Machado-Joseph Disease: wabi-sabi

Machado-Joseph Disease: wabi-sabi

May 22, 2022, 10:20 am
Filed under: Art, Book Conservation, Brave New World, Connections, Failure, General Musings, Health, Machado-Joseph | Tags: art, arthritis, ataxia, blogging, book art, book conservation, bookbinding, bookbinding techniques, fasciculation, health, Japanese, jim downey, leather, Legacy Bookbindery, Machado-Joseph Disease, MJD, neurology, neuromuscular disease, pain, peripheral neuropathy, SCA3, spinocerebellar ataxia type 3, St. Cybi's Well, wabi-sabi, Wikipedia, Zen

“Jim Downey was a noted book artist, conservator, and author who, at the height of his skills, was betrayed by his body with the onset of Machado-Joseph Disease in his early 60s …”

That could be the opening line of my obituary some (hopefully many!) years hence. Or perhaps a change to my Wikipedia entry.

But the thing is, I don’t feel betrayed by my body. Not in the least.

Yes, I likely have MJD. And yes, it has started to cause me physical difficulties in accomplishing things, as well as additional pain, as I have been outlining here on the blog.

But we all live with limitations. Of strength. Of endurance. Of skill. Of intellect.

I can’t fly like a bird. Should I say that I am therefore ‘betrayed’ by my body? Of course not.

I can’t think as rapidly or as clearly as I could when I was, say, 40. Again, that’s not a betrayal. That’s just change that comes with being a normal human. Of living a normal life.

There’s a Japanese concept of wabi-sabi that informs a traditional aesthetic common in the culture. It has roots in Zen Buddhism, which I studied and tried to embrace as a young man. It can be a difficult concept to explain, but concerns an appreciation for that which is imperfect and/or impermanent in nature and beauty, as all life is imperfect and impermanent. A classic example of wabi-sabi is an elegant teacup which has a flaw (perhaps broken accidentally), but made more beautiful by the application of a gold filling to repair the cup and make it functional again. It is an understanding that all things can only be fully appreciated by respecting their limitations, and that experiencing the thing in the moment, as it is, with all the flaws it has.

As I noted a couple of months ago, I’ve been working to finish the leather-bound edition of St Cybi’s Well. Though this has been complicated by the onset of MJD, I’m almost finished with the edition of 14 books. As I was working to “turn in” (the process of folding the leather around the edges of the bookboard for the cover) the covering leather on one of the first of these books, I made a mistake. My hand slipped. And the tool I was using, my favorite thin bone folder, marred the cover.

Dammit.

I took a deep breath, finished what I was doing, and set the cover aside to think about it later. When these things happen, the >worst< thing you can do is panic and over-react. A lot of times if you just leave it be and revisit it later, you can usually mitigate the damage with a little careful pressure, or extra moisture, or one of several other techniques.

I turned my attention to the next cover.

And as I was finishing that one, almost the exact same thing happened. Not in the same place, but a similar, though worse, tool mark. Like this:

Gawddammit.

We all make mistakes. “It’s inherent in hand process”, as is commonly said by artisans. But making two very similar such errors?

That was likely thanks to MJD symptoms. Which I had been working through.

I quit for the day.

And as I thought about what it meant, I had to consider how I thought about myself, and my art. I am now an artist/artisan who has this additional limitation, this new part of who and what I am. Allowing that to be reflected in my art — indeed, embracing it — was the only honest thing I could do.

It was time for a little wabi-sabi.

So I did this:

A little gold leaf, to embrace the imperfection.

In fact, I added a wabi-sabi element to each of the 14 books. Because I made more mistakes as I finished the edition. Not all of them had tool marring, but many did (and, curiously, all along the top edge of the covers). I decided that for the edition to be complete, for it to reflect this particular moment in time, each needed to have a similar flaw/enhancement, though each one is unique.

Here they all are:

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’ll know more after my neurological assessment tomorrow.

As an artist, I’d be a fool deny my mistakes. Because denying them would be to deny myself, and what has brought me to this point in time. This particular, wonderful, moment.

Jim Downey

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