The Gift of Mobility
For most of us, January means a new beginning. For me, January 2022 also means a new left ankle — a souvenir from over 40 half-marathons and a 25-year soccer career. And while I’m already dreaming about my next race, the looming surgery also has me thinking long and hard about the gift of mobility. After all, I watched my younger sister, Taylor, lose her ability to walk in the latter half of a long battle with CLN1 disease (Batten disease).
My sister was born on a sticky summer evening in 1998. In my memoir, “Run to the Light,” I wrote:
“My little sister arrived on a stifling August night the first week of eleventh grade. I was tying the laces on my cleats at soccer practice when Dad called to share the big news. ‘Now?’ I whined after a brief pause when he told me their room number at the hospital. ‘I’m at practice, and we’ve got a tournament this weekend.’ I still haven’t forgiven myself.”
In those days, I idolized the women’s national soccer team. I thought maybe if I worked hard enough and impressed the right coaches, I could make a name for myself in the sport. Like a lot of teenagers, I also believed I was invincible. So, when I sprained my ankles, I asked the athletic trainer to wrap them, popped three ibuprofen, and used crutches when the pain got really bad. A new baby sister wasn’t enough to make me miss practice, and an injury wasn’t, either.
That brashness caught up with me. I missed my freshman year of college on the field, and while I played the last three years of school and on recreational teams well into my 30s, my body was never quite the same. So, I did what any other illogical person would do: I traded my soccer cleats for running shoes.
I started running races to honor Taylor in 2009 after watching her complete two 5Ks with Girls on the Run. I recently hit the halfway mark of my quest to run a race for my sister in all 50 states. But while my times have been more than respectable (I can still run a mile under 6 minutes and have won many age group awards), the mileage has caught up with those beat-up ankles.
While I’m not literally getting a new ankle (which would involve an artificial implant), I might as well. I’m signed up for an ankle ligament reconstruction and, while I’m on the operating room table, a few other minor procedures. The recovery will be long and difficult, though far from impossible. I will not only walk again, I’ll also run races, climb mountains, chase my son, and yes, kick a soccer ball from time to time.
I’ll admit I’m nervous and maybe even a little scared. There are risks associated with any surgery, especially those that require general anesthesia. It may cause other issues. It may not work. It certainly won’t serve as a time machine with the power to take me back to the moment before my first ankle sprain.
But for an almost-40-year-old, I’m remarkably healthy. I can see and talk and swallow food. When I recover, I’ll be able to walk again. These are all abilities that Batten disease stole from my little sister — all fates I could have just as easily suffered, since Batten disease is an inherited disorder and Taylor was, genetically speaking, my closest match on the planet.
Meanwhile, the little girl who inspired Taylor’s Tale didn’t get to play soccer for 25 years. She didn’t even make it to 21. She gets no second chances. Yet, Taylor is the most courageous person I’ve ever known. And when my heart flutters with fear just before my surgery, as I know it will, I’ll remember how she faced an experimental neural stem cell transplant at the tender age of 9, just as she faced everything else Batten disease threw at her.
I’ll always remember how she looked the day she was discharged, recounted in the pages of “Run to the Light”:
“She had a little energy by this time, but my sister and John weren’t popping wheelies in the wheelchair when we passed through the lobby of Doernbecher Children’s Hospital to leave. Bundled into a cheetah-print coat and wearing a pink scarf, boots, and a hat that hid her scars, Taylor looked triumphant yet tragically ill. She’d obviously lost weight during her three-plus days in the hospital, and her eyes were still sunken and ringed by dark circles. I thought about how she’d always hated pulling her hair back; I missed the sight of her golden locks framing her face. But in a moment of clarity, I discovered that in spite of everything, my sister had an enormous grin on her face. A smile played on my lips as I tried not to cry.
‘I love you, T,’ I said simply, softly. ‘Let’s get out of here.’
And that’s what we did.”
Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Batten disease.