I am in a different place this year than last - in some ways, that's a good thing and in some ways, it's a less than great thing. This year I am less scared about my eyes. Good. This year, I am more likely to get wrapped up with anxious thoughts about ridiculous things that a) don't really matter much and b) never really come to fruition anyway.
My theory is - because of course I have a theory - that I worried about my eyes so much last year that all of that fear and nervous energy had to go somewhere.
(SO NOT YAY. It sucks. It's not good. I'm working on it.)
But my point is:
Usher Syndrome rocked my world and not in a good way, like when you go out to eat and find out you showed up on $2.50 margarita night.
Even just the news of it, the possibility of the diagnosis and then the diagnosis itself, made such an impact in my world. I had never heard of Usher Syndrome before and suddenly it was this black cloud hanging over my entire life. That's...kind of big.
It's funny - I went to college originally planning to be a biomedical engineer. I wanted to do work that would make a difference to people, I wanted to cure stuff. I wanted to make my mark.
(And then I realized that I would make a rotten engineer, transferred to the b-school and hellllllooooo career in marketing.)
Maybe I won't be inventing cures - but I'm now counting on the people that do.
What I can do is tell you about Usher Syndrome. What I can do is raise awareness of the disease. What I can do is try to encourage people to support organizations like Foundation Fighting Blindness or the Usher Coalition,
September 17 will be the second annual Usher Syndrome Awareness day. As we lead up to the big day, there's a campaign running - and each day, until September 17, I'll walk or run at least a mile to raise awareness and to OWN THE EQUINOX.
Because... there are only two things I can do: raise awareness and try to make my life as good as I can.
This is me doing the awareness part.
As for the other... I'm working on it. I have a ways to go, I know. I'm trying to funnel that energy into better means - I've even started running this year (so far, I'm still a ball of stressy energy, so, I'll keep working). But, my job is to live my life as best I can and sometimes, well, I can do better.
Join me. Walk a mile or two. Read the stories on the Usher Coalition blog. Donate if you can. And when you see me getting a little bit nervous about stuff - because I do - remind me to breathe. Or hand me a $2.50 margarita.