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.

New



  http://www.youtube.com/watch?v=-2U0Ivkn2Ds

This blog is an intensely personal one. All my blogs are, however this reveals the moments that have shaped my year. The pain is still raw. I do not sleep very well anymore. My senses are heightened. I still jump when I hear a siren. I sob into the plughole and try to curl so deep into myself that I may disappear all together. This year has hurt me like few others. I am fragile, and I am afraid. I hope that you understand. I am not avoiding any of those that I love. I am just hurting, that’s all.

But most of all, together as a family, we made it through.

This blog is for my family- My soft spot to land.

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new
njuː/
adjective

  1. 1.

produced, introduced, or discovered recently or now for the first time; not existing before.

I was panicking, borderline hysterical. My breaths were ragged, sharp.  Mum tried to soothe me. ‘Calm down, it’s only a calendar’. She didn’t understand, she couldn’t. And nor did the lady at the stall. ‘Well, we have lots of lovely calendars’ she offered. It just needs to be new. I didn’t care for flowers or Van Gogh. Do you just have something that is fucking new?

Every New Years Eve it’s the same story, the same Facebook statuses, the same bold promises and the same affirmations. Next year is going to be better. Next year will be my year. Next year I will lose weight/get healthy/be happy/fall in love.

Next year will be better. I just wonder if any of us understand what better is.

scalpel
It all started with a mole in January. And the mole turned into a doctor’s appointment. Which soon became a referral to a specialist. And before we could appreciate the reality of what we were dealing with, a scalpel sliced my dad’s abdomen in two to remove the Melanoma. It was stage three. It was almost the worst, but we were lucky. It was a single millimeter off the worst.

da vinci

February was my second year of Uni and I was so determined. God knows I wanted this; I wanted it more than any of them. I would look around at their mini skirts and drunken Wednesday nights and I understood that I wanted that stethoscope more than they wanted for their next breath. Believe me when I say that I tried. I really, really did. I would be the best nurse that they ever saw.

hospital love

As the leaves began to fall in March, I was in love. I cringe to type it, but what would my writing be if it were not the truth. I was in love. Promises of barefoot weddings in the sand and a blue home by the sea were made. He kissed my bones and for a moment I could believe that I was enough. He was my best.

holter

It was April, and another admission to emergency. We joked that perhaps my heart could not handle so much love. He held my left and Mum held my right, and together we formed a trinity through the tubes. When I woke we would post my invitations, and it would be wonderful. We made the best.

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May and may I begin to weep. Twenty one. I made it. I have never felt so much love in a single room before, friends from far and wide. Car trips, train trips and plane trips. There were speeches and oxygen and vodka. At the end of the night, she stole a quiet moment. She whispered in my ear ‘You saved my life’. And I just squeezed her hand. It was the best twenty-first present in the world.

garden lamp

June is blue. June is panic. June is terror. June is when Mummy stopped breathing after dinner. June is calling 000 and pausing for a moment. June is saying to a man I had never met that my Mum had stopped breathing, and June is expecting a stranger to help me keep her alive. June is telling Daddy how to position her on the floor to begin resuscitation. June is sending baby brother to the mail box with a torch to wait for the ambulance. Later he sobbed and told me he was sorry. I couldn’t find a torch, so I took the garden solar lamp. I’m sorry. June is the paramedics telling me that she wouldn’t have survived another minute without adrenaline.

ICU

July and it can’t be happening again please god no not again this can’t be happening please just let her breathe. This time there is ICU and special doctors with special machines who wear special voices to say special things. Daddy cries and I don’t know what to do, so instead I make him a coffee and pretend that I know what the fuck I am doing.

paramedic scene

August. We are tired. Big brother almost injects the adrenaline upside down. Baby brother brings out six cans of coke for each paramedic gathered frantically in our driveway. ‘I thought they might be thirsty!’. I choke on a sob. I don’t know how we got here. I don’t know how we found our new worst. I just want it to stop.

waiting room

September. Wake me up when September ends. We can’t do this anymore. I slump on the floor in the ICU  waiting room. Parents are screaming for their dead child and I am sobbing for my dying Mum. We don’t try to comfort one another. You don’t do that in the ICU. Your own tragedy is enough, and you avoid one another for if you meet you will surely break all together.

I watch them attach the defibrillator, and I snap at the head ICU consultant. I thrust a research paper into his hands. ‘Severe catamenial anaphylaxis, with a prodromal phase of upwards of 3 days, resulting in sudden respiratory arrest, VT and requiring on average 15 separate administrations of adrenaline’. He told me he was sorry, he didn’t realise I was a doctor. He explains to me their plans to intubate. I tell him I’m not a doctor. I’m just trying to save my Mum’s life. They listen to me a little bit more after that.

That night I go home to his arms. He tells me that no one else will ever put up with someone like me.

I just want to die.

hour glass

October. Operate. We are running out of time. I keep telling them ‘You have until the 28th. She can’t survive another attack’. Their hands are tied. We have to wait. Once more I thrust research papers in their hands. I tell them that if they do not also perform a complete oopherectomy, Mummy will die.

They perform the oopherectomy.

My Mum survives. I ended it with him. And now I don’t want to survive.

rib sketch

November. November is placement. I worked for this. I worked so fucking hard. Do you understand how hard I worked? With IV’s in my arms and my hands stroking Mummy’s hair as she hovered in uncertainty. I tried. I tried and my ribs swelled and my heart swelled and I kept trying.

And then they sat me down. And told me that I was too sick to be a nurse.

And I cried so hard that I cracked a rib. I lost my reason, and found my worst.

Baby brother was awarded first place in a world wide engineering competition. He receives a $300,000 scholarship. He found his best, and I have to be happy with him. I am. I just wish I could have some best too.

books

December. I have applied for psychology. I have already begun to order my books. Sometimes I cry when I think about him, and sometimes I vomit. Always I feel safe. Mummy is alive, and is attack free for three months. Just quietly, I think I helped save her life. Dad still has No Evidence of Disease. My baby brothers are learning to be brothers once more. We are learning to breathe a little easier. We do not jump at every mole and every cough.

Most of all though, we have we. We made it.

This year was my worst. And it was my best. And next year will also be my worst, and my best. I now understand that every single day holds the capacity for a new best, and a new worst. You too will find your new bests and your new worsts, in places you never expected. Your best may be in a gutting decision and your worst may be in the arms of the one that you love. You will love and you will hate, you will fear and you will embrace. You will be happy and you will be sad. You will make mistakes, and you will disappoint. You will achieve and you will succeed.

All I ask is that you don’t cheapen the best and the worsts of this year. Because there will be more and one day you may not even remember them. Just know that they mattered.

I will make only a single resolution for the coming year.

That every day I will appreciate my bests, and respect my worsts. Because at the end of the day, that’s all our days were ever really made up of. And those days wouldn’t be quite as beautiful without them.

The pursuit of happiness


“So, this is my life. And I want you to know that I am both happy and sad at the same time, and I am still trying to work out how that could be”- Stephen Chbosky 

duckling

When I was fifteen, I had a pet duck named Jerry. Twelve hours later he was dead. The cause of death? Drowning.

These are the moments that define my life; It isn’t being accepted into nursing, or travelling overseas, or learning to walk again. It’s the drowning of my duck. And the day that my brother got stuck in a chicken wire rabbit hutch and I had to hose him out. Or getting t boned in a Safeway car park on Christmas Eve by an elderly man who flatly denied he had actually driven into me, despite the fact that his Toyota Camry was still firmly wedged into my back left door.

I’m not one to view the glass as half empty; in fact, if you were to ask anyone, they would likely tell you that I think my glass is more full and more fabulous than yours could ever be, regardless of whether I had a glass left or not (And it may or may not have a drowned duck in there).  I’m simply beginning to realise the importance of acknowledging mediocre days.

mediocre

You know the kind; the days where nothing terrible happens, but nothing overly wonderful happens either. ‘No, my family and golden retriever weren’t killed in a freak silo accident, but I didn’t win the lotto and fall in love either’. You feel ordinary, but you really have no real reason to complain, or account for the fact that you don’t feel great, so you just have to sit there feeling pathetically mediocre.

Recently I have been reading a book called ‘The Happiness Trap’. It’s like one of those horrendously cheesy self help books which you find in between ‘The dummies guide to telemarketing’ and ‘What to expect now your body is changing; a guide to puberty’. Except, it’s not really a self help book.

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Because it doesn’t promise to teach you how to become the next Miranda Kerr, or how to leave your job and become a Saint Bernard Breeder, or to appreciate that yes he really IS that into you, he just doesn’t return your calls or actually know your name or understand why you are standing in his office. All you need to do is log onto your Facebook, Instagram or Twitter to appreciate that we show a serious level of commitment to being happy, or at the very least appearing to be happy to everyone around us.

When was the last time that you updated your status to inform everyone that you were stood up on a date, or uploaded a photo of the holiday from hell where you spent new years eve sitting on a toilet with bali belly? Or when did you last tweet your favourite actress to thank them for making you feel horrendously inferior, or sent a shout out to the ex that broke your heart?

Chances are? You haven’t.

We like being happy. Why? For the very same reason that you eat ferrero rochere icream straight out of the tub; it feels good. But perhaps even more so; it is seemingly expected of us to be happy. We are forever being reminded that we should feel grateful, blessed, inspired and empowered. We aren’t starving to death in Sudan, or fleeing conflict in Syria. We live in a world in which McDonalds is open 24 hours for our convenience,  and Education is a right, not a privilege.

We are the most connected, educated and wealthy generation to date.

So why aren’t we happy?

tablets

I have spent the past seven years utterly convinced that if I could just go into remission, just stumble across the magic cure, I would be happy. And who wouldn’t be happy with that? Six months ago I learnt that there would be no cure for me, such is the beauty of genetic disorders. In that instant, the images of running around the local lake and not beginning my mornings retching into the sink disappeared. But I didn’t feel any less happy, just as I didn’t feel any less sad.

We are taught that happiness is a destination; all the magazines, books, television shows and forum pages scream their solutions at us. All you need to do is flick through the latest Marie Claire to learn that happiness can be found in five simple steps.

‘The Happiness Trap’ challenges this idea. In the words of one of the oldest clichés; it’s a journey, not a destination. And like all feelings it comes, and it goes. And it comes back again once more, and so on the cycle continues. But the more we believe that we can achieve it, a permanent state of bliss, the more we set ourselves up for bitter disappointment.

For the longest time I had myself convinced that I was so close. If I just finished high school. If I just got accepted into nursing. If I just began working.  If I just fell in love. If I just had higher cheekbones. If my scans were just a little clearer, then happiness would smack me in the face like a Saint Bernard puppy on Ketamine. There were so many justs. And yet, in the same breath people offended me. ‘How can you be happy? You’re sick’ they would say with pointed tongues (To which I typically responded by pointing out that they were total fucking muppets and they managed alright themselves).

Everyone says ‘As long as you have your health, nothing else matters’. But it’s not true. I don’t have my health, and plenty of things matter to me, like the fact that I am volunteering in a Thai orphanage next year, or that I plan to study my post grad in the UK, specialising in Paediatric Intensive Care. Or my family, who keep me just as mad as they do sane.

happy

We live in a society which values certain things; health, beauty, intelligence and financial wealth. These are the supposed keys to unlock the magic door to the land that is happiness. But over time I have learnt that no such key truly exists; happiness will come and it will go, just as will fear,  disappointment, guilt and excitement. None are dependent on the other, just as none are responsible for the other.

I don’t have my health, and I don’t have a boyfriend. I don’t have millions of dollars and I don’t have a Saint Bernard.

But I do have good days, and I have bad days. And I have mediocre days in-between. And I am happy. And I am sad. And I feel an infinite number of other things. And, like all feelings they will come, and they will go.

And just as sure as the sun will rise, tomorrow they will be back once more.