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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Portraits

A little over two years 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 my boyfriend 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 desperately to be normal, I look from the outside like nothing is wrong.  Or, if something is 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 a disease for over a year.  It took them that long to diagnose him, and silently, secretly, he suffered.  I wanted to tell him that I understood, that I truly understood, but how can you?  And 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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Too

It isn’t until the morning after – the sunlight streaming through the half ripped out vertical blinds – that I really feel like shit.

I only had one drink last night, followed by plastic cup after plastic cup of water, and a cold walk in the dark from downtown.  I had spent two hours crying on Travis’s bathroom floor, my phone, screaming drunken accusations, all in text.  Having broken up three days prior to New Year’s Eve, we thought maybe we could talk it out.

“I just don’t want to be around you while there’s all this alcohol.” I said. “I don’t think it’ll help things.”

I asked if I could just go downtown and spend some time with my friends instead of spending the evening alone, because everything was so volatile.  We needed to talk, just not then.

“Okay, sure.” He tells me.

But at two am the texts start rolling in.

“You bitch, you liar. You did this.  I didn’t do this, you did.  This is over, it’s your fault.”

Dumbfounded, I call a thousand times, but he never answers.

“You’re a liar.  You lied to me, I don’t give a shit you fucked up.”

I take off from the bar downtown, a taxi at this time of night is an impossibility, and run as fast as my broken hip can take me down the street, trying to get away from the chaos.  Trying to get him to call me back.  But he won’t.

“You’re in heels you bitch.”

What?!?  I send him pictures of my feet, my shoes… I have a destroyed pelvis.  For the last nine months they have poked me, prodded me, injected me, mangled me, found tumors, diseased bursa, and inflamed bone marrow, but they still don’t know what’s going on.  God, I’m not wearing heels.  He thinks I’m somehow betraying him with footware.

But he won’t respond, he won’t respond.

I’m tripping down the street, sobbing, when down the dark side street, a cab pulls over.

“Honey, what wrong, why you crying?”

But I can’t get any words out.

“Honey, it’s ok.  It’s ok.  I’ll take you home.”

Hysterical, I get into the taxi.  I manage to squeak out the only address I know where I can go to be safe.

The cab pulls up to Travis’s house, and the driver won’t take any money.  He tells me to go inside and that everything will be ok.  “Everything ok!”  He keeps saying, as he pushes the cash back into my hands. I call Travis.

“Travis… are you home?”

“What’s wrong.” He can hear it in my voice.

“I’m downstairs, can you get me?”

The part of this I most wish wasn’t true is that once Travis let me in to his bathroom and lent me a pair of oversized pajamas, I continued to try to beg sense into a drunk man for the next two hours, pulling off my false eyelashes on the bathroom floor.  He’s still screaming, swearing in writing, but he won’t take any of my calls.  Or my thousand requests for Facetime to prove I was where I said I would be.  I was doing what I said I would be doing.  I am frantically texting pictures of my face, my feet, the room, Travis, and begging please.  Please.  I don’t understand.  Why are you doing this to me? Please.  Please.  And so many other stupid words and phrases that turned out to just be words strung together that should have meant something but didn’t.

I stayed on that cold floor until four am.  Begging and grasping and completely lost.  I love him so much.  Why would he do this to me?  Why is he doing this?

And then I realize he is doing this because he has been drinking.  And I realize this is never going to end.  And after all that I feel an amazing sudden clarity; and I realize everything that I need to do next.  I send him a message, and I turn off my phone.  I wash my face, and climb into the far side of Travis’s bed, wearing his old sweats.  I tell myself I’m not going to cry there, but I keep crying there, then asking if it’s ok with his girlfriend that I’m there, then crying again, then saying I’m done crying, then crying some more.  He reminds me that the living room is freezing, that his girlfriend is a secure and kindhearted person, and that we’ve known each other since we were eleven.  It’s ok.  I cry some more and tell him I’ll try to shut up, but since I’ve cried so much I think I’ll probably snore.

Travis falls asleep immediately.

Travis snores.

In the morning, when the sun shines in too bright and it’s maybe only three hours later, we get up, because it’s too light to sleep.

“I want to make you breakfast.” He says, because he is a good friend, and because my stomach is empty, and because I have black rings under my eyes and am in desperate need of care.  I tell him that’s sweet, but not to worry.

“I have eggs!”  He yells, before realizing they’re past the expiration date.

“Eh, whatever.” I say

“You really want to take that kind of a chance?”

“I’m feeling lucky.”

I pause.

“Oh fuck it, I’m feeling the opposite of lucky.  I’m feeling a million times worse than lucky, but I’m feeling so terrible that a couple of bad eggs couldn’t make things any worse.”

Travis laughs.

“Everything you say sounds like it’s a quote from a book or a movie or something.”

“I think men fall in love with me because of that and then leave me when they realize I’m an actual person.”

He hugs me.  We go to Ralphs for eggs.

We make and enjoy breakfast.  I hand him my phone as it turns back on and ask him if there was anything not hideous or hateful said as it rings 8 or 9 times, indicating all the texts to wade through.  Travis checks the phone.

“No.” He says decidedly.  So I don’t read them.

About an hour later, another one comes through.

“Everything after last night just left me more confused that ever…”

And confused myself, I read every last hateful word from the night before until I am unshakeable.  And all I do is copy, word for word, the final text I sent before I turned off the phone.

“If you are confused, allow me to clarify.  By the time I come home, I want all of your things out of my house.  I want you to put your keys on the table by the door, and I want you to leave, and never, ever come back.”

He tells me he can’t get there.  He tells me this, he tells me that.  He gives a thousand reasons and excuses but he has a functioning car and his crap in my home so he’d better remove it.  I ignore him.  Travis illegally downloads Catching Fire so I can watch it since my bent up body doesn’t allow me to sit in theater chairs, and surprisingly it turns out that movies where lots of people die can be hard to watch after you’ve just suffered a major loss.  I cry, then say it’s a great movie, then cry, then say I love Lenny Kravitz, then cry some more.

Enough people have died in the film at this point that I’m starting to lose it.  I ask Travis to pause the movie and he does.  He has me covered in blankets with a heater straight on me, but I’m still shivering.  He comes over to pat my back as I cover my face with my hands and start to sob.  The hateful words said to me.  The loss of love I thought would last.  The disintegration of everything I planned around me all over again.  And it’s only because I’m so broke and vulnerable, only because I’ve been ripped up one side and down the other, only because my nerves are raw and my heart is bleeding and my dreams are crushed, do I suddenly whisper in his hear what I’ve been stuffing into corners, hiding under cheerfulness and positive platitudes, afraid to say out loud to anyone for the last nine months.

“Jon died.  Jon died.  I could die too.”

“I’m scared.”

And he holds me.  He holds me like a good friend would.