Communion Of Dreams


An informal .32 H&R Magnum test, and a lesson relearned.

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

I’m not a fan of the .32acp for self-defense. But the .32 H&R mag or the .327 Federal mag are both respectable options, even out of a short barrel revolver. Since the 100gr Buffalo Bore Heavy 32 H&R Magnum +P ammo load wasn’t available when we did the .32 H&R tests, we weren’t sure how it would perform. And we decided to do some informal testing to find out, learning another lesson in the process that I thought I’d share.

[The entire post can be found here.]

Jim Downey



Review: M&P FPC.

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

Sometimes, smaller *is* better:

Yup, that’s the new Smith & Wesson M&P FPC (Folding Pistol Carbine), which I got to shoot recently.

[The entire post can be found here.]

Jim Downey



Making a 14th century Hand Gonne

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

Last Fall I taught a day-long workshop on “Primitive Black Powder Firearms” for the Liberal Gun Club‘s Annual Meeting in Las Vegas. In addition to my own black powder guns, I borrowed a couple of items from friends to help fill out the historical selection, including this very nice reproduction of a 14th century .62 cal cast bronze hand gonne:

[The entire post with LOTS of pics and info on making this historic reproduction gun can be found here.]

Jim Downey



Machado-Joseph Disease: Acceptance.

It’s been an … interesting … couple of months, for reasons that I’ll explain at some point in the future, when I can get into it without violating confidentiality of a client. For now, just accept that I’ve been fairly busy with a variety of projects, including the process of adding this loving big boi to our household:

That’s Marmaduke, who is about three years old, and who needed to be rehomed after the passing of an old friend of mine. We’ve been happy to give him a new home, though our other two cats are somewhat less thrilled. But no worries, he’ll fit in fine in a couple of months.

But writing about Marmaduke isn’t my goal, here.

Rather, I wanted to share something that I’ve been thinking about lately: my seeming calmness about having SCAR8.

My primary care doc retired the end of last year. So I’ve been in the process of finding a new GP, and that means filling out new patient paperwork, arranging for medical files to be transferred, etc. It also means that I’ve been thinking about how to explain my family history with MJD and what my genetic testing indicated. Because I don’t expect most GPs to have any knowledge of MJD, let alone what I evidently have — they’re just too rare.

And thinking about that, I realized that I have come to calmly accept this fact in the last few months. Why is that?

I mean, on one level it’s the sort of obscure medical problem that could make someone fall into a tailspin of depression and anger, raging about the unfairness of it all, or despairing how so-called orphan diseases are largely ignored by our medical care system. After all, this has changed my life in some significant ways. I’ve had to quit as a practicing conservator, a profession I loved and was very good at. I have more physical problems related to the disease: more pain, hand spasms, Restless Leg & Arm Syndrome, episodes of dizziness/vertigo, and some annoying lower GI and bladder issues.

But all of those symptoms are relatively minor, and there are things I can do to help deal with them. My usual Rx meds manage these new pains well. The hand spasms are rare, and I can usually just stop doing whatever it is that sets them off. Low-dose THC edibles help control the RLS/RAS and help me sleep better at night. Meclizine manages the balance and dizziness fairly well. And I’ve just learned new cues from my body to manage the GI/bladder issues. I mean, it’s not ideal, it wears me out each day and I’d rather not have to worry about it, but all in all it’s mostly just an annoyance at this point, rather than a debilitating diagnosis.

And, honestly, just knowing what is likely going on allows me a great deal of psychological space to cope with it. Because, remember, I grew up watching family members manifest symptoms of MJD before we even had a name for it. There was no genetic test for it. There was no treatment. There was no explanation for what was going on, or how to cope with it. The symptoms weren’t understood, and neither was the likely progress of the disease. It was just the family curse.

So I have a more sanguine perspective because I can afford to. I have “MJD-lite” not MJD itself. SCAR8 is rare enough that the progress of the disease is uncertain, but I am reasonably sure that I should be able to live a normal lifespan without it becoming too onerous.

And I don’t particularly want to spend any significant part of that lifespan seeking some kind of miracle cure. Medical science can be amazing, and in some really personal ways it has had a huge impact on my life (I’m thinking specifically of my stents to correct a heart defect seven years ago). But there are limits to modern medicine, and what it can do. Wasting a lot of time, energy, and money trying to seek out some elusive treatment strikes me as … unappealing. If there was any indication that there was some sort of viable treatment, I’d likely have a different opinion on this. But there isn’t.

So, better to just get on with the business of living, to the best of my ability. After all, there are cats that need petting.

Jim Downey



Machado-Joseph Disease: Confession time.

I wasn’t going to say anything about this, because it’s largely a distinction without a substantial difference. But I’ve had several friends ask some questions because of things I posted to social media, and I decided to just clarify the matter.

Last August, when I said this:

So, I got the genetic test results today: I have a mild version of MJD.

I lied.

Oh, it’s a small, technical lie, mostly of the misdirection variety. But it’s a lie.

I don’t actually have MJD, or Spino-Cerebellar Ataxia type 3 (SCA3), which is a genetic disease caused by a trinucleotide repeat disorder in a specific gene sequence. Instead, I have SCAR8 (it doesn’t have another name), which is a genetic disease caused by a disorder in a different specific gene sequence, and has symptoms that are like a mild version of MJD, plus a couple of other things that I’d noticed/showed up on clinical exam. Everything else I said in the post from August is true.

If you poke around online, you’ll find that there’s not much on SCAR8, because it’s even more rare than MJD (by like a factor of 10), so there’s even less known about it. But it’s in the same family of ataxias for which there’s no cure and very little in the way of available therapies. You just deal with the symptoms as best you can.

I have always been a fairly pragmatic sort of person, so I figured that since there’s really not much difference between MJD and what I have, there wasn’t a need to confuse the issue with writing about it. But it seems that one of the differences is some mild lower G.I. issues (along with messed-up signals from my body about the urge to urinate), which I had mentioned online and caught the attention of friends.

So there’s that. It doesn’t change anything in what I am doing: treating symptomatically, altering behavior as necessary to account for the disease, and getting on with life as best I can. But having been raised Catholic, I’ve now confessed to the small lie, and gotten that off my chest. 😉

Jim Downey



It’s about Time

My wife and I have been big fans of the UK TV show “Time Team” for a long time, and a couple of years ago when producer Tim Taylor decided to try and revive the series using a Patreon model, we were happy to sign on and tell a number of our friends about it. Unsurprisingly, we discovered that the series was also popular in our friends group, especially those who share our interest in English/Welsh/Scottish/Irish history.

Well, about a year ago, one of our friends entered a competition hosted by Time Team about the series, and, well, I’ll let her tell the rest:

Maybe you remember back in October, Time Team asked people to tell them “What are you most excited about Time Team returning, and why?” Like many people I fangirled a bit to show my appreciation, then forgot about it.

So I was very surprised when Time Team contacted me around Thanksgiving to tell me they liked my comment so much they are sending a gift. I asked if they would send it to the friends who had introduced me to Time Team, and given Customs and all they thought it would be less confusing if it came to me.

And she sent it to us: Custom Time Team Trowel #400.

Well, we were thrilled. It’s really cool to hold that thing in your hand, feel a connection to the show we loved.

But we decided that after we’d kept it for a time, that it would be best to share it. To pass it on to someone else who shared our love for the show. For it to become a ‘traveling trophy’.

I spent some time thinking about it over this past busy (and eventful) year, and finally decided to make a simple journal for recipients of the “Traveling Trowel” to record some thoughts and dreams inspired by the show. And of course, there needed to be a box to hold the trowel and journal. I wanted everything to feel informal, yet professional. Sorta like Time Team.

This was the result:

Rich archival goatskin. Archival drawing paper interior.
Simple longstitch, flexible binding. Ribbon closure with a custom wood composite button. Natural edge to the leather.
Birch plywood box. Cover laser etched. Sides piercework trowel design. Lift-off cover.
Box interior. Trowel in signed linen bag, journal under.
Journal in box.

In order to set the stage for the journal, I asked my wife to write the following introduction:

This trowel is magical.

Take it in your hand. Feel the weight of it. The balance. How it fits into your palm. How your thumb and fingers curl around it.

Then close your eyes. Let your mind roam. To somewhere you love, even if you’ve never been there in person. Picture the place. Then channel your inner Phil Harding. Or Helen Geake. Or whichever member of the Time Team, past or present, comes to mind. See yourself exploring the past of the site you’ve chosen, trowel in hand.

Then, if you’re willing, share here where you’ve been. Where the Traveling Trowel has taken you.

And, as a record documenting the history of the Trowel, I mounted my friend’s letter next, followed by my own entry. For that entry I naturally pictured St Cybi’s Well

Ffynnon Gybi

There, in the valley below the hamlet of Llangybi on the Llŷn Peninsula, the old stone structures beckon. But behind them, the Holy Well itself springs forth.

It is here that the trowel leads me. Without disturbing the ground, I can visualize scraping away the upper layers of dirt. Removing the modern soil. Down past the traces of the 18th and 19th century structures that now dominate the site. Deeper, to the remaining imprint of the medieval surface where pilgrims knelt beside the water, seeking healing for body and soul.

Then deeper still, seeking the foundations of myth of the man who would become Saint Cybi. Perhaps his simple hovel where he meditated, seeking a connection with his God. Perhaps some small artifact which has survived the centuries, uncovered, pristine in my mind’s eye, a holy relic …

The Traveling Trowel will move on. I hope that each recipient will add their own bit to the lore of it. But I also hope that each recipient will give the next person some small memento related to their time with it. Here’s what I made for my friend, us, and the person that I have passed it on to:

Three acrylic inserts.
In the light base. White light, obviously.
And in blue.

Thanks for visiting. And if you haven’t yet, check out the Time Team Patreon page.



Jim Downey

Just a note: none of this is for sale. And yes, I took some minor liberties with the official Time Team design to better fit my personal aesthetic and the capabilities of my laser. No criticism of the original design is intended.



Machado-Joseph Disease: Who am I?

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



Machado-Joseph Disease: As one chapter closes, another is begun.

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



Machado-Joseph Disease: a bitter harvest.

Just harvested this year’s super-hot habanero crop, in advance of the first hard freeze of the season. Here it is:

Yup, that’s it. 29 peppers, and half of them not entirely ripe.

29.

Compare that to the 1,000+ of most years, and the 1,500+ of some years.

Now, partly this is due to a decision on my part to only plant about half the usual number of pepper plants. But still, 29? Really?

It’s been that kind of year.

We’ve had a prolonged, serious drought here. And I was busy with working on the house and managing other things, so I didn’t water or care for the garden nearly as much as I typically do. Sometime late summer I just kinda gave up on it.

Late summer. Hmm. What else was going on then?

Oh, yeah. That. I got my results back.

I didn’t think that I had that much of a response to the results of the MJD testing. But I’d be a fool to deny that this year has been a challenging one, and the confirmation of my expectations did have an impact on me. An impact that is still playing out, and that means more changes to come.

More on that soon. And don’t worry, not all of it is bad. It’s mostly just change.

Jim Downey



Machado-Joseph Disease: Home, sweet home.

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