You aren’t always born with a brave attitude, but it can be developed. My disability is complicated. I hate explaining it to people, because the things I say, make it sound like I’ll be useless soon; that my body is fading away. But I am certainly not useless. I’m not one to talk about religion or God, but I almost feel like I was given this disability as an opportunity to make change. This past year has been an amazing journey that really showed me how to change my attitude. This was the year that made me realize, I am meant to be here. I am meant to do something to inspire others. Every time I get an email or a comment from someone who read my blog, it gives me inspiration to write more and do more to spread awareness. People tell me that I’m inspirational and brave and I’ve never heard words like that being said towards me, until I started to talk about FSHD.
I never thought that I would be openly talking about FSHD to complete strangers but here I am, a year later, with so much accomplished in terms of “FSHD”. I was able to get the scapular fusion surgery and educate others on my recovery, the outcomes (positive and negative) and how it works. I posted about my disability on Facebook for 1000 of my “friends” to see (super scary). I’ve posted countless articles to educate those friends about what FSHD really is. I’ve been working on a documentary, for which I’ve released two trailers for all of those friends and strangers around the world to see. My mother, uncle and I went to a biotech company who’s goal is researching FSHD treatments. We told our stories in front of the entire company (THAT was awesome). I saved this next one for last because it was what gave me the courage do most of the other things. This past spring I participated in a public speaking competition. I have never done something like this, so it was already kind of scary. I decided to talk about FSHD and how I am not going to let it defeat me. You should have seen me up there. I could not stop shaking and I was afraid I was going to mess up the whole time. It was the first time I have ever talked about my disability in front of complete strangers. I was scared how people were going to view me. After it was over, quite a few people complimented me on my bravery and that really comforted me. I felt like I had really accomplished something. Ever since then, I haven’t stopped spreading awareness about FSHD.
If you are somebody who also has FSHD, I believe that it is your job to spread awareness. We need to educate people on this rare disease. So many people have never even heard of FSHD, so they don’t know how many people are affected by it. Just because it isn’t necessarily life-ending, doesn’t mean we shouldn’t find a cure. Everyone deserves to live a fulfilling life. Don’t be afraid to tell others about your disability. They won’t look down on you; if anything, they will look up to you.