What’s Next?

By Laura Edwards

Thunder Road finish framed

I (almost) never buy race photos. They catch me at my worst moments. When I look at the proofs, I think, “When did I make THAT face?”

But I not only bought this one-I blew it up to 16″ x 20″ and paid to have it matted and framed. It captured a moment I’ll never forget and tells a story in a way no words ever could.

I’m blindfolded, but I’m not tethered to Andrew Swistak, my friend and guide. He’s finishing his own race, but he’s also watching the ground to make sure I don’t fall.

Steve Gray, my friend whose work at the UNC Gene Therapy Center could lead to a better future for kids like my sister, is tailing us and snapping another photo I’ll treasure forever.

And, best of all: can you find the crowd of purple-clad teens running down the 5k side on the left? They’re not racing-they’re chasing us. When I removed my blindfold after two hours in the dark and melted into my mom’s arms, they surrounded us in the finish area.

We had our Hollywood ending to five months of a lot of hard work and one dream – a big dream in its own right that, at the end of the day, is just another chapter of a long story in our very personal fight against Batten disease and the bigger fight for 350 million people suffering from a rare disease.

It would have been perfect if only my little sister had been well enough to come to the race that morning to share it with us. Just as the finish line picture tells a story, her absence from the hundreds of photos taken at Charlotte’s Thunder Road Marathon tells another story of the cruel reality of a disease with no known cure; a disease that marches on in a body that doesn’t have the tools to fight it, no matter how strong or brave the soul inside may be.

Today, a friend asked me if I think I’ll ever run Thunder Road, or any race, blindfolded again. Without hesitating, I said no. It’s not that I dread the thought of it or doubt my ability to do it, the willingness of Andrew or someone else to guide me or even the potential of a second run to have a positive impact. It’s none of those things.

I can’t explain it, but there was something magical about what happened at Thunder Road on November 16, 2013. I felt it when I ran beneath the canopy of trees on Charlotte’s Queens Road West, untethered yet never so sure of my surroundings. I felt it when we approached the corner crammed with Taylor’s Tale supporters less than a quarter of a mile from the end. I felt it as Andrew and I approached the finish line on the final stretch. I’d never felt that way in my life, and I’ll never get that feeling from a race again. But for as long as I live, I know that I’ll only have to remember those moments, and I’ll be transported back to the day my little sister, blind and suffering from a fatal disease, gave me the courage to run 13.1 miles in the dark.

There won’t be another experience like Thunder Road. But I’m not done fighting this fight, in running shoes or otherwise. Far from it.

Do you have an idea for my next chapter in the fight against rare disease? Let me know in the comments. Meanwhile, I’m gearing up for next weekend’s Charlotte 10 Miler (rescheduled after flooding on the greenway in February), my first race of 2014. I won’t be in a blindfold, but I’ll be dressed in purple for Taylor. 

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