A version of this post sat in my drafts folder for many weeks. I kept leaving it there because I’ve been spending most of my free time in recent days either exploring my surroundings or engaged in my newest hobby (and also because I’ve been procrastinating, but that goes without saying). Since this entry is mostly about disability in the context of that new hobby, I thought I’d use Disability Pride Month as motivation to finish and publish it so that I could proceed with my exploring and engaging without a dark cloud of procrastination-induced guilt hanging over my sunny self.
I own a gorgeous sewing machine. My husband bought it for me three Christmases ago, and when it arrived, I promptly set it up in what was my craft area at the time (highly inferior to my current arrangement but better than nothing). It worked beautifully. Before long, I had a heap of instant-gratification scrunchies, a stash of lovely fabric, and a folder of aspirational patterns that I swore I’d sew sometime really, really soon.
Then my health deteriorated, and I started losing use of my hands. Most of my pastimes of choice happen to require fine motor skills, which made this turn of events especially devastating. No more embroidery. No more knitting. No more LEGO.
And, of course, no more sewing.
I won’t dwell on what happened next. Some things, after all, are best left shoved in the back of memory’s junk drawer: not forgotten but not given too much attention, either, because with attention comes power, and I’m determined to take that back and use it for what brings me meaning and pleasure. I’ll therefore jump ahead to the “I got better, yay!” part. Yay!
Get better I did! On a Saturday afternoon not long ago, my husband journeyed to the basement and emerged half an hour later, sweaty, triumphant, and toting my shiny black marvel. This has proven among the best of the many benefits I’ve reaped for dealing with health stuff.
After a slight delay due to the fact that the pedal and power cord had been lost to the murky depths of our storage unit (an exhaustive search was conducted and a replacement subsequently purchased), I found myself staring at the machine in equal parts intimidated and wildly excited. The possibilities seemed endless.
Nonetheless, some hurdles stood between me and the capsule wardrobe I envision(ed) myself creating. If you very reasonably assumed that the greatest obstacle to my whipping up a closet full of perfectly tailored clothing would be that it’d been a decade since I’d sewn a single garment, you’d be wrong. Instead, I first had a more practical matter to resolve: figuring out where to place the machine’s pedal so that I could operate it from the awkward height and angle of a wheelchair and with something other than my not-incredibly-functional right foot.
It took experimentation, frustration, and a few very wonky seams, but I eventually landed on a solution that was remarkably uncomplicated. After extensive research and brainstorming yielded no satisfyingly elaborate and effective method—the best kind, I usually assume—I simply placed the pedal on my sewing table in front of the machine and rested my forearm on it, positioning it so that my hand remained free to feed fabric. Over time, I’ve figured out how much pressure to apply depending on how quickly I want or need to sew.
Works like a charm.
This easy fix has allowed me to reengage with an activity that fills me with joy and a sense of OCD-fuelled purpose. Since my sewing machine made its triumphant return to my apartment and life, I’ve sewn a series of skirts and a few shirts, adapting them to make them fully accessible (customizing garments is proving a huge bonus of making them myself). As soon as I find a solution to my next problem—cutting larger pattern pieces—I’ll start sewing a dress and a pair of pants. After that, who knows.
I’m excited to continue to optimize my sewing practice, to find little hacks that’ll make the process work best for me given my current limitations. What I’m continuing to learn in all realms of my existence is that there’s very little I can’t do if I’m creative and patient enough to think through obstacles and find ways to work with what I have. The rewards, whether tangible, such as articles of clothing that I can easily put on and that don’t look half bad, or less so, such as the satisfaction of knowing that my ability to sew at all is the result of the work I’ve been investing in getting well, motivate me to keep making my life better and my seams straighter.
De Morbo Sacro: Life and/with Epilepsy 