With every piece I write, I am often inspired by a particular piece of music. For this blog, I was inspired by the song ‘Life is beautiful’ by Vega4. It features in the movie ‘My Sisters Keeper’, based on a teenage girl fighting a very different disease to me. But, as so many of you already understand, the name of a battle is irrelevant. We all hear the same cry. Here is the link to the song, with footage from My Sisters Keeper. It really is worth a look. http://www.youtube.com/watch?v=NoqY8iHBr0E&feature=related
For everyone who never tried to cure me.
I used to have this feeling that the world knew something about me, and that everyone was too scared to tell me.
School corridors would fill with one hundred pairs of pitying lashes. The whispers would echo, and bounce off their pointed fingers. Teachers would smile, and greet me by name, even though I had never taken seat in their class.
The ladies in Myer with the curled lips and pinching buns would look away, always a little to quickly, as my wheelchair broke their perfect illusions. Everyone was always smiling, their own private joke that they could never share with me.
She is just a girl.
I couldn’t understand why, hour by hour, Mummy and Daddy would hold me in the hospital, in the waiting rooms filled with bald heads, feeding tubes, melted faces. They told me that they were trying to fix me, to save me.
But everyone already knew how to do that. The faintly familiar faces would smile brightly at Mum in the supermarket. They assured me that I was going to be fine, just fine, never looking at me. Never letting their eyes meet my wilting fifteen year old wings.
Their grandmother, cousin, friend, and cat had this ‘thing’. There is always hope! I just needed to drink organic olive leaves, get foot rubs, think positively. Will my body into remission. They would pray, of course. They were always praying, never speaking to me. Mummy and I laughed at the bitterness of it all.
The world was certain of my cure, of my hope, of the miracle which was just around the corner, as long as I continued to have my feet rubbed, drink their olive leafs. Soon, I would be saved.
They just knew it.
Three weeks ago, my surgeon met his eyes with mine. He told me he was sorry. He was sorry for the shitty hand I had been dealt.
As I sat in his room, staring at the scars beneath my woollen knit pullover, my vanilla perfume, my arched brows, I couldn’t help but think.
Every week, this man, whose apology still hung in the air, delivers dead little babies.
And I couldn’t help but think that, maybe I had things wrong all along.
Maybe the world didn’t know something about me.
Maybe I knew something about them.
And you know, I think that frightens you all, just a little.
The most beautiful girl in the world once told me that the only person who will ever have the answer to this is me.
I am under no illusions. I know that there is no cure for me. I know that there likely never will be. I know that the chances of me going into remission are a mere breath of chance. I know that this is unlikely to change.
And I also know that this is ok.
People, they tell me not to think like this. They scream negativity, and thrust hope into my arms. Mummy and Daddy smile, shaken, and never say a word. They know that I have spoken the truth. They just wish it wasn’t the truth for their baby girl. My brothers pretend that they never heard me. The doctors merely nod, and pretend to be busy with another file, another test.
But the thing is, I don’t need to be cured. And I can’t help but wonder why everyone is so scared.
We all get sick. We all fail, twist, and blacken with disease. And then. We die.
Not one of us is above our own morbidity, our own mortality.
The world feeds off fear. They feed off stories like my own. For, if they look at me, if they look at my friends, they can see what happened. They can see where things went wrong. And they can make sure it doesn’t happen to them.
But, you don’t need to be scared. You don’t need to look at me, and thank your lucky stars, pray to your God above for my salvation. Because being broken is the most beautiful thing in the world.
If only you would stop trying to make sense of it. If only you would stop trying to work out how to fix me. And then you would realise that I never asked to be fixed. That I never needed to be fixed.
Just love me, and be with me. The rest doesn’t matter.
I don’t like the taste of blood. But it’s what I taste each morning now. The splatter of copper into the cream of the basin, perfectly at home amongst the makeup brushes and sprigs of lavender. My body can no longer maintain it’s skin like yours. But that’s ok. Because I kiss beautifully. And one day,he will kiss me, and he will not taste my blood. He will just know that I am alive.
And he will fall in love with me all over again.
Everyday, I shower under my very own waterfall. I cannot stand, for my legs are much too weak in the evenings. But I curl on the tiles, a mermaid in her sea. I close my lashes, and look towards the stream of water. Slowly, carefully, the bubbles form in my hair, a ginger effort, and the wet locks curl around the jutted edges of my collarbone. I feel my organs aching. I feel the droplets hold me, my evening company.
In our sea of tiles, we smile, and know that it was always meant to be this way.
Mummy tries to cover her gasps, but she is much too late. I rush to the mirror. I see that my face is painted in milk. I brush my fingertips beneath my bottom lid, and see that this is not black eyeshadow. I see that it is the coal of disease. And I laugh. I throw my head back, and I laugh. I am a raccoon.
The cutest racoon that you ever did see.
Baby brothers ride the motorbikes. I jostle for my turn. Everyone is convinced that this is the worst idea possible. So I run. I grab the helmet, I sprint for the bike. And I grin as I ride past their horrified faces. They scream.
Not too fast. Be careful. It will make you sick.
And it does make me sick. For the rest of the night, I am sleeping beauty, trapped on her coffin lounge. And for the rest of the night, I remember how wide I smiled. I remember how the sky kissed my cheeks, and whispered to me.
Go faster. You only live once.
Audrey Hepburn has come to stay. If you were to look into our garden, you would have seen her. A silk, cherry dress floated around her lily legs, finishing a kiss above the knee. She was rested in the deckchair, laughing. You should have heard her laugh. The magpie was chasing Daddy. The border Collie was chasing the Magpie. The kitten was chasing the Border Collie. Audrey wasn’t chasing anyone. For she couldn’t. Instead, she watched the rest of the world, and smiled.
She wore the widest of floppy hats, the same shade as her napping legs. If you were to lift it’s edges, you would have seen me. You would have seen that I made a beautiful Audrey.
Do you see now? Do you see that I never needed to be cured?
This is my life, in all it’s horror and beauty. A 19 year old, broken glamazon. You see, it’s ok. It’s ok to be like me. Some of us were always meant to be broken. Some of us were never meant to be fixed. Because we are beautifully broken. There are always going to be bullets and butterflies. As long as you know that one can kiss the other one better.
So tonight, when you pray for me, don’t pray that they will find my cure. Don’t pray that I will get my miracle. Don’t pray that I become like you.
Instead, pray that you will love me. Pray that you will spend your lazy Sundays with me, under the climbing tree. Pray that you will think my scars are beautiful. Pray that you will send the truths of your soul to me, and know that I will return the favour. Pray that she will be proud of me for knowing that I always had the answers all along. Pray that she will wait for me in heaven.
But most of all, pray that I am always beautifully broken.