My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t even remember whose senior quote it was, and I didn’t know why it mattered to me so much. Looking back on it now, I think it was an echo of the better parts of myself I hoped to maintain:
“A nomad I will remain for life, in love with distant and uncharted places.”
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I was lucky enough to have parents who enjoyed traveling with their kids, and my sisters and I looked forward to multiple trips throughout the year. Most of the time, we’d stay in the U.S., going to the beach in Alabama, snow skiing in Colorado, hiking the trails in Tennessee, or visiting Disney World in Florida. On a few trips, we left the country for Canada, France, Italy, and even Egypt. Seeing new places and being far from home was exciting for me. It seemed to be a trait I grew up nourishing.
As I grew older, the effects of Friedreich’s ataxia (FA) began to appear, and then progress. Traveling became more and more of a hassle for me. Flying in an airplane while requiring a wheelchair is indeed doable, but it is difficult. With a progressive disease, it gets ever more difficult. Still, I endured it.
“A nomad I will remain for life …”
Traveling was still worth the difficulty.
Until it wasn’t.
Jakob’s Austrian accent was obvious as he gave me his normal greeting on our Skype calls. His voice sounds like Arnold Schwarzenegger’s, but not as gruff.
“Man, I have some bad news,” I said, looking down ashamedly.
I then confessed to how, over the past week, I’d been struggling with the decision of whether to continue on a planned vacation to visit him in Vienna. Ultimately, I made the decision to cancel the plans.
I explained how hard the decision was for me, that I was afraid I was missing out on my last opportunity to travel to Europe, and how I was concerned that the progression of my FA made traveling difficult not only for me, but also for everyone traveling with me.
I explained all of this with tears in my eyes, feeling that I had given up a piece of myself that I cherished.
Little did I know, I didn’t have to explain it to Jakob. “I understand,” he said. “It’s no problem.”
Jakob has FA as well, though his is much less progressed than mine. We met online and quickly became great friends. Although Jakob loves to travel the world and knows that I’d like to do the same, he understands the implacable progression of the disorder.
Losing the ability to travel overseas is as wrenching to me as losing the ability to walk.
But Jakob’s understanding, along with our solid friendship, tells me that I may need to think about it in another way.
I’d never have become friends with Jakob, except that we both have the same rare disorder. Though FA is awful and needs to be cured and eliminated at once, to disregard the positive elements it brings — like patience, empathy, and unlikely friendships — is short-sighted.
Maybe FA didn’t take my nomadic spirit, it just changed it. Maybe even if I can’t physically travel abroad, I can still make friends in every corner of the world. Maybe even my words in this column, “Little Victories,” can reach places I cannot.
Yeah, it still hurts. I feel like a quitter who gave up on his dreams.
But I’m trying to see it differently.
“A nomad I will remain for life, in love with distant and uncharted places.” —Isabelle Eberhardt
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.
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