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I met up with three other guys with Friedreichs ataxia (FA) – the rare, neuromuscular disease I live with – for a trip to Orange County, California last month. My highlights of the trip might not be what people expect, but it was significant in my life and for my growth.
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I genuinely would not be the strong man I am today without the years of 8th grade through high school, but I would never wish them on my worst enemy. It was a period where my FA symptoms onset, but no one else knew what was happening and neither did I.
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Living with FA, my journey is very rarely the typical one. The battle I have is to make the most of the road I’m on, or I can lose all of while comparing myself to the path others are on. A conversation I had with a cloud on a recent flight I was on put…
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I never did learn to ride a bike as a kid. That’s why my first ride on a recumbent trike (pictured above) at RideAtaxia Orlando in 2019 was such a big deal. It looked funky – nothing like a real bike. It seemed like something someone who couldn’t ride a bike rode so they could…
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Rare Disease Day is approaching, but what does that have to do with you? February is national rare disease month, and rare disease day lands on the final day of February each year. Being leap year, this year it’s on the rarest day in existence: February 29. This month, more than ever, I have realized…
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Sometimes, when I deal with a new symptom of FA or one that has progressed and caused a new issue, it makes me feel so isolated. No one at my age deals with these problems. What is wrong with me? The reality is that the world is full of pain and suffering, but it’s rarely…
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I used to believe that my script had already been written: as my FA progresses and my symptoms get worse, my life would decline with it. But on Saturday, I continued to disprove that narrative as I walked across the stage and graduated from Auburn University. The biggest thing I take away from my time…
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I remember dressing up as the most iconic characters, getting scared senseless by a group of no-good teens that cornered me with a chainsaw, scaring a bunch of other people senseless dressed as Michael Myers (after I slept with the light on for a month because that daggum mask was in my closet), running around…
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This past December, I was preparing to cross the gym to get to my apartment room. Only one problem – I tugged on the handle and it didn’t open. I looked up to see the sign on the door read “gym closed due to renovations.” That left the only route to my room across the…
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Being humble doesn’t mean putting yourself down, it means building yourself up while still putting others above yourself. For so long, I thought it was wrong to talk about my accomplishments or draw attention to myself. In the long run, that has really contributed to my low self esteem and sense of self.
Knowin' Noah 