Ok, so here goes....
Aside from my efforts in September, I typically am not a public person, especially since my Dystonia diagnosis. However, a battle worth fighting is not without it's setbacks and some hardship.
As a Dystonia Patient for the past 20+ years, I have enough short stories, anecdotes, and experiences to fill a small book. The issue with that, however, is that a vast majority of these are of unpleasant nature for one reason or another. I am not a drug addict, nor am I an alcoholic, although have been accused as such by medical staff in spite of the fact I had already been fighting Dystonia for 11 years by that point. What is even sadder is that these same experiences, and worse, are an all too common and repetitive part of the Dystonia journey.
While I generally only post pictures of myself when I am feeling strong, confident, and in the right light. But what I am posting here is what I hide. This is me, the real me. No fresh haircut, no bright light to highlight my eyes and hide age lines. This is the person my wife and my kids see on a daily basis. The Dad and Husband they help support when Dystonia decides it's time for the next round of our lifelong battle.
I am exhausted, I am in pain, but I fight on. No need for pity, no need for praise, no need for any of it.
So why post it? Well, I post it for the tens of thousands I hope to help during this years Dystonia Awareness Campaign in September.
First is a photo staged in a window on a day I am feeling strong. The second is minutes after a 40 minute battle against my own body including the daunting struggle for air as your body decides to lock up your chest, preventing any air in or out.
Again, I want to see no pity, no praise. I want you to be aware that there are thousands of people out there fighting this every day.
What I hope for is when you are out with your families and you see a building, a monument, or a landmark donned in blue this month, including our beloved Big Fiddle, that you at least try to find the time to tell those in the car with you, why it is blue.
With awareness comes attention, and with attention comes research, and by the grace of all that is good with research comes a cure. Or at least better treatments.
Thank You.