Running in the Dark Under the Watchful Eye of the Sun

Published: September 19, 2013  ~   0
By Laura Edwards

john and LauraMeet my pinch runner for my blindfolded runs – my better half, John. After work tonight, John offered to take me out again – or, as he likes to say, “take his wife for a walk” (on the bungee cord, which does kind of look like a short leash from more than five feet away).

We struck out just a few minutes after 7 p.m., so we had plenty of daylight left. I pulled the blindfold down over my eyes for the 11th time overall, but just the second time before sunset.

Running in the “dark” opened my eyes to a whole new world; in all of my previous training runs, I’ve heard sounds and felt sensations that were always there but drowned out by the wealth of visual information I’m able to take in and process with the 20-20 vision I get from strong contact lenses or glasses. I’ve picked out single notes from cricket symphonies and come to know the touch and feel of warm raindrops on sweat-soaked skin.

I’ve picked out single notes from cricket symphonies and come to know the touch and feel of warm raindrops on sweat-soaked skin.

But running in the dark under the watchful eye of the sun is an entirely different experience. As John led me around our neighborhood to help me train to run a half marathon blindfolded in honor of a girl who’s anything but ordinary, suburban noise – the soundtrack of life as usual – filled my ears. A young boy said goodbye to his grandma; car doors closed. Kids played in a cul-de-sac while their moms stood in a driveway and talked. A dog got away from its owner and ran toward us, so we practiced coming to a stop without adding an unwanted flip and roll. A woman taking a walk said “That’s amazing” when she approached us.

John and I don’t live in a small neighborhood; with 800 houses inhabited by mostly families, we easily have over 3,000 neighbors. But it’s still a small corner of the world when you consider that seven billion people live on this planet. And yet, so much life – so many memories – happened in the short time it took my husband and me to run three blindfolded miles on its streets.  I can’t tell you a single thing about what that boy or his grandma looked like or what game those kids played, what kind of dog came to say hello to us or if the walker had kind eyes. I love my blind runs, but I miss a lot, too.

Batten disease steals so MUCH from my sister. And that’s just the blindness. When I pull that blindfold down over my eyes, I disable my vision, but I don’t give myself seizures or cognitive impairment; I don’t take away my ability to walk – in fact, my legs work just fine (even though my ankles are another story); and when I get a runner’s high, I feel invincible, like maybe I’ll live forever.

But then, the run ends, and I take the blindfold off, and I’m just me again – the sister who got a healthy copy of the Batten disease gene. Taylor didn’t do anything to deserve two bad copies of that gene. It makes me mad as hell that she got them anyway. And I’ll never stop running for her.

But then, the run ends, and I take the blindfold off, and I’m just me again – the sister who got a healthy copy of the Batten disease gene.

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!

The Path Not Chosen

Published: September 18, 2013  ~   4
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!