Life: The Longest Race of All

Laura King Edwards avatar

by Laura King Edwards |

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quality of life, run, RunTheBluegrass, running, live in the moment, fight

I never ran track. Instead, I worked my legs on the soccer field, using my stamina to cover the pitch as a midfielder and my speed to chase down strikers as a sweeper. I played in backwater towns and big cities. I always played hard. And often, I played hurt.

When you’re 17 and healthy like I was, it’s easy to believe you’ll live forever. I certainly believed I’d play forever. So when I destroyed my ankles on the public high school’s potholed practice field, I didn’t think about life down the road. I only thought about the next game.

More than two decades later, the decisions I made as an idealistic, impractical teenager are catching up with me. Even fuzzy, two-dimensional X-rays of my left ankle and lower leg tell a sobering story. Fifty races in 50 states? Right now, I’m only hopeful I’ll hit the halfway point of the quest I started in 2014 to honor my sister, Taylor, who had Batten disease.

That milestone is tantalizingly close: In September, I’ll toe the starting line in state 25, wearing purple for Taylor’s Tale. But to get to the finish line of that race and many more, I’ll have to be smarter. No more running six days a week. No more 150-mile months. No more doing it hurt. Because life, much like the half-marathons I love, isn’t meant to be an all-out sprint.

Life? It’s the longest race of all, and the decisions we make in the early miles impact how we fare in the later ones.

The parallels between my relationship with running and my fight against Batten disease have always fascinated me, even inspiring a book. When grief grips me, I run. When I face the toughest hills, I only run harder. And when I do things that shouldn’t be possible (like run a two-hour half-marathon while blindfolded, just six weeks postpartum), I never do it alone.

It would be self-centered and a little silly to imagine that a higher power has time to worry about my also-ran running career. But while I rarely ruminate on my faith in this column, I believe in things none of us can see, hear, touch, or even really explain.

I believe in the force that “willed my legs and lungs and heart to work like I hadn’t just given birth.”

I believe in the magic that “showed me the way to the end of a 13.1-mile course I couldn’t see.”

I believe in the resilience of human beings facing even the most unfathomable loss.

I believe in the promise of better outcomes for people like my sister.

And if I can believe in all of those things, surely I can ride my ruined runner’s body to finish lines in 26 more states.

For Taylor.

***

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Batten disease.

Comments

Autumn Brooks avatar

Autumn Brooks

I live in Columbia,SC. My oldest two children out of my 4 children (first 2 same father) have Juvenile Batten Disease. They were diagnosed at 8 and 7. They are now 10 and 11. My children are hurting so bad in so many ways. Watching them deteriorate before my eyes is nothing I could even explain when pain as a mother is involved. I was also a runner. At 35 I have found myself lost, anxious and depressed, over weight, and also dealing with substance abuse issues. I no longer run. I actually no longer have faith. Well maybe a mustard seed...gotta have that, right? Not sure exactly why I am reaching out. I hesitate to research Batten as far as others stories of the terrible diseases progression and even more pain caused. I dont even know. Not sure I believe God is all powerful and full of love. I'm so scared. I have to be strong for them but I am quickly quickly BREAKING.

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Laura King Edwards avatar

Laura King Edwards

Thanks so much for sharing your story. As a sibling, I can't begin to understand the pain you must be feeling as you watch your children suffer. However, as a sibling and, 15 years post-diagnosis, a veteran of this fight, I can tell you the landscape is much brighter today than it was even when my sister was still alive. I know my words may feel empty when you're experiencing so much pain, but I know you can be strong. I know you WILL be strong, as your children will.

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