I was an auto mechanic once. My arms were always weaker than they should have been, but I got through it. Then one day, after months of tripping over my right foot, I finally went to see what was wrong. I thought it was an old sports injury.
Nope.
I spent the next several years doing what most people do — ignoring it. Then panicking. Then attacking it in the wrong ways. I tried things that didn't help. I avoided things I shouldn't have. I made decisions based on incomplete information because complete information was genuinely hard to find.
For most of my adult life I identified as my disease. It took a long time to let it inform who I am without letting it conform who I am. My faith in God deepened in ways I couldn't have predicted. Learning who I am in His eyes turned out to matter a lot more than whatever the world was reflecting back at me.
I'm based in Northern California. My wife is my number one champion in every sense of the word. I'm a woodworker when my energy cooperates — hoping to get back to the shop more as things stabilize.
I'm not a doctor. I'm not a researcher. I'm someone who has lived with FSHD for over twenty years, figured out a lot the hard way, and got tired of watching people start from zero.
