The following photo is from the movie My Sisters Keeper. These two lovers are fighting a very different disease to myself, but the message is the same.
Sometimes I can’t help but think that this is all a big joke. That someone is going to jump from behind the curtains and shout. They will tell us it was all a joke at our expense, and we will laugh, and agree that they did indeed fool us. And then we will move on with our lives, and all that will remain is the memory of how funny it was.
You see, I don’t understand. I don’t understand any of this. I used to laugh at the Bible, at it’s followers. Such silly people, I thought, living by an old book. It never occurred to me that I was the silly one. They had something to believe in. They had the reasons for their lives falling apart. It was printed right in front of them. All they had to do was turn the pages, and understand that this was just a part of the bigger plan.
And as I stood, clutching at the life that I had left, I realized that I had nothing.
Everyone has their own theories, their own beliefs. There is a God, there isn’t. We are all destined for an after life. After life there is a wooden box. We spend our whole lives searching, desperately, frantically taking hold of that which makes sense in our broken, bloodied minds. Why this? Why now? Why us? We search, hungry with every breath for the answers, until one day our heart stills, our breathing stops, and we leave this earth just as confused as we began.
When I was twelve, thoughts of reason never needed to cross my mind. A blessed fairytale doesn’t prompt such profound thoughts. For life was life. It was unfair in the sense that only a pre-pubescent child can understand. It was cruel and rich and filled with hot shame. It was wonderful, and exciting, and never quite enough.
How a year can change a girl. I never understood the power of time quite as well as the age of thirteen. Shattered into a million pieces, taken in the night by a monster that was not visible to the naked eye. I screamed release from the cool bars of a prison they could not feel. Why me? Why now? For, I was just a girl. This doesn’t happen to little girls, who are going to change the world. This happens to other people, in other times, in other lands. Not me. For I was going to be a supermodel, a surgeon, a pianist. I was going to be everything and more. No, this couldn’t happen. And yet it did. And none of it made sense. All I understood was that nothing was fair.
At fifteen, I was dying. Slowly, painfully. No-one was brave enough to let the word slip past their lips. For, through my Morphine haze, I may have been able to hear them. It would upset me, no, they couldn’t do that. The funny thing about dying is that you know about it before anyone else. It hurt, of course. I can’t imagine it ever being free of such heavy pain. But mostly, it was sleep. Deeper, and deeper I faded into the next world. Heaven was as close as it was real. I had nothing left; I had to believe in something. A land in which I could fly, where the next breath didn’t hurt, was as good a thing to believe in as any.
I survived, of course. Somehow, someway. I was being looked after, this much was true. Maybe It was medicine, maybe it was a miracle. At seventeen, I liked to believe it was both. It was safer, I knew now. You can’t place complete faith in just one thing, it’s much too dangerous Life is too fragile. You must keep your options open. And everything happened for a reason. The unadulterated truth of this filled every crackled breath. I wept the knowledge, dripping down onto my bloodied lips. She promised me, as my body continued to break. It’s all happening for a reason. In that moment, I loved her more than ever. The tumours continued to fill her lungs, spreading through her tiny, perfect body. It’s all happening for a reason, I promised her. And we sat in silent, tender agreement.
And then she died. And suddenly everything didn’t happen for a reason anymore. Not this. There was never a reason for this. And so, at eighteen, I broke all the rules. I believed in heaven, and not it’s creator. I can see her now, more beautiful than ever. The longest of locks curling around her complete body. She is whole once more, nestled amongst the stars, quietly waiting until it’s my turn to be free. But I could not place faith in the creator of this paradise. I could not place faith in He who tortured my best friend with nightmares and screams, He who made her fight, and then took her all the same. I knew that she was beautiful, and I knew that He was not.
And now, I hear you breathe? Now?
Now I still don’t have the answers. Now I still do not understand. A girl in my class looked a me wide eyed, as we prepared for our exams. She told me that I was wise beyond my years, I understood so much about life! I didn’t have the heart to tell her. I didn’t have the heart to tell her that I sob each night at the cruelty of it all. She was much too alive, too beautifully untouched.
What if I was to tell you, that, maybe there is no meaning? Maybe it just is.
Maybe, tomorrow morning I will wake, and I will continue to spit blood into the sink, my morning ritual, as rich and raw as morning love. I will swallow the powders which hold me in purgatory, the space between Free and Cure. I will collapse before my exam, and a room of eyes will panic, caught between screaming for help and acting indifferent. I will walk into my surgeons room, so perfect for such a room of destruction. I will stare at his hands, and wonder if I have the strength to ask him to take my future. I wonder if I will have the courage this week to ask him to do anything. When we both know that anything means never holding a babe to my breast. Never creating something more. Quality of life in exchange for new life. Maybe.
Maybe I will answer my phone, and know that he is a step away from too far gone. I will see the powders he buys, the poisons which his mind craves, but the life it could deprave. I will know that he doesn’t care. It hurts too much to do so. I see the demons chasing him, a blur of screaming darkness, and I will see that he has nowhere to run. I see what this world has done to him, what it has taken from him, and know that it will never stop. Maybe.
Maybe I will walk through the Microshield corridors, a maze of saviour and failure. There I will see dying six year olds, and the mothers of dead ten year olds, and the fifteen year olds who are not quite between the two. The naso gastric tubes, oxygen cannulas and PICC lines will snake from every orifice, a torturous embrace. They will have hair, and they will be as bald as the new day. My mind will go back to the day I saw a shy fourteen year old girl, in the midst of typical teenage angst. I remember that she was missing half her face. And I tried not to do what everyone else was doing. I tried not to smile at her, for we both knew that there was nothing to smile about. Perhaps I will remember the boy, all of two years of age. Two years too old, according to his body. His wore the moon face of Prednisolone, and was tucked in his special pram. This pram made way for the ventilator down his gurgling throat, across the bridge of his swollen nose, leading to the oxygen that would keep him alive just a little bit longer. I remember his Mummy. I remember not being able to tell who was more tired. Maybe.
Maybe I will call a friend, knowing that they are fighting too. Maybe we will talk about shopping, or the weather. Or maybe we will talk about the fact that they won’t be here next Christmas. Maybe we will ignore the fact. The disease which is killing them listens in on our giggles, and no matter how hard we laugh, we cannot escape the truth. And maybe we will begin to weep. Maybe.
But maybe, tomorrow, things will be ok. Maybe tomorrow my hemorrhaging will stop, and I will feed the ducks with my little brother, in the sunshine. We will break up little bits of bread, and we will shriek when the swans become jealous, and move in for the kill. Maybe tomorrow, he will not be too tired to open his eyes. Maybe tomorrow he will realize how gorgeous he looks without his hair, and he will build blocks with the baby, and laugh, knowing that Cancer has no place in his world today. Maybe tomorrow her lungs will fail a little less, and she will drink with friends under the night’s sky. They will laugh, and whisper night-time secrets, night-time techniques, like every other girl her age. And she will go to sleep, knowing that tonight, in this moment, life is beautiful.
The truth is, I don’t think that I will ever understand. It’s never going to be ok. There will always be the eyes of dying five year olds, and the screams of desperately fighting teenagers. There will always be the teenagers who never had to fight, but who take their last breath in the mangled wreck of a stupid decision. He will always have his demons, and she is still going to die.
But, it’s also always going to be beautiful. There will always be the moments where, for just a second, everything is ok, and you can close your eyes, knowing that the moment is prettier than you ever imagined.
Maybe there was never a reason. Maybe it just is.
So let’s stop worrying about the why, the reasons, the point and the question marks.
Right now, we have something in common. Our hearts are still beating. We can still leave our imprint in the grainy sand. Maybe it just is. So let’s live it. Every moment. Every crack and every petal.
Let us skid on the morning frost, in our daggy slippers. Let’s rest our weary cheeks on the bus window, and be still with the world. Let us blow kisses to strangers, and laugh at the photos in which we blink. Lets swing on the clothes line, and slip on detergent as we squeal with our baby brothers. Let’s drink from the sky, wind the clocks back, skip in the night, play with fire, race a skateboard belly up, and splatter paint, kiss a butterfly and dance in the rain.
Let’s just see how pretty it is.
Maybe that’s all we can do