How This Pile of T-Shirts Represents My Journey With Rare Disease


A stack of t-shirts sits on my bed. They span six years, the entire United States and come from a variety of experiences I’ve had in the Moebius syndrome and rare disease community. Some I wish I could relive, some I wish I could change my response to, some I am still not sure of. But they are all there, sitting on my bed in front of me.

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These t-shirts represent communities, constructed by chance, by choice and perhaps by necessity. They are communities that sometimes I wish I could escape, but know I cannot. Communities that have shaped me and supported me and pushed me. Communities that have, most of all, taught me.

January 24 was Moebius Syndrome Awareness Day, commemorating the birth of Paul Julius Mōbius – a German physician who first described the syndrome in the 1880’s . It’s a time for awareness-raising, of course, but it’s also a time for reflection. About how we navigate the world with a rare disorder, about how we negotiate real-world life with the online community we’ve formed, about how we raise awareness in everyday life, not just one week a year.

I tend to be more quiet and approach awareness raising in the same way – open to it but guarded. Probably too guarded, but that’s a post for a different day (or never). Other people are most comfortable doing it in large-scale ways. Both are needed.

All kinds of things happened that weekend – get togethers, news stories, social media campaigns… I’m spent that Saturday working and Saturday night catching up on what I missed. I’m looking forward to seeing what’s accomplished this year and what will happen looking forward to next year and beyond.

My friend, Kathleen Bogart, just published a study about how awareness leads to understanding. And that’s ultimately what I think anyone, but especially those of us living with unique medical needs, wants. I don’t even care if you can’t remember what it’s called, honestly (best line ever: “whatever-it-is-that-you-have-again?”). But understanding is paramount to acceptance. And we all, ultimately, yearn to be accepted. I think I, and others, are doing good work towards that goal.

So this pile of shirts represents a history, my history, with the Moebius syndrome community. It represents me navigating my unique journey. These are my choices, my desires and my mistakes. They are uniquely mine, just like all of the individual experiences people living with Moebius shared on Moebius Syndrome Awareness Day.

Together, they make a visual embodiment of a layered story. My story.

This post originally appeared on Still I Can’t Be Silent.

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