I heard the actress Alice Ripley do a solo version of this song in concert last weekend, and while of course it’s way over-dramatic (it is a musical, after all!) some of the themes resonated for me. I’d known that Side Show was sort of a cult classic musical, but after seeing that song performed I went on a Youtube and Spotify spree and finally realized how incredibly poignant the show was – both for people who have differences, and those who feel different.
I guess that’s one thing that always fascinates me so much about art having to do with differences and disabilities: that it appeals to such a broad audience.
Because what we feel as people with differences is actually, if you think about it, so similar to what “normal” people facing normal life circumstances feel. We’re (or society) is so quick to attribute everything to differences, to unique circumstances, to life trauma. And to a certain extent, that is valid. But as I’ve grown and really started to think about it, few things in my life are absolutely defined by having been born with Moebius syndrome. Everything else is a product of chance, of bad luck, of the interactions between life forces. Was it influenced by the fact that I have Moebius? Sure. But honestly I think the interaction between everything, including Moebius, was most influential.
And I think that is what I appreciate about Side Show: it is about women who happen to be conjoined twins, but also about what they do with themselves and life choices in the face of difference. Just difference itself isn’t worthy of praise or dramatic retellings: it’s what you do with what you’re dealt that is worthy of exploration.
Sometimes music expresses feelings more aptly than just words could ever hope to. There are many songs that I love, while not specifically about Moebius syndrome, that I feel really express the experience of Moebius really well. A few are linked on my sidebar.
But today someone linked to a song written by a friend of theirs about their daughter that I think is beautiful. Here is “The Girl Who Smiles With Her Eyes”:
Musical thought for the day: Stronger (What Doesn’t Kill You) / Kelly Clarkson
One of my recent favorites, and as ridiculously cliche as it seems, quite applicable to life with any kind of adversity… such as living with Moebius syndrome. Sometimes things seem insurmountable and daunting, but on the other hand I think I’ve met some of the most incredibly strong and resilient people within this community – both people with Moebius syndrome and families who struggle and succeed at finding their place in the world, something complicated for everyone but especially when you’re different.
So yes, I have to say that Moebius syndrome has made me stronger and resilient. I resisted admitting that for a while, it just sounded kind of patronizing and obvious, but I guess it’s true.