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.
On National Running Day 2014, I shared my plan to run 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.
On Good Friday, John and I drove to Charlottesville, Virginia for state number six and the Charlottesville Half Marathon and 8K.
Since the previous weekend, I’d had pain in the tendon that runs from the inside of my left ankle up my leg–a potentially serious injury–and I’d laid off my typical race week short runs in hopes of a miracle recovery. In an email exchange, my doctor suspected the same thing and reminded me to make good decisions. I didn’t have high hopes for the race, instead thinking I’d be lucky to finish.
We walked around Charlottesville’s downtown mall on Friday afternoon and spread Taylor’s story with chalk art.
Afterward, I told John I was tired and wanted to lie down in our room before dinner. Luckily for me, my husband heard my cell phone when it rang a few minutes before 7. Stephon Dingle, a CBS reporter, wanted to interview me that evening. I’ve set a couple of personal records for running in the past year, but I think I set a record for quickest shower after that call. Thanks to the Marriott staff for letting us invade their lobby for the interview.
Saturday morning was cool and windy. I met NBC’s Cat Boardman at the NBC studio near the start line to film footage for her story (look for links to both news stories at the end of this post). Stephon searched me out as well, and I did my best to make the dynamic stretches I do before every race look interesting. I handed my gels to John so I’d have a free hand, only to forget them when the starting gun sounded. I realized my mistake around mile two; for a second, I worried that I couldn’t run 13.1 miles without gels. Then I remembered that my sister endures much worse every single day. I’d be okay.
I got a fast start, as I always do. After the first few miles, I was on pace to finish in 1:38 (my personal record for the half marathon is 1:44). But the Charlottesville course is hilly, and I couldn’t sustain it. Even downhills are tough, because they put strain on the quad muscles. While running down one particularly long decline, I watched as the morning sun broke through the clouds and seemed to light up the entire world. I’ve always found it ironic that things like that–things I can see–seem to give me an adrenaline boost, since my sister was already blind when she became a runner.
Amazingly, my sore tendon didn’t flare up during the race, but other injuries did. The tendons on top of my left foot started to ache by mile three, and my right ankle was hurting by mile seven. Several times I thought about walking. But even on the monster hills, something in me refused to walk.
There wasn’t a lot of crowd support for this race, perhaps because it was Easter weekend. I’d also chosen to leave my earbuds at home, so I was running without music. In the absence of all that external stimuli, I had to get inside my own head. And I couldn’t stop thinking about how Taylor never, ever let her considerable physical challenges get the best of her. So what if she was blind? She’d join the Girls on the Run team anyway. So what if she’d fallen and scraped her knees? The finish line was still a mile away, and she wanted to cross it. So what if Batten disease had stolen her ability to walk? She’d claw and scrape and fight to walk three feet or climb three stairs at physical therapy, even if it turned into a 30-minute ordeal. No, I was going to run those damn hills for my sister, because that’s what she would have done.
At the end I found a second wind from somewhere deep inside, just like I’d known I would. I ran across the finish line in 1:49:34. I’d finished just 20 seconds out of third place, but somehow I didn’t care.
I gave NBC’s Cat Boardman a breathless interview and beamed with pride as John–who hadn’t expected to be interviewed–talked about how Taylor inspires us all.
After talking with NBC, for the first time ever, I went to a medical tent for ice. I guzzled two protein drinks with my bum leg propped up on a bench where I could watch other runners finish the race. Sitting there in the Virginia sunshine, I thought about how I have two more races in the next five weeks, and I have to stay healthy. I thought about how this effort to run a race in all 50 states is a marathon, not a sprint–much like our fight against Batten disease. We’re making progress, but we still have a long way to go. And as I walked with John back to our hotel, race number six in this crazy 50-state effort at my back, I understood, maybe better than ever, that every step of the journey is a gift. I understood I can’t get so focused on the finish line that I lose sight of the beauty right in front of me.
We made the 320-mile journey home after lunch yesterday and spent Easter Sunday with my family today. After lunch, we moved to my parents’ porch to enjoy the beautiful weather. I watched as together, my mother and John supported Taylor so that she could take a few small, wobbly steps around the porch–freedom from the wheelchair that’s her prison for so much of the day.
I saw the determination on my sister’s face, and I knew this to be true:
A single step can take more courage than the toughest race.
You can help Taylor’s Tale build a better future for millions like my sister who are battling a rare disease. Please consider making a tax-deductible gift today to help write the happy ending to Taylor’s Tale.