Running Blindfolded Against the Clock

June 7, 2023

After sunset on Global Running Day in 2013, I stepped onto an empty middle school track, closed my eyes and, for the first time, ran without the gift of sight. Since that primitive night, I’ve lived a lifetime and lost the sister whose courage inspired me to run two half marathons blindfolded.

Now, 10 years later, I’ll wear the blindfold again — this time in an attempt to break the Guinness World Record for fastest blindfolded half marathon by a female.

Running for a Reason

My sister, Taylor, took her last breath on a mild September day in 2018. But when I came up with the crazy idea to run blindfolded in 2013, she was already dying.

Taylor was born with CLN1 disease, or Batten disease — the name for a group of inherited nervous system disorders that mostly affect children. Batten disease symptoms generally include vision loss (leading to blindness), seizures, and cognitive and motor impairment. It is universally fatal, though I’ve been working to change that for most of my adult life. I was 24, a newlywed with a good job in healthcare, when Mom called sobbing from the parking lot of a geneticist’s office. Taylor was struggling to see at night and had trouble with simple arithmetic. But my sister’s vitality made it difficult to believe in anything more serious.

Unwilling to take “no cure” for an answer, my family and I set out on the fight of our lives. As Mom said in a speech at the World Stem Cell Summit earlier this week, we decided to focus on hope — the light at the end of the tunnel — and we would head down that tunnel, lighting our own way if necessary.

Taylor’s Tale would go on to invest more than $1 million in research. Of the groundbreaking work we funded, one preclinical program lives on at Collaboration Pharmaceuticals, while another has reached the brink of patient enrollment (the last several years have been difficult for the business of rare disease). Meanwhile, we spearheaded and sponsored the first clinical guidelines for CLN1 disease, published in Pediatric Neurology.

And yet, somehow, some small part of me always knew it was too little, too late to save my sister. An invisible sadness slipped through a cracked door and settled deep in my bones. As I wrote in my memoir, Run to the Light, “I hated that our world was falling away beneath us and everything we’d ever known and taken for granted was slipping out of our grasp and my sister was still going to die.”

I’d started running in Taylor’s honor after she completed her first 5K race in 2008. Now, five years later, exhausted and broken, I ran for my own survival.

In my TEDx talk, I shared how I survived because I learned how to see the world without my eyes — and run — during that difficult but charmed summer of 2013. I survived because I learned to view even the worst situation as a noble challenge, rather than an impassable wall.

I survived because I learned to see the world as Taylor did.

Doing Hard Things

When Taylor ran her second 5K race in 2009, she crossed the finish line without a single tumble and beat her previous 5K time by 12 minutes. She didn’t win any medals, yet she displayed unrivaled courage on the tree-lined course.

Taylor never cared about speed — she only cared about doing hard things. Breaking barriers? Exceeding expectations? Fearlessly chasing down personal goals? These were Taylor’s trademarks.

But if Taylor never cared about outrunning others, why try to break the world record for the fastest blindfolded half marathon?

Because it will be hard.

I’m 41, and I have the joints of a soccer player who didn’t know when to quit. In 2022, I underwent reconstructive surgery on my left ankle — and the right ankle will follow when I work up the courage. I have a full-time job and a 4-year-old son, relegating training for this thing to precious found minutes and the luck of a schedule that coordinates with my guide’s.

Why the hell am I doing this?

Because Taylor never backed down from a challenge.

Why the hell do I believe I can do this?

Because my sister taught me to be fearless.

This hard thing is for her.

What’s Next

If all goes well, I’ll attempt to break the world record at a USATF-certified event in late 2023. Stay tuned for details regarding the race location, date and more, plus an intimate look at what I’m doing to prepare my mind, body and soul. Follow me on Instagram for the most timely updates (search by #4Taylor), though I’ll share stories here on the blog, too.

If you want to help support the cause, book me for a speaking engagement or just drop a note, contact me.