Some Place I Can’t Describe

By Laura Edwards

After months of training, planning and anticipation, it arrived: Charlotte’s Thunder Road Marathon, and my planned attempt to run 13.1 miles blindfolded to honor my little sister, Taylor, and support the fight against Batten disease.

On Friday, my colleagues at a creative marketing communications agency threw a purple-drenched pep rally, complete with the theme song from “Rocky,” a gift to Taylor’s Tale and an appearance by my husband, John (who schemed with them to plan the surprise).

At the race expo, I traded hugs with my former colleagues at the healthcare organization sponsoring the race and runners wearing purple for Taylor’s Tale on race day.

Friday night, Dr. Steve Gray, a UNC Gene Therapy Center expert whose lab’s Batten disease research is co-funded by Taylor’s Tale, arrived in Charlotte for the race.

pre-race dinner

Finally, race day arrived. John, Steve, my mom and I picked up Andrew Swistak, my sighted guide, and arrived in uptown Charlotte before sunrise. I did an interview with News 14 Carolina and took a couple of photos for Society Magazine.

News 14 interview

Andrew, Steve and I headed to the start line just as the morning’s first sunlight painted the tops of the skyscrapers. And at 7:15, I took one end of a green bungee cord, pulled down the blindfold bearing my sister’s name and ran into darkness.

start line

We got off to a slow start for the first few miles due to the policeman driving the pace car and charged with keeping the early starters at bay. We even took a wrong turn at one point when the pace car couldn’t keep up with us and had to wait at a busy intersection for the light to change before we could cross. But Andrew and Steve took it all in stride; a few miles in, the course opened up for us, and we picked up the pace.

Auditory cues mean so much more, and are so much more acute, when you can’t see. I loved hearing the reactions of people lining the streets to cheer on runners. First, they cheered for us as they’d cheer for any runner they didn’t know. Then, they’d notice something different about us and go silent before crescendoing into a loud roar. It was incredible to experience, and it gave me an extra kick. Several times along the course, we passed people who knew me or knew our story. I didn’t recognize all of them, but along one quiet neighborhood street, my good friend, Amy, surprised us. I recognized her voice as soon as she called my name. So much of human emotion is expressed in the eyes, and a thick blindfold concealed mine, but I hope she knew how much it meant to me to hear a familiar voice at that very moment.

A few weeks ago, during my longest blindfolded training run with Andrew, I ran untethered for a short period. During the race on Saturday, Andrew cut me loose a few times. Around mile 10, I ran without my guide for what felt like an eternity. I never felt closer to Taylor than during that stretch. I imagined her next to me, healthy, her legs in sync with mine, her voice dancing on the wind, her eyes drinking in the earth.

solo run

Just a short time later, we approached the Taylor’s Tale cheer station near the final stretch. Once more, Andrew took the bungee, and I ran past a screaming, adoring crowd. Their voices melted the cramps in my legs and filled my heart with love. In front of the station, I made a 90-degree turn on Andrew’s spoken direction alone, and we headed to the finish line. As we did, 70 teenagers clad in purple tutus, pompoms, sparkle and glitter took off after us. And as I hurdled over the first timing mat, then the second, and Andrew pulled me to a stop, and I lifted my blindfold and let the light come pouring in, I melted in the arms of my mom, who stood waiting for me at the finish line, crying, and the kids surrounded us, closing us off from the outside world, and suddenly, even though I had a medal around my neck and a timing chip on my shoe, I wasn’t at a race any longer, and I didn’t care that I’d just run a half marathon blindfolded. I was somewhere else, some place I can’t describe or ever return to again except in my dreams.

Mom and Laura at finish line

I ran 13.1 miles in the dark, but I didn’t take a single step alone.

We built Taylor’s Tale from the ashes of a tragedy that tried to burn my family to the ground. And Batten disease is the saddest thing I’ve ever known.

But Taylor’s Tale is not a sad story. Taylor’s Tale is a story of love and hope. And as I ran the final steps of Thunder Road, flanked by living angels and guided only by Andrew’s voice and Taylor’s courage, I knew:

Batten disease may have cast a dark shadow on our world, but I was running to the light.

I believed.

And I felt free.

the finish line

 Note: I ran the Thunder Road Half Marathon blindfolded not only to honor Taylor’s courage and raise awareness of rare diseases, but also to support Dr. Steve Gray’s gene therapy research 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 our fight to develop treatments for Batten disease and other genetic diseases, click here.

24 Comments On “Some Place I Can’t Describe

  1. Linda Talmadge Reply


    1. Member Laura King Edwards Reply

      Thank you for being there for us on Saturday, Linda! It wouldn’t have been the same without you!

  2. sherry branecki Reply

    so much in my prayers and thoughts. i donated to Noah i will donate to Taylor. Gos bless you and your family Taylor stay strong Batten affected my daughter Alyssa best friend Sara, Saras hope
    always in my heart and will always donate to batten
    Sherry Branecki

    1. Member Laura King Edwards Reply

      Thank you, Sherry. I’m so sorry that this terrible disease has affected your own family and friends. I won’t stop fighting – or running – until we have an answer for people like Taylor, Noah and Sara!

  3. Cameron Hunter Reply

    Beautiful! I have tears running down my cheeks as I read this incredible story.

    1. Member Laura King Edwards Reply

      I’ve cried a few times since finishing the race Saturday, Cameron. Just reliving it gets me choked up. I believe!

  4. Julie Siebel Reply

    I was on the road, driving from Orlando to Jacksonville to meet my new nephew on Saturday. If it hadn’t been for him, I would have kept on going up the 95 to cheer you on at the Finish! As it was, you and Taylor and your Mom were in my thoughts while I drove north, wearing purple 🙂
    Kudos on all you you’ve done to help raise awareness for Tayloy’s Tale and Batten’s Disease!

    1. Member Laura King Edwards Reply

      It’s been so encouraging to hear how this story – and purple – have traveled far and wide for the fight against Batten disease! Thanks for your continued support, and congrats on the new addition to your family!


  5. Debbie @ Deb Runs Reply

    Congratulations, Laura! It has been lovely following your journey for Taylor. I made a donation on Friday in Taylor’s name. All the best!

    1. Member Laura King Edwards Reply

      I’ve loved getting to know you through your blog, Debbie! Thank you for following this journey and for your support of our fight against Batten disease. I can’t wait to write a guest post for your blog. I’m honored that you asked!

  6. Ashley S. Reply

    You’d think I’d be a little desensitized to the emotion behind this story and this run, but I still cry every time I read one of your posts. When I got to the cheering station on Saturday, I had a hard time NOT sobbing… The energy and support {especially from those amazing kids} was overwhelming. I was so proud to be such a small part in this journey. We loved being part of the purple wave that overtook the corner of McDowell & MLK on Saturday morning.

    1. Member Laura King Edwards Reply

      I’ve cried a lot since Saturday! When I decided to do this in the spring, I never dreamed it’d have this kind of impact on Taylor’s Tale, the people involved or me. I can’t put into words what it was like to learn to run blind in the context of watching someone I love lose her vision, and to finish the way we did, with the amazing support, was indescribable. Please know that none of this would have been possible without Andrew. He guided me in more ways than one, and I wouldn’t have wanted anyone else on the other end of that tether. Thanks to BOTH of you for helping me believe.

  7. […] an organization she co-founded called Taylor’s Tale. Since talking with Laura earlier this year, s...
  8. […] who guided me to the finish line when I ran Charlotte’s Thunder Road Half Marathon blindfolded...
  9. […] I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I k...
  10. […] who once ran two 5K races after losing her vision to Batten disease (her courage inspired me to run ...
  11. […] I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew...
  12. […] If you went to Thunder Road last year or saw any of the photos or many news stories on our effort, y...
  13. […] the first anniversary of the 2013 Thunder Road Half Marathon, where the story of Taylor’s cour...
  14. […] Every moment, from the magazine cover two weeks before race day to the heart-racing start to the sto...
  15. […] even though she’d lost her vision. I’ve been running for her ever since, and in 2013, I...
  16. […] even though she’d lost her vision. I’ve been running for her ever since, and in 2013, I...
  17. […] kind of darkness that forces you to trust yourself and your guide and a higher power – since r...

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