Finding My Sea Legs

Published: June 13, 2013  ~   3
By Laura Edwards

This fall, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K, raise awareness of Batten disease and support the gene therapy research Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center. Last Wednesday, I celebrated National Running Day by going on my first trial run with my sighted guide, Andrew Swistak. Six days and one twisted ankle (mine) later, I felt ready for round two.

Shortly before 10 p.m., I wrapped my bum ankle and met Andrew at my mailbox with our lifeline, a three-foot bungee cord, draped over my shoulders.

Last week, I ran sighted for about 10 minutes to get used to the feeling of being “connected” to someone, and I practiced running with my eyes closed on a middle school track before we headed out into the unmarked, obstacle-riddled world.

This week, I closed my eyes as soon as I felt Andrew’s grip on the other end of that bungee cord. “Let’s go!” I said. I felt none of the roller coaster sensations I experienced when I closed my eyes at the beginning of our first run.

We ran 5.45 miles in 1:01:50 – good for a leisurely pace of 11:21 per mile – including multiple stretches during which we inched our way through a narrow, fenced path, waited for oncoming cars and stopped to step over speed bumps out of respect for my ankle. But we talked throughout the run (I talked about my sister a lot), and my ankle held up like a champ. When Andrew delivered me back to my driveway a few minutes before 11 p.m., long after most of the lights in the windows on my cul-de-sac winked out, I felt the meaning and the magnitude of this run – and our battle for people like Taylor – within every fiber of my sweat-soaked, adrenaline-charged body in the muggy, quiet June night.

Wind, rain and thunder pounded our neighborhood just 30 minutes ago, but all signs point to clear skies by later tonight. If you live close by and happen to be up and about in three or four hours, you might just catch a glimpse of two runners connected by a three-foot bungee cord and a shared mission, cutting through the black night, running toward the light.

I am running the Thunder Road Half Marathon 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.

Running in the Dark

Published: June 7, 2013  ~   1
By Laura Edwards

Two nights ago, I ate an early dinner and waited for several hours to give my grilled cheese, my apple and my neighbors a chance to wind down. Then, I donned a reflective hat, strapped on my Garmin watch and laced up my running shoes. With a bungee cord in hand, I jogged .7 miles under inky, starless skies to the home of my friend, Andrew Swistak, a fellow runner who works at The Fletcher School, where my sister, Taylor, spent six wonderful years.

Just after sunrise on the morning of Nov. 16, I will pull on a blindfold after I lace up my shoes, and Andrew will guide me through the 13.1-mile Thunder Road Half Marathon course on the streets of my hometown of Charlotte. I will attempt to run the entire race without the gift of sight to honor the five-year anniversary of Taylor’s first 5K race, which she ran in conjunction with the 2008 edition of Thunder Road with the help of an older student from Fletcher.

But on this night – National Running Day and my first training run with Andrew – I had no blindfold and, with corrective lenses, perfect vision. Our goal for the evening was to get accustomed to running with the bungee cord.

blindfolded run 1

Early on in our run, though, Andrew took me to the track at the middle school by our neighborhood so we could get used to making turns. And in that protected environment, he asked me if I wanted to give blindness a try, at least for a minute. So I closed my eyes.

Right away, I lost my spatial awareness. The bottom dropped out from under me. My legs turned to Jell-O, and my body felt as though it was not my own. I couldn’t run in a straight line.

But soon, with Andrew’s help, I found my bearings in my dark world. I think we ran five laps around the track. Andrew said that for the most part, I stayed in my lane, even on the turns. I learned to understand the meaning of his tugs on the bungee cord. After a while, we left the track and returned to the neighborhood. I figured out how to make 90-degree turns and 180-degree turns and shift to the side for an oncoming car. At one point, Andrew asked me if my eyes were really closed. And they were.

I thought I’d mastered running blind – albeit much more slowly than I run sighted – until I mistimed a curb jump and twisted my ankle. And in that moment, I remembered that NOTHING about blindness is easy, just as nothing about this race will be easy.

But nothing about Batten disease or rare diseases is easy, and nothing about our fight to save people like Taylor is easy. And a twisted ankle on my first attempt isn’t enough to stop me. An ACE bandage, an ice pack and a couple of days’ rest work wonders for such injuries. And besides, going to work with an ice pack taped to my ankle gave me a natural opening to tell plenty of people about my blindfolded run and the reason behind it, so we spread Taylor’s Tale this week.

And I have a great guide in Andrew Swistak, not to mention a healthy dose of inspiration. There will be no twisted ankles on Nov. 16. We’ll be ready.

I am running the Thunder Road Half Marathon 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.