.
That I’m ready to start writing a sequel to Communion of Dreams.
I hesitate even mentioning this, since I had so many people after me about the long delays in writing St Cybi’s Well. But I decided to share it to help offset the seemingly ‘bad’ news that I need to retire as a conservator.
So here’s the deal: don’t ask how it is going, or when I expect it to be done. I’m at the very beginning of the whole process, and it is likely to take years. I may occasionally mention things about it. Or not. But asking me about it is not going to get any additional information beyond what I volunteer, and will just annoy me. You can wish me well with the writing, but leave it at that, OK?
Thanks.
Jim Downey
Filed under: Brave New World, Connections, General Musings, Health, Machado-Joseph, Predictions, Preparedness, Science, Society, Survival | Tags: arthritis, ataxia, balance, blogging, cannabis, codeine, dystonia, genetics, health, jim downey, Machado-Joseph Disease, marijuana, medicine, MJD, MMJ, neurology, neuromuscular disease, pain, peripheral neuropathy, restless leg syndrome, RLS, SCA3, science, self care, spinocerebellar ataxia type 3, Tramadol, Tylenol 3, vertigo, Wikipedia
This morning I picked up my monthly meds. Basically, the same set I have been taking for almost a decade.
And as I was going through and organizing things, I realized something interesting: I’m taking *way* less of my opioids (Tramadol and Tylenol #3) now, thanks to my Medical Marijuana.
The growing MJD symptoms had started cutting into my small reserve of the opioids which had been more or less stable for years. I mentioned this in one of my first posts about MJD:
But of course, being aware of — even moreso paying attention to — more pain is, well, painful. Distracting. Annoying. So in terms of my perception, my ambient pain levels have gone up significantly in the last few weeks. I noticed recently that my use of my prescription pain meds (Tramadol, Tylenol 3 with codeine) that I’ve been on for about a decade for an intercostal tear has ticked up recently. Now, that happens, particularly when I am doing some strenuous exercise/project. There’s a sort-of natural ebb & flow to it through the year, with some months being a little higher usage, some being a little lower usage. But since we finished installing a new stamped copper ceiling in the kitchen, I haven’t been engaged in anything very physically demanding. That was six weeks ago, and I should have reverted to something closer to baseline. I haven’t.
By the time I got my MMJ card two months ago, I had pretty much used up the small reserve I had. That was a little nervous-making, since I really didn’t want to increase either the power or amount of opioids I took.
Well, in just two months of having access to MMJ, and about a month of understanding how I can best use it for my needs, things have changed. A lot. Like, I’m now taking half the amount of opioids I was (same for alcohol intake). In this short time I have already replenished my reserve. I could probably cut that further, but I’m still just using the MMJ products in the evening (very mild dosages) and overnight (mild dosages).
This disease, and the version I have, is progressive. With luck, however, I should be able to manage the symptoms, and particularly the annoying pain issues, without increasing my intake of opioids for a while. We’ll see — it’s all about learning how to manage things.
Jim Downey
Filed under: Connections, General Musings, Health, Machado-Joseph | Tags: alcohol, arthritis, ataxia, blogging, cannabis, codeine, dystonia, health, jim downey, Machado-Joseph Disease, marijuana, medicine, MJD, MMJ, neurology, opioids, pain, radioactive, radium, restless leg syndrome, RLS, SCA3, science, spinocerebellar ataxia type 3, Tylenol 3, Wikipedia
One of the things people with MJD have found helpful is Medical Marijuana (MMJ). It helps to moderate pain, but more importantly, some of the available strains really make a difference in allowing people with the disease to sleep through the night.
See, one of the problems with MJD is that the twitching, cramping, and pain in the hands, feet, and legs is such that it disrupts sleep. This is something that I noticed particularly in the last few months, as my symptoms started developing, and I have a long way to go before it becomes diagnosable dystonia. So of course, anything that might help me sleep better is of interest. Because the key to dealing with this disease, since there is no cure, is to manage the symptoms to the greatest degree possible. That will allow me to make the best use of my functional time each day, and get the most enjoyment out of living.
And if MMJ will allow me to do that, then I’m game. So I’ve started looking into it. The problem is that it’s damned hard to separate out the quack “MMJ can cure EVERYTHING!” stuff from real, rigorous research. Of course, the demonization of all forms of cannabis by our government over the last half century hasn’t helped. Since it is still a “Schedule I” drug as far as the federal government is concerned, there are real limitations on what kind of science can be conducted on medical applications, which just opens the door to all kinds of outlandish claims. I swear, it’s like the ‘Snake Oil’ era of patent medicine, or the insane hype that went along with radium and other radioactive quackery early last century.
There’s no rush, since I’m not going to see about getting a MMJ card (available here in Missouri) before I have a definite diagnosis, though just on the basis of my chronic pain alone I could qualify. And for the time being I can just rely on the meds I already have (opioids, OTC stuff, booze). But I have been trying to educate myself from what trustworthy sources actually are available. Which, to be quite honest, is enough to drive one to drink.
Ironic, eh?
Jim Downey
Communion Of Dreams 