Wednesday, June 11, 2014

Muscular dystrophy

When I was little, my mother would take me for a walk in my MacLaren stroller around the playground right by our apartment building. She would chat with our  neighbor who came down with her son in an identical stroller. As they talked  there was nothing for us to do but to stare at each other and wait until they were ready to go. Back then I didn't know how much older than me he was. Skinny and small you would never guess that he was my brother's age. Seven years gap between us. I don't think I knew what he had back then. My mom told me the story years later.  I believe he collapsed in the first grade. Never got to experience much of the school life as he was diagnosed fairly quickly and from that point on his condition progressed. Throughout the years we would bump into them on our way home. My parents bringing me home from school, them just catching a bit of air and sun in front of their apartment building. This isn't a nice or an easy thing to say, but my parents always used him as example when talking to me about how things always could have been worse and I should be happy that I'm as mobile as I am. Although mother to mother, my mom's heart cried out to her everyday as we saw her son slowly waste away,I know that they were thankful  that I didn't have a progressive condition that would take my life in the end. He passed away at 21. His mother, always hopeful and extremely religious turned to her faith and that allowed her to cope. I always wished I could do more and that image of a boy, of a man trapped in his body is forever vivid in my mind. Imagine my excitement when Muscular Dystrophy  Foundation asked me to get involved with an event of theirs. And picture my disappointment when a few weeks later I had to decline. Getting involved with other disability causes would be amazing. We can change the world together, we can team and network. Their event included having members of the community "locked up" for a day having members of the community buy them out. And I was fine with that. But they wanted me to do one thing I couldn't - fundraise on their behalf. I said- I'm fine donating my time, use me in other ways you can think of, but I have hard enough of a time getting my contacts and friends donating to my foundation without confusing any other cause. This is the make or brake time for FDAAF and if I don't double down on my fundraising efforts, the thing that I'm trying to build, that I dedicate most of my waking moments to will never \materialize. MD is a very worthy cause and I applaud the MDA for taking the issue to the public. You should support it if you can. They were very understanding of my limitations and in fact thanked me for being involved in disability causes in other ways. How could I not be? I'm as much about disability causes as disability causes are all about me. I hope that one day we'll find a way for all of us to work together. I like the idea of creating a unified disability front in Florida.

No comments:

Post a Comment