Take a breath
And now another
Say thanks for all that you have had
Up until this moment
Feel your world end
There is a moment I acutely remember witnessing some years ago. It was grainy, tourist footage of a Thai man on a beach. Rapidly approaching him is the tsunami of Boxing Day. The tourists film in horror, and they can be heard screaming
‘He isn’t running, why isn’t he running?’.
Indeed the man did not run. He turned to face the wall of ocean about to shred the earth apart. He opened his arms in welcome.
And then the wave swallowed him entirely.
The man died.
And his world ended.
This man never tried to run, for he knew that he could not. No human heart is quick enough for such salted tragedy. He was without a name, without a face, without identity or reason. But he was not without the implicit understanding that each of our worlds must end at least once.
My world ended on the 29th of March, 2006.
I was just thirteen years old.
Prior to this moment, my world ended on a regular basis, typical of thirteen year old girls. Not being allowed to go to a friends house, being admonished by my parents, jealousy of my brothers. Regardless of the presenting issue, each time I remained fully convinced that my life as I knew it had finished.
Maybe there is a reason for this, and maybe there isn’t. Maybe it was to teach me a lesson in grace and gratitude, or perhaps I am simply the weakest biological link. These are still theories that I battle with in the lonely of the night. It isn’t a fervent, desperate need as it was initially. Rather, it’s simply a floating thought with each new day.
Where did I put my hairtie? Did I remember to lock my car? What is the date today? Oh and why did I develop a life threatening illness when I was thirteen years old?
Had someone on that day laid out for me all that I was to endure over the following seven years, I am sure that I would have died warm in my bed, frozen in shock. The pathologists would never ascertain a reason as to why, and I guess they would be left in the same position that I remain in now.
Over the past months and weeks, people all over the world have desperately been preparing for ‘The end of the world’. I am not sure how much comfort they would take in knowing that they are still alive today. These people are known as survivalists, and they were basing the doomsday on their interpretations from an ancient prediction.
We are not blessed with the torture of prediction for the simplest of reasons; the fear would suffocate us, drag us out to sea and drown us in our own knowledge.
If, seven years ago someone had told me what I would endure over the years I would not have survived simply because the knowledge would be too great. It was too much for one breath, for one young mind, for one scared little girl.
And so my tragedy began blatant in it’s simplicity.
I woke up and I couldn’t walk.
I cannot tell you what that first day was like. I cannot tell you because just as we cannot know the future, we sometimes cannot know the past. My present isn’t ready for that yet.
It developed, of course, like all great stories do. It spread to each and every cell. It strangled my brain and spinal cord, and weaved its web of deceit until my bones and muscles were plaited together to form a noose around my own neck.
At thirteen I could not walk.
By fourteen I was permanently in a wheelchair.
By fifteen I was dying.
I could not walk, nor eat. I could not shower myself, nor undo a single button on my size 6 shirts, which hung from my rotted frame.
By sixteen, I was broken. Some turn to drugs, others to alcohol. I turned to starving myself.
By seventeen I had my place in an Anorexia Nervosa Treatment Program.
By eighteen I was hemorrhaging so violently that my little brother had to scoop me off the toilet floor, as regularly as one went about brushing their teeth.
By nineteen my tummy was peppered in scars from the surgeons scalpel, and my heart had decided that regularity was banal, uninteresting.
By twenty ‘indefinite’ was stamped onto my medical files, as thick as the gap between myself and remission.
Of course, I wish it had been so simple. But Chronic Illness cannot be easily defined, placated into order. It is messy, feverish, desperate and hissing. I have surely made a joke of disease entirely.
It’s the little details.
Sobbing into my daddy’s arms when they tell me that I need a naso gastric tube.
Screaming for Mummy from the toilet, to tell her that my insides have fallen out into the palm of my shaking hand.
Having my peers scream freak at me as I attended my first day of school in a wheelchair.
My lover telling me that my disease is too much. That most people can’t be with someone like me.
Screaming on the floor, knowing that my best friend had just left for heaven.
MET calls after surgery, and being too desperately unwell to tell mummy that I was scared.
Mummy being too desperately scared to tell me just how sick I was.
My little brother asking if he can have my laptop when I die.
Being alone, weekend after weekend, with not a friend in sight.
These are the moments that make Chronic Illness. It isn’t the big moments, all that you see in Grays Anatomy and ER. Those big moments, they don’t matter. We could care less for such outrageous performances.
It’s the little things that end my world on a weekly basis.
Tonight I sobbed in the arms of my little brother. He is 6 foot 5, and not so little anymore. He asked me if I felt sick?
No. I am sad. I am sad because I am supposed to be in Sydney and I am too sick, and it’s not fair, and it’s never going to be fair.
And then I stopped crying, and we got on with our lives.
There have been so many moments in my life when I have been so entirely certain that I would never be able to take another breath, for the pain and the tragedy of it all.
There isn’t a month that goes by that I do not sob to the shower drain, whispering that I am tired.
There isn’t a week that goes by where I am not desperately ill, and crippled in my bed.
There isn’t a day that goes by where I am not suffering, where my body is not racked in disease.
There isn’t an hour that goes by where I am not in excruciating pain, as my body tries to kill itself off.
Had you told me then as a thirteen year old that I would spend the remainder of my life fighting just to keep it, I would have asked you where you kept the night, and asked that you lead me there.
There is going to be at least one time in your life where your world will end.
You will be numb. And then once you stop being numb, you will never feel numb again.
You will scream, sob and vomit into your hands.
You will beg for the world to take you, or you may try to do it yourself.
This is a tragic guarantee of life. If you have, you will one day lose. Maybe it will be your health. Perhaps it will be your child, your wife, your brother. Your home, your innocence, your dignity. Your job, your vision, your arm or your wife.
My dad often says ‘People are dying today that have never died before’. And they are. And women and children are being raped today, who have never been raped before. And marriages are ending which have never ended before. Houses are burning down which have never burnt down before. Police are knocking on mothers doors whose doors have never been knocked upon before. Arrests are being made on wrists who have never been arrested before.
Regardless of whose world it is, how or why, worlds are ending today.
And one day, your world is going to end too.
Or so you will believe.
Seven years ago, I thought that my world had ended. Today it spins so brightly I go to bed each night dizzy with it’s beauty.
It doesn’t make what has happened right, nor fair. I still do not have the answers as to why, and sense and reason still eludes me.
But sometime between now and then, I made a choice.
I tipped my world on it’s side.
And I made sure it started spinning again.
And when your time comes; make sure that you do too.
You have no idea just how beautiful it could be.