If we looked out the window.

On the way to the hospital the other day, while my mother drove our little red box car around the city, as we drove past the green wheelie bins with orange graffiti on the sides, or the old fashioned yellow and green trams, I sat silently, and watched all the different people go by, out of my little smudged window. I sat there, and as all the people walked past, I wondered, what was their story?

The pretty girl in the polka dot dress,  riding on her push bike. What was her story?

The boy with the big head phones hanging around his neck, and the gold coloured glasses framing his eyes. What was his story?

The lady in the chemist with the grey feather duster. What was her story?

The little boy at the hospital, with his arm in plaster, carrying the buzz light year balloon. What was  his story?

The work man, carrying the big ladder across the road. What was his story?

The petite blonde girl, with the sunglasses too big for her dainty little face. What was her story?

The old lady, that walked down the street with a slight, unsteady wobble. What was her story?

I sat there, and I wondered. What had they been through? What was there life like? Did they have a nice 3 bedroom house on a nice cosy street, or did they live on the street? What had they seen in their journeys? What were their friends like? Their family?

Maybe I think too much. Or maybe everyone around me just doesn’t think enough. Everyone is always so wrapped up in their own lives, that they never stop to see what anyone else is doing. Maybe if we just stopped and took five minutes out of our day, to ask someone how they were doing, we could stop that little blonde girl from going home to her abusive boyfriend, or the lady from the chemist from going home and commiting suicide.

Maybe, if we just looked out of our window more often.

Advertisements

All my love, always.

I have made friends, and I have lost friends. I am no stranger to the feeling of loss. A lot of people I once counted as a friend, have decided I am too hard to be friends with. Too high maintenance, because I cannot do what their other friends can do. I can’t spend all day walking around the shopping centres, I can’t go to concerts and go crazy in the never ending mosh pits. I can’t go to parties and get blind drunk and be stupid. I spend a lot of time in hospital, and some people just can’t accept that. I get tired, and I get sick. I am sick.

But, there are a few people who have stayed. Who have been there for me no matter what.

To the friends who have stood by my side through my darkest days, thank you. To the friends who let me spill out my fears and hopes for hours on end and never complain that they are bored once, thank you. To the friends who tell me I need to stop being so stubborn and get myself better when I’m being silly and not wanting a procedure done, thank you.

67gyuhbj

To the friends who hold my hand while the doctor is changing my dressings, thank you. To the friends who let me cry on their shoulder, and wipe my tears from my puffy eyes, thank you. To the friends who have stood by my side through the hospital trips, the pain and the sickness, thank you. To the friends who tell me I’m beautiful when I look like a mess, thank you.

large (13)

To the friends who aren’t ashamed to be seen in public with the ‘weird skinny girl‘, thank you. To the friends who have stood by my side through the days when my broken body refuses to leave my warm bed, thank you. I know I am a pain to be around sometimes, but you all have no idea how much you all mean to me, and I will never be able to repay the total adoration I have for you. You keep me going when I want to give up and let my body win. So, thank you. You have all my love, always.

We are broken, but we are beautiful.

One thing that I have learned from being sick, is that everyone is beautiful. Even if your velvety blonde hair is falling out from chemotherapy that is poisoning your insides, or your undeveloped stomach is bloated from all the medication that keeps your body alive, you are beautiful. We are broken, but we are beautiful. I have learned that society does not accept sick people. There are no models in wheelchairs, there are no bald humans on runways.

I have been told countless times that the way that I look, is not what is expected. I am not what is expected. Sure, I am not completely happy with the way my broken body looks, but I cannot change anything, so why should I be ugly in everyone elses eyes? I’m simply different. Yet, if you are different, you are not what society thinks is beautiful.

large

But, you are what I think is beautiful. Your body may be broken and bruised on the outside, but when you are sick and see what your fellow sick friends go though every day, you learn to see through that, you learn to see inside.

283125_159200124155831_5290066_n_large

Inside, where our bodies are still broken and bruised and failing us on every level, but on the true inside, inside your soul, you are beautiful. I do not care what the scales say you are, I say, that you are beautiful.

large (1)

It does not matter to me what you look like, if you are covered in pink lines that tell the story of a squeamish, but life saving surgery, or have cannulas and lines in every accessible vein. That is simply the way that you are.

To me, you are beautiful.

Bikes and biscuits.

Ever since I was a  little girl, the word ‘father‘ has always unhinged me. When friends would ask me why I never saw him, I’d just reply with ‘I don’t know’. Because the truth is, I don’t know. I don’t know why my father has chosen not to see me. I don’t even know where he lives. I can’t control his mystifying actions, but I’d sure as hell like to know how you can have a child and not want to be in their life. Is it because I’m sick? Is he ashamed of me? Why is it he can see my perfectly healthy older sister, but not me? What have I done thats so bad that he has chosen not to make an effort to even call me and see how I am? Who really knows? But guess what? You are the one missing out.


I’m greatful that I have amazing grandparents though. My pop is more of a father to me than my real, biological father. My pop was the one who spent hours of his own time teaching me to ride a push bike. I remember him taking me down to the local bike store, and letting me chose one to take home. Out of all the pink princess bikes and other girly ones to chose from, I chose an army coloured one. Why? I liked it I guess. Sure, the first time I rode by myself I fell straight into a prickle bush, but that didn’t matter, because I was spending time with my Pop.

I used to love building things out of wood and rusty nails in their old backyard. There was nothing more I loved doing, except for baking with my gorgeous Nan. Spending the afternoon cooking up all sorts of delicious goodies was something I adored. As the smell of cookies and cakes filled the kitchen, I used to be so proud of the things me and my Nanny would make.

When I had my life saving spinal surgery in July of 2009, my Nan flew all the way down to my beautiful home town of Melbourne from where she was living at the time in Queensland, to help my Mother take care of me. Night and day, my Mother and Nan would spend hours on end feeding me, rolling me from side to side to stop my delicate, recovering body from getting painful bedsores, and sitting beside my hospital bed holding my tiny, weak hand so I was never lonely. Though I don’t remember much of my time in hospital recovering, the time I do remember is of seeing my Mum and Nans proud, tear stained faces light up as I took my first insecure, faltering steps as a brand new Jes. I’m not ashamed of my scar. It tells the story of how one doctor and his scapel, saved my life. And for that, I am thankful.

I cannot imagine.

I cannot imagine what it must be like, to be a beautiful 20 year old with a new born child, with the whole world at her feet and a head full of wild and wonderful dreams, to then be told that her perfect new born child would die before her 1st birthday. I cannot imagine the pain on her face, the terror in her pretty brown eyes. I cannot imagine, the total fear in her heart, the utter outrage at the cruel dark world, as doctors told her that her childs days were limited. I cannot imagine the gut wrenching pain in her stomach as the doctors told her that her child would never walk, the puffy swolleness of her eyes after hours on end of crying, thinking she would never get to hear her childs voice call out ‘mummy‘. I cannot imagine, what it is like to be my mother. Yes, this is the reality my mother faced, when I was too little to fight my own battles, so she had to fight them for me. I was just a tiny bubble, just waiting for my body to burst.

I was just a child, a tiny blip on the radar of life. I didn’t know I was meant to die. I didn’t know I had a certain amount of days I was meant to live. How could I? I was just a child.

I cannot imagine my mothers fear waking up everyday as the time neared my 1st birthday. The distress of thinking everyday could be my last. I was just a child. I had hardly lived. Surely the doctors had got it wrong? There was no way her child could be dying. Surely there was a mistake. I had just been born, and yet my mother was already planning my funeral. Everyday, she must of thought ‘Is this it?’ ‘Is this the day my child will be taken from me?’ I cannot imagine. But my mother can. She doesn’t need to imagine. She knows.

BD4871-001

And yet, 17 years later, here I am. Against all odds, I’m still here. Living on borrowed time. The doctors had made a mistake. I’m not meant to be here. Have I stolen this time from someone else? Has someones life been cut short, so that I could live? I don’t know. But I’m glad I’m still here. I want to live. I want to feel the sunshine on my pale, gaunt face. I want to feel the flutter of a butterflies wings against my fragile warm hands. I wasn’t meant to live, but I am. No one can imagine the guilt that I feel, for putting my loved ones through all this, especially my mother. Though I know it is not my fault that I was born this way, the constant guilt sometimes staggers me, it pains me straight into the centre of my soul. But I won’t let my guilt get in the way of living.

gygyug

After all, if I’ve been given a second chance at living, I will unleash the wild, raging beast inside of me that so desperately wants to live, and fight as hard as I possibly can.

Unicorns and fairies

Being sick isn’t all bad. Sure, I would love a life without the painful needles that leave big green and purple bruises on my scrawny pale arms, but I could never give up the beautiful people I have met through being sick. The countless wonderful nurses, who spend every day away from their own families looking after yours, the doctors that save peoples lives everyday, and the amazing friends who I would give up my own life for, if it meant that they could keep theirs. The bond that we all share is something so rare, that most people will go their whole lives without ever experiencing.

Recently, I was away on a camp full of sick teenagers have become like my second family. Some I’d never met before, yet everyone seemed like they had known each other their whole lives. Finally, I had people to share my battle scars with, who never judged, because they too had their own pictures imprinted in their skin, that told the story of what they had been through. Who understood what I meant when I said hospital food will never get rated with 5 stars. I guess having a mutual understanding of what each of us is going through, though most very different from others, made it so that it didn’t matter.

 

Everyone was sick. Everyone had their own raging battle, their own demons they had to fight. Yet, everyone pulled together to help one another. I did things I never dreamed I’d be able to do. People in wheelchairs were playing T-ball. People who can’t lift their arms were playing archery. Everyone knew what it was like to struggle, and everyone helped someone who needed it. It was truely a magical thing. I guess unless you were there, you wouldn’t quite get what I mean when I say magical. I don’t mean magical in the ‘unicorns and fairies’ kind of way. I mean in an emotional way. You could’nt see it, but you could feel it. The feeling of being around people who understood.

Call me crazy, but theres no one in the world that I can think of, that I’d rather spend most of my time with, than my cat. She is the closest thing I can possibly have right now that could resemble a child. Cats are usually pretty independent creatures. But not my Evee. she’s my pretty little shadow. I can’t go to the toilet without her sitting at my feet, watching that I’m okay.

550504_10150833956688861_2024945254_n

I can’t go into my room without her jumping at the door handle to let her in. If I sit on the back decking of my cosy little house, she sits and loudly meows at the piece of glass that seperates her from curling up on my warm lap. She even lets me carry her around like a baby. And even though she drives me insane with her naughty little habits, like pulling the washing off the clothes horse, as I just watched her do while I sit here on the wooden chair writing this, I wouldn’t give her up for anything, not even if I could be cured of my illness. Because, through my darkest of days, she is the thing that keeps me going.

549424_10150795215963861_1782878128_nte

Of course, don’t get me wrong, my friends and family are my tower of strength, but there’s something about the fact that she can’t talk back, that I find comfort in. I can tell her my biggest fears, I can cry into her sort warm fur, and yet she never judges. She never screws her nose up at my ugly little collar bones that jut out from the top of my shirt, or the little sticks that poke out from the bottom of my shirt sleeves , like the girls with their perfect blonde locks at the local shopping centre. She lays beside me every night, and I know that if I wake up in the middle of the night in agony, even though she is just a cat and powerless to do anything to help me, at least I’m not alone.

Yes, I know I’m crazy.

Image

But everytime I look at this perfect pretty little face, I can’t help but want to spend every second of what ever time  I have left, being around it. Is that really so crazy?