The Long Road to the Beach to Beacon 10K, for My Sister

At 8:12 a.m. on Saturday, Aug. 6, about three hours after the sun’s first light washes over the coast of Maine, I’ll take the first steps in the back half of my quest to complete a race in all 50 states. But I won’t be racing.

When I won the lottery and landed a coveted spot in the Beach to Beacon 10K in Cape Elizabeth, the world looked far different than it does today. It was March 12, 2020 — 24 hours before my company sent everyone home, and two weeks before my son’s school closed in response to a mysterious pandemic sweeping the planet. And, well, you can guess what happened next. The race was canceled.

The 2021 makeup race went entirely virtual during a summer surge of COVID-19. And last January, I had major ankle surgery. Six months later, I still haven’t gone for a run.

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I received an automatic entry into next month’s race on account of my 2020 lottery win. And throughout my recovery from surgery, I clung to a dream of running — not walking — across the finish line at the Portland Head Light, the world’s most photographed lighthouse.

But the extensive surgery (actually three) saddled me with crutches for several months and a boot for far longer. Nerve complications made it difficult to follow my prescribed physical therapy regimen.

In May, I “graduated” from learning how to walk to learning how to run. For nearly two months, I’ve driven 50 miles round trip to a sports training center for deep tissue work, sled pulls, weighted lunges, balance exercises, and more. I’ve even jogged the length of the center’s turf field. But while I’ve maintained my cardiovascular fitness, my hips, glutes, and left calf are wrecked. Posterior tibial tendonitis, a years-old problem stemming from chronic ankle instability, is rearing its ugly head. And last week, my therapist and surgeon delivered the sobering news: Despite my best efforts, I won’t be racing the Beach to Beacon 10K next month.

I did, however, get permission to walk, and maybe even jog-walk, the race. Thirty seconds on, 30 seconds off. Slow and steady. Cool and calculated.

It’s easy to feel frustrated by my relatively slow progress. For most of my life, I’ve pushed my body past acceptable limits. I played soccer, ran races, and scaled mountains while injured. I refused to take a single day off.

With this postoperative experience, however, I’ve tried hard to listen to my care team, perhaps even taking an overly conservative approach at times. There have been moments when the old me — the one that landed in the operating room — showed her face. My current therapist has had to remind me to rest between sets. He’s had to tell me that my warmup on the elliptical machine isn’t a race. But I’ve done almost everything right.

I wish I’d taken the quicker road to recovery from this surgery, but the struggle has also reminded me to take a page from my late sister’s playbook. Taylor, who succumbed to CLN1 disease (Batten disease) in September 2018, mastered the art of experiencing life within her means. Batten disease took her vision, yet she insisted on joining the national program Girls on the Run as a fifth grader.

Taylor didn’t run races to win — she ran races to live.

That spirit has fueled me to the finish line in 25 states since 2014. Her unbreakable will inspired me to keep running on an ankle so destroyed that the surgeon told my husband it was “basically dislocated from my body.” Running hasn’t always been the smartest decision on my part, but it’s certainly been the most inspired.

The Beach to Beacon 10K begins near Maine’s Crescent Beach State Park, traveling along tree-lined streets and panoramic ocean views before finishing at the Portland Head Light. Recovered or not, I’ll feel grateful for the opportunity to be among 6,500 participants. I won’t be able to run much of the course at all. But in my heart, I’ll be running to the light.

For this state and the next 24.

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.