For some reason, people tend to ask the question “How has having Moebius syndrome affected your life?”…and honestly I’m always stumped. I have no idea how I would be different, and I’m okay with that. It’s kind of like asking if you’d been born in a different era or country or something like that. But I am aware of the privileges I enjoyed by being born at the time and place I was born, and in a family with adequate resources and cultural capital to enable me to thrive. I’m keenly aware that I was very fortunate in that regard, and it kind of weighs on me sometimes. I find myself cloaking everything I say about my experiences with Moebius in all sorts of “in MY experience…” or “in MY life…” phrases because I don’t want to be presumptuous but then is that short-changing myself? I don’t know, it’s a fine line and maybe something I’ll never quite negotiate to my satisfaction.
I find myself dragging my feet. There appointments that need to be made, decisions about treatment and/or surgery loom in the future. And… I simply don’t want to do it. I know it needs to be done eventually and probably the longer I wait the harder they will be… Bu
T I’m still reluctant. I know to much. I remember too much. No matter how good the ultimate outcome is, surgery basically sucks. But then I whine about the fact that I can’t see straight in front if me. Which also sucks. Sko what’s the tipping point? When does the desire outweigh the fear? I don’t know.
How about that for a reversal of fortune? As we approach Thanksgiving, I guess I need to take a moment to thank the people I know because of the fact that we share Moebius in our lives, with whom I’ve developed friendships with for being there for me through good times and… not so good times. I’ve done wonderful things with Moebius friends – seen first previews of what went on to be Broadway sensations, wandered the streets of San Francisco and New York… and the fact that we were brought together basically by chance is amazing if you think about it. And today, I got a job offer because someone knew I was looking, knew what I was capable of, and trusted me. So today, I thank all my friends who I’ve met through the Moebius community.
Today I’m in pain. And it really sucks. Thankfully it’s physical pain which is at least a bit better than emotional pain… but it is still no fun. Last week I fell down. It was my fault, I knew better than to think I could balance on one leg, but of course being me I tried to multitask… and promptly did a knee-plant on my bad leg. Figures. So it’s been hurting on and off for the last week, don’t know if walking around and doing yoga like I usually do is bad or good for it, but I can’t just sit around… so I’m (perhaps stupidly) forging ahead).
I’ve had chronic pain for as long as I can remember. I literally can’t think of a time when I didn’t have it. It’s that weird kind of pain that’s not bad enough to stop you from going about your day to day life, but bad enough so that an hour or so of walking leaves me in excruciating pain. And something like running is out of the question (well, if I was coordinated enough to do it without face planting myself on the sidewalk…)
This whole internal dialogue got me to thinking about the things I don’t know about other people’s experiences with Moebius. It’s kind of weird to walk up to a group of people, even if you know them, and announce yourself as being in pain all the time! I mean, it at once seems very trivial and unnecessary. I pretty much know that mine is due to how Moebius effects me personally, so I don’t know what good it would do to know that other people do or do not have the same effects? I don’t know! But I wonder sometimes…
So… I probably have mentioned this before, but I’m a huge theater person. I have eclectic taste, but perhaps because it was Halloween weekend… I had Wicked stuck in my head (you have to amuse yourself somehow when you’re snowed in and without power!)
The first big song of the show always resonated so strongly for me… it’s about waiting for something that might change your life even though you don’t quite know what that entails:
When I meet the Wizard,
Once I prove my worth,
And then I’ll meet the Wizard
What I’ve waited for since,
(Spoken: Since birth!)
And with all his Wizard wisdom,
By my looks, he won’t be blinded
Do you think the Wizard is (Spoken: dumb?)
Or, like Munchkins, so small-minded?
(Spoken: No!) He’ll say to me,
“I see who you truly are –
A girl on whom I can rely!”
And that’s how we’ll begin
The Wizard and I…
Of course, we soon learn that the Wizard has nefarious motives and what appeared to be Elphaba’s big chance is not what she invisioned it would be and leads her on a completely different path, in following her instincts and moral compass instead of succumbing to the allure of fame and influence.
But in a way I feel like there is a certain amount of waiting for that magic Wizard in life with a disability… thinking that this surgery or this therapy or this association will change things in huge way. And who knows, maybe it does? Sometimes it definitely does, but often times it is more murky than that and you have to work and wait for awhile to see the implications of something.
So there is no magic Wizard, either for the green-skinned Elphaba in Wicked or for someone with a condition such as Moebius syndrome. But we learn about ourselves in that search, so perhaps it isn’t futile after all?
A series of articles have appeared in the New York Times about a 16-year-old community college student who stutters and was actually asked by a professor to stop talking in class because it was disruptive. Now, after I wipe my jaw off the floor… I still can’t wrap my brain around this one. As a professor, one would hope she had taken enough teaching and pedagogy classes to realize that this request was ridiculous? And that she now has the audacity to attempt to defend her position simply astounds me. I think I would have been less surprised had she simply denied the whole thing!
I must say that I was lucky enough to never experience such discrimination in the classroom (I was almost always the person with the right answer getting called on!), and I can’t imagine having to deal with it and the media surrounding it at such a young age. I was kind of the opposite, in fact… needing to be called on constantly to validate my entire existence in the classroom space. I learned at a young age that the classroom was an area where I excelled, and was determined to succeed in it.
Luckily it seems like the student has moved on and hopefully the professor will be dealt with (and given a heck of a lot of sensitivity training) but I wonder how often this happens in classrooms everywhere and isn’t reported? I know I was lucky to attend schools that offered top educational experiences and (mostly) very good, understanding teachers. But everyone isn’t that lucky. And that gives me pause to reflect and hope that what happened to this boy in New Jersey doesn’t happen to anyone else…
Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary. -Steve Jobs, 2005
This quote, shared today after the world learned of Steve Jobs’s passing, really resonated for me. As someone living with a rare disorder (or multiple rare disorders, as with me) I think you really learn to trust yourself, trust your intuition about things both physical and emotional. I think I learned those skills early, almost by default. I clearly remember in preschool going up to my teacher and saying “I have an ear infection”… and I did! (I think I also remember that because as a consolation for having to leave I got moved up to the “allowed to ‘read’ instead of nap group”)!
Having courage is difficult for anyone, but I think it’s especially difficult for those of us who may look or feel different and carry the baggage from life with a medical condition. But at the same time, I think having to be strong and deal with a lot of stuff other people do not make it easier in some ways to have courage in difficult situations and move forward. I think it’s a truly mixed bag, but I cannot imagine having learned what I learned about life without being born with Moebius syndrome.
If this is the moment I stand here on my own
If this is my rite of passage that somehow leads me home
I might be afraid
But it’s my turn to be brave…-Brave/Idina Menzel
Bravery, or I should say the perception of bravery, is a vexed subject. I was schooled in my disability studies classes that the concept of bravery as applied to the disability community is something to be advocated against – that the assumption that just living with a disability or medical condition was enough to qualify as brave is not right. But really, who knows? As I think about it more, who am I to say what others feel? There are rhetorics around disability that make me cringe, but who am I to say how other people feel? I guess as I’ve grown up I’m becoming more confident with not being certain of things beyond what I can control within myself.
This all came to the forefront because I’m making a big change in my life, the most drastic change I’ve made as an adult. And bravery and other such rhetoric has been thrown around. Sometimes I feel brave. Sometimes I feel terrified. And that’s how I think it should be.
One of my good friends with Moebius syndrome had facial surgery last week as a middle-aged adult. It was something he’d been thinking about and decided the time was right to go ahead with it. I have to say I really like that medical advances have made this possible, and that the window of “doing something” is much more open.
I’m taking a wait and see approach with things. I was too traumatized by prior surgeries to think about any medical interventions as a pre-teen when surgery first became an option. It literally gave me anxiety attacks just thinking about it. And by the time I was older, I didn’t think it would make much of a difference, I would still have a smile that didn’t look completely normal, why not just keep it at my natural one? Who knows if I’d had less movement what I would have thought. It might have been much different.
And now? I’m glad I have options available to me and that if I’m ever not happy with how I look as I get older (what does Moebius do to aging, anyway?) I’ll have options at my disposal to feel better about myself if it ever comes to that. I’m excited that medicine and surgery have evolved enough that this is a reasonable approach to take, even though I have no idea if I will ever decide to use it. Who knows what the future will bring?
I love theater and going to as many shows and concerts as possible. It’s probably no surprise that I gravitate towards artists and shows that grapple with some of the over-arching themes in life with Moebius syndrome: embracing differences, becoming comfortable with who you are, challenging stereotypes and forming relationships with people coming from different points of view and life experiences.
I like a lot of varied shows (my taste is eclectic, everything from Sondheim to Hair to Next to Normal) but I have to say – although it’s becoming a tad cliche – I keep coming back to Wicked, an incredible re-telling of the Wizard of Oz where the Wicked Witch of the West grapples with being born with green skin and the effects it has on her sense of self and how others view her. The themes of embracing your own uniqueness, the challenges of what to do with your unique gifts, and the relationships formed from these challenges… it all amounts to an engrossing and riveting story set to a fun musical score that will have you humming for days. It is one of the few theatrical experiences that never fails to make me happy.
So what does this have to do with my life with Moebius syndrome? I love the fact that Wicked captures so many emotions anyone who at any time feels different or inferior, yet at the same time learning where exactly their strength is rooted in. It doesn’t exactly have a happy ending, but leaves me both hopeful and searching for ways my experiences can be used for good…