Searching for Balance in the Fight Against Batten Disease
Learning to approach advocacy work as a marathon, not a sprint
In the terminal days of August, as summer made one last stand, I completed a couple of two-mile jogs on the streets of the South Carolina border town I’ve called home since 2016. I used to regularly log 60-mile weeks, so in one sense at least, these abbreviated “runs” shouldn’t have been more than a mild blip on the radar.
But after a difficult eight-month recovery from major ankle surgery, the thrill of scrambling for two miles felt like I’d reached Mount Everest’s summit.
In some aspects, I’m more physically fit at age 40 than I was when I played in the midfield on a college soccer team or notched all those 60-mile weeks in my 30s. I have to work harder to maintain my fitness, yet in doing so, I’m much more intentional about the process and far more protective of my body.
Now, postoperatively, instead of running 60 miles, I’m riding my bike, lifting weights, foam-rolling tired muscles, and holding planks for entire commercial breaks. For the first time, I’m not only understanding but respecting my physical limits.
I’ve tried to apply the same discipline to other areas of my life, such as my day job in content marketing or my work as a rare disease advocate. But discipline in the fight against Batten disease has always felt too much like taking it easy. Because while I put hours into training my four-decade-old body, my sister’s body quit on her after a mere 20 years.
How could I ever turn my back on the kids and families destined to suffer the same cruel fate?
Stretching the limits
I co-founded the nonprofit organization Taylor’s Tale on a crisp fall day in 2006, when I wasn’t much older than my sister was when she died. After spending much of my childhood filling the flip charts in the Junior League conference room, I had no interest in following in the footsteps of my mother, volunteer extraordinaire. Yet Batten disease made this cause intensely personal. Batten disease bullied its way into the room. Batten disease dared me to fight back.
Our grassroots effort, first a steering committee and later a public charity, looked like the best chance to beat Taylor’s form of Batten disease (CLN1 disease) from the outset. I’ll never forget the figure on the calculator screen when I totaled the gifts from our first fundraiser. I never felt more certain that my sister would break the cycle by surviving.
That same sense of euphoria returned several times in the years to come, such as:
- The day we announced our support for Dr. Steven Gray’s gene therapy project
- Hearing kids play piano for my sister in an annual playathon
- Finishing my first blindfolded half-marathon to honor Taylor
- Delivering a TED talk to a live audience of more than 1,100 people
But those years had their lows, too: not just watching Taylor lose her abilities and grow sicker, but feeling helpless to save her no matter how hard I worked.
I hit rock bottom for the first time in 2011, passing out in the shower after a severe migraine and earning an ambulance ride to the hospital. I recounted the hypnagogic hours in my emergency room bed in my 2018 memoir, “Run to the Light“:
“And now I was slipping away, obsessed with fighting the demon killing my sister, so far down the rabbit hole I’d spend three hours battling tech issues with the Taylor’s Tale website instead of spending time with my sister who was still alive.”
My obsession with saving my dying sister was killing me.
Searching for balance
More than 10 years have passed since stress last landed me in the hospital, though I’ve had my fair share of urgent care adventures. All things considered, I’m more easygoing at 40 than at 30, despite becoming a mother and taking on more responsibilities at work — cementing my belief that all stressors are not created equal.
Meanwhile, Taylor’s Tale is still working hard to deliver on our promise of saving lives. We may not be as visible as we once were, but we’ve never lost sight of the dream. And with a gene therapy treatment in the wings, we’re closer than ever.
These days, figuring out just how immersed to be is my greatest challenge. I couldn’t save Taylor, yet I maintain a deep-rooted doubt in my ability to know the line between old-fashioned hard work and obsession.
As is my nature — after all, I have a column called “The Long Sprint” and a whole book of running metaphors — I’ll bring it back to the sport that helped save me at my lowest point. Remember, I’m fitter than ever despite running far less (and I’m certainly not getting any younger). It took decades, but I’m finally sold on cross-training.
I lost my sister four years ago this month, but I’m still dead set on defeating Batten disease. I just can’t help but wonder whether I’m more likely to succeed through moderation than a mad dash.
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.