Okay.



‘Everything will be okay in the end. And if it’s not okay, it’s not the end’.

Unknown.

……………………………………………………………………….

Why me?

That was the elephant in the room, the moose in the washing machine, the penis in the vagina. Regardless of which semantics you prefer, there was no ignoring it, and no escaping the fact.

It was just there.

When you are Chronically Ill, the injustice and complete unfairness of it all fills every waking breath, and then follows you into the night. It sleeps beneath the covers with you, a limb poking into your back, the bed short sheeted.

You spend every waking moment asking ‘Whis this? Why me? And why now?’

For me, this was usually followed by hysterical sobbing. Most people have a favourite sex position, and I did too. My favourite position was usually curled up on the bathroom, crying to Adele.

I was totally hot.

And you are asking this because you don’t know. You don’t have the answers.

What did you do that was so terribly wrong?

Maybe it was the snails that I enjoyed squishing as an 8 year old, and serving them up on a plate to my horrified Mum. Maybe it was the karma that accrued over the years of dressing my little brothers in pink frilly skirts and red lipstick. Or maybe it was the moth that I watched meet it’s demise under the arse of my 50 kilo black Labrador.  Maybe I should have dived to save it.

Looking back, if the Labrador had sat on me I probably would have died too.

My Nan was a firm believer that she had all the answers. Such answers were to be found

in the trust of our Lord Almighty. We must pray Jess’.

Growing up in a household where my Dad’s favourite catchcry was ‘Jesus bloody Christ!’ I wasn’t even sure how one went about praying. I decided that it should probably model a Dear Santa letter. Short, succinct, polite, yet to the point. And at this point I was pretty sure that they were both men with beards that didn’t exist.

I laid in my bed, hands clasped together in something resembling more of hand origami rather than the typical prayer ‘stance’ and cleared my throat.

‘Ahem. Dear Lord Almighty Tosspot. Go take a dump on someone elses life. Yours sincerely, Jess’.

Yep, that should do it, I thought.

I gave Him seven working business days to get back to me with a response.

I guess God’s message must have gotten lost with the reindeers that were supposed to bring me a donkey as a child, because 6 years later I’m still waiting.

Maybe next time I pray I’ll tell him to get a more reliable team of Reindeer.

Today, I was interviewed by a Med student for an assignment on Chronic Illness. Across our coffees she asked;

What has changed in your attitude from when you first got sick, to now?’

After a while, I softly replied.

Everything.

There was once a time when I cried when I woke up, simply for that reason. I had woken up. I rotted away in hospital beds and wheelchairs, uninterested as to whether I lived or died. I just wanted my body to make it’s mind up already.

And one day I woke up, and realised that I had been crying for years. I was no closer to a cure, nor any further away from death.

But I just didn’t want to cry anymore. So I started smiling instead.

When you are Chronically Ill, every single minute of everyday is impacted. Every breath, every burst of laughter, every vomit and every cry. It is always there, threatening. Threatening to take another piece of you and threatening to take you entirely.

But after a few years I stopped trying to shut it out. I unlocked the doors, and asked it to wipe it’s feet on the ‘Welcome’ mat. You cannot run, and you cannot hide. And God knows I tried. But spending your life running when you cannot walk is so very tiring.

I just didn’t want that life anymore.

So I stopped running. I let it snuggle in against me in the thick of night. And I started to live.

In the mornings, my body is at it’s most broken. It has been in it’s temporary casket for twelve hours. It is finally at rest, and wishes to stay there forever. I like to think that I roll out of bed hair perfect, glowing skin and with a naked black man beside me (or inside me I guess).

In reality, I am a bag of bones shuffling from beneath the covers. I could weep that in the mornings I cannot walk. Instead, my speakers blast ‘I’m sexy and I know it’ and I shuffle my way through the morning. Big Brother was on to something, although I dare say that’s all they were onto.

I must clear the mucous from my lungs and so I heave into the sink. I take pride in the fact that the basin now looks like it is filled with little yellow ducklings, and I am often tempted to leave the splatters of yellow and blood to scare my brother. But that tends to get me grounded. I bet you can’t say that you were ever grounded for chasing your brother around the house with a bloody syringe, just to listen to him squeal.

Vogue tells me that ‘black is the new black’. And when it comes to men, I cannot help but agree. But when it comes to my clothing, I am a true fabric racist. Black is out, and colour is in. Layers of blue, green and yellow litter my bedroom floor and the rest of my body. I don’t have boobs, but by God I can try. Bustiers and low cut tops detract from the fact that I am too emaciated to ever be Pamela Anderson, or even Keira Knightley for that poor, sorry matter. But this doesn’t stop me jumping up and down in front of the mirror singing

‘Big booby bitches, we like big booby bitches’.

I reach just under 6 foot, but heels are a must. They are chipping away at my already brittle bones, but I don’t have time for a sense of boredom. I am sexy, and I am fabulous, and my clothing will adhere to all Sex God standards.

By the time that I arrive at University I am a 6 foot Glamazon. The Tracksuits stare at me, unsure of what to make of the girl that wears red lipstick and all the colours of the Mardi Gras. But they don’t understand. My life is too short to be comfortable.

I bleed, retch and vomit between classes, sex sessions and dinner with friends. In another twenty year old woman’s car you might find a box of condoms in her glovebox. In mine you will find vomit bags. I won’t lie; I am keen to meet a man of such size who could turn that vomit bag into the former.

And of course, everyone is jealous that they are not elite athletes in the Vomlympics. One is scored on their range, accuracy and minimalist approach to sound effects. And of course, if you manage to vomit through your (now ex) boyfriend’s Mother’s house, you are bound to take  home the gold.

My gold medal was presented to me as a mop.

And there are men of course. I know you like to hold close to your heart the ideation that the Chronically Ill are the beautiful, dying swans, filled with grace, modesty and a chastity belt around their pelvis. I am unsure as to where you all go this idea. Because in all honesty, we are much more like that of the rabbit than the swan. And right now, you are probably the stunned possum.

Is it difficult? Of course. There is no greater mood killer than screaming out ‘OHMYGOD. MY HIP IS STUCK.’ At least the beginning sounded hot.

One time I vomited on a date.

Afterwards, he kissed me.

And in that moment I knew that I would always be pretty.

In hospital, I race my wheelchair and perform strip teases on IV poles. I stay up until the wee hours of the night with my room mates who are in their final weeks. We quietly chat, and bond over the tv shows whose season final they will never see.

I dress as a football player to my Specialist appointments in the weeks that Essendon are triumphant, and remind them that I am to marry Angus Monfries;  He just doesn’t know it yet. I connect the dot with my surgery scars, and make a smiley face so that they don’t scare my little brother anymore.

When my hair falls out, I invest in the most brilliant of headscarves, and spend my days pretending to be a pirate. I plan my funeral, and take pride in the fact that it is going to be impossibly beautiful and equally hilarious. I am too unwell to stand in the shower, so instead I sit in the pool of tiles and close my eyes. And for four minutes, I am beneath a waterfall. All so that I do not fall myself.

I skid on the early morning frost in my slippers, and I make cubby houses in my bedroom with sheets when I am too broken to leave the house. I make love beneath the cold night sky, and I battle the resulting chest infections with a smile on my face.

This does not mean that it is easy. I bleed, I vomit, I retch, I scream out in pain every single day. Some days I feel my body growing weaker, and I wonder just how much can be done. My heart is trodden on by those who cannot cope with all that runs through my veins. I bury my friends, and I weep in waiting rooms.

When I first became seriously ill more than six years ago, I was so certain that nothing would ever be ok again.

And it’s still not okay.

I am not okay.

But I am happy.

And that’s more than what most people can say.

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7 thoughts on “Okay.

    • Because of my conditions I am highly susceptible to constant infections, and as a result of those constant infections I have excessive mucous in my epithelial linings ie throat, nose and lungs. Is is worse in the mornings because it has been lying in my chest all night, but I am able to clear it out somewhat 🙂

      Thankyou so much, it really means the world xx

  1. Can’t imagine what life must be like for you. I’m glad you were able to embrace your illness rather than raging against it with futility. I don’t know why things are the way they are. I’ve stopped asking. I just do what needs to be done.

    • My life is difficult and awful, but impossibly beautiful, and I am grateful for my illness every single day. I do not know why things are the way they are either; They just are. So we must find the beauty in it, regardless. xx

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