The MDA marathon holds an interesting spot in my heart. When I was a kid, for some odd reason I often found myself awake through the night what seems like every single labor day. I found myself awake the entire night not because I wanted to watch the marathon, but because I was having bleeding issues thanks to Hemophilia.
I don’t really know why always on Labor Day. These days school starts after labor day, but in those days it started a week or two before labor day. So it is entirely possible that I was not used to the work that classes put on my body and my body reacted in a negative fashion, conveniently in time for the MDA Marathon.
I would never in a million years consider the Marathon to be Grade A quality television. However, in those days, even the few cable networks that existed tended to put paid advertisements or rat races on. There was very little else to watch on television so the marathon was a welcome relief from my nightly pains. There would be a number of interesting talent and singing acts, it was like watching America’s Got Talent all night long, except the talent was actually good and worth watching from time to time.
When I was a kid, my mom told me that the MDA gave money to Hemophiliacs. I honestly can’t figure out if she was telling me the truth or lying in order to give me a better connection to the marathon and all the kids with MD. To make me feel more special. What I do know is that they don’t support Hemophilia anymore, whether they did or not in the first place.
I oftentimes wish they or someone did. I mean, I’m not saying that the Hemophilia Foundation is without money or anything. But I feel the money that it does have does not match the ratio of how much Hemophilia costs for people like me in order to survive. Here’s a hint, Hemophilia costs more than MD. I don’t want to take away from MD, but it feels sad to me that things like AIDS and MD and hell even Autism are worried about more now a days than things like Hemophilia.
Is it because there are fewer of us out there anymore because AIDS wiped a ton of us out in the 80s? Is it because it is a disease that affects mostly men and boys so you don’t see pictures of little girls struggling? Is it because it can be a very hidden disease? 4 out of 5 days I walk around as if I’m completely normal even if I am in pain, I have learned to cope with it to such a large degree that no one can tell. Or is it because Hemophilia is known for being a disease created by incest and that is too taboo for modern life? I don’t know why it doesn’t get much national attention but the MDA Marathon more than anything now doesn’t give me a positive feeling or a personal connection anymore.
It seems fitting that last year Jerry Lewis retired from hosting the marathon and that in his place they chose to put in trendy “I host everything” Ryan Seacrest. It exemplifies the disconnect that I now have with the show that used to get me through the night.
It is ironic though… I missed it by a night. Saturday night I was up all night.
As an aside, if you do want to help out, you can donate by going to the National Hemophilia Foundation’s website, or clicking here.