Five years ago, I spent five months learning to run without my vision, strapping on a blindfold a couple of nights a week and setting out into the dark world for two or five or nine miles with my friend and guide, Andrew Swistak. And on a chilly November morning, I crossed the finish line of a half marathon course ringed by soaring skyscrapers and cheering people and trees bursting with golden color I couldn’t see.
The effort had started out partly as a publicity stunt to support Taylor’s Tale and partly as a unique way to honor my blind sister, who had run her first 5K race on the same course in 2008. I didn’t realize that the experience – both the race itself and the training it required – would save my own life at a time when I’d nearly given up hope. Hope in the race to save my sister from Batten disease, and hope in my ability to be happy in any phase of my existence even as Taylor was dying.
It was such a magical day that I was sure I couldn’t replicate it. So instead of setting a date for my next blindfolded half marathon, I set out to run a race – sighted – in all 50 states. And on the plane bound to Oregon, my first, the following August, I began writing a book.
I finished the manuscript in 10 months, but it took longer to convince a publisher of the audience for a story inspired by one child’s fight against an ultra-rare disease. That word – rare – can be the kiss of death, as so many rare disease advocates know too well. “That’s a really touching story, and Batten disease sure is sad,” says the would-be agent or publisher or donor. “But the world has so many other problems that need fixing.”
As luck or fate would have it, I did find a home for my manuscript, and after what had seemed, to me, a long and torturous journey to turn “Run to the Light” into a real book, my publisher chose the week of the 2018 Novant Health Charlotte Marathon to release it. The Charlotte Marathon, previously known as the Thunder Road Marathon, was where my sister and I had first crossed the finish line as blind runners. I knew that I had to try to recapture the magic of my 2013 race.
Meanwhile, Taylor continued to get sicker, and I wondered how much longer she’d live. When I wrote the epilogue of “Run to the Light” in January 2018, I admitted that I wasn’t sure she’d survive till the book’s publication. And throughout this year, every holiday we celebrated together became another mark on the calendar – a poignant reminder of how my sister bucked the odds.
Along the way, I faced a big life change of my own. The same week I wrote the epilogue, on an unusually snowy night in my pocket of the Carolinas, I learned I was pregnant with my first child. Still, I resolved to run 13.1 miles blindfolded for my sister in November, approximately six weeks after giving birth.
I wouldn’t have to do it alone. In addition to my friend, Andrew, who agreed to serve as my guide again, more than 100 people signed up to run or walk various race distances wearing purple for Taylor. Early on, I thought maybe we could field the biggest team at Charlotte’s biggest race event. I pulled a volunteer committee together to plan race week events and social media and PR strategies, hoping Taylor’s Tale could benefit from my sister’s amazing running story once again.
Then, the sky fell. Right after Labor Day, Taylor was admitted to the hospital with intractable seizures. For the next three weeks, she clung to life with the same spunk I’d seen since she was a fiery toddler who always figured out a way to win, even if her opponent had 40 inches and 100 pounds on her.
But Batten disease always comes out on top, in the end. Six days after my son Jack was born, Taylor took her last breath in an inpatient hospice unit, separated from the labor and delivery room where I’d brought a new life into the world by just a few floors.
My family, of course, could have canceled our marathon plans. We were exhausted and heartbroken, stripped bare before the trees lost their first leaves of fall.
But we didn’t. Instead, we did as Taylor would have done. And this past Saturday, Taylor’s Tale turned Charlotte purple for her. I ran the half marathon blindfolded, crossing the finish line in 2:01. I could credit training that started less than two weeks after Jack and I came home from the hospital, but I know better. No – something else willed my legs and lungs and heart to work like I hadn’t just given birth. Something else showed me the way to the end of a 13.1-mile course I couldn’t see.
Maybe it was my friend, Andrew, the perfect guide. Maybe it was the skills we’d honed in 2013, even more crucial considering we didn’t train together – at all – for this race. Maybe it was my friend, Alyson, my brother, Stephen (running his first half marathon), Steve Gray, whose gene therapy research Taylor’s Tale funded, or runners from Abeona Therapeutics, the company that licensed Steve’s work and will begin treating children like Taylor in an upcoming clinical trial. Together, this group formed sort of a bubble to protect me from falls in the stampede that took over Charlotte’s streets for a few fleeting hours on a picture-perfect fall morning.
Maybe, above all else, it was the ghost of an angel – the same angel whose legacy outweighs any physical feat, blindfolded or not – that carried our team to the finish line on Saturday. When I took off the blindfold at the finish line, I hugged my guide and my mother and my newborn son, wrapped in a moment that felt matchless yet strangely familiar. And that’s when I knew:
This was magic.