Oct 27: MASK

Oct 27:  MASK

 

Whenever I get a diagnosis, I’m never really sure that it’s my diagnosis.  I have what I have nicknamed Mystery Autoimmune Disease, or as my sarcasm-laden boyfriend likes to call it, “MAD Cow Disease.”  I forgive him because he painted me a picture of a Holstein cow in a can-can dress dancing on top of the Empire State Building, with purple biplanes circling around it and a Red Bull energy drink clutched in one fist.  Around Matt, you just go with it.

He loves me, even after what the disease has done to my face.

Which, honestly, isn’t that much, but it still makes me self-conscious.  My face is always puffy and swollen, and sometimes I break out in this rash that looks like small yellowish mountains erupting from my face.  It’s gross.  It grosses me out, I mean.  Matt would yell at me if he heard me say that.  “Remember that you’re beautiful and I love you!”  But I really am self-conscious about it.

He never makes masks for me, and he never paints “me,” no matter how silly, with a mask on.

I’m not the only one out on the streets wearing a mask.  I see others like me all the time.  A tiny little nod of recognition shows up between people who are wearing masks sometimes.  Glitter twinkles, peacock feathers bob, even those faceless stretchy see-thru thingies kind of shimmer.  I gotta wonder if it’s becoming a fashion statement.  Yo!  Fashion!

I asked Mike if he wanted to try out a plain mask the other day.  The two of us could walk around town like that.  After dark, why wouldn’t you?  I like the feeling that every night is Carnival.  He said thanks, but no.  Save it for Carnival.

About the only time that it gets to me anymore is seeing masks on kids when it’s not Halloween.  Poor kiddos.  But they look so cute.

And then there was yesterday.  At the Metro station I had to stand in front of a woman who didn’t have a mask on her face and stop three people with masks from hurting her.  They were calling her ugly and throwing trash at her.

“Shouldn’t you do something about your face?” one asked.  “You whore?  Who do you think you are?”

I jumped in front of them.  It didn’t look like anyone else was going to do anything.

“Whoa, Whoa!”

“What are you, some kind of fake sicko?” one asked.  “You don’t belong here.  Go home.”

I had to show them my face and they laughed at me and left, without showing me their faces.  The unmasked woman was still cowering behind me.

“Are you okay?”

She was.  But what about tomorrow?  And what about the next day?  The train came, but she scurried off in the other direction while I got on.  Embarrassed?  Still afraid? I didn’t actually ever see her face.  She had pulled her coat over her head.

On the train I sat down and just crashed.  Every joint in my body hurt just from walking around.  I’d been hurting all day, and pretending not to.  And short of breath.  Dizzy.

That’s when I took off the mask.  It wasn’t that I didn’t need it anymore.  It wasn’t that I felt beautiful or that I didn’t want to support other people like me.

I just…didn’t feel like it.

“Look at me,” I whispered all the way home as the masked and the maskless on the car stared at me.  “I’m here.  Look at me.”

This one, I’m not sure about.  I’m not sure what it means.  I may have completely hosed this one.  I know it’s not about going, “People with chronic conditions need to shut up about it!” or anything like that.  More like, “Nobody should have to hide in plain sight.”

Anyway, I glimpsed a friend’s post that said, “Progress is more important than perfection,” and decided to run with it.  I don’t mind progress.  But I’m coming to loathe perfection.

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October 26: VOODOO

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October 28: CEMETERY

1 Comment

  1. As an autoimmune girl, I love this. Nicely done, De!

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