In
The Ponderings of a Bookbinding Student- Part 3, I mentioned some of the reasons for
returning to the US from Germany in 1987, even though returning was perhaps not the initial plan. One of the things that happened in the spring of my last
apprentice year (and 2 short months before my exams) was that I was
diagnosed with a form of muscular dystrophy. At the hospital the doctor
said, "so what are you going to do now?" Hadn't thought about it, was
still bike racing, and thinking of my life and career... "Well, you
won't be able to get a job and will need to go on disability..." Ah,
well, that's a problem then, and that statement alone made it easy to
return to the US. Effects of this progressive disease weren't obvious
for a very long time, in part because I continually adapted to those
changes. Part of that was getting a job in academia with great health
insurance, and acquiring new interests and skills in my day job such as
digitization and management.
In
Blade Runner (1982), Roy and Pris asked Sebastian (Who had challenges of his own) for help with their life expiration dates...
We've got a lot in common.
What do you mean?
Similar problems.
Accelerated decrepitude.
I don't know much about bio-mechanics, Roy...
In terms of my binding and teaching, the impact started to be noticed around 2003 when traveling to teach workshops became too strenuous, especially since one is "always on," and that for at least two long days, back to back. I continued to teach classes from my home studio until 2012ish when I decided I needed a break, in part to do my own work and not worry about having to clean off the bench once a week. I still welcome former students and selected others who want to use equipment and/or otherwise talk shop.
The impact is also felt at the bench where I have increasing issues
with stamina and some fine motor skills such as sewing endbands or
holding a finishing tool… I have no intention to stop binding, but
rather will adapt by changing structures and other aspects. It creates
some interesting design challenges, and for those things I can't do, I
ask for help... Adapting to changing circumstances and adjusting ones
career/artistic/life goals is essential regardless of circumstance.
Sometimes we just need to roll with it, something easier said than done.
Last spring, after having avoided the bench because of problems getting up off the scooter safely and trying to stagger back and forth (always holding on) to get things out of my flat files, work at the stamping press (on another bench), sit on an adjustable stool that worked with my "standard" standing height benches, ..., I made the decision to have my benches reduced in height so that I could work comfortably seated on my scooter.
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Original bench height (ca 36"/91.5cm), great for working when standing,
Seated on a scooter, not so much. |
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| New bench height (ca 28"/71cm), equivalent to standing. Much better! |
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Bench for stamping press, a few inches higher than the old bench height.
Platten about chest height, great for looking at the stamping area. |
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| About the same working height, except now from the scooter. Much better... |
So, now I can comfortably work at my benches, but there are still plenty of challenges to working such as the declining fine motor skills
- The bio-mechanics and ergonomics of endbanding (stamina and fine motor).
- No work around yet, but maybe make some boxes that I put to either side to rest arms/elbows on.
- Being able to exert downward pressure to keep rulers in position and keep things from slipping in general.
- A rubber mat helps keep the cutting mat from slipping around...
- Holding/using finishing tools very strenuous, even to do a straight line.
- Using board shear.
- Bigger books more unwieldy, smaller ones easier to handle/work on.
- Less "full" bindings, more 3-part bindings, that thing I call the modified Bradel binding (Gebrochener Rücken) as component parts can be easier to handle.
- DON'T blame every problem on the disease/condition. Everyone screws up/has accidents at some point. Learn from them, recover if possible (or start over), and move on. Questioning everything not healthy...
- Exhibits, maybe not so much anymore... Less pressure can equal more fun. Find other outlets for sharing work and experiences.
Cathryn Miller of Byopia Press
recently published a fantastic post on this topic on her blog. In it she describes many of her hacks and adaptations that allow her to keep working on her books.
I'm going to keep at it, binding that is, but have also gone back to my trains and
building kits such as the pigeon shack. LOTS of detail work to keep the fine motor skills on notice, but not as costly when screw-ups happen.
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| H0 (1:87) birds for the pigeon shack below... |
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| Pigeon shack with those birds - Detail work! |
The articles shared on this blog about vocational rehabilitation, mostly of WW I veterans with lost limbs have given ideas for hacks I may try at different times. Likewise articles in the popular press like "
We Are the Original Lifehackers" from the NYTimes. There is also the "
Disabled List" is a disability-led, self advocacy organization that is creating the opportunities in design that we always wanted. The Disabled List is a curated list of creative disabled people who are available to consult, and the site has enough images to give ideas for adapting. Then, there are our
future surgeons - scary and bemusing at the same time. Made me remember a retired surgeon who was also a bookbinder and sewed the most amazing endbands.
[Edit: See also this op-ed from the LA Times, Op-Ed: When my fingers stopped cooperating, I had to rethink making art, 7/28/19. Here, another relevant article: A Silent Roundtable Discussion on Disability and Inclusion in Art Conservation, 12/26/20. See also My Parents are Hackers, 9/25/22]
Taking advantage of opportunities for growth at work, developing other (related) interests such as writing (I love my ergonomic keyboard) and contributing that way have also been sustaining and satisfying.
Looking back 30 years, watching an older binding student with Parkinson's sticking with it despite the challenges was almost like looking at my future self without knowing the details of progression. Almost like the ending of the "
Fairy Tale for Bookbinding Apprentices:"
... This made the Meister very sad and depressed, so much so that he never wanted to create another masterpiece. He didn’t even want to teach anymore... His hair grayed, his vision deteriorated so that he saw his gilt lines double, and his hands shook when he held the type-holder over the stove.. He rubbed his hands over his eyes and dreamt that the wise Bone Folder was still in his pocket where it had always rested. In his dream it spoke to his heart, “don’t be sad great Meister. You shared your talents before they could leave you, and your generosity was so great that you even let me go. Now, I still shape beautiful headcaps, but in someone else’s gentle hands. You still live though. Rise up, and continue to tell all the stories you told me. Then I will be with you in spirit and can help you. Your pen is your new tool now.”
This made the Meister perk up. Once again, the wise Bone Folder was right. Everyone has something to share and pass on. Meister Franz’s gifts will enable others to sustain themselves. He will keep nothing to himself until he closes his eyes for the last time, and then he will go, satisfied to have lived for his art and craft, and those that practice it.
Maybe too dramatic? Maybe not? What are your stories? Though the details may vary there are always similarities, and hacks. Let's share.
