Laura King Edwards is a writer, marketing professional, and rare disease advocate. She co-founded Taylor’s Tale, one of the world’s leading charities dedicated to fighting rare disease, at age 24. Learn more at laurakingedwards.com.
The morning of my third Thunder Road Half Marathon, I caught the light rail uptown with my friend, Kelli. Kelli had spent the night with me in Charlotte and was also running for my sister, Taylor.
Earlier that week I’d received a message on my blog from the father of a student at my sister’s school. He and his son Nicholas, who was a year behind my sister and had just started the eighth grade, were running the half marathon. “Neither of us are runners but we are doing it for the challenge,” he wrote. “I mentioned to Nicholas that Taylor did a 5K without stopping and I told him we can’t even think about walking or slowing down before mile three because no matter how ‘tired’ we may be, we need to push through just like Taylor did.” I felt inspired because others still honored my sister, but I also felt sad because, as her peers grew older, they were unintentionally leaving her behind.
Though I’d started to see myself as an experienced runner, I couldn’t stop thinking about how little I’d trained for this race. “I’m just going to have fun today,” I said to Kelli as we speedwalked towards the start line against a bitter wind. The words were more for myself than my friend. “No time goal.”
When the gun sounded, we inched forward with the others, two specks in a throng of thousands. We walked till the pack leaders burst ahead, making room for everyone else. After what felt like an eternity, we broke free. I said goodbye to my friend and shot ahead, settling into my own pace.
I knew right away that things would go better than expected. The air didn’t feel nearly as cold as it had just moments earlier when we’d jogged in place to stay warm, and it felt good when it filled my lungs. Each time I approached a hill, I found an unexpected burst of energy. My head felt clear. I was on pace for a personal record.
But after a long climb around mile five, I got winded. I thought about slowing down until I remembered how my blind sister had run part of the same course in her first 5K and never once stopped to walk, even when she fell and scraped her knees. I thought about Nicholas and his dad and my friend Kelli, somewhere on the course running for Taylor, and I didn’t stop.
Less than a mile from the finish line, I ran beneath the bridge where, two years earlier, I’d seen a blind man running with a cane. This time I was alone under the bridge, but I could see the image of the blind half marathon runner perfectly in my mind, and it made me think of my little sister, fighting a demon of a disease at home.
As the end of the course came into view, I twisted my left leg. The pain felt so excruciating that I thought I’d torn a muscle. I’d never envisioned crawling across the finish line and didn’t like even the thought. I wanted to sprint, but I was limping.
Was this what it was coming down to in the end? I’d given it my best, but my body had hit its limit. In my heart I knew I couldn’t run Batten disease out of Taylor’s life. I knew I couldn’t chase down a cure, no matter how fast I ran. I knew the running was for me. But in that moment, I hated that my best wasn’t good enough. I forgot I was running a race. I hated that our world was falling away beneath us and everything we’d ever known and taken for granted was slipping out of our grasps and my sister was still going to die.
But our fight against Batten disease wasn’t a sprint. It was a marathon. And the best distance runners succeed by reserving energy so they’ll be fresh when they have to climb the toughest hills. Elite marathoners know better than to expend all their energy in the first few miles of the race. I had to face Batten disease one day at a time. I’d shaped myself into a distance runner by approaching a long race in small chunks. It was easier to think about running a great two miles—the distance between aid stations. I’d finally started to understand that taking care of myself was just as important as hard work; otherwise, I’d crash and burn before I reached my goal. Similar to stringing together a bunch of strong miles, I needed to string together a bunch of good days.
My sudden injury made me angry and Batten disease made me angry, but as more able-bodied runners passed me en route to the finish line, it dawned on me that there was only so much we could do to win the race at hand. It was a tragic situation, and nothing that happened in my life—no matter how wonderful it might be—could ever replace what we’d lost and stood to lose. But a fast runner with a bum leg wasn’t any good to anyone, just like I wasn’t good to anyone when I was in my darkest place. I couldn’t help my sister if I based my survival on my chance of ensuring hers.
Somehow, I managed to jog-hop the last one hundred yards of Thunder Road’s 13.1-mile course. When I looked over my shoulder at the clock suspended above the timing mats, I discovered I’d set a new personal record. As I wrapped myself in an aluminum blanket and poured water down my throat, I realized that the pain in my leg was gone.