There are many heroes in the FA community, and they all inspire me

My husband, Dave, and I worried about the possibility of rain on a recent cool, cloudy October Sunday.

He was getting his bike ready for the 26-mile rideATAXIA’s Philly ride. If it had rained, it would have been slippery for a touring bike, like the one Dave and many of the other riders used.

We received three stickers when we registered for the event. Each one featured a portrait of a young man and his favorite saying. The three men died this year from Friedreich’s ataxia (FA). I also have FA, so I wore my rideATAXIA bike jersey, too, even though my trike was a six-and-a-half-hour drive away in Massachusetts.

The mens’ names were John, RJ, and Sean. John’s sticker read, “Never give up, keep fighting.” RJ’s sticker was “Keep smiling, no one fights alone.” Sean’s sticker: “Gone fishing with my parakeets.”

All three were very positive people. I never met Sean, but I heard he loved life. He was a remarkable fundraiser at rideATAXIA Philly year after year. This year, his family raised a huge amount in his honor.

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Who inspires me

In the FA community, those who are often praised as strong and inspirational are usually the ones who do the most visible things for our community. They raise significant funds, create documentaries about living with FA, and work visibly to raise awareness about the disease.

I have to say, unequivocally, we need those folks. They are strong and inspiring. They use their personal experience to improve life for everyone with FA.

The people who inspire me the most are the ones who endure the greatest hardships. People who are deaf and blind and face enormous communication challenges, people who need a personal care assistant to feed them, people who require a lift to get into their wheelchairs each morning. Those folks truly inspire me.

I know how physically and mentally challenging it can be to experience even a milder course of FA. Just accomplishing daily activities like showering, preparing meals, and dressing can sometimes overwhelm me. So I truly appreciate how difficult it must be for those with more severe disease progression to stay positive and hopeful. Our FA community knows John, RJ, and Sean for living meaningful lives.

Still, we must be cautious when we attribute inspiration to disabled people lest we trivialize them and us. I am sure not every day was sunny for these men, but their perseverance motivates me to do everything I can to improve the lives of people with FA and help ensure a cure is discovered.

The rain held back that day, and the sun even broke through the clouds at times. The FA community shared another powerful, memorable, and uplifting day. The threat of rain didn’t dampen anything.

Dave didn’t complete the 26 miles. He got a flat tire at mile 21 and forgot his tire repair kit. Luckily, rideATAXIA had a support and gear team that brought him to the finish.

The stickers of those men reminded us why we were there. And now they have a reverent place in our office, hanging on the wall to motivate Dave and me to keep our FA community front and center.

Note: Friedreich’s Ataxia 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.