I’m 28 and was diagnosed with FA when I was 9. (That’s probably my most used sentence ever!)
I have brown hair and green eyes and I am 5 foot 2 inches tall (you didn’t want to know this?)…
I live in Durham, North Carolina with my boyfriend, Greg, and our crazy corgi, Finn. I have a BA in English and an MA in Victorian literature. (Nerd?) I have a handcycle and I do exercise a bit, but I’m not huge into athletics.
I don’t have an interesting backstory, I’m pretty typical. My diagnosis was a pretty smooth process. My biggest issue is scoliosis, which I finally got fixed in 2014!
When I was diagnosed as a kid, I didn’t understand. As I got older, I felt doomed. I made the mistake of believing everything I saw on the internet. I went to my first NAF meeting when I was a senior in high school and it really changed my perspective. I wasn’t embarrassed anymore and I saw that the future actually had possibilities. I had to start using a scooter when I went to college, but the transition was not hard because really…walking around a campus would have been miserable! I wasn’t giving up; I was opening up a whole new world for myself.
Since then I’ve done some cool things: I worked in Disney World, I spent a summer in Italy, traveled all over Europe, and lived near London for a year! I know it made my dad nervous to have me on another continent, but I’m glad I had the opportunity.
I would never have done these things without my supportive dad and boyfriend, and a lot of other people along the way. They don’t look at me and think “FA” and for that I am grateful. I am just “Mary.” I do things without thinking about FA too much. Sometimes I fail, and that’s OK because I was given a chance.
I don’t poke the FA bear and it doesn’t poke me back (too hard!), but I want to be proactive. I don’t want to sit back and watch FA take things from me and my friends; I want to be involved and informed. I want to surround myself with other FA patients who are doing something to further a cure. A cure would be wonderful, but the drive and hope these people have is possibly even better, and I can’t wait to be a part of it!