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.
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:
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?