Elastic Heart


All lyrics are from Sia’s song ‘Elastic Heart’. It is covered here by Ale Aguiire. Her voice is beautiful. This is not what living with Marfan Syndrome is like everyday. This is just what it is like for me, in this moment, to live with it. With diagnosis and regular monitoring and treatment, people with Marfan Syndrome can now live up to 70 years of age. You can learn more about Marfan Syndrome here.

With love and light xx

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And another one bites the dust
Oh why can I not conquer love?
And I might have thought that we were one
Wanted to fight this war without weapons

Elastic communities are virtual graveyards, tufts of grass clutching at my ankles. The cost of connection is to hold the knowledge that I walk upon the graves of my own alikeness. There is always another tragedy, another anecdote. The story always begins with the knowledge that they were okay, and finishes with the reminder that you now step upon their bones.

‘And they died’. 

I want to shove your wartime metaphors down your trachea, and watch you choke. Defence a response to the offence. I am not fighting. If I do not fight, I cannot win, and I cannot lose. It is simpler this way. Kinder, perhaps. I don’t ask for much. I just want to be loved, fucked-up-fibrillin and all.

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And I wanted it, I wanted it bad
But there were so many red flags
Now another one bites the dust
Yeah, let’s be clear, I’ll trust no one

I beam, my laughter is raucous. I am Happy Jess. So successful my portrayal, it was been capitalised, and capitalised upon. If I act okay with it, then I am okay with it. And if I am okay with it, you are okay with it.

And if it’s okay, it doesn’t hurt.

But I wanted more than this. Some days my wrists etch their way towards their own flesh, aching to scratch free and clamber towards something better. This is not a life that I would have picked for myself, nor for another, despite any salt that may lay in the wounds between us.

I wanted more. I will likely never tell you exactly what it is that my teeth once dared to grip. It is less shameful this way. What I will tell you is that I wanted more, and that I will never get it.

There were too many red flags. Too much pain and too little fat. My disproportionately long limbs flapped in the wind, a sure sign that the wings of disease would soon take flight. If it is a crime to let the flag touch the ground, they dropped the whole sorry mess in its entirety. It took them too long to diagnose, to understand where my lanky pieces fit. Too much time for disease to progress, and too much opportunity for the genes to render me unable to pull on my own pair of jeans.

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You did not break me
I’m still fighting for peace

Some of us have thick skin. Others, like myself, nurse stretchy pieces of cellophane, tearing whenever the world deems it fit. Our hearts are elastic, and that’s what leads us to this whole sorry mess. We stretch, we contort. Sometimes we dissect, our aortas a split peach. And then we rest with the tufts of grass, a silent tear shed for the next one. Will this disease be too sharp for me? Maybe. Maybe the annual ECHO’s, six monthly cardiology appointments, and annual CT’s  will be enough to save me. In one palm the scalpels offer me the reassurance that my aorta rests contentedly. My mitral valve is thrashing, bulimic, regurgitating it’s contents back into the left palm of my pulse. But my peach fails to split, and for that I am grateful.

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And I will stay up through the night
And let’s be clear, won’t close my eyes
And I know that I can survive
I’ll walk through fire to save my life

This is what you don’t see. You do not see me rocking upon our threadbare carpet, sobbing until I retch, folded unto myself. I am an origami of the hurting variety. You do not see the hours upon which I lay silently weeping into the neck of my Golden Retriever, counting, always counting. Two hours until more meds. One hour. Ten more minutes. All the while reminding myself that I am so fucking pathetic. You see as I joke online about the clumps of blood launching from the depths of my lungs, but you do not know how it tastes.

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And I want it, I want my life so bad
I’m doing everything I can
Then another one bites the dust
It’s hard to lose a chosen one

I meditate and I consummate, theory meeting practice. I follow the instructions of physiotherapists, stretching myself in such a way that I will not separate another joint from its socket. I swallow their pretty little pills, and I pee into their yellow lidded labelled cups. I want it more than they, or you, will ever know. I want quality of life in place of vomit and shit spilling from my body in equal measure.

But then another system fucks itself over. I find myself on Facebook stepping upon the life of yet another person who once was just like me. And then I have to get up, go to uni, and try and work out why the fuck I am fighting for a peace that I will likely never know.

These days I do not know why. I am not sad, and I am not depressed.

I am just grieving.

I do not know what my peace will be. I know longer know what I wish for it to be.

Right now I just wish that I had warm hands to pull me from the clutches around my ankles, and hold my spine in their hands until I felt strong enough to take it back. All the while, our golden retriever sleeping at our feet.

It is not all bad, nor sad. It just aches in this moment.

So why do I do it?

I don’t know today. I can only surmise. Maybe it is because I have an assignment due. Maybe it is because earlier I slept upon the shoulders of my Golden Retriever as she took the weight of my world upon her own golden shoulders. Maybe it is because the drugs aren’t working, but my bed is soft, my sheets warm. Maybe it is because I am lucky enough to not have yet joined the earth beneath me. Maybe it is because I owe it to the ones who have.

But now, I must rest.

And tomorrow I will do it all over again.

Nothing arrived


I have not written a piece like this in a while. Sometimes it’s okay to not be okay with Mother Nature’s intended fate. All lyrics by ‘Villagers’ from their original ‘Nothing Arrived’. It is covered here by Jasmine Kennedy and James Howarth. Their talent is raw, and it is beautiful. I encourage you to listen.

With love and light x

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heart map

Savannah scatters and the seabird sings
So why should we fear what travel brings?
What were we hoping to get out of this?
Some kind of momentary bliss?

I do not wish to travel far. I will not ask my parents to unfold their mortgage to make an origami of two, so that I may travel afar and anew, although Tumblr tells me that I should expect as much.  I will not reach for the petrol clasp, and I will not hunch for a backpack that we know I could never carry. I just wish to move an inch to the left, enough stretch so that I may leave my flesh, if only for a moment. Instead, stethoscopes hang limply around their necks as they pump my flesh full so that I may not stretch so far as to crinkle a single fleck of skin. They do it because I demand it, and I demand it because society demands it of me. You do not allow the bones of a twenty-three year old to expire if they do not need to do as such for another fifty years. Another fifty years of bloody spittle and cracked cartilage, empty excuses for not turning up to life.

What did I hope to get out of this?

A lot more than what I am given.

So instead I bed lovers and escape my flesh by surrendering myself to it entirely.

I waited for Something, and Something died
So I waited for Nothing, and Nothing arrived
It’s our dearest ally, it’s our closest friend
It’s our darkest blackout, it’s our final end
My dear sweet Nothing, let’s start anew
From here on in it’s just me and you

nothing arrived

Waited, a past dalliance. I did not wait. I am impatient, heels clicking in white corridors. I am waiting. Waiting for something, something more than what I have been given. Something more than what I am owed. Just as the moon demands nothing of the sun, Mother Nature owes nothing to nobody and no body. It was always going to be when. When I finished High School. When I was accepted into Nursing. When I transferred to Psychology. When I fell in love. When I owned a golden sea cow, all paws and dizzy tail. Something was owed, and something would arrived.

Until something died, and nothing arrived.

It is ironic that the death of something signed my death warrant from nothing sidling into its place. This is not nothing, despite all that I told myself. We knew all along didn’t we? But it’s not nothing.

Nothing is the abandonment of ignorance, and its trysts with bliss. It is the consumption of desperate, gasping breaths as you try to grab tangible, and it’s the quiet kind of sadness that comes with knowing you have an incurable disorder which is going to continue to cripple you, before it finally kills you.

This disease will be my final end, my darkest blackout, my something that will one day arrive and steal me into nothing. Or maybe something, depending on what pretty secrets you like to tell yourself. This disease is not my friend, but its release will be. I beg of you this; do not begrudge me this one last shuddering relief. Judge me if you must, hurl at me demands to be grateful, to ‘fight’, Hallmark card sentiments and bitchy remarks. But allow me the gift of entering nothing unabashed, without the promise of a cure.

I waited for that cure for a long time.

I waited for Something and Something died
So I waited for Nothing, and Nothing arrived
Well I guess it’s over, I guess it’s begun
It’s a losers’ table, but we’ve already won
It’s a funny battle, it’s a constant game
I guess I was busy when Nothing came

dice clock

This is nothing. This is my life. The fate of my flesh was sealed before I even arrived. It was the usual love story. Boy meets girl. Boy and girl make love (In the shower, as they jokingly remind me whenever I’ve friends slouched in my lounge room). Boy and girl make girl. Girl inherits FBN1 mutation.

And nine months later, nothing arrived. I secured my place at the losers table long before I was forced into its splintered seat, friends whose organs splintered and betrayed not unlike my own. We lost in the game of life long before we understood that we were supposed to win. Maybe it matters, or at least is meant to. Maybe we are fooling ourselves, heads buried alive beneath the grains of sand. You question our sanity, pity our lack of awareness. I cannot speak for the lips of those I love. That is their own choice to make.

I speak only for myself. Some days it’s a battle, and others I cringe at the shame of the semantics, a cheesy placard pinned to my face. A constant game? That has more truth to the matter. Some days I get to class, and a HD arrives. Some days I crumple in an emergency room, and something dies. Sometimes figuratively, sometimes literally. But somewhere along the line, I learnt to keep myself busy. Academia litters my bedroom floor, along with funding applications for not for profits, reply to an email, fall in love with a stranger, and retch blood into the shower drain.

It’s a funny game, living with this disease. The thing about games is one roll is a die. If you have a group? You get to keep playing with the dice.

So I’ll stay at my losers table. You are welcome to join, if you so wish.

But when nothing arrives, I’ll be busy.