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Day 7 of #30daysofMD Skye Anderson's story: “Crying about it isn’t going to change anything.” Those are the words the 12 year old me was met with by the doctor who had just confirmed my moms suspicions of me inheriting “her disease”. Facioscapularhumeral Muscular Dystrophy wasn’t some “mysterious diagnosis”. I knew what it was and what it did, which overwhelmed and scared me even more. All I could think to do was to keep it hidden. And I hid it well. That is, until my body wouldn’t allow me to hide it anymore. By the time I was a freshman in college I was rapidly weakening. My back started curving and I could no longer hide. Tears streamed down my face with that realization, then the coldest voice popped in my head “crying about it isn’t going to change anything”. I decided right then and there that I was no longer going to hide this part of me. A few years passed as I really started finding myself and what I found was that the more I weakened, the more my confidence strengthened. I felt proud and unstoppable. I reached out to the Muscular Dystrophy Association and told them I wanted to be a part of the organization. I began fundraising, giving speeches, interning in the Raleigh office, visiting summer camp, donating artwork to a gala, and meeting other people with Muscular Dystrophy. I finally felt like I was a part of something bigger than myself. In the beginning of the year, MDA contacted me notifying that I was selected to be their NC State Ambassador. Me?!?!! The girl who used to wear a jacket every day to hide her shoulder blades?! Being the ambassador is more to me than just a fancy title and some added responsibilities. It’s validation that a horrible disease is not equivalent to a horrible life. It’s empowerment that we, collectively, can cause a ripple affect of change. It’s knowing that I’m not just speaking for myself and many others who live with FSH, but for for future generations as well. Crying might not change anything, but sitting around quietly won’t either.
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