The long road from the beach to Beacon 10K, for my sister

At 8:12 a.m. on Saturday, August 6, about three hours after the first gleams of sunshine on the Maine coast, I will take the first steps into the back half of my quest to complete a race in all 50 states. But I will not race.

When I won the lottery and landed a coveted spot in the Beach at 10K beacon in Cape Elizabeth, the world was very different from what it is 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. Well, you can guess what happened next. The race has been cancelled.

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 running.

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I received an automatic entry into next month’s race based on winning the 2020 lottery. And throughout my recovery from surgery, I clung to a dream of running – not walking – until at the finish line Portland Lighthousethe most photographed lighthouse in the world.

But the extensive surgery (actually three) required me to wear crutches for several months and a boot for much longer. Nerve complications made it difficult to follow my prescribed physiotherapy regimen.

In May, I switched from learning to walk to learning to run. For almost two months, I walked 50 miles round trip to a sports training center for deep tissue work, sled pull-ups, weighted lunges, balance exercises, and more. I even ran the full length of the center grass pitch. But while I maintained my cardiovascular fitness, my hips, glutes, and left calf are destroyed. Posterior tibial tendinitis, a years-old problem resulting from chronic ankle instability, is emerging. And last week, my therapist and surgeon told me the sad news: despite my best efforts, I will not be participating in the Beach to Beacon 10K next month.

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

It’s easy to get frustrated with my relatively slow progress. For most of my life, I’ve pushed my body beyond acceptable limits. I played football, ran errands and climbed mountains while injured. I refused to take a single day off.

However, with this postoperative experience, I have tried to listen to my healthcare team, perhaps even taking an overly conservative approach at times. There were times when the old me – the one who landed in the operating room – showed its face. My current therapist had to remind me to rest between sets. He must have told me that my warm-up on the elliptical was not a race. But I did almost everything right.

I wish I had taken the quickest route to recovery from this operation, but the struggle also reminded me to take a page from my late sister’s playbook. Taylor, who succumbed to CLN1 (Batten’s disease) in September 2018, has mastered the art of living within her means. Batten’s disease took her vision, but she insisted on joining the national program girls on the run as a fifth grade student.

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

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

The Beach to Beacon 10K begins near Maine Crescent Beach State Park, winding through tree-lined streets and scenic ocean views before ending at Portland Head Lighthouse. Cured or not, I will be grateful to have the opportunity to be among the 6,500 participants. I won’t be able to do much of the course. But in my heart I will be run towards the light.

For this state and the next 24.

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 replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 Batten disease issues.


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Sandy A. Greer