For most of us, January means a fresh start. For me, January 2022 also means a new left ankle – a memory of over 40 half marathons and a 25-year football career. And even if I’m already dreaming of my next race, the upcoming operation also makes me think long and hard about the gift of mobility. After all, I watched my younger sister, Taylor, lose her ability to walk in the second half of a long battle with CLN1 (Batten’s disease).
My sister was born one slimy summer evening in 1998. In my memoir, “Run to the Light,” I wrote:
“My little sister arrived on a sweltering August night the first week of eleventh grade. I was tying my cleats at football practice when dad called me with the big news. . ‘Now?’ I groaned after a brief pause when he told me their room number at the hospital, “I’m in training and we have a tournament this weekend.” I still haven’t forgiven myself.
At that time, I idolized the women’s national soccer team. I thought if I worked hard enough and impressed the right coaches, I could make a name for myself in the sport. Like many teenagers, I also believed that I was invincible. So when I sprained my ankles, I had the athletic trainer wrap them, took three ibuprofens, and used crutches when the pain got really bad. A new little sister wasn’t enough to make me miss practice, and neither was an injury.
This audacity caught up with me. I missed my freshman year of college on the court, and even though I played the last three years in school and on recreational teams until my thirties, my body was never quite the same. So I did what any other illogical person would have done: I traded in my soccer cleats for running shoes.
I started running to honor Taylor in 2009 after watching her complete two 5Ks with Girls on the Run. I recently reached halfway through my quest to organize a race for my sister in all 50 states. But while my times have been more than respectable (I can still run a mile in under 6 minutes and have won many age group awards), the mileage has caught up with those battered ankles.
While I’m not literally getting a new ankle (which would involve an artificial implant), I might as well. I’m scheduled for ankle ligament reconstruction and, while I’m on the operating room table, a few other minor procedures. The recovery will be long and difficult, although far from impossible. Not only will I walk again, but I will also run errands, climb mountains, chase my son, and yes, kick a soccer ball once in a while.
I admit I’m nervous and maybe even a little scared. There are risks associated with any surgical procedure, especially those that require general anesthesia. This can cause other problems. 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 a man of nearly 40, I’m remarkably healthy. I can see, speak and swallow food. When I am cured, I will be able to walk again. These are all abilities that Batten disease stole from my little sister – all fates that I could have suffered just as easily, since Batten disease is an inherited condition and Taylor was, genetically speaking, my partner the closer on the planet.
Meanwhile, the little girl who inspired Taylor’s Tale couldn’t play soccer for 25 years. She hasn’t even turned 21. She doesn’t have a second chance. Yet Taylor is the bravest person I have ever known. And when my heart throbs with fear just before my operation, as I know it will, I will remember how she faced an experimental neural stem cell transplant at the tender age of 9, just as she faced everything what Batten’s disease threw at him.
I will always remember his appearance on the day of his release, recounted in the pages of “Run to the Light”:
“She had a little energy at the time, but my sister and John weren’t wheelies wheeling around when we walked through the hall of Doernbecher Children’s Hospital to leave. . Wrapped in a cheetah-print coat and wearing a pink scarf, boots and a hat that hid her scars, Taylor looked triumphant but tragically ill. She had obviously lost weight during her more than three days in the hospital, and her eyes were still sunken and surrounded by dark circles. I thought about how she had 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 despite everything, my sister had a huge smile 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’ve done.
To note: Batten Disease News is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 Batten disease issues.