I kept telling myself not to write about this, but to write about other random things. However, I was inspired by someone’s courage to share about something he was ashamed of. So here goes. In the fall of 2013, after months of testing, I was diagnosed with a form of muscular dystrophy. I was fifteen and had my whole life ahead of me only to feel as though it all came crashing down at my feet once I was informed of this dreadful thing. This neuromuscular disease – to be exact, Limb-Girdle Muscular Dystrophy 2A – sounded so scary to me at such a young age. It still does at times. Other than a few very distant relatives who have/had it, I am the only one in my family who has it.
A few weeks after we met my relatives with similar diseases to mine, one of them died because her lungs and respiratory muscles had reached the point of exhaustion. This lady – in her 60’s – could no longer breathe on her own and passed away. I was newly diagnosed and this scared me so much. What was to become of me? Would I die a traumatic death in what suddenly felt like a few years? Would my heart or lungs become too weak to function on their own and cause me to disappear from the face of the earth, forever forgotten?
I keep my thoughts wadded up inside my mind until it seems like it’s going to burst at the seams. Sharing my feelings with people and making myself vulnerable is something that feels foreign to me. I am afraid to open up to people, to friends that care. Once in a while, I find the guts to let my feelings out and talk to someone. But that itself is rare.
I ask God, “Why? Why me?” I don’t feel like I’m strong enough to live with this disease. This happens to other people, it was never supposed to happen to me. Sometimes, when I start thinking about all the things that will happen to me in the near future, I feel as if my heart is going to beat itself out of my chest. When I feel this way, I shut my eyes and remind myself that I am still here, I am still able to walk. I remind myself to cherish these times. God has helped me so far, He has never failed me yet. These thoughts encourage me. I say to myself, “Don’t worry about the future, for now, I will live with intention.”