The Path Not Chosen

By Laura Edwards

blindfolded run Sept 18Charlotte’s Thunder Road Half Marathon is less than two months away. I could run a full marathon tomorrow, but I promised my little sister, and the rest of the free world, that I’d run the half marathon blindfolded. That’s right – blindfolded. I gave myself five months to learn to run in the dark, guided only by the feel of the road beneath my feet, verbal instructions from and occasional tension placed on a three-foot bungee cord by my sighted guide, Andrew Swistak.

Five months sounds like plenty of time to learn how to be blind, right?

When I woke up this morning, I’d run in my world of darkness a grand total of nine times. Andrew and I live pretty crazy lives, so it’s not always easy to get together, even for a 30-minute run.

So tonight, when my husband, John, said he’d pinch run for Andrew for a second time, I had my blindfold on before John could lace up his shoes.

My husband is talented at many things, and I admire and love him for taking a turn on the other end of that bungee cord – my lifeline on these runs. But he’s not an experienced runner like Andrew, and while Andrew’s only led me on eight blind runs, eight is a heck of a lot more than one. On top of that, my ankles are still wobbly, and I just put 60 miles on them in Grand Teton and Yellowstone National Parks.

So we took it slow – 11:33/mile over 2.07 miles, to be exact (almost three minutes per mile slower than my average pace for a half marathon). We had a few hiccups. We haven’t mastered our spacing or our tension on the cord or our timing for turns the way Andrew and I have mastered all of those things.

But I didn’t fall. I didn’t hurt my ankles. And when you have 20-20 vision with contact lenses and you promised the world you’d run a half marathon blind, 10 practice runs in a blindfold feels better than nine practice runs in a blindfold.

And my pinch runner and I might have been slow as a couple of snails on practice run number 10, but I like to look at the bright side of things. I got to spend time with my husband – time I wouldn’t have had with him otherwise; I didn’t hurt my ankles, whereas quickening my pace could have been dangerous; slowing down helped me experience sensory things, such as the feel of a divot in the pavement, a “hello” from a passing neighbor and a cool breeze on my skin, autumn whispering after the lingering summer heat died with the setting sun.

I woke up this morning hoping I could notch blindfolded run number 10 with Andrew, my sighted guide for the Thunder Road Half Marathon. After all, the more miles we log together, the better we’ll be together on race day.

But instead, I hit the streets with my pinch runner. And though it’s not the path I would have chosen, I made the best of my situation.

Race training schedule conflicts don’t come anywhere close to having a monster like Batten disease in your genes. But we can’t do anything to turn back time; to change what’s already encoded in Taylor’s cells. Though we cherish the memories of the days before the knowledge of Batten disease came crashing into our lives, we can’t look back. We can look at the photos that captured Taylor’s eyes when they could see; in my mind’s eye, I can see her running down the beach and crashing into the waves, her golden locks blowing in the breeze and her silent laughter filling my ears.

We can’t bring back the past, but we can change the future. We can change it for lots of Taylors.

Batten disease isn’t the path I would have chosen, not in a billion years. But I’ll make the best of this situation, even if my own life depends on it. I’ll keep running this race till the very end.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

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