Austin, TX
I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a slight winging of my shoulder blades, but I was able to play sports like baseball, hockey, and tennis, and I was able to pretend that this mysterious illness was not my own.
I continued to play competitive sports throughout high school, but at the same time, I failed the New York State physical education examination because I was not able to do the required number of push-ups and sit-ups.
Fast forward five years, and I remember not being able to do the pommel horse in gymnastics and then staying afterwards to do some ridiculous self-effacing routine where I was doing half-baked somersaults around the room and telling a joke after each one like some sort of circus act. But I did not say a thing to anyone.
More symptoms started to manifest in my mid-20s. It was becoming more difficult to turn a blind eye to this disease, and more of an effort to hide it from others. That is when I started therapy. My consciousness was changing alongside my body.
I am happier today than I was 15 years ago, even though my body is much more limited. I try to see it as a spiritual exercise, learning that I am not just my body and I am not just my mind. I am not muscular dystrophy. It is a part of me, but it does not have me.
I think the moral of the story here is that there are things we can control and things we cannot. We can influence a lot more than we know by training our minds, cultivating awareness, challenging old ways of being and taking an active approach to creating new ones.