VOA常速英语2019--体操运动员凭毅力克服埃莱尔-当洛综合症（在线收听）

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.

埃莱尔-当洛综合症有趣的地方在于：这种病很常见。每5000人中，至少有1人患有埃莱尔-当洛综合症。甚至或患病比率可达1/100，这样高的比率也很常见。但这种病确诊的比率却不高。从10岁开始，我就开始寻医，而3年后，我才确诊为埃莱尔-当洛综合症。有多位医生曾告诉我，我什么病都没有，说我是自己编造的，说我只是为了吸引别人的注意，说或许我只是不想学习体操，或者我没有朋友。如果我幸运的话，医生会耸耸肩说，我也不知道你有什么病。从我会走路起，我就成了一名体操运动员。故事要从我10岁开始说起。

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.

10岁的时候，我背部受了伤，因为我在单杠上做大回环的时候，是以蝎子式的方式落地的，也就是，我的胸贴着地面，我的脚卡在2个垫子之间弯过头顶，整个人像个球一样堆在了一起。我确诊后，我们才知道妈妈也有这种病，而我的祖母之前也曾做过2次脊柱手术，但也依然没有诊断出来。祖母也有这种病。很不幸，这是遗传病。面临是否做脑部手术的抉择时，我们很难下决定。但对我而言，我只感受到一点：我这辈子基本完了。但当我开始放松脊椎，并修复我头骨和上椎骨的问题时，情况有了好转。

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.

我开始能记事儿了，能学习了，也能开始正常生活了。为了挺过每一天，我要吃30-40颗不同的药丸。我在手机上设了闹钟来记住要做的事儿。不然的话，我会很疼，甚至在地上昏厥过去乃至变瘫痪。我很幸运有3个不同的头衔：白橡树小姐、弗罗斯特堡小姐和现在的阿勒格尼县小姐。

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.

一年的时间都要如此。一生中的一年是365天，这一年里你所做的事情让你形成你对这段时期的印象。我可以带着头顶的皇冠坚持365天，为我的社群成员服务，为其他病人服务，为他们发声。

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.

每一天，我都将这个财富的作用发挥到极致。每一天起床后，我都面临一个抉择：是让困难决定我的一生，还是竭力跨过困难。这个过程很艰难，做每件事情都有代价，但今天，我已经做出了决定，那就是穿着华丽的礼服站在这里，因为我要向世人展示一切皆有可能。