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
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.
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.
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.
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.
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.