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.

A Jackson Hole Half Marathon, and 60 Miles at High Altitude for Taylor

By Laura Edwards

I haven’t gone on a blind run in three weeks, but I keep logging miles for Taylor. If you follow my blog, you know my ankles are trashed. And if you read this post from a couple of weeks ago, you’ll remember that I re-injured one of them trimming my roses. Yeah, trimming roses – not playing soccer or kicking butt in a race. That injury made me wonder, for the first time, whether or not I’d really make it to Nov. 16, the date of the Thunder Road Half Marathon, healthy enough to run 13.1 miles with a blindfold over my eyes.

I had a tough time limping up my mountainous driveway after the latest gardening injury, so logic would say I’d take a couple of weeks off from weight-bearing activity. But instead, I hopped on a plane bound for the Jackson Hole airport at 7:00 the very next morning. After a hasty connection in Salt Lake City and, with deepest apologies to my home state of North Carolina, the best pulled pork sandwich I’ve ever had in downtown Jackson, my husband and I set foot on our first trailhead in Grand Teton National Park by 2:15 p.m. MST. I laced up my ankle braces and my top-of-the-line boots, said a prayer to God, dug my poles into the Wyoming dirt and hiked my first 3.2 miles to and from sparkling Taggart Lake.

Taggart LakeThat night, I set up the two chairs on the porch of our cabin so they faced each other. I went to the laundry cabin for four large bags of ice, came back, plopped down in one of the chairs, put my ugly feet in the other, wrapped my ruined ankles in the bags of ice and stuck my nose in a book for 20 minutes to avoid the funny looks I imagined the resort’s other guests might be throwing my way.

The next day, I didn’t have any swelling, which in my twisted mind means that I’m fine, whether or not I have any pain (I did). So I told John a white lie and picked a trail that would take us past a couple of popular picture-taking spots near the gorgeous Jenny Lake, then beyond the crowds and deep into Cascade Canyon, all the way to Lake Solitude, for a 19-mile roundtrip hike.

The view at Inspiration Point, perched at 7,200 feet over the sapphire waters of Jenny Lake, is enough for most people, and they turn around. When we took a break there for a drink of water and a couple of SHOT Bloks, I could see why.

Inspiration PointBut I don’t like to stop with the rest of the crowd, and while Jenny Lake is the gem, Lake Solitude sounded like the place to be. So we continued on into Cascade Canyon.

Cascade CanyonThough I have the heart and lungs of a marathon runner, I have the ankles of a kid who played every minute of too many double-overtime soccer games when she should have been on injured reserve. My latest injuries – those of the blindfolded running and gardening variety – slowed me down, and as the Wyoming daylight faded, we realized we wouldn’t make it to our lake of solitude. So we turned around early, making our 19-mile hike a 13.1-mile hike. When we reached the car later, I told myself that Taylor would be proud of the miles we’d logged. And even though we didn’t achieve our goal, those miles were good enough for me.

We hiked our Jackson Hole half marathon for Taylor on just our second day out of nine full days in Wyoming. In fact, our “half marathon” didn’t even represent our toughest hike; that would be our journey to a point high above Amphitheater Lake in the Lupine Meadows area of Jackson Hole – a shorter hike at about 10.6 miles, but with an approximate 3,350-foot elevation gain over 5.3 miles to 10,000 feet above sea level.

Amphitheater Lake ridgeIn total, we hiked 60 miles. I dedicated all 60 to my sister. Some of the miles were easy. Some of them were hard. Because of my ankles, some of them were tougher than they had to be. But the rewards, from the wildlife we encountered to the sweeping views we enjoyed to the cleansing effect the mountains had on my soul, made every tough mile worth the effort.

That’s how I hope our fight against Batten disease will be, in the end. Some days it is. Some days we get amazing news or score an incredible (small) victory or witness something powerful in my sister that, like a gorgeous view or a long, invigorating drink of fresh, clean water, gives me strength for the next set of switchbacks up the mountain. Some days Batten disease knocks us down and kicks dirt in our face and rubs rocks in our wounds. There are more of those days. But the good days are so much more powerful that they overcome the bad, even though they’re outnumbered.

I called my parents one night while I was icing my ankles on the porch of our cabin in Jackson. Mom put Taylor on the phone, and I told her about the big bull moose John and I saw in the woods. I told her about his chocolate skin and his huge rack of antlers and how lazy he was, just sitting there chewing on grass in the trees while people took pictures of him. Mom told me that was the first time Taylor laughed all day.

mooseI had so much fun describing that moose to my sister. But I wish she could join me on the trails so I could REALLY share my love of hiking with her. I loved coming up with ways to tell her about the moose, but I wish Taylor could experience things like that for herself.

While I took another trip of a lifetime, Taylor sat at home, waiting for her big sister to call and tell her about sights and sounds and experiences that she can only dream about.

That’s why I hate Batten disease.

That’s why I’ll never stop fighting.