For this blog, I have taken a different and for me, rather uncomfortable approach. I have used complete images of myself.
This is not through vanity, but rather my attempt to remind you not to pity those of us who are ill, often desperately so.
Rather, it is to remind you of our beautiful Hallelujah.
Every now and then, I catch sight of myself; It always when I least expect myself.
The street, and across the pile of Capri pants. At the pedestrian lights and in the booth next door. It doesn’t matter where; I always take my breath away.
The girl, all of twenty four, with not twenty four hairs upon her sunken head. The young apprentice with the prosthetic arm. The mummy, babe tucked under arm, as the oxygen tank nestles in beneath the pram. The barista with the fistuled wrist, the tattoo of dialysis.
Each and every time, the world slowly stops. My breath catches against a sob. I don’t want to stare; I know what those stares feel like. I don’t want to be like everyone else. But I want to look. I want to look into their lashes and scream.
I get it.
I get it, and I am so, so fucking sorry.
But I don’t.
Instead, I close my eyes. I bite my lip, and slap the tears away. And I pray that they have a beautiful hallelujah today.
I heard there was a secret chord
That David played, and it pleased the Lord
But you don’t really care for music, do you?
I was not handed a chord, rather David slapped my face with the symphony. David was boned and blooded, with spinal cord and brain keen to swell. David was me, and in time, I became David. Sometimes I slap my eyelids shut, and try to understand where I went wrong. I never asked for this song. Or did I? Was I too ungrateful, and much too expectant? Perhaps this is the song of greed and the sound of presumption. I scream at myself. This is what happens when you don’t scream thanks that you are alive.
And then I remember that I was only thirteen.
And thirteen year olds are not supposed to hear these soundtracks.
But my screams and sobs go to waste, and despite it all, the music continues to play.
It goes like this the fourth, the fifth
The minor fall, the major lift
The baffled king composing hallelujah
The first bar was the brain. A quaver so quick and silent that I never heard a thing. The second bar followed in quick succession; Encephalomyelitis. This is the spinal cord swelling, horny and full. The third was a tragic trifecta. David waved his hands, and with conductor power, the joints were hung. So swiftly were their necks snapped, a rope thread overnight. I remember when I woke. I screamed.
Mummy, I can’t walk.
Daddy, help me Daddy.
But it was when the fourth and fifth bars were reached that we knew there was no turning back. A note pressed on a piano key can never be snatched back and thrown upon the ivory once more. The fourth is my muscles. There is little left of them now, for the atrophy swallowed them whole. And the fifth? The fifth is the organs. Heart. Lungs, the pair of them. Oesophagus. Stomach. Bowel. Ovaries. Uterus. Cervix. Bladder.
Once the fifth was played, I understood what no-one dared to tell me.
This is real.
This is here to stay.
And so I was left to sing my baffled hallelujah.
Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty in the moonlight overthrew you
I never needed proof that He existed, not like this. The irony that I learnt of heaven through hell is not lost on me.
But please, do not tell me that He works in mysterious ways. There is nothing mysterious about disease; it is the least mysterious of all.
He fills thirteen year old girls with the sickness of old women and can never quite decide if she should live or die. He lets babies lay still and stiff in the hospital floors, with tracheotomies choking their already gurgled airways. He fills best friends with a mosaic of tumours and leaves me vomiting when I remember her last breath. He rips the limbs, the hearts, the lungs and the kidneys from the beautiful and wonderful, and makes them fight.
He kills us. And there is nothing mysterious about that.
And so I flaunt my beauty, brazenly and in excess.
My eyes scream of forest, and my lips of sting. My limbs may be broken, but their atrophy only makes you hunger for me more. I am spindly with legs longer than my IV tubing. They say that you never forget how to ride a bike. But you can forget how to walk. And for the longest time, I just could not remember.
Like this Jess.
I concentrated with desperate ferocity on the physiotherapists pointed feet, one taking place in front of the other. She made it look so easy. And no matter what I did, my feet didn’t walk prettily like hers. Instead I would fall to floor, and pretend that being a freak didn’t hurt.
But, I don’t walk now either. Instead, I float. I catch you breathing me in. And sometimes, I turn for just a moment. And I let your eyes make love with mine. Wicked and hot, but a breath in your heart.
I am better at loving than I am at staying alive.
She tied you to her kitchen chair
She broke your throne, she cut your hair
And from your lips she drew the hallelujah
One does simply not love me; to love me is to fill with me, and suffocate all at once.
I will slap at you, without restraint or remorse. I will scream, and my spitted words will stab at your breath. Tragedy moulds the most pointed of tongues.
She is dead. Don’t you get it? She is dead. She’s fucking dead.
And I cannot beg for forgiveness. There will be no please babies, no promises of change. Because I mean it, all of it. The truth is, sometimes I hate you.
You make me wake and love and live. And the whole while, I love the dead-to be. And no matter how hard I smile, I cannot change the fact that I will bury them, one by one. Slowly, painfully. Until, I am left the shattered sonata and all that remains is the knowledge of how hard they tried to stay.
I am the lucky one. I shall fight, oh by God I shall fight. But I will live. I just need you to understand that when I bite at you between sobs, I am not cruel, just honest.
We don’t get to choose who wins and lose.
Baby I have been here before
I’ve seen this room, I’ve walked this floor
I used to live alone before I knew
I’ve seen your flag on the marble arch
Love is not a victory march
It’s a cold and it’s a broken Hallelujah
There is not one soul that cannot break with the tones of Hallelujah. We all know. It is everywhere. I am the beautiful tragedy that you so desperately need. For, if it is me, it cannot be you.
I used to think like this too, you know. Before I became all that I feared. Ventilators crackled down baby brother’s throat. Our home filled with the sounds of dying babe. I knew that these tragedies took place, for we were living it. Illness and Disease; It is everywhere, but most of all it was here, sleeping soundly in our papered home. Daddy said that some people are special. And when my four year old fingers stroked the electrodes peppering my brothers bent and tragic chest, I understood all that Daddy was too afraid to tell me.
Sometimes little brothers get sick. And sometimes, they might die. But we love him. We always love him.
You thought it too, didn’t you? The family friend swaddled in bandanas, as you placed casseroles in their lap and reminded them of how well they looked. Your colleague, who despite a lifetime of genetic horrors, continued to smile weakly in the meetings, until ever so slowly, they were without meet, and their very own began to rot into oblivion. The family next door, forever hurrying with feeding tube leaking from the nostrils of their eldest. I can almost hear you.
Let me know if you need a hand with anything.
And it made you feel good. But when the door closed, and the world turned, you would breathe a sigh of relief.
Thankyou God. Thankyou that it’s them, so that it doesn’t have to be us.
Keep your friends close. Keep your enemies closer. And keep your tragedies nearby. Just close enough to keep you safe, without the desperate gasps of its reality.
But it doesn’t matter.
Sometimes you end up like me regardless.
Maybe there’s a God above
But all I’ve ever learned from love
Was hot to shoot at somebody who outdrew you
It loves me so, more than the rest and their dreamy intentions. It even loves me more than you will.
It forever tries to win and impress. I cannot ignore its advances, for it is already pulling at the lace of my knickers. It never even asked. Brush offs are laughable when facing a cool bed of soil.
It screams at me.
I am here. See me. Feel me. Let me take you; all of you.
At first, I tried running, faster than my rotting curves could carry me. I ran to the edge of the bloodied curdles, and further still. And so it took my legs, and gave me wheels instead.
So it starved. I was merciless, in spite of my parent’s desperate pleas. Not a single crumb crawled past my lips. To extinguish a fire, you must starve it of oxygen. A disease is no different; Starve it of its body, and the body of its food. And soon you shall have rest.
Just keep starving. Just keep starving. Just keep starving.
Until one day I stopped being hungry for victory. And I learned to hold its hand instead.
It’s not a cry you can hear at night
It’s not somebody who has seen the light
It’s a cold and it’s a broken Hallelujah
And this is where my Hallelujah ends. There shall be no encore.
The truth is, the cries are always loudest at night. If you were to press the shell of your ear against my wooded cave, you would hear the whimpers. The chords only grow stronger, until the sobs echo through bone and bed.
But do not be mistaken; The cries are never for my own.
A whimper for the boy, dead in the bed next-door. For tiny coffins and Mummies wetting themselves in grief. For the nasal cannulas breathing into the lungs of the friends I love most, and the Do Not Resuscitates. For the limbs that are lost, and the futures to follow. Sobs follow in memory of their lives that once were, and the hair to never regrow with the same kink.
Cannulas and burns
Wheelchairs and Daddies clutching at urns.
The dark precedes the dawn. I awoke to its light a lifetime ago.
You always want to know.
Does it happen for a reason?
Most likely. But is it for the right reasons? I like to think so. The truth is, I will never really know.
I know what you think. My hallelujah is cold and broken, a bittersweet melody.
And I cannot fault you; You don’t know any better.
But your feet do not know the unadulterated joy of teenage first steps. Your lips know not of stolen kisses between scans, and the rush of making love to a body that is broken in hate. You have not lain on the grass with the dying, and filled with the living. Your crackled breaths have not gasped with fairy lights.
I guess what I am trying to say is that the next time you pass me, do not smile apologetically at the bones and the fractured skin.
Sit with me. Take me in your arms. Place your tears aside.
And let us sing my Hallelujah.