I’m Redefining What Giving My Best Means

Laura King Edwards avatar

by Laura King Edwards |

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I’ve run nearly 40 half marathons — two of them blindfolded — but zero marathons.

This fact surprises a lot of people, but I know my own story all too well. I know that the only time I trained for a full marathon, my joints couldn’t take the high training mileage (on race day, instead of lining up at the start, I stayed at home with an injury). I know that one afternoon this coming January, I’ll go to sleep in an outpatient surgery and wake up with a reconstructed left ankle. I know that if I want to run the back half of my 50-state journey, or chase my 3-year-old son, or even walk without pain in my 40s, I have to understand and respect my body’s very real limits.

Right now, I’m training for the last race I’ll run on the ankle God gave me (a flat half marathon on South Carolina’s coast), mostly on the indoor exercise bike I broke down and bought after an ugly MRI scan of my ankle in June. I’m already nearing 200 rides, so I’ve had lots of time to think about what this upcoming surgery means for my running career and life goals.

I’ve also considered the fact that while a successful ankle procedure should allow me to keep chasing half marathon finish lines for a long time, my heart and my mind haven’t always been in the fight against Batten disease this year. Truthfully, despite a euphoric summit in Grand Tetons National Park in September, I’ve often asked myself how much longer I can keep stoking my own fire to beat the disease that killed my younger sister, Taylor, in 2018.

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My sister wasn’t a quitter, so I’m almost ashamed to say it: I’m tired. Taylor was diagnosed with CLN1 disease (Batten disease) in 2006, more than 15 years ago. I spent most of my 20s and all of my 30s running a race I never voluntarily entered. I’ve experienced the highest ups and lowest downs of the public charity, Taylor’s Tale, that literally transformed the landscape for not just Batten disease but all rare diseases.

I’ve felt the hope of once unimaginable progress and the despair that comes from knowing that progress didn’t save my only sister. Just like I’ve kept running through pain, I’ve stayed in the ring with Batten after getting knocked down again and again. Lately, though, I’ve wondered if that knockout punch is coming for me.

The holidays are around the corner. When I sat down to write this column, I intended to write about keeping the faith. Looking forward. Giving thanks.

But I’ve been running for so long. And, as I wrote in my memoir, “Run to the Light,” Batten disease isn’t a sprint. It’s a marathon. And marathons? They can be beautiful, or they can be a whole lot of ugly.

I know I’ll finish my 50-state quest. I know I’ll write another book. Most of all, I know I’ll never stop loving my sister. I’ll never stop giving my best for her. I guess I’m just learning to live with the knowledge that my “best” may not always be what it once was.

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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.

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