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I have run almost 40 half marathons – two of them blindfolded – but no marathon.

This fact surprises many people, but I know my own story all too well. I know the one time I trained for a full marathon my joints couldn’t handle the high training mileage (on race day instead of standing in line at the start I stayed at home with an injury). I know that one January afternoon I’m going to fall asleep in outpatient surgery and wake up with a reconstructed left ankle. I know that if I want to run the back half of my trip to 50 states, or chase my 3 year old, or even walk painlessly in my 40s, I have to understand and respect the very real limits of my body.

Right now, I’m training for the last race I’m going to run on the God-given ankle (a flat half-marathon on the coast of South Carolina), mostly on the stationary bike. interior that I broke down and bought after a horrendous MRI scan of my ankle in June. I’m already close to 200 races so I’ve had plenty of time to think about what this upcoming operation means for my running career and my life goals.

I also took into account that while a successful ankle procedure should keep me running past the half marathon finish lines for a long time, my heart and mind haven’t always been in the right direction. fight Batten disease this year. Truth be told, despite a euphoric peak in Grand Tetons National Park in September, I often wondered how long I could keep stoking my own fire to overcome the disease that killed my younger sister, Taylor, in 2018.

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My sister wasn’t a coward, so I’m almost ashamed to say it: I’m tired. Taylor was diagnosed with CLN1 disease (Batten disease) in 2006, over 15 years ago. I spent most of my 20s and all of my 30s running a race that I never voluntarily participated in. I have experienced the highest and lowest ups and downs of the public charity, Taylor’s Tale, which literally changed the landscape of not just Batten disease, but all rare diseases.

I felt the hope of once unimaginable progress and the despair that comes from knowing that progress has not saved my only sister. Just as I kept running through the pain, I stayed in the ring with Batten after being knocked down over and over again. Lately, however, I’ve been wondering if that punch is coming for me.

The holidays are coming up fast. When I sat down to write this column, I intended to write about keeping the faith. Looking forward. To thank.

But I’ve been running for so long. And, as I wrote in my memoir, “Run to the Light,” Batten disease is not a sprint. It’s a marathon. What about the marathons? They can be beautiful, or they can be very ugly.

I know I will finish my quest for the 50 states. I know I will write another book. Most of all, I know that I will never stop loving my sister. I will never stop doing my best for her. I guess I’m just learning to live knowing that my “best” might not always be what it once was.


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 be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard professional medical advice or be slow to seek 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 aim to spark discussion about issues related to Batten disease.