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.
Last month I ran the Auburn Running Festival Half Marathon, marking state number 12 in my quest for 50.
Alabama was amazing. But life has thrown us more than a couple of curveballs since I returned home, which is why I’ve waited longer than usual to write the story. Shortly after the race, Taylor was transported to the hospital by ambulance – again. That afternoon, she was admitted to the pediatric intensive care unit at Levine Children’s Hospital in Charlotte. That was 12 days ago.
We hope she’ll go home today.
Before things fell apart, I went to Auburn to run for Taylor and Steve Gray, the Auburn Honors College grad and Vanderbilt PhD whose gene therapy work at the University of North Carolina is most likely to be an answer for infantile Batten disease. State number 12 was also my second race with Steve, who runs when he isn’t doing groundbreaking work in the lab or chasing his three children.
The forecast promised torrential rain, so Steve and I bought ponchos after dinner Friday night. But on Saturday morning, the sun rose in the Deep South sky, and the whole world seemed to glow.
We blazed to a fast start. Six miles in, we were on pace to break my half marathon personal record (PR). But then I started hurting. The pain in my foot reminded me of the pop I felt in last year’s Charlottesville Half Marathon, and shortly after that race, I was diagnosed with a stress fracture. I spent the next five months in a boot.
So we walked.
And then we ran a little.
And then we walked some more. I realized I was exhausted, like I wasn’t in shape for a half marathon, even though I’d just run a fast time in a 10-mile race five weeks earlier. I felt the physical pain in my foot but also the burden of the past 10 years of my family’s fight against Batten disease. I felt worn down.
My sister is the bravest person I’ve ever known, but I know she feels worn down these days, too.
Steve and I walked part of the last mile. Along the way, I realized we were still on track to finish with a sub-9:00/mile pace, despite all that walking. And when we reached Auburn’s Jordan-Hare Stadium, we started to run. When we exited the tunnel and our feet touched the field, we broke out into an all-out sprint for the end. I ran those last 100 yards like a punt returner headed for the end zone, and suddenly my foot didn’t hurt anymore.
My sister will make it home from the hospital today, and I didn’t think that was possible a week ago. She eked out a small victory against Batten disease this time. But I’m not fooled. I know that sooner than later, she’ll lose the war.
I pulled out a strong finish in Auburn. But in this race of life, if you love someone, don’t save the best for last. Make every mile count. Because you never know how long you’ll have, or if one day, you’ll be too late.
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