Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.
That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013.
The magic was still there. And I wasn’t done running for Taylor.
In August, I kicked off a 50-state quest to fight rare disease in honor of her courage as a runner.
I started with Oregon’s 13-mile Crater Lake Rim Run. I came in fourth on the most grueling, stunning course I’ve ever run. I wish my sister could see the beauty and the wonder of Crater Lake.
The next month I ran Tennesee’s Great Smoky Mountains Half Marathon. I took second place.
In October I donned a purple witch dress and hat – the last Halloween costume my sister ever wore – for South Carolina’s Great Pumpkin 5K. I won my division in the small, fun race. The award didn’t make up for the fact that my sister was too sick to join me at the race that day (I’d chosen it for its proximity to our hometown in hopes that I could celebrate with her at the finish line).
In November I returned to Thunder Road and ran the last 1.25 miles blindfolded – and untethered. I broke my course PR by 13 minutes. But the more amazing feat that day belongs to the Playing for Others teens and parents who walked the 5K blindfolded/tethered to honor my sister and Taylor’s Tale.
In February 2015 I flew to Texas for the Woodlands Half Marathon in the hometown of Will Herndon, another hero fighting Batten disease. Meeting sweet Will, his family and the Will Herndon Fund team is something I’ll never forget.
On Easter weekend I ran Virginia’s Charlottesville Half Marathon. Around mile three, I felt something pop in my left foot. I finished anyway, taking fourth in my division.
The injury, a stress fracture, still hasn’t healed.
But a month after Charlottesville, I flew to North Dakota. I was supposed to run the Fargo Half Marathon. Instead, I walked the 5K with a broken foot. I also spent a wonderful weekend with good friends – an experience made sweeter by the extra free time the injury granted me. The injury story proved powerful for local media, too, ensuring people learned about Batten disease.
My next race is early this fall, and there is no 5K option. I’m determined to get better and knock out state number eight for Taylor. A long break from racing is coming at the perfect time. I need to reflect on the first phase of this crazy 50-state journey. It’s been an amazing personal experience, and the story has gotten media attention with almost every race, but how can I make it bigger and better? How can I turn it into an even more powerful tool? I need time to heal and write and plan. Most importantly, I need to be with my sister.
In the meantime, I’ll keep fighting for kids like Taylor. Because – like I said on National Running Day 2014 – I’m not going to let Batten disease kick my ass in the race that matters.
Are you a runner? If so, how are you celebrating National Running Day?
Have I raced in your state yet? If not, I’d love to know: what races are most meaningful to you in your neck of the woods?