Owning the Equinox...again.

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.

Owning the Equinox and finding a family

On September 19, the very first Usher Syndrome Awareness Day takes place. I mean, what are the odds, really - my genetic test recently confirmed the diagnosis (that is another post for another day because, well, it just is) and so when I need it most, suddenly there's a huge push to raise awareness of Usher Syndrome.

And along with that drive to raise awareness is the opportunity through social media to find so many other people who know exactly what I'm going through - because they or their children or someone they care about is experiencing all of these things. Strength in numbers isn't just a cliche, but a reality, really.

I cannot imagine how anyone dealt with any diagnosis of a great magnitude before the internet existed. Sure, there were probably support groups - but what about for something so rare? How did they find someone with that same rare thing when there wasn't wifi and mouse clicks and search engines to simplify the process?

I've been grateful to find people who know what I'm feeling. The UshFamily is growing, unfortunately - but it's also a blessing for people like me.

Today, was a hard day - not all days are hard, but today was. Today, I started thinking about what the progression of my vision loss might be. One doctor told me that I'd probably be blind in twenty years… and I keep coming back to that on the bad days: here I am slogging through life, busting my butt day in and day out to provide for my daughters and when I am about to hit sixty, when I am about to prepare for retiring, my so-called golden years… then I can be blind? Well. That sucks. It does. 

I need that to not happen. I need that to not be my reality. I need there to be research and cures and solutions. 

And the first step is awareness. 

Each day leading up to September 19, I'm walking (at least) a mile a day to raise awareness for Usher Syndrome, finishing up that 26.2 mile-a-thon with 1.2 on the 19th. And I'm joining people all over the globe in raising awareness mile by mile, or letter by letter, or day by day, to fight Usher Syndrome.


Join me in raising awareness. 

Make a donation.

Tell your politician type people that medical research IS IMPORTANT TO YOU, and challenge them to talk about it (as we approach the never-ending election year, this is gonna be huge for me - and I'm so afraid that this very important topic is going to get buried among so many other things - but it's crucial, y'all). 

And then? Go to Twitter and check out the #USHEQX tag and read their stories. Find their hope. Find some hope for me. Help make a difference.

This is a new road for me, and it feels like every other road in Michigan: full of potholes. Let's drive change, huh?