Moebius on the resume

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.

Recommended viewing: HBO’s Temple Grandin

Finally got around to watching this last night – such a powerful story and very well-told, I think.  Sometimes (well, a lot of times!) I’m not entirely pleased with how disabilities are portrayed in films – it’s way too easy to fall into cliches and limited portrayals of people with disabilities, but I felt this film really worked hard to avoid this and was successful.  Of course, Temple Grandin’s story really lends itself to such an adaptation.  I think the most important part (well, besides the fact that Temple is smart and driven) is that she had the full support and encouragement of her family at a young age even when the medical establishment was very pessimistic about the prospects of a young child with autism.  In a way I think not knowing that much about Moebius (well, besides the scary medical journal article or two!) sort of helped my parents in a way.  They were able to follow my lead and really embrace the fact that I was a smart, capable child who faced some obstacles and unique challenges.  That set the stage for how I viewed myself and how I approach the world around me.  I think this would have remained the same even if I had been born at a time where we had more access to information and networking, but it’s interesting to think about.

Yes, “famous” people have Moebius, too!

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 like being interesting… I guess?!

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: “ (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.

On Language (alas, not written as well as the NYT Magazine column)

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.

Moebius & Musicals: We still go on

Next to Normal, Original Broadway Cast

we go on, we still go on
and you find some way to survive
and you find out you don’t have to be happy at all
to be happy you’re alive…

Next to Normal

A quick PSA seeming to have nothing to do with Moebius (but of course it does!)… this amazing musical, on Broadway now and going out on tour next year, is a must-see for anyone dealing with difference and the medical establishment.  It really resonated for me, I think, because I’ve spent so much time in hospitals and doctor’s offices, and really understand how the main character feels to have her entire self medicalized to some degree.  It’s ridiculously powerful and has wonderful music (a rock musical score, really beautifully done).  Since the probability of someone writing a musical about facial difference is not very likely (well, unless I or someone else finally get around to writing it), I find I’m attracted to those that resonate with my experiences in different ways.  Next to Normal is one of these.  See it on Broadway or on tour, if you can!

Do I take this all for granted?

Sometimes I feel like I need to step back for a second and realize just what I’ve been afforded in this life, coming of age with both the IDEA/ADA firmly in place and with an incredibly supportive and resourceful family. From an early age, the disability community was my community – in small ways through involvement with the Moebius syndrome community and volunteer work at local disability organizations and in larger ways through my involvement with the California Youth Leadership Forum for students with disabilities and studying disability studies in school. It seems natural, even practical, to keep abreast of what’s happening in the disability community and what I can contribute to it.

I wonder about the disparity between prior generations and my generation, see as our contribution to the disability community. I think for me the local and personal connection I have as a person with a health impairment / disability to other people with disabilities is a strong driving force. It’s definitely not the only passion I have in my life, but I feel both driven and slightly obligated to give back to the community that I think has given me so much… history, pride and knowledge.

Moebius Memories

Sometimes I’m disheartened that my first prolonged memory is of doctors and hospitals and surgeries. I clearly remember getting my eye patches taken off after my second eye surgery at three and a half years old. That surgery, while not particularly invasive, was very traumatic for me. I would go so far as to say I had a bit of childhood PTSD following it – I played hospital almost obsessively for a few years and apparently frightened my mom by bringing up memories of after the surgery and random times. It’s hard for me to say if I wish I had another first memory, since after all getting the patches off was probably the easiest part of the surgery, but it speaks to me of how Moebius permeates everything. It’s not constant and sometimes not the most important element of my self-concept, but it’s definitely a defining force for me. Oddly enough, though, I remember asking my mom to explain the details of Moebius over and over to me when I was about seven, I guess I needed to hear it repeatedly in order for me to understand it. Not like a seven-year-old can really understand what a syndrome is, but I tried!

I’ve been able to cultivate so many positive memories from the many wonderful people I have been able to meet with Moebius over the years, but ironically I don’t really remember the first time I met others with Moebius. Honestly, I feel like it should be a watershed experience, but it just… was what we did. I was 9 when I first went to the get-together in LA with my family. I actually talked to my therapist about it last week (just wanted to make sure I wasn’t suppressing something traumatic!) and she confirmed my memories. I mean, I think I liked meeting people with Moebius but it wasn’t an immediate change. I remember a little of the LA Conference (although I had absolutely no memory of the fact that David Roche was the speaker. none at all!) and the continued involvement I’ve had in the Moebius community has almost been a given. I’m really glad that I was privileged enough to be involved with the Moebius community from the beginning, even if I don’t quite remember my own beginning with Moebius.

“In riding a horse, we borrow freedom”

This oft-repeated horse quotation (by Helen Thompson) came to mind today as I spent my afternoon volunteering at a therapeutic riding center near me, helping severely disabled children ride horses. It, and other therapeutic riding centers, are pretty incredible programs. It’s so great for these kids, who usually face severe impairments in many activities, to be able to do something that’s different and special. Lots of kids want to ride horses, and many in this area do, but it’s still special and exciting for these families to have this kind of program. Needless to say, the horses in this program are saints.

I’ve ridden seriously for 10 years, and for fun at camp for 6 or 7 years before that, and can’t think of anything I’d rather do most of the time. It’s a damn good workout, super fun, and I love cultivating a relationship with a myriad of different horses over the years. I meet people who I’d never normally cross paths with.

What in the world does this have to do with Moebius? Well, horses (and schoolwork, weirdly enough… yes, I’m a nerd) got me through a ridiculous amount of young adult angst- some Moebius-related, some not. I was able to get away from everything and just ride. That escapism was so vitally important to me when I needed it, and luckily I was able to indulge my passion. Everyone has passions, it’s just a matter of finding and nurturing them to the best of your abilities.

Seeking Information

I like information. I work with words, with facts, with books. But sometimes I wonder how much is too much when it comes to knowing about Moebius. Where is the line between being informed and current on the research, and self-pathologizing myself to a point where all I think about is Moebius and how it relates to me? Obviously there is a happy medium somewhere in between. I want to be an informed medical consumer, and part of having a rare medical condition is knowing about it and being prepared to discuss it with medical professionals. I want them to increase the genetic knowledge about Moebius before I have children. I’m actually not that afraid of my children having Moebius since I’m pretty sure I have a more classic type of Moebius that doesn’t seem to be inherited at all, but still… I want to know! Just for the sake of knowing, I guess. Or maybe to be able to tell people “THIS is what caused it”- I mean, it’s complicated enough telling people that you have a condition that they’ve never encountered, much less one that doesn’t yet have a clear “cause.” So basically I want information for information’s sake, which I think is fine (if perhaps a tad obsessive!)