Natalie A

Looking for that magic (a Halloween-inspired post)

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?

News story that gave me pause: Speech differences in the classroom

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…

Courage, your inner voice and Steve Jobs – and how that does actually apply to life with Moebius syndrome

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.

Awareness in the most unlikely of places

I love coffee. A lot. And spend a ridiculous amount of time at various Starbucks… so I was very excited when I saw this card supporting disability awareness month when I was waiting in line for my latte:

It’s nice that awareness of all kinds is being spread and advocated for by some of our most ubiquitous companies. As much as nonprofits and individuals can do, getting it out into the general population is excellent. And I got a card… so Starbuck’s marketing and philanthropic plan apparently worked for me!

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.

“You had a very difficult tooth.”

That was a direct quote from my dentist last week after dealing with a cracked filling that was apparently very difficult to treat. For me, one of the most challenging (and frankly, awful) parts of Moebius is dealing with dental issues. My teeth decided to start de-enameling themselves about ten years ago and they’ve had all kinds of problems ever since then. And then I get horrible anxiety attacks about the dentist… I think mainly because it hurts! Between my weak jaw making it difficult to hold my mouth open for long periods of time (and painful when I do) and generally hurting because it’s hard to work in my tiny mouth… it’s just not a generally pleasant experience. And I seem to have a weird reaction to novocaine shots – I’ve had reactions before where the shots were and I think I might be having one again, my mouth is still swollen and painful and I had my shots last Thursday! Figures… it’s always something!

So I hope my dentist at least sees me as a challenging case who makes her work more interesting? At least I can imagine she does… instead of the difficult patient whose mouth is a pain to work in!

nothing’s ever set in stone

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?

These are a few of my favorite things…

Continuing with the theatre discussion… apologies in advance for anyone not interested! The Theater Development Fund (who run the wonderful TDF discount accessible tickets for people with disabilities, as well as the TKTS reduced priced tickets booth in Times Square) is developing the Autism Theater Initiative, “which aims to make theatergoing accessible to children and adults living on the autism spectrum.” I think this is an amazing opportunity, following in the footsteps of sign language interpreters for Deaf patrons and audio-described performances for people with visual impairments.

While many people with varying degrees of ASD do not need such services – and can enjoy live performances without modifications – it’s great that these organizations are thinking ahead about how best to incorporate people of all abilities into a theater-going audience. It’s wonderful for parents, too, since many times they are unable to go to shows due to their child’s overwhelming needs. More information about this and other TDF programs can be found at tdf.org/autism.

The New York Times ArtsBeat column wrote more about this program: http://artsbeat.blogs.nytimes.com/2011/08/31/program-hopes-to-make-broadway-friendlier-to-those-with-autism.

Embracing uniqueness (and singing about it)

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…

Things I wish I could say… but don’t / personal ramblings

I hate the fact that I censor myself. I hate the fact that I see and hear language surrounding disability and Moebius syndrome that makes me cringe, yet am not confident or assertive enough to insert my position into the dialogue. Who am I to say that someone else’s experiences and conceptualization of their condition or their child’s condition are “wrong” – of course they are not, the theoretical arguments I’ve read make sense to me intellectually and for me, emotionally, but they do not change individual experiences. So I find myself shirking away from saying anything, from intruding into a community in which I do not quite know my place or my feelings… yet. Maybe someday? Maybe not. I’m okay with the uncertainty for now. So I skirt around the outer perimeters, sometimes venturing in… sometimes sprinting away.