On Tuesday I underwent an Echocardiogram, as I am being investigated for a genetic condition known as Ehlers Danlos Syndrome.
Unfortunately as a result of this Echo, I was diagnosed with a heart condition, which is synonymous with EDS.
Sometimes it seems that this journey will never end.
But I know that one day, it will.
And until that day comes, I want to make sure I continue to see the colors of my life.
Lyrics are from ‘Yellow light’ by Monsters and Men.
I have been listening to this piano piece however, over the past few days and I think you will understand why. I have embedded it here for you to listen to as you read.
Love Jess xxxx
I’m looking for a place to start
And everything feels so different now
It’s crazy, isn’t it? Or at least that’s what I think, as I lay curled between the sheets. I place my hand upon my left breast. It is bruised, blackened. They aren’t supposed to be like this; I always joke that a mouthful is more fun than a handful. But I don’t know what to do with this, this is different. I have no idea where to begin, so I follow my training.
Begin by placing your hand upon my mid clavicular line. Take a fingertip, for you needn’t anymore. The radiographer yesterday told me so. He smiled.
Usually being thin it makes it easier. But your intercostal spaces are so tiny.
Now work your way down, a kiss at a time. First intercostal space, and second. This is where you would find my aorta, but that isn’t of any interest to them anymore. My chest shuddered with relief. This meant no Marfan’s. No aortic dissection. No cessation of my life as I walked to the store, had a shower or vacuumed the lounge. No, this part was safe.
You are now at the third and fourth intercostal space. But of course, this is blank space, wasted space. It isn’t the room which has changed everything.
You have reached my nipple. Perhaps in another time, in another land you would have flickered your tongue here, in heated protest and admiration. This is the fifth intercostals space. Your place of lust, and mine of fault.
This is where we begin.
And I have no fucking idea where to go from here.
So yeah, I guess it is crazy. Because nothing has changed. My heart is still the same as it was the day before, and the week before that, and all the months and years prior to that still. But everything has changed. Because the radiographer told me so, as he pressed his two dimensional camera upon the curve of my supple breast tissue.
Everything has changed because I know it has.
And I wonder if I will ever forget.
Just grab a hold of my hand
I will lead you through this wonderland
Mummy is scared, this I know.
For her Facebook told me so.
Daddy swore. He asked questions. And then he stopped asking questions. He is a clever man. He knows that we do not have the answers. He also knows that he may not want to hear them.
Brother is away working, but he called me all the same. ‘Oh’ he said. His voice dropped one too many octaves, and never finished his sentence. And so I am left to wonder as to the possibilities. Oh dear? Oh my god? Oh okay? Oh well? I guess we will never know.
And just as the three bears had their baby, we have ours. Baby brother was just right. He joked, accused me of being a husk. He winked at me. So that’s why you don’t have a boyfriend. All the love is leaking out of you!
Of course he was right; he usually is. I am without love in my life, or at least without the soul mate kind. I have no one to keep me warm at night, no lips to kiss away the bruises now peppering my breast. And that’s a wonder in itself. People shake their heads.
How can you not have a boyfriend? You’re gorgeous!
Gushing always was good for the soul. If only it were enough to fix my heart.
But I am not without hands to hold, to stroke my face, to slap my arm for cheek. Cheek is the one way in which my family can grasp just how ill I am. If there are no jokes, there is little of me left. So I showed them just how well I was.
Sorry Mum, I can’t do the dishes tonight. I’ve got a dud heart.
She slapped me on the arm.
Don’t think I’m falling for that you little shit!
And then we laughed until it wasn’t very funny anymore.
We like to think that we are without choice, without direction. At the mercy of our own fate, left to flail hopelessly and desperately, praying to a God we don’t believe in to pluck us from our own mortality. But you forgot, didn’t you? Because you see, you never had to drown. You made the decision to.
It was too much, too hard, too sad and too tragic. And so you sunk to your shallow grave. The truth is, it is your own fault that you drowned; All you had to do was float.
I was never a good swimmer, even before disease riddled my bones. But I was clever, and smarter still. I could find a feather, a leaf, a sheep tooth. And from it I could make a raft. Even when I had nothing, I would still find a way to make something.
The sharks are closing in, threatening me with my own genetics. Anterior Mitral Leaflet Hypertrophy leading to Mitral Valve Prolapse and Mitral Valve Regurgitation. Last week, my Mummy asked my Professor nervously ‘Can your genetics change?’.
I smiled. She is so brave in her naivety. That is the power of my Mummy’s love, her faith in me so profound she fully expects that I can change my very foundations and thus change my fate.
He smiled back, the corners of his mouth turning south rather than true north. He looked sad.
‘No. No they cannot’.
Just follow my yellow light
And ignore those big warning signs
The light wasn’t yellow. It was blue eyes, ocean tears and our greatest fears. The radiographer circled the screen. ‘See this blue? This is where your blood is returning to your left atrium’.
I’ve been studying nursing long enough to know that I do not like blue anymore.
After forty five minutes, I covered my breast up once more. I thanked him for his time. He handed me a towel and apologised for hurting me.
I flounced out of the room, all laughter and jokes. I thought that was the end of it.
He glanced at me, hesitated.
‘Good luck, Jess.’
And I choked back a sob.
Somewhere deep in the dark
A howling beasts hears us talk
Mummy had fallen asleep in the waiting room. I wake her up, smile. Her voice heavy with a full days work behind her, she distractedly asked me how I went. They are staring at me expectantly, a waiting room filled with eyes. I know what they are thinking, as they rest their hands upon their canes, eyeing off my heels and mini skirt.
Why is she here?
I cannot tell her, not here. So I wait. I wait until we walk past the automated doors, the pumps of Microshield, the porters who wheeled me to various radiology departments just a week prior. They nod their recognition, and I follow their lead.
Finally, I stop.
‘The ship has a leak, Mum’.
And I am certain it is listening to us, ears pressed against my ribs.
I think I hear it laugh.
I dare you to close your eyes
And see all the colors in disguise
Seal your lashes shut. Make them do all that my cardiac leaflets will not. Don’t peek, my darling, for you will ruin the surprise. And it was a surprise, in every sense of the word, although it shouldn’t have been. The breathlessness, the racing rabbit beneath my chest as the earth spun without me. Once home, I headed to the only place which made sense at the time.
Google can be your best friend, or it can be your enemy. And just as I could choose whether to drown or float, I could choose what page I believed. Only, I couldn’t. One page, two, three and a dozen. By the twentieth separate website, I sat back, took a breath, and felt my lip quiver without permission.
They all screamed the same song.
So I left my computer. I left the knowledge placed into my palms from those of the radiographer. I left the breathlessness, and I left the memory of seeing blue where I shouldn’t have.
I closed my eyes, and I saw the colors of my life.
Nails painted in pastel purple, melon and grass green, dancing upon ivory and shadow.
Peacock blue eyelashes and white strobe lighting up my nights.
Cherry blossom and paint splattered upon Daddy’s verandah as I fill my days with creation.
Last night I was speaking with a darling friend. It was the sort of night where shudders and tears were never far away. She said to me ‘We have to enjoy the little things. And it’s shit, because it means we’re missing out on the big things’.
And we cried. But we weren’t finished.
But our little things add up to more than any of their big things ever will.
Running into the night
The earth is shaking and I see a light
The light is blinding my eyes
As the soft walls eat us alive
I don’t run of course, for I cannot. Joggers and short shorts are purely for display now. They were robbed of any use long ago. But even if I could, I would not. That doesn’t mean that I am not scared, for I am terrified. Fight or flight, that is what my biology teacher talks to us about, stethoscopes hanging lazily around our baby bird necks.
No, I will not flight.
But nor will I fight. Chronic Illness and War is synonymous. We are always fighting, battling, losing, winning, or so the media tells us. We are soldiers without choice, heroes who never wanted such a thing. Our scars speak of our stories from the battle ground, and we are sent rations of flowers and stuffed toys.
If only it were so simplistic.
The soft walls of the hospital, of my cardiac leaflet, of my own DNA are eating me alive in fits and chunks. I can scream and I can cry. I can fight or I can flight.
I can drown, or I can float.
But I want something more than that.
So when you sign off on my Echocardiogram, visit me on the ward, execute my fate and try to save me from the sea, do not feel sad for me, for I will not be there.
I’m too busy kissing the colors of my heart.