which agitates her at all times."
-- Marquis de Sade
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| Self portrait 7-16-13 |
“Oh, my twitchy witchy girl
I think you are so nice,
I give you bowls of porridge
And I give you bowls of ice
Cream.
I give you lots of kisses,
And I give lots of hugs,
But I never give you sandwiches
With bugs
In.”
I think you are so nice,
I give you bowls of porridge
And I give you bowls of ice
Cream.
I give you lots of kisses,
And I give lots of hugs,
But I never give you sandwiches
With bugs
In.”
-- Neil Gaiman, Coraline
"A guy who twitches his lips is just another guy with a lip twitch --
unless he's Humphrey Bogart."
-- Sammy Davis Jr.
I have a most annoying condition.
It is called a hemifacial spasm. It is a nervous system disorder which causes the right side of my face -- primarily my eyelid and all the muscles around my eye -- to twitch. Involuntarily. Constantly.
Usually only my eye is involved. But sometimes it spreads down and grabs onto my lip, my cheek.
For years it has come and gone. But it is particularly persistent right now.
In the past I have had it injected with Botox, twice, which worked, but also paralyzed my eye open so that I couldn't blink on one side for weeks. Both times I had to tape my eyelid shut to sleep so that my cornea wouldn't dry out overnight. Gross.
The doctor said that paralysis only happens to .02 percent of people who get the treatment. He also said I should never get injected there again. Oh, and he also said there is no other treatment.
And so I twitch and flutter, flutter and twitch.
It's super distracting and really embarrassing. I notice that people can't help looking right at it when it happens, and it makes me feel terribly unattractive and self-conscious. Eating makes it worse, so I don't meet friends for lunch or dinner.
Smiling triggers it too -- locks it up in a full-blown spasm, twisting my eye grotesquely.
So I avoid smiling.
Or I turn away to hide my google eye, my monster face.
I mostly avoid social situations if I can. And if I can't, I position myself so the other person can't see that side of my face. Or I try to camouflage it with my hand or sunglasses.
I've even started avoiding auditions for plays. Which really bothers me. Because that's what I do. That's my work. I am an actor. But a little bit of stress or agitation, like audition nerves, really kicks it into high gear. It happened on stage in a play I was in a few months ago, and the other guy doing the scene with me saw it and blanked on his lines. Then he teased me about it in the greenroom after the show. He wasn't being mean or anything, but the whole thing caused some really uncomfortable 6-year-old outcast kid emotions to burble up inside me, so I hurriedly changed out of costume and went and cried in my car.
This is one of those unavoidable struggles that nobody can do anything about.
No one can help me.
And that's where this blog comes in.
Making today's self portrait did help me deal with the difficult feelings I have been having because of this annoying condition. Somehow, strewing butterflies across the twitchy side of my face made me feel like less of a gargoyle.
I'm thinking about wearing an eye patch.
A really cool-looking, bad ass eye patch.
It could be my thing.
I could be that cool, bad ass chick with the eye patch.
