Running for Taylor in 50 States: Massachusetts 

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

Martha’s Vineyard is a unique island, with beautiful beaches and oak forests and a scattering of towns. It’s a vacation favorite of movie stars and writers and politicians.

But most people visit the island when it’s warm.

When my friend, geneticist and author Ricki Lewis, invited me to use her house on Martha’s Vineyard, my husband said I should try to find a race on the island. He didn’t expect my search to produce a 20-mile contest in February. Advertised as “a die-hard race for runners of many levels” and a popular tune-up for April’s Boston Marathon, the Martha’s Vineyard 20 Miler isn’t for weenies. And because my doctor capped me at 13.1 miles after years of soccer and running injuries, suddenly John was running Martha’s Vineyard in February, too: together, we made up the Taylor’s Tale team for the 2×10-mile relay.

We were glad to see the sun when we boarded the ferry Thursday; the island had seen a blizzard on Monday, and at one point, the race day forecast called for a “snow squall,” with a high of 20 degrees and a wind chill factor of -26. I’m an NC native, and I had to look up the definition of a snow squall. I borrowed a bunch of gear from my dad, who used to ski in Colorado every winter. I even packed ski goggles to keep my contact lenses from freezing to my eyeballs.

Luckily, the MV folks know how to dig out of a snowstorm. By the time we arrived, they’d cleared the main roads and even some of the walking paths. Friday morning, Ricki’s husband Larry, a former college runner, took us for a test run in the snow.

Afterward, Ricki and Larry took us to Lucy Vincent Beach, a beautiful stretch of land in the exclusive town of Chilmark that’s closed to commoners like us in-season.

Saturday dawned bright and cold, but I started shedding layers before we ever left the house for the 11 a.m. race. Ten weeks removed from my last race – state number 10 in Philadelphia – I couldn’t wait to run as I toed the line. Even the medal I wore over my base layer – the first of two Taylor earned for running a 5K after losing her vision to Batten disease – felt strangely warm in the frigid air. (John wore Taylor’s second medal.) 

The emotions of my sister’s recent nine-day hospital stay came flooding out as the gun sounded and my legs started to churn. After a long climb up a hill in the community of Vineyard Haven, we turned into the forest and ran on a snow-covered path for much of the way. In sharp contrast to urban races, the thump, thump of our collective footfalls in the snow was often the only sound in the tunnel of trees.

Despite injuries that have dogged me since last spring, I felt strong throughout my 9.7-mile leg of the race (due to the harsh conditions, the race directors decided to shorten the course to 15.4 miles, with a 9.7-mile and 5.7-mile leg for the relay runners). Even the snowy course couldn’t keep me from approaching my personal record pace, though taking 10 photos, making two phone calls and stopping to adjust the gloves on my frozen hands took precious time. But I don’t regret the way I chose to run this race, and I’ll treasure some of the photos I captured:

I felt so strong that I believe I could have easily finished the shortened course. But this fight is a marathon, not a sprint, and I have another race in five weeks. So I passed the baton to my husband in the transition zone, and Ricki and Larry shuttled me to the finish line to cheer him on. About an hour later, I stood in a pile of powdery snow and watched him cross, helping me complete state number 11 in my quest for 50.

For me, the Martha’s Vineyard 20 Miler wasn’t about setting records. It wasn’t about running as fast as I could. It was about connecting with new – and old – friends (my friend Becca Thomason Latimer, who I’ve known since kindergarten, is a biologist on Cape Cod and, like Ricki and Larry, came to the race to support us). It was about building a strong base for a great 2016. It was about – as it always is – honoring my sister and sharing her story of courage with the world.

I’m more than 20 percent done with this 50-state goal, but I’ve got 39 more stories to tell and a lot of people to help save. I’ll keep running – and fighting – for as long as that takes. #4Taylor.

Thanks to Ricki and Larry Lewis and Becca and Drew Latimer for their kindness and generosity. Thanks also to the Martha’s Vineyard Times for publishing a nice story about us; read it here.

Taylor’s Tale depends on the generosity of donors to advance lifesaving research and fight for more and better treatments. Please help us by making a tax-deductible donation here.