“I do my thing and you do yours. I am not in this world to live up to your expectations, and you are not in this world to live up to mine. You are you and I am I, and if by chance we find eachother, then it is beautiful. If not, it can’t be helped”
For the rest of the world, it was just another night. Another breath spent locked between sheets of plaster. They would argue over whose turn it was to wet their hands with soapy suds. They would eat together, and talk of their day would bubble across the oak. They would watch tv, they might even read a book. And then they would go to bed. And it would just be another night.
But not for us. We were going to heaven.
I was so sure that this is how things would be. Eleven candles were lit by a shaky hand. My nailpolish was beginning to chip. Cushions of all shapes and nationalities were scattered far and wide across the tiles, our very own, artificial nest. The television was hushed, the blinds were drawn, the world was nowhere to be seen. And I waited in our heaven, for the bald moon of his head to walk in from another day at work, and join me. We would go together.
In theory, it was beautiful. Everything we expected, with the familiarity and softness of a kiss. Anyone else would have thought we were mad. Or maybe just sad. But we weren’t anyone else. They couldn’t possibly understand.
They never had to fight.
One night, the tears dribbled from my lashes, and from his lashes that remained. A beautiful, wet dance of desperation. We had not fought, nor did we hurt. We were not scared, nor brave. We just wanted to know who was going to get there first.
So that night, while the rest of the world lived in ignorant bliss, him and I, we went to heaven. This way, we would test it out together. We could see if it was everything we expected, and more. We would love and talk, laugh and eat. Together we would sit in our heaven, and know that we were ready.
The problem with expecting is exactly that; expecting. It’s never quite how you imagined. The cushions slipped, and the floor was cold. My bones ached against the tiles, and his plate couldn’t balance on his crossed legs. The candles went to sleep, and in the absence of their flicker, we were left to hold the truth; A bald man and a pale girl, sitting in the dark.
Our expectations stopped us getting to heaven.
Each day, it becomes more difficult to imagine that there was a time before this. Don’t pretend that you don’t know what I am talking about. There is always a before and after. Chances are, you didn’t know me before. Before my nights were pierced with screams and bullets in the shape of cells. A time before I became me.
But I promise you, it wasn’t always like this. Or at least, this is what I like to think.
There was once a time when I was a different person. I guess I was like you. When disease didn’t soak my bones, and death didn’t threaten from the shadows.
God I was beautiful. But you mustn’t think I am vain; for this is all I have left. The knowledge that there was once a time when I was someone that you wanted to be. More than 19 years ago, my parents were first told.
You are expecting
I wonder how the doctor knew, that they were expecting. That they were expecting something beautiful and rare, bright and brilliant. I wonder, as her belly swelled with each passing month, if Mummy and Daddy knew to expect me.
I exceeded everyone’s expectations, of course. Every tragedy begins brilliantly. I left the others in the wake of my milestones. I didn’t walk; I flew. The years passed in a blur of fluency and articulation. One morning, at eight years old, I woke up and spelled derogatory, without so much as a blink. Everyone was amazed. My pixie shoulders merely shrugged, for the semantics eluded me. I would learn it’s meaning in time.
And for years, this was me. Gifted and eccentric. A world of wonder, resting beneath high cheekbones and blue eyes. I was going to be as great as their wildest dreams. And soon I found that they were not dreams, but rather expectations. The Private High School clawed at me, desperate for all that I was certain to achieve. They shook my Daddy’s hand.
We are expecting great things of her
I can’t help but wonder if the school knew,just twelve months later, how different things were going to be, how different I was going to be, would they still have shaken Daddy’s hand? Or would they have washed their hands clean of me, led me towards the door, and wished me better luck in the next life time.
Expect the worst.
This is what I became. The modelling, the stethoscope curled round my breast, the tea stained awards, the formals and the kisses with boys. They were all taken in one fell swoop of horror. Infinite dreams killed with one disease. Mummy and Daddy still gently prodded, school work calling for completion. I looked at the special bed in which I now lie, the medications lining what was left of my stomach. The chance which I didn’t have. I told them that there was no point.
They knew what I meant.
But they still gave me my Morphine, fed the potato into my bloodied lips, and helped me hold the pen so that I could scribble on the homework that was due six months ago.
They never stopped believing in my ability to exceed expectations.
Expect the unexpected.
These are the years between my death bed and my future unknown. Three steps forward, five steps back, and another jump. I never thought this would be quite so literal, until I learnt to walk again at fifteen. Mummy and Daddy are sad that we don’t have videos of it, ‘to see how far you have come’. But I sigh with relief. No one should have to come that far.
Disease slowed, and new disease spread. There were hiccups and vomit. The blood splattered from my mouth between Maths and Psychology, and my seat lay empty for weeks at a time. The bullies dragged me to the edge, and waited for me to jump. The doctors continued to use their medicines to pull me back. No one ever asked me what one I wanted. It never occurred to anyone that I never wanted to be on a bridge.
There were dates, even a boyfriend. Kisses and arguments. Parties and hospitalizations were given in equal doses. The tablets rattled around in the glovebox of my very first car. I kept the vomit bags under the seat; that way, no one could see them. No-one could see the truth.
I was brave stupid enough to expect remission. For, I had earnt it, and surely that was enough. Nearly dying doesn’t completely stop you from being naive. I was still only a teenager. Sick or not, the world remains a great injustice.
Someone once told me not to expect anything. That way, they said pointedly, everything exceeds your expectations, and nothing disappoints you.
And I tried, God knows I did. But our heart anticipates just as much as our mind.
We expect the best. We are certain that, if we anticipate, if we plan for all that we are certain, our dreams will be within our grasp. We will be greater than our richest dreams, and smiles will keep in our pockets, for it will be exactly as we imagined.
We expect the worst. We will not hurt, nor will we be disappointed, for we knew this was coming. Our throat already made way for the sobs which would scratch it raw, and the tears would never melt for they knew this was to be, and they have become strong in this knowledge.
The truth is, we will always expect. Even him. Even me. Even us.
He expects it will come back. The odds are in his favour. There is but a breath of chance that it will next make itself at home in his lungs. But, still he waits. ‘It always comes back, Jess. It always comes back’.
And he expects me to disagree, to hush away such words of jeopardy, and whisper words of comfort. But he made me promise I would never lie. So I don’t.
Instead I agree. I know just as well as he that it nearly always returns. But I tell him that when it does come back, expect me to be there. Expect me to hold his hand as he fights once more.
I don’t expect to go into remission. I don’t expect that it will ever stop hurting. He doesn’t tell me that Science is improving every day. That a cure could be just around the corner. He wants to, this I know. I see the declarations being clawed back, his own desperation for my cure as loud as his love. But he promised me that he would always tell the truth.
So he holds me, as he tells me that is how it will always likely be. He whispers that there is no cure, and there is not likely to be one. He reminds me that my body is without the knowledge to heal itself, and I will be forced to continue to fight.
And he tells me to expect him there at every spot of blood and scream in the night.
Me, him, you, us. We all have our hopes of how things will be, and how they will not. The hurts that we will weep and the joys we will kiss.
I began writing this, to remind myself not to expect anything.
But without expectations, we cannot hope, and we cannot hurt. We cannot dream, and we cannot fail. The tears will rest empty, and the giggles will ring hollow.
The truth is; I expect everything.
I expect I will not go into remission, and I expect that his will come back one day. I expect that I will be an incredible nurse, and that he will think I am beautiful in my scrubs. I expect that one day, I will sign our letters off with love, and he will whisper it under the sheets. I expect that we will never own a St Bernard, and that he will never understand how my clothes scatter so far and wide across his bedroom floor. I expect that he will soon learn that I think his fuzz is beautiful, and I expect that one day I will think my scars are pretty.
A few nights ago, we tried to go to heaven together. We were scared and young and sick. We simply wanted to know if it was just as we dreamed.
But now we both know that it doesn’t matter.
Because, in the mean time. I expect that he will be beautiful to me, and me to him. He expects nothing and everything of me, and I the same of him. We expect that we will live and die, and there will be hurt and love in-between our first and final chapter.
But most of all, I expect that, together, we will survive more beautifully than before.