When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.
I signed up for the Athens Half Marathon a few days after returning to the mainland from Hawaii, where I ran the Kauai Half Marathon on Labor Day weekend. Just 200 miles from my home in Charlotte, the quaint college town with respectable media opportunities but without the commotion of Atlanta seemed like the perfect place to notch state number nine.
But that’s not why I chose it.
Instead, I ran the Athens Half to honor Taylor and her friend Nicole McEwen, a University of Georgia sophomore whose love and kindness changed my sister’s life – and mine – for the better. As a high school senior in Charlotte, Nicole was co-president of Playing for Others (PFO) and developed a friendship with my sister while serving as her buddy in PFO’s buddy program. During a time when Taylor was losing her ability to walk and – worse – her ability to communicate – Nicole showed great patience and a level of understanding I’m not sure I had at 18. Nicole consistently made a point to have conversations with my sister, even if the conversations were one-sided. I’ll always love Nicole for the happiness she brought to a world marred by Batten disease.
The race, known as the AthHalf, was scheduled for Sunday, so I had the opportunity to catch up with Nicole when I arrived in Georgia with John on Saturday. I learned more about her plans for the future – her relationship with Taylor inspired her to become a child life specialist – and read an excerpt from the memoir I recently finished writing about Taylor and our fight against Batten disease.
Saturday night, John and I had dinner with our friends Beth and Sammy. Beth has given her time and creative talents to Taylor’s Tale in the past, and spending time with this great couple was a nice change from sitting in my hotel room, foam-rolling, sending last-minute emails to media contacts, and worrying about sleeping through my alarm on race morning.
I didn’t exactly sleep through my alarm on race morning, but I hit the snooze button once…and then again…and again. By the time I stumbled through the dark room to the second bed where I had laid out all of my gear and began pulling on my compression socks and shorts, it was too late to eat a proper breakfast. In fact, I didn’t even drink any water before we began the 10-minute walk to the start line. That misstep would come back to haunt me later.
But in the wee hours of the morning, all I cared about was getting dressed, inking my sister’s name on my arm and getting to the start line in time to meet the kids from Clarke Central High School’s award-winning Odyssey Newsmagazine, who are working on a feature story about Taylor’s Tale and my runs in Taylor’s honor. It’s one of three stories already netted from the Athens Half, including a live interview with Athens’ WGAU Radio and an article in UGA’s Red and Black.
After a few photos with the Odyssey Magazine kids at the start line, the gun sounded, and I took off with 2,043 other runners. I hadn’t warmed up or hydrated, yet I managed to run the first 10K split in 49 minutes.
That’s when things started to get rough. I’d run longer than seven miles only three times since Easter weekend – and one of those was the Kauai Half Marathon. I’ve had a bad year for injuries and relied on my base fitness to carry me in races. That came back to bite me in the Athens Half, especially because I’d mistakenly thought the course was “pretty flat.” While it’s no Crater Lake – the muscle-grinding 13-miler I ran in Oregon last year – the Athens Half has its fair share of hills. And by the second half of the race, I was hurting. As I’d learn later, I was also dehydrated.
Usually, I wear a photo of Taylor finishing her first 5K in my armband. That photo helps me push through the toughest stretches of a race. But the Kauai Half was so hot and humid – temperatures in the 90s, with the humidity near 100 percent – that I’d sweated through the photo and blurred the colors beyond recognition. This time, I had to imagine my blind sister beating the Batten disease monster to cross the finish line of her race.
And you know what? It worked.
It wasn’t pretty, but unlike the Kauai race, I managed a final kick when my finish line came into view. I leaped over the timing mats at 1:49:43 – good for my fourth-best time in a half marathon, and eight minutes faster than my time last month in the middle of the Pacific. I’d been hoping for a top-three finish in my fast division; I didn’t come close, but I didn’t care. I’d beaten 1,728 of the 2,043 people that lined up with me that morning, and more importantly, I’d closed out another race and another state for my sister.
Georgia marks state number nine, which means I have another 41 to go. My plan is to cap off the year by making it an even 10. I have some good ideas, but nothing’s set in stone quite yet. In the meantime, I’ll be working hard to support Taylor’s Tale as we continue to move mountains for the millions like Taylor.
Awareness is awesome, but Taylor’s Tale needs your support to build a better future for millions who, like Taylor, are fighting a devastating rare disease with no known cure. Please help me honor my sister’s legacy by making a tax-deductible donation to Taylor’s Tale. Donate Now