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.