I remember as a tween loving Dean Martin and Jerry Lewis movies. Could anything be more hilarious? Little did I know that I would grow up to put Jerry Lewis on a pedestal because of his work on my behalf. Yes, I am one of Jerry's kids. Diagnoised at age 33 with a wierd condition called myasthenia gravis, I have lived for 20 years with an incurable autoimmune disease. MG is not a form of muscular dystrophy, but is a "relative" if you will. It's incurable and can be deadly. It can also be controlled and can even go into remission and stay that way for a long period of time. It's not degenerative and it's not something that I passed along to my children--two things I am really grateful for.
Still, every year during the telethon I watch and cry. I don't want to, sometimes it's late into the 21 1/2 hour telethon that I even allow myself to turn it on. Sometimes, I don't know what I am crying about--is it joy because I am doing so well or some years so poorly; angry tears for the suffering the disease has caused; tears of relief that I am in better shape than some of the patients being interviewed; sadness at what my children have had to endure? And every year I have hope. As the tally goes higher and higher I think--this may be our year! The year that a cure is found. A year that I and so many others stop having to plan their lives around their disease. This may be the year that muscular dystrophy and all it's related autoimmune diseases go the way of polio and tuberculosis.
So, if you can--watch the telethon. Listen and learn. Pray for the people you see interviewed and for the researchers working to find a cure. Reach into your pocket and pledge. Last year, we raised a record 63.8 million dollars, but it wasn't enough. Another year has passed and we are still hoping.
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