Memories of a fight


This is something which I wrote around 2 years ago, at 17 years old. It is not eloquent, not particularly creative. I have debated for a long time whether to post this or not, as I take a lot of pride in my writing, and feel this is written poorly. However, it is brutally honest and gives some insight into two of the most difficult months of my life; When I was in the Royal Childrens Hospital, relearning all which you take for granted. How to walk. How to dress myself. How to feed myself.

This piece is not beautiful. But it is honest. It is real. I am only sharing this because, while I am now sick but stable, being dangerously unwell continues to be a reality for the majority of my friends. This is ‘Sick’, at it’s ugliest. If anything, I hope that after reading, you will have a little more understanding as to what life is like as a teenager when you are Seriously Ill.

Love and hope to all,

Jess xx

“You know how when you were a little kid and you believed in fairy tales, that fantasy of what your life would be, white dress, prince charming who would carry you away to a castle on a hill. You would lie in bed at night and close your eyes and you had complete and utter faith. Santa Claus, the Tooth Fairy, Prince Charming, they were so close you could taste them, but eventually you grow up, one day you open your eyes and the fairy tale disappears. Most people turn to the things and people they can trust. But the thing is it’s hard to let go of that fairy tale entirely cause almost everyone has that smallest bit of hope, of faith, that one day they will open their eyes and it will come true.”

Mimi Schmir

I am a fairytale. I am a miracle. I am here, when I shouldn’t be. You see, in three days, it will be two years. Two years since I was fifteen years old, and dying. It’s funny, to know you are dying. Of course, we are all dying. I was simply in the express lane. The ten items or less checkout. It was my fate.  I didn’t think about it all that often. It wasn’t a thought. More of a feeling. Feeling my body growing weary. Sometimes I would think. I would go to sleep, and I would wonder, just before I plunged into darkness, if I would wake up. I always woke up. But we all knew that if nothing changed, it wouldn’t be long. A few weeks. A few months. I no longer cared. For you see, no one can continue to live how I was. Every night, as I lay in my bed, I would pray. Not to God, necessarily. Rather, the universe. I would pray for it to take me. I was ready. And each morning, when I woke up, I would sob.

Because I had woken.

On the eighteenth of February, 2007, I was admitted to the Royal Children’s Hospital for monitoring. I leave two months later. People say, well, it’s not that long. But, when you are fighting, time is irrelevant. Seconds can last hours, hours can last years. It’s not the measuring of time itself. It’s what happens in that time. A lot can change in a short space of time, for good or bad.

Planes can crash into buildings. A troubled student can open fire on their classmates. A child is born.  Lives can be taken. Lives can be changed. Lives can be saved. The world can smash into a million pieces.

Or it can be carefully glued back together.

I am a fairytale. I survived. And I don’t know why. Rehab for me was the most horrendous and amazing experience of my life. It nearly killed me.  And yet it saved my life. I cannot hide from that any longer. It’s time to face my fairytale, full of big bad wolfs and prince charmings. These are some of my memories. It is poorly written. They are not everything. And I will continue to write. Until I can cry no more. You do not have to read, nor comment. I simply need to face this.

Mum kisses me on the cheek. ‘I will see you tomorrow darling. I promise I will be here.”

It is my first night in the hospital. “It will be ok” I smile. Mum looks at my starving body, eating itself in front of her. The machines, the wheelchair. She smiles back. We share no more words.

But we both know it won’t be.

……………………………………………….

Its six am. He starts, right on cue. My beautiful roommate J. He is seventeen. Cute. I love his blonde streaks. He begins to cough. And cough. And cough. And then he vomits. Just as he has every single day. This is our routine. We say little to one another. Instead we listen to one another’s bodies fight. I go home. J doesn’t.

Every night I think of the beautiful boy I listened to slowly cough to death.

……………………………………………………

We have just had a meeting. They tell me I need a naso gastric tube. I refuse. They say it will help me. I promise I will try and gain. Dad walks back from the meeting to see tears streaming down my cheeks. Its fish for lunch. I can’t eat it. Dad eats my fish for me. Next time you have to do it he whispers, the lump in his throat. And he holds me as I weep.

……………………………………………………….

Mum carries me to the bath. She removes my clothes, one article at a time. I am embarrassed. “I won’t look” she promises. Her eyes stay on my toes the entire time. She slowly washes me, as I lay limp in the bath. I find it funny that I had to learn what the word dignity meant by losing it.

……………………………………………………………..

It is my first physio session. Mum comes with me. They try to place me on the exercise bike. Just a few mere years ago, I spent my summers riding my bike with Jake. We would race one another around the block, then lay on the grass, out of breath. And smile in the sun.

My foot cannot push the pedal.

……………………………………………………………..

S wants to come and see me. She is not my friend. She is my friend’s friend. But why I ask? She hates me. It is then I realise what I have become. I am the sick girl that people want to visit. I am the one they can tell others they visited. I tell her to go fuck herself. And I don’t feel bad.

  Not even a tiny bit

……………………………………………………………

Look Mum and Dad! Look!! I can walk Mummy! I can walk Daddy!! I lurch through the corridors. I look like a drunk. I am a mess. A lady stops me in the elevator. You’re doing a good job she smiles.  And I could not be prouder.

I float, for the rest of the day.

…………………………………………………………….

I lay in the school room. C has literally carried me into my chair. I carefully flip through magazines. Each time I turn the page, my body screams. But I don’t care. I see some cherry blossoms. “Those. I am going to paint those”.  They are beautiful. They are alive.

They are everything I am not.

……………………………………………………..

I meet L. She is carefully drawing. I see her tube. I want to tell her she has forgotten to wear her legs today. There is nothing of her. We smile. We chat. I ask her if she has an Eating Disorder. “Malnutrition” she tells me. Later, the best of friends, we laugh at her words. My bum soon fits the grooves of the edge of her  bed. Hers on mine. Our worlds are falling apart around us.

So we hold hands and try to stop one another from falling too.

…………………………………………………..

It is Good Friday Appeal. Two Essendon Bombers come into my room. “I hear you are a fan” they grin. I tell them I do not know their names. I simply go for them. I somehow stand out of my wheelchair to pose for photos with them. And I vow to fight, to make it, just so I can watch them play. If I were to see them now, I could tell them their names.

I could tell them they are everything.

……………………………………………………….

I go to another hospital. I have to have tests on my heart. They inject adrenaline into it. When I come back, Toadie is there. He signs things for me. He offers to have photos with me. Instead I cry.

I just want to die.

……………………………………………………….

Dad takes me for a walk. Every single day. The cafeteria. The garden. The park around the hospital if I am well enough. The family resource centre.  He wheels me past other patients, their families. One day, I see a little girl in the cafeteria. She is four. She is wearing a pink nightie. She is bald, all but for bits of fuzz, long blonde wisps hanging down her back. I want to cut them off. Dad and her Dad nod at one another. I don’t know why. It doesn’t occur to me, they are the same.

Two Dads. Trying to save their little blonde girls.

…………………………………………………………….

I have a collection. A collection of little plastic drug cups. I stack them. I wonder if they will reach the roof. All day. Every day. I get those little drug cups. In those little drug cups, are little tablets. I never think of what these little tablets and their little colours are doing to me.

It’s easier not to.

…………………………………………………………

Everyday Mum or Dad wheels me down to the McDonalds downstairs. It is safe. It is full of sick children and their parents. One day I see some teenage girls. They have stopped in, on their walk home from school. They are not sick. I know this because they stare at me. They stare at me and smile with pitying eyes. I defensively play with my hospital armband. I am sick. You can’t hurt me.

But they do.

…………………………………………………………

Treatment is all day, every day. It doesn’t stop. And yet, I don’t complain. I don’t cry. Everyone does that for me. On the first night, before I drift to sleep I tell myself the truth. They can’t afford for you to cry. They can’t afford for you to weep.They can’t afford for you to lose. You have to win.

Just keep fighting. Just keep fighting. Just keep fighting.

………………………………………………………………………..

Mum and Dad are taking me on leave for a few hours. To the Victorian Markets. We wheel through the Royal Children’s Car park. I think it is the most tragic car park in the world. As Dad wheels me, and mum walks beside, I see a Mum and Dad. They are screaming, supporting one another. Dad keeps pushing me. Mum keeps walking besides me. I look away.

And we all try to pretend that that isn’t our reality.

…………………………………………………………………..

This is all I can write for now. It is just bits and pieces. Bits of a nightmare. Pieces of a fairytale.

 Jess, 17 years old.

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2 thoughts on “Memories of a fight

  1. I started to write this as feedback to your YouTube video, but I couldn’t possibly fit what I needed to say into the limited number of characters available.
    I’ve read your blog. I love it. It makes me cry and feel so many things I’ve bottled up and hidden inside of me. Memories I’ve suppressed because surely they can’t be real, that girl can’t have been me. Surely no one should have to suffer so much. But it must be true, after all there are many others out there who have suffered much more than me. I’ve never really told anyone what the last 10 years has been like for me. Some know bits and pieces, and some, like my mum, know more because they witnessed it first hand.
    Thank you for affecting my life in such a positive way. I hope you continue to write, you inspire me and undoubtedly many others.

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