6.2 Miles to Courage on Casco Bay

I didn’t have high expectations when I slipped into the crowd at the starting line of this month’s Beach to Beacon 10K race in Cape Elizabeth, Maine. After all, I hadn’t gone for a run in seven months following major ankle surgery. Instead, I spent most of the year learning how to walk again.

But I held a coveted bib for the race, which was founded by running luminary Joan Benoit Samuelson, the first women’s Olympic Games marathon champion. And despite my difficult recovery, I’d set my mind on making the Pine Tree State state No. 26 in a quest to run all 50 states for my late sister, Taylor.

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The quest

On the Taylor’s Tale blog in 2014, I announced my ambitious plan to run the nation. At the time, I talked about how Taylor, then 15, dreamed of adventures in faraway places. By then, she was losing ground in her fight against CLN1 disease (Batten disease):

“Seven weeks before the diagnosis, Taylor and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears. That night, Taylor told me she wanted to go to Hawaii. Travel isn’t really in the cards for her now. She won’t see the world or experience all of its wonders. But the world will lose more when it loses Taylor.

“Taylor can’t travel, but I can. And I vowed to run – and fight – for her until my body gives out or we beat Batten disease, whichever happens first. So this summer, I’ll begin a quest to run a race for my sister in all 50 states. Everywhere I go, I’ll take her story with me.”

The surgery

I haven’t covered much ground in 2022. Months after the surgery, even walking to the end of my driveway felt like a huge accomplishment. But over the summer, I started to find my footing. I “graduated” from learning how to walk to learning how to run. Still, when the sun rose on race day in Maine, I hadn’t run farther than the width of the turf at the physical therapy and sports training center where I receive regular treatment.

As I shared in my column in July, however, I got permission to walk, and maybe even jog-walk, the race. I only had to understand — and respect — my physical limitations.

It was a tall order for an athlete without a reliable brake pedal.

The race

In the beginning, the sheer size of the field held me in check. After the gun sounded, I inched toward the timing mats with 6,500 other runners.

But after escaping the first crush of people, I settled into what felt like a manageable pace. With apologies to my doctor and physical therapists, I jogged more than I walked, though still slow enough to take in the leafy coastal town and soak up the knowledge that I was back, if not all the way.

One hour and five minutes later, I crossed the finish line near the historic Portland Head Light on Casco Bay. I averaged 10:28 per mile in my rebuilt left ankle’s debut. I’d fallen well short of my usual pace, yet I’d pushed the envelope.

Call it recklessness if you want. I call it self-belief. And when Taylor overcame far greater obstacles on and off the race course, I called it courage.

Twenty-six states down. For Taylor.

Laura crosses the finish line at the Beach to Beacon 10K race in Cape Elizabeth, Maine, on Aug. 6, in a remarkable comeback and tribute to her late sister, Taylor. (Courtesy of Laura King Edwards)

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.