Huntington’s may affect us, but it won’t change our approach to life

If you ever met my wife, Jill, you’d know she has a handful of guidelines that she lives by — quirky, heartfelt philosophies that influence her approach to life.

One of my favorites is her unofficial family motto: “Live like you’re a tourist.” It’s a phrase she uses to explain an idea her parents instilled in her long before life handed her the challenge of being diagnosed with Huntington’s disease. The motto has become the centerpiece of our family.

Jill’s family moved to Sarasota, Florida, when she was a child, and from the start, they embraced the city — and life itself — with the enthusiasm of visitors seeing it all for the first time. They had an endless appetite for new experiences: beach days that stretched into sunset, museum visits, outdoor theater under the stars, wildlife parks, spring training baseball games, and more theme park trips than Jill can count.

And they did it all on a shoestring budget, proving that wonder isn’t about money; it’s about mindset.

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Sometimes I wonder if the Huntington’s gene mutation gives people a different lens on life, a kind of urgency and zest that’s hard to find in families whose genetic history doesn’t include a terminal illness.

Jill’s father, Ken, was diagnosed with Huntington’s, but even before then, her family’s energy was impressive. Their approach was simple: Squeeze every drop out of every day. Jill’s memories of Florida are a kaleidoscope of laughter, curiosity, and togetherness, memories she’s passed on to our daughter, Alexus, and, thankfully, to me.

When I first met Jill, her love of living was infectious. For the past 17 years, I’ve been trying to keep up with her and learn how to “live like a tourist.” It’s not always easy. Unlike Jill, who has trouble sleeping, I actually need to sleep.

But her philosophy has changed me. We make time for adventures, big and small, whether it’s a spontaneous road trip or just trying a new restaurant in town. Even as Huntington’s has made some things harder for Jill, her determination to keep exploring hasn’t faded. If anything, it’s grown stronger.

Jill’s approach to life is a daily reminder that we don’t know what tomorrow holds, so why not make today count? She’s taught me that joy is found in the moment, and she fights every day to keep living fully.

I hope I can keep up the pace, even if I need the occasional nap on the weekends. And I also hope that, no matter what Huntington’s has in store, the memories we’ve made living like tourists will stay with us.

The good news is that Jill doesn’t plan on slowing down anytime soon. And as long as she’s leading the way, neither will I.

Note: Huntington’s 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.