You know, really?
What exactly do you know?
-Diana, Next to Normal
Trying to explain growing up with Moebius is hard. The best example I can think of (and use) is gender… you don’t usually go through every second of every day thinking “I’m female” but it’s there, and it colors every decision I make. I think being born with a medical condition, especially one as misunderstood as a craniofacial condition, has that same effect on me. Even though I’m very involved in a lot of different things that have obviously stemmed from the fact that I was born with Moebius, it’s not something in my life separate from myself… it just is.
So what do I know? I actually sometimes struggle with this and how to express it. Fundamentally, I know my own life and my own experiences – experiences that are filtered through so many specifics of where I was born, who I was raised by and what opportunities I have had. Sometimes I feel self-conscious about being too cavalier in the Moebius community about the other parts of me, that seem so normal in my everyday life and yet so “noteworthy” sometimes in the Moebius community. It’s a strange inversion of the different aspects of myself that I still struggle with how to negotiate. So I try to cloak everything in “for me…” language and really think about how the particulars of my experiences might be useful to other people without the details of my own life. But it’s hard to negotiate. I know we are all individuals, and my experience and feelings are unique to me. And I’m strangely protective of my individuality. So I still struggle with this, and probably always will.
As an aside, I can’t take credit for the blog title, it’s from a song entitled “Still I Can’t Be Still” by Idina Menzel. It’s an apt description for me, and for what I hope this blog will be, though.