Aware.

Twelve miles. That’s what was on my training plan for this weekend’s long run. Two weeks away from a Ragnar Relay, and just over a month away from a half marathon. I’ve been slowly building my mileage and I decided that this weekend I would tackle my long run on Saturday, despite the fact that today’s schedule was a chaotic one.

Twelve miles.

I wanted to do the mileage today as a way of showing myself that I am strong and that I can do hard things.

Today is Usher Syndrome Awareness Day.

When I was first diagnosed, my world felt wrecked. I was very afraid. I had a lot of fear about what my life would be like. I had a lot of fear imagining the unknown. I imagined the worst, as I tend to do.

Someone says you have a genetic disorder that causes progressive loss of vision and hearing, that it’s the leading cause of deafblindness and if your brain is like mine, you imagine yourself robbed of those two sense, unable to communicate with the world around you. That first year I cried. A lot.

But some of that fear has faded over time. In part because I can tell that the loss is slow and that even if the worst DOES happen, it won’t be tomorrow. In part because I now have a phenomenal crew of docs in Iowa who keep me focusing on medical research being done and staying positive about it. In part because there’s really NOTHING I can do about it right now anyway.

And so I run.

I started running just to see if I could. And I kept running because I was able to see measurable results for the work I put in. I could see that even if I wasn’t necessarily getting speedy, I was able to go further. And that felt really exciting. Being active and fit has been a focus throughout my entire adult life thus far and I wasn’t about to stop because of my stupid eyes.

A 10K. A 15K. A half. Another half. I’m never going to be a marathoner, but I have fun doing what I didn’t think I could.

Sometimes when I run, I'm very aware of my vision loss. I’ve tripped over more sidewalk cracks that I care to admit (but if no one sees you, did it even happen?). Sometimes I’ve been startled when another runner passes me because I wasn’t able to see them in my periphery. When the sun starts to fade, I hurry as though I’m going to turn into a pumpkin - because I don’t want to be out in the dark without at least a headlamp. My night vision isn’t great.

This morning, I set out in the fog to run twelve miles. I wanted to feel like a badass. I wanted to be able to say, See? I’ve got this. I’m not scared anymore. And even though I cut the run a mile short (eleven was all I could manage), I know in my heart that pre-Usher Sarah wasn’t doing this. And I’m proud that I continue to put one foot in front of the other.

Today is Usher Syndrome Awareness Day… in Michigan, there’s 51 minutes left. If you don’t know about Usher Syndrome - and you may not! - here’s a good resource to learn more:

Usher Syndrome Coalition

I still get scared sometimes - I’d be a fool not to. Most days, though, I’m just living life as best I can. Aren’t we all?

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.