People who known me know that I am a maker. It sort of defines my entire life and how I live. My basic values, my mantras, my need to upcycle and reclaim. What not everyone knows is that I also am defined by something else. Something that is invisible on the surface, yet constantly reminds me it is there every minute of my life, and that is muscular dystrophy. My whole life, up until my diagnosis at age 12, I knew something was not quite right. Be it lagging behind in track or weird muscle cramps after gymnastics. Something felt off. After my diagnosis, it had a name, McArdle’s Syndrome. I found out I was part of a small community of people throughout the world, nearly 1 in every 100,000 who suffer from this disease. It changed my life. No longer was I able to wrestle, run, or do competitive sports like my peers. I would immediately cramp up and then live in a hospital bed for weeks at a time recovering. Suffice it to say, I had to find other passions to sustain me.
I took up guitar, shrugging off the constantly cramped fingers and hands that would turn into claws from twinged muscles. I took up swimming and bike riding, everything had to be low impact and low strain. Since I had always been crafty and into making things, I found this a good activity to keep me active and my brain engaged.
I built everything as a kid. Potato canons, slingshots, rockets, robots, rope swings, tree houses, skate ramps, motorized scooters, you name it! As young teen, I even enrolled in a local junior college to learn electronics. I was hooked on a trade that would be low impact with high yield. Making was my outlet. Yet I had to be careful to not overdo myself as building supplies can be heavy and sometimes require a lot of effort. Over the past few years, I have definitely found myself in the hospital multiple times after a bad fall or accident or pulling a muscle. Thankfully nothing life crippling has happened and I continue to make every day.
While this disease affects me every second, I do not let it dictate my life. I still get into the shop to carve, sculpt, weld, grind, cut, and sand. I may go slower than other makers and my projects might take me longer to produce because I need more breaks, but when you have a passion and a drive, why let anything stop you? So when you see me rubbing my cramped and clawed hands after cutting dovetails, or sitting down because my back has seized up after grinding for a thirty minutes, know that I am happy as hell doing what I love for as long as I can do it.
For me, true strength does not come from brute strength, it never has. True strength to a maker with muscular dystrophy, comes from perseverance, hard-work, and being maker-enough to go slow and take my time.
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Thanks for reading.