Ha--HA!!!! Victory is MINE! Why am I so excited, you ask?? Well, today I embarked on an arduous journey...one I have travelled many times. And though I have never before reached the end of the journey, this time, I emerged victorious...today I finally managed to beat my father in TRIVIAL PURSUIT!!! I'm sure he is reading this right now, none too thrilled that I have shared this with you...but I just couldn't help myself! You don't know what a tremendous amount of brain power it takes to accomplish this...I have been trying to beat him in this game for YEARS! I almost always put up a very good fight...almost! And just when I think I am reaching my goal, one of two things happen. Either my father snatches the last wedge out from under me and wins the game, or I get stuck on a history question about a man from 1852 named Rhutzhana Vowolsklovitch, who changed his name to Yurih Ploponiketh (you know, to make things easier,) before becoming famous for inventing paper bags. Then my father snatches the last wedge...and wins, once AGAIN.
Does this mean I am smarter than my father? Hardly...it all comes down to timing. All the clocks were in synch...all the lights turned green...and I got a fairly easy history question just when I needed it most (and it didn't involve anyone named Yurih!). I also believe that in order to accomplish anything in life you need a little courage, and the willingness to take a chance. Believe me...if I weren't willing to be humiliated all these years for my LACK of knowledge, I never would have learned how great it is to win! And qualities such as courage not only come in handy when trying to beat my father in trivia (a man who knows endless facts about everything...really, he drives me CRAZY), these qualities also help with daily life. I'll give you another example about courage (or lack of it), if I may...I suffer from terrible stage fright, though I come from a very musical family and a lot of my childhood included singing in concerts on stage. Speaking in front of large groups is hard enough, and I tend to talk with my hands...so the more people are looking at me, the more it makes my hands flap--until I look like I'm swatting at flies. Singing a solo in front of people is even worse...it makes me want to pass out! I was a member of my father's Festival choir for years, and have sung in several local performance halls...such as Albany's Cathedral, The Egg, and the Troy City Music Hall. You see? I'm okay in GROUPS. I can hide in a group...it's not all that hard. I'm short, and I know how to scrunch down behind the person in front of me. But anytime I've attempted a solo, things start to go black around the edges, and I have an incredible urge to vomit. And yet, I still dream that one day I will shed this fear and find the courage needed to stand up strong and proud and belt out a tune! I have to tell you that I am quite envious of certain family members, most of all my brother--who is one of the most talented, funniest and bravest people I know to date. P has his own singing group called One Man Short, and once or twice a year they perform a concert, often to raise money for a charity. They are simply AMAZING...there's really no other word that better explains their talent. And when I watch my brother get up on stage and sing with his group...or even perform a solo of his own, I see his bravery and hear his voice, and I am very proud! I would love to have the courage to be able to sing a duet with him someday...for it would be an honor. For now, though, I'll have to be content with sitting in the front row of every one of his concerts, clapping as loud as I can!
As I have been trying to help raise awareness for Charcot Marie Tooth syndrome, I had to find a way to speak out. That was the main reason I started this blog. Even though CMT is a very common disability, it is still not widely known, often to the very people who suffer from it. And it hasn't always been easy to 'hide' from the world, because I have this disability that often gets me noticed. Maybe that's not such a bad thing? It certainly has forced me to leave the comfort of my shell every so often, if only to answer people's questions...and I found the courage to go to my first CMT support group meeting last year, and talk to others like me. Don't get me wrong...that is something I really wanted to do--though sometimes the things we want the most are also the scariest. And being a rather shy person who has trouble in front of groups, this blog allows me to raise awareness without having to shout it from the roof tops...I can write about my symptoms and frustrations, my successes and victories, all within the comfort of my own home. No hand flapping here! And I've been fortunate to meet so many wonderful people...some with CMT, and some who support a loved one with this disorder. I even recently discovered a CMTer who lives and blogs in Canada...she's funny and honest about her disability, and a definite read! If you want to check out her blog, go to http://natteringnic.blogspot.com/. I'm sure you'll enjoy it!
Another site to check out is the updated Charcot Marie Tooth Association website at http://cmtausa.org/, which seems to be more user-friendly...and you can post your own stories about living with CMT, and read about the experiences of others. I have yet to post anything on there, but plan on doing so in the near future! And in the meantime, I'll keep awareness growing from my end...with the keys on my computer. Every so often I'll make sure to break open my shell, go out into the world, and raise some more awareness the old fashioned way--by word of mouth. I may not be speaking in front of an audience, or singing any solos yet, but who knows? I won Trivial Pursuit today...so anything can happen!