“I don’t know if the sky is heaven, but I pray anyway” -I Stand, Idina Menzel

Using more obscure song lyrics as a starting off point for my random musings for the evening.  Religion and belief systems always fascinate me, and especially how this is expressed in the disability community.  I am part Jewish, raised as an agnostic.  I identify strongly with the cultural significance of my Jewish heritage, but never really felt the desire to delve deeper into the religious part.  I guess because neither of my parents were raised strongly religiously, it just didn’t get passed down.

I believe in many things.  I believe in myself.  I believe in my passions and my ability.  I believe in art of all kinds.  I believe in the healing powers of animals.  The barn is my church or temple, I find myself anew after a great ride or even a simple grooming session.  To a certain extent I believe in the power of thoughts, if only to re-frame the way you look at things.  But I have no defined belief system.

How, you might ask, does this relate to having Moebius syndrome?  Without a defined belief system, I have had to come to terms that there is no particular reason (beyond, hopefully, the genetic reason that will soon be discovered) that I ended up having Moebius.  It wasn’t fate or meant to be.  It just is.  Sometimes that seems entirely too simple for such a loaded question, but for me and for now, it will have to do.

And yes, I pray sometimes.  Not to anyone or anything in particular, just to get my thoughts out into the universe.  It helps, too.

I’ve already sort of posted about this, but… I still can’t figure out how/why meeting other kids (and adults, for that matter) with Moebius didn’t make a huge impact on me as a young child.  I was eight or nine when I first met people with Moebius and I don’t remember a thing about it!  Literally nothing.  And I was a relatively astute child, so I can’t figure out why it wasn’t memorable enough to warrant at least registering in my long-term memory.  It’s weird.  I was actually really paranoid that I was, I don’t know, suppressing some kind of trauma, so I checked with my therapist… she remembers it the same way.  My friends who came to the Moebius community later in life describe these kind of watershed experiences discovering a community, and I guess I was just lucky enough that it was kind of built-in for me since I came to the community as a child.  I think the current generations of kids with Moebius are going to even be more connected to each other, which is wonderful.

And if you haven’t seen it, there is a Moebius Friends group on Facebook that now has weekly chat sessions at 9 EST / 7 CST / 6 PST.  Come join the conversation!

I’m not the type of person who feels an overwhelming need to educate everybody, all the time about Moebius.  I mean, if I did that there would be a whole lot less time to talk about everything else I’m ridiculously passionate about.  But having said that, I like having my involvement with the Moebius syndrome community on my resume.  Why?  Because people care.  And, often enough, people investigate on their own and really want to know about something they were previously uneducated about.  And I think that’s great!  Maybe it’s the easy way out, I don’t know, but it seems to work for me.  It also helps that I’m circulating my resume in academic or scholarly circles where people like to know things.  So yes, I bring up Moebius in interview settings in a roundabout way.  So far so good, and I’ve managed to educate a lot of people about it who probably would have never encountered it otherwise.

So I always kind of jokingly say that someone famous needs to have a kid with Moebius… and I’m only sort of kidding.  It’s hard to get the infrastructure for research and awareness without financial resources, which are difficult to do without a big name to advocate and support you.  So rap is literally the only genre of music that I don’t listen to at all, but I still found this really interesting. Hopefully this will also do something to make a dent in the diversity of the Moebius community. It strikes me every time that so few people of color are connected with or take advantage of the resources of the Foundation.

I get Google Alerts for Moebius Syndrome, and sometimes I think half of them are some variant of “Interesting Conditions You Don’t Know About” (well, except if you’re reading this blog, since you probably do know about Moebius).  And I’m always pretty bemused at them, especially the students looking for the most interesting! the most rare! to impress their teachers.  It’s always odd to me that something that is totally normal and everyday for me and so many people I know is a novelty to others.  Having a rare disorder is sometimes difficult to explain to others (um, cranial nerves? huh?) but it’s something you learn to live with and give a quick explanation – I find that neurological disorder makes more sense for me, and better explains how Moebius effects me.

And on this note, I know this is so wrong on so many levels, but this alert amuses me way more than they should: “Spooftimes.com (satire)Miley Cyrus: My Doctor Says I’ve got Moebius Syndrome!” Hello, Randomness.  Some people might get offended by this, I imagine, but I have a healthy respect for irreverent humor and find it hilarious.  And heck, it perhaps raises awareness!  All the random Miley Cyrus Google Alert people are perhaps hearing about Moebius Syndrome for the first time.

There are trigger words, words that make me subconsciously wince whenever I hear them.  My first instinct is to immediately act out on my impulses, to interrogate the writer/speaker, get to the bottom of why those words were used and why I think their use is problematic in terms of disability studies and history.  Then I have to reassess, to realize that everyone’s experience of disability is different, everyone’s words surrounding disability are different and no less thought-out, that someone using words I wouldn’t dare use to describe disability is no less deserving of being paid attention to or read, that it simply reflects their own personal experience and is not a reflection on mine or my beliefs.

Sometimes I over-analyze things too much, I think.