Whole

I’m scanning the internet for a meme, a joke… something to express all of my fears as something light and silly, something laughable to get it off my chest…but there isn’t anything. I want a way to say it all out loud because I’ve been carrying it around for weeks, and I don’t know how to say what I need to say without feeling pathetic. But still, I can’t do this alone.

I feel hot, then cold, then numb. I’m tired and I have to lay down. I reach for a bottle of whiskey and tell myself that I’ll still be a woman when all of this is over. I run my fingers over my scars.

I never wanted my womanhood to be defined by sex and childbearing, but suddenly unable to do either, I find myself grappling with my value as a human. Will anybody want me? Do I have anything left to give? It was supposed to be a robotic surgery, picking through my muscles and nerves for adhesions, when suddenly the doctor sprung on me that the best option, really, the option I’d ultimately need, was a hysterectomy. The disease is already growing back, they said. Your organs will fail you anyway.

What?

Maybe this is a good thing. That’s what I tell myself, likely because I have to. Stay on the sunny side. Never again can someone claim they don’t want children, sucker me into a relationship, and then drop the bomb that I can’t fulfill their needs and they just thought I would change. One boyfriend knew three weeks in that kids were not an option with me, and he told me he didn’t want any. Then one night, in an ugly drunken slur I would come to know far too well, he told my best friend he had absolutely always wanted children. He just secretly believed I would change. When I left, he accused me in a torrent of scorn and sarcasm.

“I’m so sorry I wanted marriage and a family!”

Because my choices are valueless and less important than his. Because I must have never wanted to be married or have a family of my choosing. Because my body is perfect and functioning. Because any man has the right to demand pregnancy of a woman.

My friend Mia always calls it like it is. “ ‘Sorry I wanted marriage and a family‘? That’s a nice way of saying ‘Sorry I baited you into relationship based on a lie.’” She was right. She usually is.

I can’t change myself. I can’t change that I want to foster troubled kids before I’d ever feel the need to push one out of my body. I can’t change that my reproductive organs have been weaponized to devour the rest of my body. Auto immune diseases are a living nightmare. Your body betrays you, and mine is destroying itself.

Maybe men will have to want me for who I am after this.  Maybe the truth of my body will shut it all down. Maybe it’s a good thing.

This probably isn’t true. I suppose someone can still romance me, pretend they don’t want children, and then drop me a few years in. Even the lack of a uterus can’t put off a man on the hunt. I’ve heard the words, “You’re my dream girl.” enough times to make me shudder. I can’t be your dream, I’m just a person. How could someone who can’t have children be your dream girl if that’s what you’ve always wanted? I’m exhausted trying to carry around the fantasies projected onto me because I look good in blue jeans and tell witty jokes. I’m nobody’s dream girl. I’m a woman with scars and sight and perspective. I’m not damaged or broken, but I’ve seen some ugly things, and I’ve survived them. I’ve learned and I’ve grown and I’ve evolved into something wiser, quicker, stronger, and more assured. I have power and value beyond my ability to satisfy someone else’s needs. I sometimes falter, but I know this.

I’m better now. Happier. Free of constant shaming. Free of control. Of always being wrong to him, being told I have terrible morals and am making wrong choices. I’m free of not being allowed to hang out with my friends without retribution. Of being yelled at for scheduling my own doctor appointments without asking permission. I am free.

But I also wake up in the hospital bed alone. There is no one to sleep in the chair overnight. No one to hold me while I drift in and out, bandaged and bleeding, No one placing a stuffed animal in my arms and telling me they love me. Today, I am my strongest, fullest self I ever have been…

But in these moments, waiting for the terrible things that will help or hurt me, waiting for the days of liquid food and throwing up in garbage cans, waiting for my eighth, ninth, and tenth surgical scars… I am lonely.

They tell me I can’t wear my red lipstick in the OR, but I need to feel strong, more than just a piece of meat and a compilation of statistics, so I paint all of my nails black and shiny.

I am powerful, I tell myself.

When I wake up at 3am to take the two anti-microbial showers, I am strong.
When I can’t eat for days and have to drink a gallon of chalk, I am strong.
When I spend the days bleeding and sleeping, I am strong.

 
And when I wake up with no uterus, I’ll be alone. But alone with the smallest hope, the belief planted inside me that I have to hang on to – that I am still good enough, whole enough, to be loved.

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You’re hurting me.

Some days I’m so angry, and they stick me with another needle, and another, and another, and I just grit my teeth and take it.

“Anything,” I tell myself, “anything to get well.”

Some days I just stay in my room, I forget to eat and I don’t shower, and I cry a lot.

I’ve had so many needles placed directly into my nerves, or up through my vagina and into my abdominal wall, that I now posses the horrifying knowledge of what those things are “supposed” to feel like.  I understand the difference between when the epidural goes in properly and when the needle strikes my spine.  I can tell a botched IV an hour before my arm swells and the nurses take me seriously.  I can feel when a physical therapist has gentle hands, and I can sense if you don’t care if you’re hurting me.  And some of you don’t.

A few weeks ago I went to to have some of my spinal nerves destroyed with radiofrequency generated heat.  I don’t want to hope because hope has hurt so much, but I come in anyway, grasping at straws.  They go to put the line in, and even though I know I have “good” veins – clear to see, close to the top of my skin – they try to place it in my hand and fail.  I grimace as they fish around; I’ve felt worse.  They pull the needle out and try again, only this time, they hit something.  I jump and cry out, two things I never, ever do, and I try to tell them.

“It’s wrong, something’s wrong!” I yell, and they keep sticking me.

“Take it out!  It’s wrong, I know it’s wrong, take it out of me!”  I’m practically screaming.

“Sometimes it just hurts more in your hands.”

Sure it does.  They don’t know me, and they don’t know if I have a low pain tolerance, or any idea what this is supposed to be like, but I do.  “It’s wrong.” I glare.  “Take it out of me.”

They do, and when I feel my heart rate start dropping back to something close to normal I ask for a glass of water.

“We’re going to have an IV in you.  We’re just about to hydrate you.”  The doctor says.

I can feel the heat behind my eyes as I look at him.  “That’s lovely, but I’m asking because I’m nauseous, so it’s get me a cup or have me vomit on your sterile table, your choice.”

A minute later I sip the water, tell them to try again, and bite down hard on my tongue.

They get it this time.

They wheel me over to the procedure room, where I’m drifting in and out, but not out enough that I can’t feel them yank my pants off.  I should be embarrassed, but everyone in Los Angeles has seen me naked and stuck me with a needle at this point.  There is nothing left to be ashamed of.  There is no pride left to lose.

Anesthesia does odd things to you.  I dream the same dream over and over, and in it, I am alone in a spotlight in a dark room, screaming out again and again,

“You’re hurting me!  You’re hurting me!”

But no one hears me.  Or if they do, they don’t believe.

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Pi

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

Okay, 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 know what to do with myself.  Work flats don’t go with strappy dresses and boots make me look like a streetwalker.  Thankfully, this is Los Angeles, so in a pinch, a pair of glittery flip flops will do the trick.

In my travels I’ve discovered a thing or two.

In Massachusetts, I’m a high maintenance clusterfuck.

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

It feels 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 Jenna and Nikki are at the 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’s 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 of my weight on my left side and prop myself up with my left elbow as I reach for the polish.

“You want me to do that for you?”  It’s Jenna.  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 just no way to paint my right toenails without gross bodily harm.  I am kicking and screaming inside, fighting to do it, dying to do it, and I feel the tears welling up as I turn to Jenna and start to open my mouth.

It seems so 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 grab a box of cereal for you when you can’t reach?  But it isn’t.  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 toenails.  Your life is suddenly full of surprises, painful puzzles you never see coming, over and over again, unexpectedly having to solve an equation that never seems to be done.  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 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 that 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 have to tell my friends I can’t take, in every part of my body I can no longer get my fingers to, I’m losing a sense of adulthood, autonomy, and self.

But Jenna is still 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 other side.”

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

And today’s flavor is humble.

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