A Letter to the Disease That Tries to Cut My Life Short
Dear Muscular Dystrophy,
What doesn’t challenge me doesn’t change me. Boy, have you changed me. But to be honest, I don’t really think about you all that often. I can’t even really be mad at you at this point. After all, we grew up together, and I’ve never known life without you. Certainly you’ve made most aspects of my life more challenging, but if life were easy, it wouldn’t be interesting. The low points in life are what allow me to fully appreciate the small things.
You’ve made all physical aspects of my life a challenge. You’ve taken away so many of my abilities. You took away my ability to walk, then my ability to stand and now the use of my legs altogether. You’ve denied me the ability to sit up straight. You’ve stolen from me the possibility of ever feeding myself again. You’ve humbled me by forcing me to ask for help to use the bathroom. You literally leave me short of breath. Recently, you tried to stop me from ever eating solid food again.
But I can — and do — live without all those things. Despite taking so much away from me, in a lot of ways you’ve also given me things for which I’m grateful. You’ve changed my overall attitudes and outlook on life. I appreciate all things so much more than I probably would if you’d never come into my life. You allow me, sometimes force me, to live in the present and be thankful for each and every moment. Because of you I know I need to treat everyone with a high level of respect. You’ve helped me reach out and find people who probably wouldn’t have been in my life without you. My caregivers, my tutors, my physical and occupational therapists, my doctors, just to name a few. You’ve blessed me with the ability to trust, since I must rely on others for every single aspect of daily living.
Sometimes you really scare me. You almost killed me a few times — one time in particular. You stopped my heart and convinced my doctors you were going to end it all. They even started telling my parents to plan for my death. But I wasn’t going to let you off the hook that easily. I fought back. And I’m going to continue to do so; I don’ care how you feel about it.
So overall, Muscular Dystrophy, we might as well get used to one another because we’re not going anywhere anytime soon without each other. This isn’t going to end. And who knows, maybe one day somebody will find a way to get rid of you forever. Wouldn’t that be incredible?
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