A Snowman in the South: Facing Rare Disease and Other Unlikely Events

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by Matt Lafleur |

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“I never thought I’d see this,” I thought, looking at the surreal scene outside my van’s window. Snow-covered yards and roofs on familiar houses in my hometown were remarkable to me, although living with Friedreich’s ataxia (FA), I should probably be used to the unexpected by now. 

Aside from tiny flurries that may appear once or twice a year, we normally don’t have much snowfall. But now, the scenery outside seemed to belong in a Hallmark holiday commercial, not in southern Louisiana, where winter temperatures rarely dip below 40 F. 

In the third week of February, a strong arctic snap surged over much of the U.S., devastating many communities that were unprepared for the sudden freezing weather. 

The abrupt weather change was nothing more than a chilly inconvenience for most of the residents in my area, and I’m thankful I didn’t suffer because of it. I lost power and the internet for less than a day, but not water access. Many others, though, lost both electricity and water, particularly in neighboring Texas.

As my van passed house after house, I thought about how there seem to be two ways to survive sudden and unexpected events.

People living at about nine of every 10 houses I passed were out of sight, staying snug indoors. Most people choose to cling to safety and familiarity when facing a new and uncomfortable situation.

But every now and then, I’d see a group of kids venturing into the shallow snow, or an adult couple braving the cold to explore the unusual climate. Passing my sister and brother-in-law’s house, I saw a dilapidated snowman built from less than a foot of snowfall, appearing more like a mushy mound of dirty snow with a goofy grin than a typical snowman.

I think everyone falls into one of two categories when something unexpected happens: We either seek out the familiar and the comfortable, or we seek out a new adventure.

I am almost always in the first group. I don’t think choosing security or comfort is necessarily a bad trait to have. Being cautious, especially when considering health and safety, is essential to survival. But the key to living a fulfilled life isn’t choosing comfort and security no matter what.

It’s been weeks now, and I still haven’t gotten that dumpy snowman out of my mind. It was lopsided, strange, uncommon, and out of place. In some ways, the snowman reminded me of myself.

My FA diagnosis was as unexpected as a snowman in Cajun Louisiana. No one in my family understood why my sister and I were losing the ability to walk, to stay balanced, and to speak. I was particularly confused to observe my peers growing more independent while I was becoming less so.

Yet until recently, rather than learn more about Friedreich’s ataxia, connect with others in the FA community, and help to advance research, I chose to remain in my familiar ignorance. That was because directly facing my disability was too uncomfortable.

I am now trying to break away from that mindset. When unexpected situations arise, we cannot seek only that which is comfortable and familiar.

As Viktor Frankl wrote in “Man’s Search For Meaning,” a book that changed my life, “When we are no longer able to change a situation, we are challenged to change ourselves.”

Those of us diagnosed with FA or a similar debilitating condition are accustomed to living in situations we can’t change. But will we let them define the type of person we want to become? Will we pause in unfamiliar situations and refuse to venture out into the unknown? Will we choose the secure coziness of familiarity?

Maybe we should venture outdoors instead. Maybe we should risk the discomfort and test our limits. 

As I’m sure it has done for many others, living with Friedreich’s ataxia has taught me the importance of leaving my comfort zone. Like a snow-covered day outside in Louisiana, life is meant to be explored.

Moving forward, whenever I face an unexpected situation, I hope I won’t choose complacency. I hope I’ll choose a new adventure in a strange environment. Maybe I’ll even build a curiously out-of-place snowman.

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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.