The Equinox Was Owned - Usher Syndrome Awareness Day 2017

I meant to write earlier. 2017 has been a supreme blur and I meant to tell you all about the things - how I trained for my first half marathon, how I went to Iowa for the second time to see Dr. Stone, how I ran my first half marathon and how I cried when I crossed the finish line. I was going to write about seeing Hamilton in Chicago and how my daughter clasped my hand for the whole first act, just in complete awe that we were in that room where it happens, how tears rolled down my cheek during "Yorktown." How I stopped taking the stairs after I've been out for a walk during my lunch break because my eyes could never adjust to the dark of the stairwell and I kept tripping over stairs. How we went to California this summer and in the dark strange room, smashed my hip into a dresser and it ached for days. How I went to my first Usher Syndrome Conference in Chicago and I actually got the nerve to leave my hotel room and sit down in the audience and absorb it all, even though I was scared.

Some days, I'm still pretty scared.

Saturday, September 16 is Usher Syndrome Awareness Day.

I get scared all the time when I think of what I don't know or trying to anticipate what a future might look like.

But as Dr. Stone said this July in Chicago: We're close enough to walk.

He spoke a lot about hope, and I felt relieved the whole while to know that I have the advantage of having Dr. Stone and the amazing crew at Iowa on my team.

“I mean you can see it. You can walk three miles an hour. So if, if actually they would just  not let the car go anymore, okay, if the FDA showed up and would not let the car go anymore, you could simply get out of the car and walk downtown, and that is actually where we are on the development of cures for Usher Syndrome.”

Without taking this to a totally political place, I'll say that having a disease like Usher Syndrome - a disease with no treatments or cures - is terrifying in the age of this new president. I've been disappointed by a lot of what I've seen so far, and I've feared that the administration would cut essential funding to essential research and slow the progress that's got us so close we could maybe get out of the car... and walk.

We probably can't rely on politicians to do what's right for us (oh, that was a news flash, right?). Fortunately for those of us with Usher Syndrome, there are donors who are generous with their funds who are willing to support progress.. And I am so grateful.

For the past 26 days (y'all... that's a LONG time for an awareness campaign!), so many of us have been doing what we can to raise awareness. And when the Own The Equinox campaign is done, the Usher Challenge goes on. I'm throwing links to both of those in the bottom of this post - both benefit amazing organizations doing different work - for the same group of people just like me.

In the past year, my hearing seems to be essentially the same, as does my vision. I had a horrible experience with a stupid eye doctor this winter when I went to get contact lenses. I had to explain to him what retinitis pigmentosa is. And while I may not have actually uttered the words, "Are you SURE you are a real doctor?!" out loud, I sure was thinking them. And then bless his poor heart when he tried to upsell me with photos of my retinas! Nah, I'm good, man. I've seen 'em. They're broken. For now, anyway. (That janky eye exam is how I will happen to spend a portion of Usher Syndrome Awareness Day actually GETTING AN EYE EXAM - it's not just commitment to the cause, but a need for new contact lenses because I'm pretty sure the dude wrote me the wrong rx months ago, and well, I've been too busy to fix it but now I'm out of contacts and HEY RUN ON SENTENCE HOW ARE YOU?).

Admittedly, not experiencing a significant decline helps my frame of mind. It really is progressing slowly, at least for now, and that's a huge relief.

Research needs to keep moving faster than the loss of my vision. That's pretty much all there is to it. Research just needs to keep being faster.

And that's why these campaigns - as annoying as they may seem to some - are sooooo essential. Because they give Usher Syndrome, and those of us with this disease, a bit of a moment, if you will. Our chance to tell you about it, to ask you to read our stories, and encourage you to be aware of what this disease is. And sure, if you felt so inclined, maybe you could support one of those organizations below.

I'm training for my second half marathon - it takes place in about four weeks. I can do hard things, I can still reach goals. I'm still tough. In two months, I'm taking my mom to Chicago where once again, I plan to sit on the edge of my seat during "Yorktown" and realize yes, how lucky we are to be alive right now. Next year, I won't be in Iowa. Dr. Stone says I can come every two years... and that to me feels like a bit of a reason to breathe a moment and let go of some of the fear.

(I'm trying)

I barely remember my life before my Usher diagnosis and that seems a bit of a shame really. But you can't go back - only forward... so here I am, one foot in front of the other. Probably in running shoes.