Saturday, August 23, 2014

Let's talk about....Dystonia

First let me say that I am highly embarrassed that I have not written on this blog in MONTHS! I am so just happened and I haven't had the desire to sit still for a few minutes and update. That's not to say, I haven't thought about it; I just didn't do anything about it :) Summer's been a whirlwind. I'm sure others can say the same (especially all those who are now back in school!) So now, the real reason why I finally decided now's the right time to update the blog!

I've been thinking about the ALS ice bucket challenge that's been going around on Facebook. I think it's awesome to raise awareness of a disease that takes so many lives. I'm thankful it's raised so much money for the cause. But I have a different opinion of it then most probably. I've gotten a little jealous of it. Yes, that's the word I'm choosing to use to describe my feeling: jealous. You see, I'm so thankful that it is raising an awareness for ALS and that so many people are getting into it and doing it, but I'm jealous it's not for dystonia. Dystonia is not a "glamorous" disease. I'm not saying ANY disease is glamorous, but what I am saying is that dystonia is not a disease that famous people have picked up on, championed the cause for, raised money for, insisted that everyday people raise money for -it's a disease I had never even heard of until I was diagnosed with it. It's a disease no one knows about. But it's a disease I hate with all my heart! I hate it so much, I don't even like talking about it. I realized this when I had a conversation with co-workers about the ALS ice bucket challenge which then led into a conversation about dystonia. They encouraged me to make dystonia the new ALS ice bucket challenge and I had to admit that I didn't want to do that because I hate talking about it. Why I hate talking about it so much, I don't know - maybe it's because I'm still, in may ways, embarrassed by it. I hate using a walker. HATE IT. I'm STILL (even after 9 years of dealing with it and 4 years of actually having a name to it) fighting to prove to myself that I don't have it and that I'm "normal". But the truth is, I do have it. I do have to walk with a walker every single day. It does effect my life. It's not going to get better unless we come up with a cure for it. So maybe I should take up the cause. Not because I want to; but maybe, just maybe because I MUST. Something a co-worker said to me has been rolling around in my brain: what if it's YOU that becomes an inspiration to a little boy or girl that has dystonia? Then today, I was standing in line at a store waiting to return something and out of the corner of my eye, I saw a woman staring at me with my walker. If I told her the disease I had, she probably would answer like the 99.9% of the other people I've told with an "I've never heard of that". I hate the stares. I must make people aware of this disease. I don't want this disease. I don't want to talk about it. I don't want to give it the light of day. BUT - I have the disease. I've made up my mind that I MUST talk about it. I MUST give it the light of day. I MUST support the efforts being made to cure it. I really don't feel like I have the strength to do it mentally or physically, but I've got to get the word out. I'm one person. I know I won't win the world over to my cause. But as my neurologist likes to remind me, "Rome wasn't built in a day". I have NO IDEA what I'm going to do to get the word out about dystonia, but I'll get it out - even if it's just by living with it and maybe updating this blog just a little more :)

I'll start with this: September is Dystonia Awareness Month. I'm challenging myself to write on this blog every day in the month of September - whether it's a few words, a picture, quote or a little longer post, I want to take you IN to what living with dystonia is really like on a daily basis, so - pray for me - this is going to be a CHALLENGE!! While, I'm pretty much an open book on things I want to be an open book about, writing every day about a disease I have but don't want will be a challenge. So...I've got a week to prepare and then it's go time!! Have a blessed week everyone and I'll see you back in blog world on September 1 if not before!