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I have never raced on the 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 forwards as a sweeper. I have played in remote towns and big cities. I have always played hard. And often I played badly.

When you’re 17 and healthy like me, it’s easy to believe you’ll live forever. I certainly thought I would play forever. So when I destroyed my ankles on the public high school training ground, I didn’t think about life on the road. I was only thinking about the next game.

Over two decades later, the decisions I made as an idealistic and impractical teenager are catching up with me. Even the blurry, two-dimensional x-rays of my left ankle and lower leg tell a sobering story. Fifty races in 50 states? For now, I only hope to reach half of the quest I started in 2014 to honor my sister, Taylor, who suffered from Batten disease.

This milestone is incredibly close: in September, I’ll be at the start line in State 25, dressed in purple for Taylor’s Tale. But to reach the finish line of this race and many others, I will have to be smarter. No more running six days a week. Gone are the 150-mile months. No longer hurt. Because life, just like the half marathons I love, isn’t meant to be all-out sprinting.

Life? It’s the longest race of them all, and the decisions we make in the first few miles impact our results in the last.

The parallels between my relationship to running and my battle with Batten disease have always fascinated me, even inspiring a book. When grief comes over me, I run. When I face the most difficult hills, I only run harder. And when I do things that shouldn’t be possible (like running a two-hour half marathon blindfolded, just six weeks after giving birth), I never do it alone.

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

I believe in the force that “made my legs, my lungs and my heart work as if I had not just given birth.”

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

I believe in the resilience of human beings in the face of the most unfathomable losses.

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

And if I can believe in all of these things, I can surely ride my crumbling runner body to complete the lines in 26 other states.

For Taylor.


To note: Batten Disease News is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not 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 aim to spark discussion about issues related to Batten disease.


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