July 6th 2009.

Look at her. Look at the brown hair sprawled out on the crisp white pillow case, look at her fragile broken body 
layed out on the hospital bed, look at her pale arms making love with the needles and lines that pump drugs into her veins, drugs that are slowly putting her in a deep lifeless comatose.

Her big brown eyes flutter up to look at the face staring down at her; her mother. A tear escapes her eyelashes and rolls down her colourless cheek.

“Is this the last time that I’ll see my mothers face? Is this the last time that I’ll be able to tell my mother that I love her?

I don’t know how to do this..”

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And then she slips into the darkness. Her body will never be the same after this.
There is no going back.

The date was 6th of July, 2009. I was 15 years old.

You see, that girl was me.  I was the girl on the hospital bed, about to have the operation that would either save, or end my life.

And fuck, was I scared.

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During a routine physiotherapy procedure, it was first noticed. My spine was not the straight line down my back like it should have been, instead it had turned into a slithering snake, curling and hissing its way down my body. No one had ever noticed it before. Had it always been there? Or was this a new dot to add the list that enslaved my life. Another curve ball life had thrown at me. I was later crushingly diagnosed with scoliosis.

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When viewed from the rear, the spine usually appears perfectly straight. Scoliosis is a lateral (side-to-side) curve in the spine, usually combined with a rotation of the vertebrae. While a small degree of lateral curvature does not cause any medical problems, larger curves can cause postural imbalance and lead to muscle fatigue and pain. More severe scoliosis can interfere with breathing and lead to arthritis of the spine. 
Approximately 10% of all adolescents have some degree of scoliosis, though fewer than 1% have curves which require medical attention beyond monitoring. Scoliosis is found in both boys and girls, but a girl’s spinal curve is much more likely to progress than a boy’s. Girls require scoliosis treatment about five times as often. The reason for these differences is not known.
(http://www.answers.com/topic/scoliosis)

 

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Many months of doctors poking and prodding and ordering x-rays and painful tests followed. The doctors were hoping that I would stop growing soon, therefore hopefully so too would the curve. Careful monitoring and keeping all of our fingers and toes crossed proved unsuccessful, and at 65 degrees and with a lung crushed against my twisted rib cage, there was not much time left before my lungs packed up and failed me, the decision was made to attempt an operation called a ‘Spinal Fusion’. 

 

There are several approaches to scoliosis surgery, but all use modern instrumentation systems in which hooks and screws are applied to the spine to anchor long rods. The rods are then used to reduce and hold the spine while bone that is added fuses together with existing bone. 
Once the bone fuses, the spine does not move and the curve cannot progress. The rods are used as a temporary splint to hold the spine in place while the bone fuses together, and after the spine is fused, the bone (not the rods) holds the spine in place.
(http://www.spine-health.com/conditions/scoliosis/scoliosis-surgery

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Of course, every surgery comes with its risks, but the doctors warned my family that there was a huge chance that I would not wake up from this dark nightmare. Once I was under, I may not ever open my eyes again. I could thank my disintegrated lungs and faltering heart for that. Normally this would be a pretty text-book operation, but when you’re already in lung failure and have a leaky heart valve, routine surgery becomes a lot more life threatening. The operation that was meant to save my life, would most likely end my life.

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But, what is life without risks? I was not going to give up without a fight, and somehow, I won that fight.
After what hat seemed like a lifetime, I finally opened my eyes and saw the exhausted faces of my Mother and Grandmother. I had made it through the surgery, which wasn’t without its complications, but I was alive.

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The next few weeks were a blur. I can’t recall most of the time I spent in hospital, days rolled into each other and I didn’t understand what was going on most of the time. Nothing passed through my eyes, I relied only on my hearing to try to make sense of what was going on around me. I was log rolled every few hours, to help stop agonizing bed sores, I had drips and lines thrust through every accessible spot on my broken body.
I was fed through a tube that snaked down my nose and into my stomach, I was too weak to even hold a spoon. Not able to leave my bed to even go to the toilet, bed pans became my best friend. Doctors and nurses buzzed in and out of my hospital room, and my Mother and Grandmother took rotating shifts at my bed side, so I was never alone.

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Time seemed to be irrelevant, like it didn’t exist, not in the way it usually did.
 Once I was strong enough, it was time to relearn how to how to walk again, how to dress, how to live. Finally, after two exhausting weeks in hospital, I was allowed home to begin my journey of recovery. 3 months of wearing a metal back brace any time I was out of the safety of my bed, 6 months of being showered and dressed by my Mother, many dressing changes and infections and countless prescriptions of mind numbing pain killers later, I was finally starting to become my old self again, minus the snake that had made its home in my spine.

And today, here I am, sitting on the floor with a laptop, telling you this story. I cannot bend my spine, and I have a scar the races its way down my back, but this is my story. I am who I am today, because of it. And even though it’s completely changed my life, I am proud of how far I’ve come, and I wouldn’t change it for the world.

 This is my life now.

 

 

 

If tomorrow never came.

Sometimes, knowing I don’t have much time scares me. What will happen to the world, if tomorrow never came?

Would a tiny green caterpillar still transform into a magnificent, bright winged butterfly?

Would the flutter of her wings still tickle the pale, paper-thin skin of your hands?

Would she still only live a few erratic days, before she silently falls out of the sky, as her body shuts down and the light in her eyes fades into darkness?

Would the ocean still stretch as far as your pretty blue eyes could see?

Would the waves still rise and fall and make love with the coarse beige sand?

Would the crabs still scuttle here and there, dodging the claws of the hungry sea birds soaring high above?

Would the wild grey wolves still dance through the forest, and howl at the full moon?

And would the deer still frolic through the lush green undergrowth?

Would the tall, old trees still spread their branches and sway in the chilling, night-time breeze?

When I die, these are the things I will miss.

The world will keep turning, people will keep living, and these things will always be there. And that’s the way it should be.

If tomorrow never comes, 

 The sun will still shine.

The rain will still fall.

And the wind will still blow.

The flowers will still grow.

The children will still laugh.

And the birds will still sing.

Caterpillars will still become butterflies.

Wings will still tickle hands.

And things will still die.

Waves will still crash.

Crabs will still scuttle.

And sea birds will still fly.

Wolves will still howl.

Deer will still frolic.

And the trees will still sway.

People will still kiss, and love, and break hearts.

There will still be pain, and sadness, but there will always be beauty.

Sometimes, beautiful people have to leave, but as long as these things are always here, the world will always be beautiful.

Simple things.

Everyone knows that song by Adele, the one that was played over and over again on the radios and drove you insane. ‘Someone like you’. Yeah, you know the one.

“Sometimes it lasts in love, but sometimes it hurts instead”.

Well, the same could be said for life. Sometimes it lasts, and sometimes it hurts, and it’s broken and sometimes, it’s even lost entirely.

Because no matter how perfectly we apply our makeup, or how carefully we try to hide the scars, we really have no control over life. We have no control over if it will last, or if it will hurt instead.

Have you ever stopped? Really stopped, and watched a freshly blown bubble, dance through the sky? As the sunlight hits the surface, and the colours are thrown around like a rainbow in a blender?

I hadn’t either. Not until I become sick. I guess I’ve always been sick. But not like this. I don’t even have to say anything anymore. Everyone knows. People have become so used to me being like this.

Hurt and broken. 

Life is like playing Russian Roulette. You don’t get a choice between being healthy, or being sick. You don’t get a choice between life or death. But, you do have some choices. Do you spend your whole life working, just to pay the bills and payments to that car you can’t really afford? Or do you take a walk through the park and listen to the little birds lullabies, as their song makes frantic love to your ears?

What about the sweet smell of spring flowers, as their petals stretch out and reach for the skies? Do you stop to really look at them, admire their simple beauty, or do you just keep walking?

Most people would. But not the dying. Simple things are really the most beautiful. Because when your time is up, there is no use in having that expensive car, or high paying job. You wont need it when you’re gone. But the beauty of things such as the flutter of a butterflies wings, that is forever. You can’t erase that.

As you lay broken and dying in that hospital bed, you don’t dream of fast cars and other expensive material items. You dream of things that are beautiful. Things that make you smile with those dehydrated, cracked lips that are too weak to speak anymore. You laugh at the memory of slipping your vegetables under the dinner table to your dog, even though the pain of laughter rips at your stitches. You drag your IV pole along the cold marble floor to the ward kitchen, and grab as many snacks as your fragile arms can possibly hold, and you sit on your bed with your room mate and you laugh at the movie thats been playing over and over for the last two days.

Why? Why not. We are dying. We have no time for the expenives things in life. To us, they don’t matter anymore. Maybe they did once. But those days are but a sweet memory that stings like a canula thrust into the pale skin of your arm.

We need not have these things anymore. The unspoken words become the most needed. A simple smile across the room to the girl in the bed with the feeding tube snaked around her cheek. A hug. A smile. A simple “I’m here”. Thats what matters. Someone understands. Someone knows.

We are dying. I am dying. I want the simple things in life. They are the most beautiful. They are what matter. 

Depression.

Sometimes, I feel as though all the good work I have been doing with my illness, has come undone. Like the stitches have been ripped apart and suddenly everything is flowing out like a nicked vein. I feel as though I’m stuck in a rut and I can’t climb out. Don’t ask me why, or how. Sometimes, it’s just how I feel. My emotions have been spiraling out of control, half of the time I don’t even know what emotion I’m feeling. When people ask me whats wrong, I’m not lying when I say I don’t know. Because I don’t.


Having this illness is a life long sentence, it’s not just going to go away. But lately, I’m just mentally exhausted. All I do is sleep. Even after sleeping all day, the minute I awake, I’m completely exhausted again. The comfort of my bed has become my prison. Most of the time even breathing is exhausting. I can’t stay awake for more then a few hours without wanting to kill something. I often find myself on the verge of tears, for no reason. They dare to escape and show everyone exactly how I’m feeling. I get so frustrated with myself, that I lash out at the people I love, and every little thing that people do makes me irrationally angry. To those that continue to stand by my side though this fight, I am sorry for being this way. Please don’t give up on me.

I wish my heart would beat strong in my chest, and not feel like it is constantly trying to battle it’s way out of my twisted ribcage. I’m sick of feeling out of breath after every few steps, I’m tired of feeling dizzy and weak and helpless. I wish I could breathe in long and deep, and not feel like I’m gasping for air. I’ve stopped noticing when I’m short of breath, until it almost makes my knees buckle and I have to grab onto something so I don’t fall to the shiny, hard floor. I’m sick of medication, and I’m sick of damn hospitals. I’m sick of seeing pain and death in every direction I turn my chocolate brown eyes. But I guess you can’t always get what you want.

At the moment, I’m just a stupid little fawn.

Sometimes I just feel lost. I’m sick of losing the people I love. One day, I woke up and the very person who got me through some of the most horrible days of my life, and for a long time, was my only friend, wasn’t here anymore. The angels flew down and took him away from me. And I’m angry. I’m angry because you left me. I know it’s not your fault, but it doesn’t make losing you any easier. And I’m angry at myself. I never showed you exactly how much you meant to me, and I’m sorry that I never spent enough time with you. I never knew how peaceful a cemetry was, until I came to visit the place that your empty body now resides. And I hope that where ever I go, you are following me, watching over me and still laughing at my stupid antics.

I cannot get rid of this empty feeling. It’s like suddenly I’ve woken up and somethings missing. I just can’t for the life of me work out what that is. I know things will get better. But for now I just have to ride this roller coaster, and see where life takes me. People will probably read this and think I’m going to give up, hurt myself or commit suicide, and of course I have times when I think about those things, I’m sure I’m not the only one. But thinking about those things and acting on them are very different, so just relax, breathe in and out and let me sort my jumble of a life out.

A.

As the shiny black photo album was placed in my hands, I took a breath in and smiled. I was unsure what it would contain, but the curiosity got the better of me, and I lifted the first page to find out. In it, contained photos of someone very close to me, from when they were my age. Flicking through, I came across a photo of a small child, and suddenly I was transfixed. Completely and utterly enchanted by this little girl I had never met. As I gazed at her blonde locks and pretty brown eyes, I felt like I was staring deep into her soul, and as tears pricked at my eyes and threatened to spill over my lashes and run down my soft cheeks, I couln’t bring myself to look away from her.

I will never get the chance to meet her. For her broken body is no longer walking amongst us. She was only four. Four years old, and already dying. Her body was ravaged by cancer, and it was destroying her.

As I kept flicking through, I found more photos of her. Even with her shiny bald head, she was beautiful. Absolutely spellbinding. The chemotherapy had taken away her gorgeous hair, and yet she still smiled. And it was flawless. She wasn’t to know she was dying. She was just a little girl.

Little girls dream about butterflies and rainbows. They don’t dream about cancer and hospital, needles and sickness. But now, she is a rainbow. The most brilliant rainbow, that would take your breath away and leave you speechless.

As I write this now, the tears dare to return. I wonder what it would be like if she was here with me today. She would be the same age as I, if her battle hadn’t been lost. I wonder if we would fight like sisters, or be the best of friends. I wonder if we would have the same bad habits, and if she would still smile like she did. I wonder if she would be in remission, or would she still be fighting every day. We would do each others hair and talk for hours on end. For even though we have had our different battles, we would understand.
Ebony and ivory.
The two of us, taking on the world.

My sister, not through blood, but still all the same. I feel like something has been taken away from me, yet it was never mine to have in the first place. I don’t quite understand this feeling.
I grieve. I grieve for her family and loved ones, and I grieve the hypnotizing brown eyed girl I never got the chance to meet.

Life is painful, but death.. death is beautiful. She will forever stay that beautiful, radiant child, pain free and at peace.

But I will not sob, and I will not weep, for as she watches over us from the big fluffy clouds she now calls home, I know that she will forever be my angel.

Organs.

Organs.

They are the things inside our body, that keep us alive. They pump and filter blood, they fill with oxygen, and they control our every movement and decision. You cannot see them, but they are there.

But what are you meant to do, when the very things that are meant to keep you alive, are what is killing you? Major organs, failing you. Giving up. Packing their bags and leaving.

2 of my major organs, are doing just that. They have decided they have had enough, and want to go on vacation.
My heart, who is meant to keep the life souce flowing, is being stubborn and refuses to work the way it should.


My lungs, who are meant to fill with oxygen and feed my body with the thing it screams for, is being naughty and slowly suffocating me.

And then the other things that make up the miracle of the human body. What about those?
They too, are failing me. My muscles, that are the fibre that holds your insides together, that pulls and pushes your bones to walk and move, are failing. They will not accept the fact they must work.

And now on to the spine. The very back bone of the body,  that keeps you upright and stable, has failed me too.

Instead of growing the way nature intended, it curved down my back like a slithering snake.
I needed an operation to fix it. It was wrong. Spines aren’t meant to be like this, they would say. People would gasp in horror when they saw it. Thats not normal, they would say. I was repulsed by it, knowing it wasn’t they would spines should look. I have been bullied savagely. They would call me names and stare at me. They would make fun of the way my body looked, and make up cruel nick names that they would call me behind my back. But they do not have the strength that I do, because I don’t believe they could go through the things I have, and still be the same person all through it.

But I was ashamed, and I wanted it gone. The doctors decided this was life or death. My spine was growing crooked, and it was pressing my already failing lungs into my twisted rib cage. The doctors said it was a great risk, I was not likely to make it off the operating table alive. Although hesitant at first, and even flat out refusing to have it in the beginning, I decided that living life like that was horrible, and I had to give it a shot. So, they set a date for the surgery that changed my life. They told me that during the surgery, the doctors would straighten my spine, and then screw metal rods into the bone, so that it could never go back to the way it was before. I could never go back to the way I was before.

This is an actual x-ray of my spine. This is what my life is now like.

The relief that flooded through my body when I opened my eyes countless hours later, was something I’d never experienced before.
The pain was breath taking, it was so intense that I was in and out of consciousness for days on end. I had to be fed through a tube in my nose, that scrambled all the way down my insides and fed my broken body, because I was too weak to lift a spoon. I had to use bed pans, because my body was unable to leave the comfort of my hospital bed. When I was ready, I had to re-learn how to walk, feed myself, and even to this very day, I still learn new things every day that I have to do differently, because my spine no longer lets me bend at all. 3 months of wearing a metal brace around my chest, to help my bones heal. Months and months it took me to be strong again. Being showered and dressed by my mother. The pain medication left me drowsy and unsteady. Night mares and hallucinations followed.

My spine is incapable of bending, for the metal that keeps it bound together forbids it. Re-learning to do things differently has proved difficult, most things take twice as long as before. I cannot even tie my own shoe laces. Being 18 years old, I find this so frustrating. Even 5 year olds can tie their own shoe laces, so me being many years older makes me feel like such a baby. I am an adult, and I cannot do things such as putting my own shoes on by myself. Re-learning how to horse ride, something that I have been doing since I was old enough to walk, was something that took so long. Things that I could do before with my eyes closed and hands tied behind my back before, I could no longer do the same.

Most people don’t know this side of me. It’s not that I keep it hidden, I am no longer ashamed of what I’ve been through. I’m not ashamed of the scar that follows the length of my spine. To most people, it just doesn’t occur to them that someone can go through this.

I look normal on the outside. A bit thinner than most people, a side affect from my failing heart, but none the less, fairly average. The girl next door even. Even through all this, I love life. I cannot do what most people can do, but that doesn’t mean I will give up. Because I won’t.  And neither should you.

All you need is love.

Seeing a friend upset is probably the most frustrating thing ever. Not because they are upset, but because 99% of the time, there is nothing you can do to help. It does not matter why you are upset, it matters that you are upset.

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I can sit here for hours listening to your every fear and confession. I can take you out for coffee and make you forget about all the bad stuff in your life for a few short, perfect hours. I can wipe away the tears that spill from your pretty eyes. But I cannot fix what is wrong, and that is the most dissapointing thing about it all.


I want to take all the pain and heart ache from you. I want to bundle it all up into a tight ball, and throw it in the biggest, muddiest hole I can find, and bury it so it can never return. I would do this, if it was possible. But the frustrating thing is, that most pain isnt physical. It’s emotional, it’s on the inside. I cannot fix that. And that makes me feel like a failure. No body wants to see their loved ones hurt. No body wants to see them cry and have them push you away, because they can’t deal with how they feel.

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We may of been friends for years, or we may have just met. But if you are willing to let me into your life, I’m willing to let you into mine. Please, don’t push me away. I will just follow you. I will miss you when you are not near, and I will treasure the time when you are. True friends are rare to find these days, and I won’t give up on them easily.

You aren’t perfect. Neither am I. I believe no body is truely perfect. Every one has their flaws. I am sick, but I can still love. Together, we can all create perfect things.

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I may be just down the street, or in another state, but I am here. It may not always be possible to talk face to face, or wrap my arms around you and give you a much needed hug, but you are always in my thoughts. And I will do anything I can, to help you through this.

Forgive yourself, my friends, for you are only human. There is no book that tells you how to live life, there are no guidelines to guide you. We all make mistakes. But I am here, to help you. We are all afraid to fall, and we are all afraid of failing. But I am here. Please, let me help you. Believe me when I say, there is no one like you.

Everyone has their special talents and strengths, things that they can do better than others. Everyone has different dreams and hopes. But the reason I love you, is because you are you. Not for what you look like, not for what you do.

I love the people who I love, because of who they are inside. Believe me when I say I love you. For there is nothing more powerful in this world than love. It keeps the world spinning, it keeps our dainty fingers and stubby toes warm. It keeps us smiling and keeps the butterflies floating in our tummies. It makes people do irrational and stupid things. I also realize it can cause heart ache and betrayal, may it be from your boyfriend or girlfriend or husband or wife, may it be from your lover or your mother, your father or sibling. It could be from your best friend or work friend. But for some reason, even though we all know that there is a chance of being hurt, we still keep loving. We love our partners, we love our family. We love our friends. And, that is the most beautiful thing. I will be here, and I will love you. I just hope, that will love me too.

For me, paradise is where ever my friends are.