I found myself in a funk early this summer, right about the time the nights turned muggy and the lightning bugs lit up the sky and the air filled with the smells of honeysuckle and fresh-cut grass and charcoal grills.
I remember thinking, what gives? I’d just finished writing a book, and I had a trip to Hawaii on the calendar, and great things were happening for Taylor’s Tale – both in the NC legislature and in a gene therapy lab at UNC. On top of everything, my little sister was mostly stable after a tough spring.
It wasn’t until I returned from Hawaii in mid-September that I realized what had gotten me down during those summer months:
I couldn’t run.
Saddled with a stress fracture in my foot, I’d been in a walking boot since mid-April, forced to eke out miles on a friend’s bike trainer in my garage (and later in my living room when my husband said he wanted his parking spot back), while able-bodied runners ran my favorite routes under the open sky and filled their lungs with the great outdoors. I hated losing the fitness I’d worked so hard to build, and I hated being chained to a machine for exercise. But after I returned to running, I understood better than ever what running does for me.
In my world – a world where a chronic, demonic disease is killing my sister and doing its best to tear my family down – running is my salve. It’s not a cure, but it’s often what gets me through the days. In the nine-plus years since Taylor’s diagnosis, it’s lifted me in ways counseling and meds never could. Some days I feel like nothing is right and won’t be ever again, and then I run out into the rain or the cold and feel my heart in my chest and the fresh air in my lungs and the ground beneath my feet, and when it’s over, I don’t feel whole, but I feel strong.
When I couldn’t run, the darkness attacking my family ate away at me.
It’s not lost on me that the remedy I turn to when I’m down is something Taylor will never know again, because after Batten disease stole her eyes and her voice, it stole her legs. Perhaps now more than ever, I’ll remember just how much of a blessing running really is, because I try to picture my sister running toward the sound of the ocean on a clear day at the beach or clutching one end of a bungee cord as she runs across the finish line of one of her 5K races, and I want to both smile and cry.
Taylor will never run or even walk on her own again, and I hate Batten disease for that and so much else. But that’s why I’m still running, and that’s why I always will.
My body’s not at 100 percent, but it’s good enough – and three weeks from today, I’ll run state number nine to honor my sister. I traveled nearly 10,000 miles roundtrip for the Kauai Half Marathon last month, but this one’s a little closer to home: the Athens Half Marathon, in northern Georgia and just three hours from my hometown of Charlotte. Stay tuned for details, and in the meantime, please consider giving to Taylor’s Tale in support of our fight to save people like my sister. Every dollar and every mile stand to go a long way toward knocking Batten disease out for good.