What it’s like to have your athletic abilities taken away from you.

I’ve never really talked about what it’s like to have so many abilities and strengths and then lose it all. Something that is different about FSHD for me, is that I started out being this super athletic child who played so many different sports…and then a few years later it was all taken away from me. When I was about 3 I started gymnastics; I did that for 9 years and then quit. My mom said she wanted me to quit because she could see that my FSHD was becoming more noticeable to her (although I never noticed and she didn’t tell me). I quit for my own reasons and then started field hockey, track and lacrosse throughout middle school. Even in middle school a lot of my abilities were affected by FSHD and I wasn’t able to play as well as the rest of the girls. As I got to high school I really started to see the effects of the FSHD come on and realized I couldn’t do any of my sports because I could no longer run. I decided that I would tryout for the sailing team (since I’ve been sailing my whole life). It was an amazing 3 years on the team; I won races and sailed everyday in the spring until my senior year when my back pain was getting to be too much to stay on the team. I ended up having to quit and now I know that sailing on a small boat would never be an option for me again, since I can no longer do most of the things involved.

What is it like to get every sport you enjoy taken away from you? I constantly think about what I could be doing right now. I could have been on the lacrosse team at a D1 school or the track team, but instead I’m here just thinking about all of the possibilities. I could be going for a run every morning or swimming laps in the pool for exercise. It’s the little things that piss me off and get me to thinking. Sometimes I wonder if it would have been better to be born without the ability to run, but then I realized that I would have never had those amazing experiences. At least I know what it is like to be able to do a round-off backhand spring back flip, or run 3 miles. At least I can say that I did those things at least once in my life. People take being able to run for granted (which makes sense), but at least I have cherished those times and really appreciated what I could do. It makes it easier for me to never take anything for granted because you never know if it is going to be taken away from you. Although I try to be positive and it sounds like nothing can bring me down, I still think about how different my life would be if I was “normal.” We can all pretend that we are strong and nothing can stop us, but it’s okay to be vulnerable and angry sometimes. I was able to enjoy sports that brought me so much happiness and someday I will watch my kids enjoy the same thing and not have to worry that it will all be taken away from them.

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