46. Portraits

A long time ago, I started taking photographs.

I started taking photographs of the gowns I wore –  the pills I took.

I started taking photographs of pain.

At first I thought it was a weird, pop culture, selfie compulsion… but I wasn’t sharing these photos.  They never touched a twitter or a tumblr.  They never left my phone.

For months this went on, needle after needle, table after table, crumpled white medical paper and a camera phone.

When he left, I cried and told my mother I finally figured out why I was taking these pictures.  I don’t look sick.  I look like a normal girl.  And in trying to be happy, in trying to be normal, I look from the outside like nothing is wrong, or if there is something wrong, it can’t possibly be too bad.

Somewhere deep inside, afraid that no one believes me, I have been documenting my descent… can anybody hear me?

Last week a friend told me he had been suffering from Crohn’s disease for over a year.  It took them that long to diagnose it, and silently, secretly he suffered.  I wanted to tell him that I understood, that I truly understood, but how can you?  Then I realized that in the midst of my completely inward terror, I had, somehow, created a tiny bit of good to give.

 

Better than a billion of my stupid, useless words – portraits.

 

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40. Pi

The thing I didn’t mention about my birthday is my toes.

Ok, I did mention my toes.

My shoes.

What I didn’t mention is that since I’ve lost the heels people would compliment with envy, the beauty, the stride, and the height…  if I’m wearing a pretty dress I don’t have a lot of options.  Work flats don’t go with strappy dresses and boots make me look like a streetwalker.  But thankfully this is Los Angeles so in a pinch, a pair of glittery flip flops will do the trick.

In Massachusetts, I’m a high maintenance clusterfuck.

In Los Angeles, I get called “busted” because I don’t paint my toes.

It’s stupid to say out loud but an athlete may define himself by a weight class or a line drive.   An intellectual is allowed to hold their identity in their ability to reason and recall.  My strength, my beauty, my ferocity, and my ambition were expressed in a wickedly vast, slick salvaged, bargain basement, sky high heel collection.

It’s pre-party and only Cindy and Mel are at my house, unpacking extra wine glasses and opening makeup cases.  I’m hovering, vibrating in flux; a weird sad hummingbird tittering around my shoe based insecurity.  If I have to wear flats, I should at least put on nail polish.  Like looking good after a breakup, it’s less about inducing longing and more about the fact that you just can’t have any kinks in your armor.  No notches that don’t bend or holes in the armpit.  You can’t let the fragile parts show.

It is only when I get on the ground  that I realize I don’t think I can do this.  The bending and reaching.  The time it will take on one side.  I realize the physical impossibility of it.  No.  It’s your birthday.  Don’t cry.

As always, with a dumb sense of fight that can’t be cured despite an ever mounting pile of losses, I struggle to put all my weight on my left side and prop myself with my left elbow as I reach for the polish.

“You want me to do that for you?”  It’s Mel.  It’s a simple question.

“I got it”  I smile.  And I do have it.  I do.  I’m deftly painting my left toes almost like you might expect a girl to do.  From a distance, I could fake it.  You’d never know.  I finish, satisfied.  And then stupidly look to my right.  I twist.  I bend.  I grope.  I fail.  I can’t do it.  I just can’t.  There’s no way to paint my right toenails without gross bodily harm.  And I want to do it.  I want to do it so badly that I have a kicking, screaming, fighting match in my brain before I look up at Mel and start to open my mouth.

It seems simple to allow someone to help you; I know if I were seeing it from a distance I would wonder why it was so hard.  Hell, even up close and experiencing it I wonder why it’s so hard.  Shouldn’t it just be like letting a tall person get a box of cereal you can’t reach?  But it isn’t.  You see, you were never tall enough to reach that cereal.  But just yesterday, or at least, the last time you checked, you could paint your own damn toe nails.  Your life is suddenly full of surprises, painful puzzles you never see coming.  Over and over again, unexpectedly having to solve for pi.  You get ready to do something you’ve done a thousand times, like sit in a chair, or drive a car, or paint your own stupid toe nails… and you can’t.  You can’t and you don’t know how to live your life without everything you knew to do before sickness.  You don’t know the first way around it.  And when you finally start to figure it out you realize the answer is just a damn circle, a snake eating it’s tail.  An answer you can keep solving for day in and day out, from the moment you wake up till your head hits the pillow – and you’ll still never be finished.  Pi.

I realize why asking for help is so hard.    It is because with every concession, you feel you are reneging on a piece of your humanity.  In every trip I can’t make, in every part of my own body I can no longer get my fingers to, I’m losing a sense of adulthood, autonomy, and self.

But Mel is looking at me.  And she’s a nurse, she’s not dumb.  She can see I can’t reach.

“Yeah,” I whisper, “Maybe I do need you to do the right side.”

And I scoot across the floor towards her and let her paint my toes.  Grieving my losses while thanking whatever goodness there is left in the universe that someone is still there offering to help.  Because for now, whether or not I like it, I’m still solving for pi.

And today’s flavor is humble.