VOA常速英语:体操运动员凭毅力克服埃莱尔-当洛综合症

The interesting thing about Ehlers-Danlos Syndrome is it’s not rare. At a minimum, it affects one in 5,000 people, maybe even along the lines of one in 100, which is quite common, but it’s rarely diagnosed. It took me three years to be diagnosed beginning at the age of 10. I had doctors told me that there was nothing wrong with me, that I was making it up, that I was seeking attention, that maybe I just didn’t want to go to gymnastics or maybe I just didn’t have friends or, if I was lucky, they would just shrug their shoulders and say, Well, I don’t know what’s wrong with you. I was a gymnast from the time I could walk up until the age of 10 and that’s how this all began.

I had a back injury where I was doing giants on the bars and I landed in a way that I call scorpion style. So with my chest on the ground and my feet bent back over my head between two mats, kind of crumpled up in a little ball. When I was diagnosed, we found out that my mom has it, that my grandmother who had previously had two spinal surgeries without being diagnosed. She has it as well. It’s unfortunately genetic. When you’re deciding to have brain surgery, it’s definitely not an easy decision. But for me, what it came down to was I had pretty much lost my life. But after we began to de-tether my spinal cord and fix what was going on with my skull and my upper vertebrae, things got better.
I was able to remember things. I was able to study and I was able to begin to live a somewhat normal life. So to get through the day, I take upwards of 30 to 40 different pills, and I have to set alarms on my phone to remember to do so. Or else I’ll end up in a lot of pain or passed out on the ground or paralyzed. I’ve been really blessed to hold three different titles of Miss White Oak, Miss Frostburg and now Miss Allegheny County.
And you serve for one year. One year of your life, 365 days, and what you do during that time is, it’s really what you make of it. And I can serve with this crown on my head for 365 days and to serve my community and serve the other patients and speak out for them.
And there’s not a day that I’m going to let go by where I’m not using this to its fullest capacity. Every day when you get up, you have to make a choice: if you’re going to let the obstacles in your life define you, or you are going to try and rise of above them. It’s not easy and there’s a price for everything that you do, but I’ve made the choice today to stand in this gorgeous gown because I want to show that it’s possible to do these things.