Almost seven months ago, I ran the biggest race of my life. When I crossed the finish line at Charlotte’s Thunder Road Half Marathon and removed my blindfold to fall into my mom’s waiting arms, I knew I’d never feel that way again.
But that didn’t mean I was ready to quit running or fighting. After all, Batten disease hasn’t quit. It’s still doing its dirty work. My sister still suffers, and children still die. We still don’t have a treatment for Batten disease. We still have 350 million people fighting one of 7,000 rare diseases. We still don’t have an FDA-approved treatment for 95 percent of those diseases.
In the seven months that have passed since I hurdled the timing mats under the giant ‘FINISH’ banner as my guide, Andrew, yelled “Jump!” and then “Jump!” again, I’ve thought long and hard about the answer to one simple question: “What next?” While many of our friends talked about the next blind run before the tears we cried at Thunder Road were dry, I always knew in my heart that there would never be another Thunder Road – at least not like it was on November 16, 2013. That day was its own moment in time. No one can take it away from us, and it can’t be replicated.
During my months of training to become a blind runner and far more so in the months following the race, my sister slipped farther down the chasm of Batten disease. It is a deep, dark chasm. There are no footholds for climbing out, and some days, no light reaches her ledge. And yet, each day she teaches me something new about courage; each day, she imparts some great piece of wisdom without having to say anything at all.
Seven weeks before the diagnosis, Taylor and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears. That night, Taylor told me she wanted to go to Hawaii. We never made it to Hawaii, and in November, my sister couldn’t come to the finish line at Thunder Road. Travel isn’t really in the cards for her now. She won’t see the world or experience all of its wonders. But the world will lose more when it loses Taylor.
Taylor can’t travel, but I can. And I vowed to run – and fight – for her until my body gives out or we beat Batten disease, whichever happens first. So this summer, I’ll begin a quest to run a race for my sister in all 50 states. Everywhere I go, I’ll take her story with me.
I have a pretty good race lined up to kick things off, but I’m not sharing details just yet. Stick with me for a few more (thousand) miles. 4Taylor. We’re going to write the happy ending to this tale.
Today is National Running Day, and I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.