Changes

“I’m through accepting limits
’cause someone says they’re so
Some things I cannot change
But till I try, I’ll never know” – Defying Gravity, Wicked

Something has happened that I honestly didn’t think was possible: I can move the left side of my mouth. I can smile more evenly, with control over it. I still am not entirely sure what to make of this new ability!

I honestly did not entirely believe Sara Rosenfed-Johnson when she said this might be possible from the exercises she was giving me. I could believe her with lip closure, with bilabial sounds, with jaw strength… that seemed attainable.

But smile movement on my left side just seemed…unattainable. When I decided as a young teenager that the smile surgery wasn’t for me, I thought I had lost any hope of having a full smile. And I was okay with that.

But this is pretty great now that it has happened!

I’ve been doing exercises on and off (sorry, Sara!) for the past 6 or so years, working on different things. They started with jaw strength, then moved to lip movement. They’re great for adults to do on your own (maybe minus the rather creepy Casper the Ghost vibrator next time!) because they are easy. You can double-task, I spent a lot of time a few years ago reading the New York Times Arts section while doing exercises. And at least for me, you see results.

I didn’t actually hate speech therapy all that much most of the time as a child (private-public school speech was hit or miss)-I liked to talk, and getting an adult’s undivided attention was not bad). But doing specific exercises makes a lot more sense as an adult.

So those are my experiences so far. I’m interested to see what is in the future for me.

(Note: These are my individual experiences, I am not paid in any way by TalkTools to promote their product.)

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smile

Recommended Reading: About Face

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I love photography. I find it simple yet beautiful. I wrote my master’s thesis on the Positive Exposure photography project, and I love seeing photographers exploring differences.

Photographer Sage Sohier spent time at the Facial Nerve Center at the Massachusetts Eye and Ear Infirmary in Boston, photographing patients – most before surgery. I loved how frank these photographs were, not that they glorified distinctive-looking faces, but that they didn’t try to hide or camouflage anything. I found them simple and beautiful.

Facial difference is a strange disability to have, in that it is not in the public’s consciousness. I love that the world – at least the art/academic world – is paying attention to, even highlighting, them. For both people with congenital or acquired conditions (I would have loved this book as a child!), it’s a remarkably powerful thing to be exposed to people who look like you.

Overall, I highly recommend this book for anyone affected by or interested in facial differences.

…Don’t forget to smile

…Don’t forget to smile

“For people who suffer from Moebius syndrome, which is the inability to move facial muscles, they often explain how they have to tell themselves to be happy or sad…The happiness or sadness doesn’t occur naturally to them. They are intellectualizing their feelings.” – Dr. Eric Finzi

I came across this gem today, and I guess it would be irresponsible of me not to delve deeper into it.  I never understood this research finding (that has been handily refuted by my friend Kathleen Bogart, a psychologist who happens to have Moebius syndrome).  If anything, I always almost wonder if I’m over-emotional in response to having limited facial expression. I am passionate, strong-willed and often too hard on myself.  Definitely no one has ever accused me of lacking emotion in any way, shape or form!  Do I intellectualize my feelings? Sure, but then again I pretty much intellectualize everything!  I honestly think that has more to do with my upbringing and schooling than the fact that I have limited facial expressions.

And, for what it’s worth, people tell me I’m very expressive even with partial pareisis.  So I think we just intrinsically learn how to be expressive in other ways, and I don’t believe that’s a negative or problematic way to live.