Communion Of Dreams


Machado-Joseph Disease: Adjustment.

[I’ve decided to be public about my realization that I have the onset of MJD, the diagnosis process, and then living with the disease. Given the rarity of this disease, my hope is that this series of blog posts will help educate others, and perhaps provide some insight into it and related conditions. This is the third post in the series, written about a week after the second, as I started reframe what this would mean for me going forward.]

Been an interesting week, as I have been adjusting to the new normal of having MJD (as noted in my previous post, this is now where my head is at, though I won’t have an official diagnosis for about two months yet). It’s mostly been a process of re-calibrating my body awareness: noting that I have these muscle spasms in hands, feet, and legs, that the pain levels are there, and so forth, and then just moving on with my day. Living with chronic pain from a torn intercostal muscle that’s never healed properly, along with the random aches & pains of various abuses I’ve subjected my body to over the years of living life fully, means that to a certain extent the new aches & pains associated with MJD are just more of the same.

That’s not to discount the disease, nor the pain that comes with it. That’s real. And it has an impact. More pain, even if it isn’t worse pain, takes a toll. It wears me down faster. It’s more distracting, so it makes it harder to focus on any given task, especially creative ones. For the most part, though, I can just acknowledge the pain, listen to what it is telling me, account for it, and then get on with whatever I’m trying to do. So the pain isn’t the problem.

What is the problem is the degree to which this interferes with my bookbinding/conservation work. I’d been attributing the aches and pains in my hands to arthritis for years, and in truth I actually do have arthritis in some of the joints in my hands. That’s the result of the trauma inflicted by martial arts (primarily SCA combat) for about a 15 year period when I was a young man.

But worse than the aches and pains is the stiffness, spasming, and occasional loss of control in my hands. So far, the latter has only happened after I have been working using my hands (specifically while putting up the stamped copper ceiling in the kitchen this past winter). But I know it is just a taste of things to come. Dystonia is a classic symptom of MJD, and the spasms and pain in my hands that I’ve noticed the last few years is only likely to get worse and become more of a limitation. I had already started to scale back the conservation work I do, but now I need to be thinking in terms of finishing up pending obligations, handing off clients to other conservators, and becoming officially ‘retired’ as a book conservator. That’ll be a hard adjustment to make, since so much of my self-identity is tied up with it.

* * *

(a few days later… 4/7)

Something I’ve been thinking more about is the difference in the types of pain I’ve been feeling. This is distinctly muscle pain, as opposed to the kind of pain one has from arthritic damage to a joint, or tendon damage, or a broken/bruised bone. This is the kind of thing pretty much everyone has experienced at one time or another, from over-using a muscle (or a group of muscles). It feels almost exactly like what you experience the day after a really hard physical exertion, except it also feels a bit like what you experience shortly after exhausting the muscle in exercise. Think how your calves/feet feel after a five mile hike in street shoes: tired, twitching, and sore. Then add in how your calves would feel the next day, in terms of stiffness and that deep ache. It’s unusual in my experience to have both of those at the same time, but that’s pretty much what my hands and feet/legs feel when I’m having an episode of the MJD effects.

And that’s another thing: this isn’t constant. Not yet, anyway, for me. It’s episodic, lasting for a few hours, at most a day or so. Then it fades for a while. I haven’t yet been able to identify a pattern to the episodes, unlike my intercostal tear (which usually acts up in response to a change in barometric pressure or certain kinds of exertion). It’s possible that there isn’t one, and no way to predict what might trigger an episode. I suspect that may be the case, given that the episodes typically become longer and more frequent over time, until the pain is pretty much constant.

I’m sure I’ll find out. *sigh*

* * *

4/8

Bad episode today. Spasms, twitches, RLS (Restless Leg Syndrome), and a fair amount of muscle pain. Particularly in my hands. Possibly a connection to the cold front (we’ve had spitting snow and wind today, with a hard freeze forecast for tonight)? Whatever, been a rather annoying day. Particularly so since I had been planning on getting some binding work done, and my hands are just in no shape for it, even with having had them in the microwaveable mitts I use to loosen things up.

As I noted above, this is a psychological blow, as much as anything. I’ve never really defined myself in terms of my job, but it has always been one of the interesting things about me. Conservators are so rare that it’s always a talking point when I introduce myself to someone; they always ask about what sorts of things I work on, what’s the oldest/rarest/most valuable item, et cetera. Even surgeons, who seldom suffer from a self-esteem deficit, will pause and with a note of respect ask how I got into such a profession.

I’ll miss that. And I’m honest enough to admit it.

Jim Downey



Machado-Joseph Disease: Realization

[I’ve decided to be public about my realization that I have the onset of MJD, the diagnosis process, and then living with the disease. Given the rarity of this disease, my hope is that this series of blog posts will help educate others, and perhaps provide some insight into it and related conditions. This is the first post in the series, as I started to come to terms with the realization.]

3/13

I’ve known this disease for almost 50 years. From well before my family even had a name for it. I’ve seen it kill family members by millimeters, and do its best to ruin the life of my sister over the last 15 years.

So, why did it take me so long to recognize that I have it?

* * *

Denial, perhaps. This is not the sort of future one particularly wants to face.

Or perhaps a sense of entitlement? That I have had enough other pain and suffering in my life, that I deserved to be missed by this curse?

Or maybe a lingering perception of invulnerability? It’s said that none of us can really envision our own mortality until it steps out of the shadows and confronts us face to face.

All of the above.

What I know is that I first experienced tremors & cramping in my hands several years ago. The stiffness and ache I had felt I attributed to osteoarthritis — I had abused my hands considerably during my years of jujitsu and SCA combat, after all. At first, I just figured that the tremors and cramping were due to the same.

Except arthritis doesn’t cause tremors and cramping. Some part of me knew this, but discarded the information.

The same was true of the foot/leg cramping, the RLS (restless leg syndrome). I figured it was due to walking. Or climbing ladders. Or digging through turf. Or just ‘one of those things’.

All plausible explanations.

Because some part of me didn’t want to acknowledge the possibility of MJD/SCA3 (spinocerebellar ataxia type 3). As noted, this is not the sort of future one particularly wants to face. Depending on the age of onset and some other factors, MJD can mean anything from almost total debilitation and an early death to prolonged suffering and loss of bodily control. And we’ve seen the full range in my family. Not the sort of thing one wants to particularly acknowledge, since there is no cure and precious little in the way of medical treatment for the symptoms.

What was harder for me to ignore were the moments when I lost my sense of balance. My formerly exceptional sense of balance; graceful, fluid motions on the field of combat or the practice mats of a dojo. Gone now. Oh, routine walking is still perfectly fine. But when I turn my head quickly, or close my eyes while still moving, things will spin/sway/shift for just a moment. That never happened before. Well, unless I got drunk. Because that’s pretty much exactly what it feels like.

And then recently, I started just dropping things. Particularly tools, when I was tired from using them after a couple of hours. My hands would just stop working for a moment, and the item would slip from my grasp.

Now, I can be as clumsy as the next person in just routine day-to-day stuff. But when I’m working with tools, my focus, my control, is exquisite. It has to be, in order to be a book conservator, as I have been for thirty years. I don’t just start losing control of my tools. Let alone dropping them.

But I have.

* * *

Just before New Years we got together with my sister and her family. We’d had visits during the pandemic, but they had been brief, sometimes outside, more superficial. For whatever reason, as we were talking about how she was doing in her struggle with MJD, we got a little deeper into the details than usual. And as we talked about her symptoms, it was like a checklist formed in the back of my mind.

A checklist of symptoms. A checklist with each box ticked.

I realized that it was possible that I had been experiencing the onset of MJD. I scheduled an appointment to see my GP, far enough out in the future that I figured that the Omicron surge would be past, and it would be relatively safe to talk with her.

I didn’t put it out of my mind — how the hell could I? — but I was able to convince myself that it made the most sense to just wait and see my doc, and likely then see a neurologist after. Because MJD is rare enough (like 0.005% of the population rare) that my GP had zero knowledge of it, as I knew from previous discussions with her about family medical history. But I did start paying closer attention to that checklist. And I did some more reading on the latest research and medical information about MJD. It turned out that there had been a LOT of additional research and publications, and the disease was now much better understood than the last time I had dived into the literature some five or six years ago.

After digesting that, I was reasonably certain that yes, I had the onset of the disease. I shared those thoughts with my wife and a couple of very close friends I knew I could trust to not freak out or over-react. I still wanted to wait and see my doc, then a neurologist, and get the results of the genetic test that would confirm whether I had the disease, and to what likely degree, before I said anything to my family or other friends.

* * *

Last Tuesday (the beginning of March, 2022) I saw my doctor. It went as I expected, with me explaining my suspicions and how they matched the symptoms of the disease. What I didn’t expect, as we discussed it, was that her questions about the disease sharpened and confirmed those suspicions. She agreed with my analysis completely, and I left the appointment convinced that I have MJD, and that I had likely experienced the first onset three or four years ago.

I’m still waiting to get an appointment with a local neurologist (through a referral from my GP’s office for insurance purposes), though that will probably happen in the next week or so. Everything above is what’s been playing out in my head as rehearsed dialogue for that meeting. Time and time again.

So I thought I would write it down. Like being a care-giver, it helps me to process and understand what I am going through. Perhaps I will make it public. Perhaps it will grow into something like Her Final Year, as a way for me to share my perspective and help others who experience ataxia or have someone in their life who does. We’ll see.

For now, I will keep these thoughts to myself. But will update as seems useful.

* * *

3/16

Today it was a week since I was told by my GP’s office that they had sent over a referral to the local university Neurology Clinic, where they actually have at least one person on staff who is familiar with ataxias. (I went and looked at the public profile info about the staff on their website).

Since I wasn’t quite sure how the University referral/scheduling system actually works, I called the Neuro Clinic, and chatted with the nurse who answered the phone. Yes, I can be funny and charming if necessary. Looks like my case is already in discussion with the docs there, and I should hear from someone soonish about actually getting in to get an appointment/evaluation. The nurse I spoke with said that the process usually takes a month or longer, and that it has happened in just a week means that it’s on a fast track. Looks like I’m special. Woo-hoo — lucky me!

* * *

3/18

Haven’t heard from the Neuro Clinic yet — hadn’t really expected to, but still …

I’m used to chronic pain. From the joints I’ve abused, from the intercostal tear in my side that I’ve had for a decade+, from the ache of bones broken in a full and vigorous life.

So the extra pain in my hands and feet isn’t really a change. And it’s not like the pain is any more intense or distracting. But it is a change. Like using a larger hose to fill a pool; the volume of pain has increased. It fills me up faster, reduces the energy/attention that I have for other things.

It’s like being out of shape, and discovering that you just can’t run as far or as fast as you used to be able to. It catches you a bit by surprise, and there’s a part of you that just wants to deny that something so fundamental has changed.

I told a friend (one of the very few who knows about this) that I’m currently uncertain whether or not I’ll put a garden in this year. It’ll depend on what I find from connecting with the doctors. Oh, I’m sure that I *could* put in a garden, but how much would that take away from other things I want to accomplish through the summer & fall? I’m being a little more cautious about how I commit myself, not knowing what resources I’ll have available.

So I hope the scheduling nurse from the Neuro Clinic calls next week.

Jim Downey



Raising cane.

(So, been a while, eh? Yeah, it has. But no worries, things have been going very well, through a lot of minor and not-so-minor changes. More about all of that will emerge as I get back into regular blogging — you’ll see.)

A few weeks back a friend posted a question to a discussion group along these lines: what was a good, basic self-defense item which you could have under most situations which would be innocuous yet effective?

A lot of things were suggested, from the simple to the absurd. Yeah, OK, I’m a little opinionated.

But after a bit, a general consensus which emerged was that a walking stick or cane would fit the bill. And people posted links to various such items, ranging from the very basic to the traditional to the ultra-modern. There are a HUGE selection of different options out there, if you just do a search for one. Looking through a bunch of different choices, I got to thinking that it should be pretty easy for anyone with minimal woodworking skills to make their own walking stick to their own specs, for a lot less than most of the items was seeing cost.

So I set out to see what it would take. And I set my goals:

  • The stick should be made from readily available materials, with minimal tools.
  • It should be completely free of all metal, so as not to arouse suspicions when being scanned.
  • It should look and function as a real walking aid, not just a disguised cudgel.
  • It should nonetheless be an effective defensive tool.
  • It should cost $25 or less.

I stopped by a local home improvement store, and found the following:

1

That’s a 1.125″ rubber foot for about 50 cents, a wooden (oak) decorative cap (finial) that was about $4, and a hickory replacement handle for a sledgehammer or axe for about $14. Here’s another pic:

2

I chose hickory because it is well known to be a hard, dense wood. Next pic:

3

I removed the metal screw from the finial, then used a spade bit to expand the hole to about an inch. I used a wood rasp to make the mounting end of the replacement handle likewise about an inch in diameter.

Next:

4

Then I added some wood glue, and tapped the finial onto the replacement handle.

Next:

5

I did the basic shaping of the finial into a knob suitable for my (large) hand.

Next:

6

Here’s the top of the finial. I inserted a bit of .375″ dowel into the hole with some wood glue, then allowed it to dry. When it was dry, I rasped the whole thing down to a smooth hemisphere about the size of a tennis ball.

Next:

8

That’s the overall stick. It’s about 37.5″. Note that it is no longer quite the same size or shape of an axe handle — I spent an hour or so with the wood rasp, and took it down a fair amount. There it’s smooth, mostly uniform (no longer has as much of a swell in the wood up by the head), and about .25″ narrower and thinner.

Next:

7

This just shows the finished width of the handle — about 1.5″. It’s also just about 1.25″ thick. Both of those dimensions are a little larger than your typical commercially-available cane, but it no longer looks like an axe handle. After I was done with the rasp, I smoothed it out with some 60-grit sandpaper, then some 120-grit, then some 220-grit. I wanted it smooth and ‘finished’, but wasn’t worried about it being super smooth.

Next:

9

I then gave it three coats of urethane stain (dark walnut), sanding lightly between each with 600-grit sandpaper. Then I added the rubber foot and a simple braided leather lanyard.

Next:

10A detail of the head.

Next:

11

Another detail of the head.

Next:

12

Holding it with the lanyard around my wrist.

Next:

13And another view.

That’s it. Simple, effective cane/walking stick. Nothing metal or high-tech about it to alert someone that it is anything other than a walking stick. Total cost under $20, since I already had some simple tools, sandpaper, and stain on hand. And a total of a couple hours of labor.

Something I want to note: the handpiece/finial is not intended as a striking surface. You don’t need any additional bulk or weight there for this to be a very effective defensive tool. It’s more like the pommel on a sword. In fact, the overall length, heft, and other measurements is very similar to the rattan broadsword used in SCA combat. As such, I know full well just how effective such a tool can be against another opponent in even confined spaces. And now that I’m an old guy with a couple of cardiac stents in place, I need a good walking stick with me no matter where I go …

 

Jim Downey

 



A meditation on what isn’t there.

I finally got around to seeing this the other day, and I have been thinking about it ever since:

 

* * *

I first heard of Michael Heizer in a sculpture class in college, sometime in the late 1970s. Well, that I remember. It’s entirely possible that I had seen some coverage of his work in the press before then. But my professor got me thinking about how sculpture defined space both by physical presence and absence, and I know that it was then that I became aware of Heizer’s work. I didn’t realize it at the time, but his basic concepts would manifest in my life in many ways, showing up in my interests in martial arts, book design, even writing.

* * *

In the movie, John Bowsher (then the Project Manager for Levitated Mass at LACMA) says this:

His ideas are incredibly simple, when you pare it all down to just its physical nature, it’s really quite simple, and you see it again and again in his work. To achieve that degree of simplicity is like, almost the hardest thing in the world to do.

 

* * *

Not being there when your opponent strikes.

Drawing the eye to the empty space.

Allowing the reader to fill in the suggested, but missing, description.

Each of these engages and enlightens in ways that no amount of force, or color, or detail ever could.

 

* * *

Chrissie Iles, Curator at the Whitney Museum, talking about Heizer’s Double Negative in the movie:

Micheal Heizer makes you aware of space and your relationship to space and how you move through space,the role of the sky, the role of the land, beyond what you’re looking at. You have to rethink the nature of who you are physically in relation to what you are walking around inside and observing from a distance and up close.

 

* * *

We’re not always aware of what we do while we’re doing it, or why. Sometimes, the trajectory of a life is determined by little things, subtle things. Even things which are mssing.

 

* * *

I finally got around to seeing this the other day, and I have been thinking about it ever since:

Shortly after I had conceived of the idea behind Paint the Moon, I knew that it wasn’t actually feasible. But the idea delighted me. And after some thought, I realized why: it was taking the principles of Michael Heizer’s art — of paring down art to the very simplest, physical elements of experience — and going one step further. Remove the physical object altogether, and replace it with pure experience, pure concept. Hence my description of the project as a “collective lyric fantasy”.

You can’t see the artifact of that project at a museum. There is no massive boulder to walk under, or a negative space in the desert to encounter.

But there is the Moon overhead, and the memory of a moment in time.

 

Jim Downey



What a difference a week makes.

Just think — all the folks who are prepping to deal with some global emergency almost got a chance to see how well their theories work in practice. My friends who are into Steampunk and the SCA would have reigned supreme!

Earth survived near-miss from 2012 solar storm: NASA

Back in 2012, the Sun erupted with a powerful solar storm that just missed the Earth but was big enough to “knock modern civilization back to the 18th century,” NASA said.

The extreme space weather that tore through Earth’s orbit on July 23, 2012, was the most powerful in 150 years, according to a statement posted on the US space agency website Wednesday.

* * *

“If the eruption had occurred only one week earlier, Earth would have been in the line of fire,” said Daniel Baker, professor of atmospheric and space physics at the University of Colorado.

 

Ah well. Better luck next time!

 

Jim

 



Honor thy mentor.

This item from the Getty on making illuminated manuscripts is making the rounds among my friends who are into things medieval.  It’s relatively short, quite good, and covers the basics nicely.

But I particularly wanted to share it because when it gets to the bookbinding part (at about 4:30) it shows my bookbinding mentor, the late Bill Anthony, doing the work.

Bill was one hell of a craftsman, and a better bookbinder than I’ll ever be. No, that’s not false humility — I’m now just a few years younger than Bill was when he participated in making this video. But at that point in his life he had been a bookbinder for more than 40 years. I’d have to continue to work at it full time for at least another 20 years to have the same time in harness. And since I’m distracted by writing and other things, well, it’d probably take another 40 years to even have a chance to achieve the same level of proficiency. But that’s OK — I’m happy with the choices I’ve made, and the things I have accomplished (and still hope to accomplish).

Anyway, I wanted to share this.

 

Jim Downey



“Is that yours?”

I’ve mentioned my earlier involvement in the SCA previously. And generally I’ve always had an interest in different historical recreation groups, particularly those which strive to do the different types of combat throughout history well (one of the reasons I really like Peter Woodward). So naturally I have to share this brilliant little film short:

Hilarious.

Went and rescued a kitty today who was no longer wanted. She’s currently isolated in one of the bathrooms, getting slowly acclimated to being in a strange place with strange monkeys, another cat, and a DOG!!! I promise pix once she’s more settled.

Jim Downey