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.
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.
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!)
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.
Last weekend at the Moebius Syndrome conference, someone raised the question about why there aren’t many Moebius Syndrome-related blogs. Since I seem to be a glutton for punishment, I thought I’d try to start one. Mainly for myself, to express the myriad of thoughts living with Moebius Syndrome raises, but also for anyone else who might come across it.
I’ve been home from the Conference for a day and am beyond exhausted. It’s that strange sort of emotional drain that I can only surmise comes from feeling too much, too strongly – we go through our day to day lives certainly effected by Moebius but not completely consumed by it. Changing that around come Conference-time is always kind of discombobulating, and leads to more questions than concrete answers… Is it a welcome change, to talk about things I experience with people who understand? Is it intrusive? Is it still impossible to express some things I feel? Sitting in on the medical sessions, I start to feel weirdly self-pathologized – when do I need to step back and disassociate from the medical discourse in order to retain some level of objectivity? What does it actually MEAN, anyway, to know this? What good does it do me right here, right now? What does it mean to make myself a research subject, to have my DNA floating around in at least a few different labs?
Some answers to those rather rhetorical questions are easier than others, but I find that parsing out exactly how I feel and how things effect me helps me cope with the influx of emotion that Conferences bring.