Some days are so unforgettable, so moving, that we live them over and over again, immersed in the moment, for the rest of our lives.
Yesterday was one of those days.
On Friday, October 13, 2017, I accomplished something I’d never dreamed I could do until this year: I delivered a TED talk. After all, public speaking terrified me for most of my life. I hated the spotlight, more content scribbling sketches and stories with a No. 2 pencil in my treehouse than giving a class presentation or speaking up in a group. In fact, the soccer field was the only place I really felt comfortable using my voice, and even that confidence didn’t come till halfway through high school.
But Batten disease changed me, though not as much as it changed my sister. While my once healthy, vibrant sibling lost her vision and her voice and her legs, I channeled her courage and tried to use it for good. Taylor’s unshakeable strength in the face of all that loss stopped me short of feeling sorry for myself. It drove me to do what little I could to make the world a better place for people like her. For families like ours.
It’s never been easy. In fact, I almost walked away five years ago, around the time I realized the progress I’d helped achieve in my own small way had come years too late to save my sister. I was sick of trying to convince people to care. Sick of grappling with broken websites and broken promises on top of my own broken heart.
I spent a lot of time feeling angry about the reality of our situation. When I felt angry, I ran, sometimes blinking back hot tears as my ruined feet and fat raindrops took turns pounding the pavement in a raging, twisted kind of symphony. But one night on one of those runs, the skies cleared and my mind cleared, too. In that moment, with what felt like an epiphany, I understood what I had to do next.
Later that year, after five months of training, I ran a half marathon blindfolded. I don’t think I realized just how much that experience would change my own life until after I crossed the finish line. Running blind taught me to see the world from a different angle. It helped me see the opportunity in a painfully real, painfully personal tragedy. It restored my will to fight Batten disease for future Taylors. It restored my will to live.
A few years after that race, I wrote a book, and my life changed again. Writing Run to the Light didn’t just solidify my rediscovered sense of belief. Writing Run to the Light gave me the gift of reliving experiences with my sister before she got really sick – experiences that survived only in my memory.
Yesterday, I shared the soul of that book (due to hit shelves exactly one year from now) and the gift of my sister’s life in a 15-minute talk at TEDxCharlotte.
The best moment? Without a doubt, it was walking onto that stage. I was anxious (not nervous) for most of the day, my heart and stomach twisted into happy knots. But when Emcee Mike Watson said my name and I left the safety of the curtained backstage, I felt only hope and love and passion. Under those lights, I channeled Taylor’s quiet courage and fearless determination to make the most of a beautiful but brief life. Before I exited the stage, I knew my life had changed again.
I wasn’t smart enough or fast enough to save my sister’s life. But she saved mine, because she taught me how to see.
Thank you to my family and friends for supporting me on this journey. Thank you to all of my fellow speakers and the TEDxCharlotte team for an experience I’ll never forget.