For once, no stupid jokes. This is the closest that I will ever get to writing the truth. This one was fvcking hard and it took a lot out of me writing it. I hope that you can relate to it.
This is for my brother, if it wasn’t for him I don’t know where I would be.
Thanks for reading this one, it really means a lot me.
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After temporarily regaining a grip on my sanity and struggling to find a parking place, I walk down the impossibly clean corridor and the penetrative odour of disinfectant and bleach stings my nostrils. Everything is glowing, heavenly white and every surface is scrupulously sanitary. Even the particles floating in the air have been disinfected and scrubbed raw. There are two types of people in this brightly-lit corridor. One type of person takes confident strides of decisive purpose. They are engaged in the pursuit of a mission of fundamental importance to public health. They are bound by Hippocratic oaths, guidelines, rules and regulations and corporate mission statements. These people are also dressed in divine white. The other type of person takes shambling, tentative steps and their faces are engraved with the heavy burden of worry and the nauseating dread of mortality. These people are dressed in fear and their furrowed brows clutter the halls and make the corridor look untidy and unkempt. Human emotion is an infection that always causes disorder wherever it lays heavy on the minds of its occupant. These people are ushered into side rooms where overstuffed sofas, ticking clocks and week old magazines await. It is much more convenient and efficient to have somewhere to file them in an organised and stratified manner. After all there are vital standards of care to uphold.
I reach the ward door and wait with the other concerned spectres holding cheap bunches of flowers. The pressures of life are evident for all to see in dark sunken eye sockets. An unpaid gas bill. The threat of recession and job cuts. A significantly lowered immune system. A dangerously high white blood cell count.
We collectively sigh for a few moments then a bell rings announcing the commencement of visiting time. As one grey, groaning, shambling mass we trudge towards our corresponding personal, guilt-ridden lead weights. I collect my usual plastic chair and place it by the entrance to his flow room. I look through the shining glass at the pale, wasted foetus that was my brother. I hate the invisible barrier that keeps us eternally separated. It stops me from scooping him up and running and running until my legs give in. It is painful to look at him with all those tubes coming out of him. His bodily fluids are slowly being withdrawn and exchanged with fresh, healthier liquids. They pump chemicals into his bloodstream and I am never really sure what is going in or out of him. He is sick a lot and the dry retching makes me want to scream and pull my hair out by the roots. I want to take away his pain and inflict it on myself. I want to remove what is making him ill and inject into myself. I want to take his body and swap it with my own. If only we could change places it would be OK. I would be strong for him and I wouldn’t show weakness, no matter how much it hurt. Our lives would be different and he could live again outside these NHS prison walls. He could have everything he ever wanted. And I wouldn’t matter. I would be insignificant.
Then I wouldn’t have to think about him all the time, then I wouldn’t have to call the hospital every morning at 7am to see how he slept. I wouldn’t have to cry when I was alone. The tears always start in my chest, constrict my throat and then finally spill down my face. Then they become an uncontrollable deluge. But then I got to the stage I cried so much that I didn’t have any left. I had cried myself dry. And for this I felt even more guilt and noxious, self-directed loathing.
I still remember when we used to sit up late with the Argos catalogue and dream of what could be, if only we had the money. We would build our own capitalist, commercial fantasyland like the apartment in the film ‘Big’. We would be tired the next day at school and our eyes would be itchy with lack of sleep. But we wouldn’t care. Nothing could strip us of our very own image of perfection. We wouldn’t have to worry about having enough to cover the next utility bill. It just wouldn’t be a consideration. We wouldn’t have to ever think about it. That was the main reason I ended up going to University. It was to achieve those misguided, idealistic dreams. I would make a home for us that we could be proud of. Just so we could have everything we ever wanted. I did it just so that we could surround ourselves with the things that would make us happy. He was my inspiration. He was my Jiminy Cricket. He was the only one that believed in me. He was my reason for living. But that was before the disease took him away from me and incarcerated him in this buzzing, neon chamber.
I love this devastated, exhausted conglomeration of flesh and bones more than I could ever capture in words. I could never describe how much he means to me. So I won’t try.
I have no control over this situation. I am completely powerless and I am subject to whatever poisoned outcome that medicines can allow and that fate decides. I survive on scavenged scraps of information and sugar-coated approximations of healthiness from doctors and nurses. They work so hard, but there must be something else they can do. There has to be. I wasn’t a match for a bone marrow transplant and I blame myself for this every day. But, I am assured we are trying a new more rigorous treatment, a new drug that has just been developed. This is yet another mission and yet another battle-plan. I am shown scores of charts with meaningless numbers and percentages, some of them good and some of them bad. There is no tomorrow. There is only now and the present and every second, every time his heart beats is the sacred answer to a prayer.
Why are there concentric rainbows round the lights why is there pressure behind my eyes why is everything blurry why can’t I focus why can’t I lift my arm up why is that bruise still there why have I slept for a day how high is my blood pressure what is my white blood cell count why am I in a plastic room why is the air constantly moving why is everything sterilised why do they have latex hands why do I have to piss in a bottle why do I constantly feel sick how did that blood get into my eyes what is that syringe for what is in that silver bag what are those pills why do they take my blood away to be tested why am I on steroids why have I lost my hair why is everyone sending me cards and flowers and chocolate and knitted dolls and posters and books and magazines and videos why do they sit in those plastic seats why does everyone’s laugh sound so empty why does he leave me every night.
Why am I so fvcking terrified?
Why does my chest ache why do I have a stiff neck why have I developed an aversion to light why has my left side gone numb when did my eyes get so black why am I such a self-centred hypochondriac why can’t I feel a pulse it is these size five powdered latex gloves it is this apple-scented sterilising fluid it is that plastic wall and the smell of toast and tea with too much sugar it is the smell of panic it is infections and low immunity waiting rooms and pale faces it is visiting times nurses stations and hushed conversations they are saintly angels of purest white it is alopecia it is fainting in the corridor the floor is too hard and too clean it is watching him breathe through a mask glinting under neon lights pulse after pulse after pulse with tubes giving him back his life and I don’t understand any of this what do these words mean is his chest still moving why isn’t he getting his medication has he had enough morphine has his drip been changed has he had enough fluids where are his blood test results why is time standing still what is a bone marrow transplant why am I not a match I want to look inside his veins and run through his bloodstream but now it is time to sleep inside this iron lung and it is like leaving my heart behind every night it wrenches out another piece of my soul the nights I walked down the blank corridor and get into my car with tears stinging my eyes and my mind stays behind in that room it is an obsession a freshly injected addiction why does the phone ring in the middle of the night why do I hear crying the vitriolic anger is returning gently rocking the dualism creeps in as I beat my fists against my skull this is all my fault this is all my fault this is all my fault this is all my fault.
Why am I so fvcking terrified?