Pins prick the back of my neck and my hairs stand on edge, as if commanded by an officer. It’s electric and it tingles, usually this is a good thing but now it’s the opposite. It’s dark, it’s…unnerving. Fingers spread around the back of my neck and caress my face, yet there are no physical appendages on me. Quickly, I turn. If my back is no longer to them then they cannot get me, cannot touch me, watch me. Slowly, I scan the room, desperately trying to locate whatever had been targeting me, yet the only thing I can see, can fathom, is the ever growing darkness in this field of bright lights.
My feet are bricks and my legs are numb, while my body doesn’t recognise this fear, my legs revert to their primal state like a deer in headlights. I’m frozen. But my mind is alive and well, bursting at the seams with a fear so unknown and boundless I can feel it stretching out of my very body and it starts to fill the area, starts to coat and stain the very world which is torturing me. If only it would highlight the thing, that won’t leave me alone. It stares at me? Or glares at me? The way my skin boils at it’s gaze leaves me no information on how it looks, where it stares from. I’m frozen but I know it’s eyes aren’t. If only I could swap places with whatever it is.
“I know where all the missing socks go!” I screamed at my mum, face red with excitement and body shaking with anticipation. She turned and looked at me with a faux smile and hazy eyes. She said everything she wanted to say without saying it. “Go on then.” She replied, voice blunt but her words sharp. “Well it only makes sense that the washing machine OR the dryer is a portal!!” I exclaimed, pushing away any doubt that my mum had sparked. I stood there looking up at her hoping for a smile filled with joy that her child is so excited about something even if it is as trivial as missing socks, yet I was met with nothing but a grunt. “Tell me I’m not right mum! Mum!!” I wailed, she continued on her path to wherever she was going, I didn’t know where but I had an idea. Anywhere that I wasn’t she would have been happy to be.
“And that’s the story of the missing socks” I told the woman on the sofa, she looked at me with a real smile and genuine intrigue, something I had longed for so long ago. “That’s wonderful David, now let’s begin to unpack that” the therapist replied, voice heavy with concern and empathy. She only cares because I pay her, I thought. Despite this, I ‘unpacked’ anyway but all of this was tainted and stained with the thought that if my mother couldn’t bare to listen to me speak about lost socks then why would she?
A plague that has no cure, A boil that cannot be lanced, A mind that cannot be tamed, I close my eyes and it only replays, Once. Twice. Thrice, Like a broken record, Like the certainty of sunrise, Once. Twice. Thrice. But a plague needs a cure, But A boil has to be lance, But A mind has to be tamed, Yet I close my eyes, And it only, Replays.
Blinding light seared my eyes. I could feel my pupils dilate, filling to the brim with the bright flash that consumed the room. Spot of black lay waste to my vision, I was blinded momentarily but more than that I was blindsided. Even with my bedroom curtains open, the sun was never this bright. Right?
My head swivelled left to right, trying to gain some information of my surroundings, I clearly was not in the comfort of my bed, the hardness under my bum and the firmness of the floor on my bare feet told me that. So where the hell was I? The black spots began to flee, once again giving me my sight back, a sense I didn’t know I would miss so much. Yet I still felt blind. I turnt my gaze down towards my body, I was still in my shorts and t-shirt I had slept with that night but I was not in my bedroom. The walls in my home were a beige colour, filled with paintings and photos of some abstract value that I didn’t appreciate but others did. The walls here, wherever here was, seemed to be just plain brick, damaged by rain from the holes in the tin roof above us. Surely the roof wasn’t tin. Beams of steel, ran from one side of the room to the other, at least 10 from what I could see. Was this the office of a scrapyard manager? A warehouse of some sort? Nothing seemed to lead to an answer only more questions. Grey, battered, concrete flooring was the hardness I felt earlier. Large chunks were missing from the floor, some of the flooring had been left alone holes and all while other parts looked semi- repaired as if someone had tried to fix it but had given up half way through.
The more I looked around the more confused I became. Breathing became difficult as anxiety settled on my chest, preventing my lungs from expanding but also stopping them from deflating, a two pronged attack it seemed. Beads of sweat fell from my forehead, trickled down my face and hit the floor, mimicking the sound of the rain that was crashing through the roof above. I willed my hands to clasp together, and only this made me realise my hands weren’t in front of me, rather they were behind me. Rope wound it’s way around my wrists constricting my movement and that same rope, like a snake had worked it’s way around my torso. How had I missed this when I looked down? Was I still blinded? By the light? No. But surely by my panic, my fear? Or where they simply not there when I looked down? Had I fallen asleep in the moment that has passed between looking down and looking to what surrounded me? Had someone knocked me out? I tried to voice my internal dialogue in efforts to make sense of the discombobulated feelings and thoughts. I couldn’t talk. The taste of fabric suddenly set in as I realised a cloth had been shoved into my mouth to clearly stop me from speaking. So I had to have been kidnapped, right?
Where the hell am I?
Internally I’m screaming, begging them to say what I need them to say. My chest feels so tight, so heavy. Air no longer fills my lungs, fear does. Pure unbridled fear. Those words need to come out of her mouth, my life depends on it. I depend on it. But I can only scream, on the inside. The outside? A husk of my former self. My ears open to the voices and conversations that’s surround me, my hands feeling every single brush of a finger yet I’m a husk. A poor image of my former self. Please say those three words. They may be heartbreaking, a terrible pain but it’s only temporary for you. For me I’m trapped, I have minutes left if they say it, If they only say what I need them to say. But if they don’t? I have years maybe even decades left. An expanse of time slowly fills my brain, I cannot be this husk for much longer. They need to turn it off.
Clouds swam in his vision, ebbing and flowing in a mysterious manner concealing whatever was laid below him. His chest rose and fell slowly, possibly due to the thinning air or due to the weight his anxiety had added to his chest. He shivered both out of fear and lack of warmth. His arms cradled his body, a futile attempt to maintain his heat in an environment where warmth was so scarce, he thought it was a hug from himself to himself- an effort to stay sane up here in solitude. Whistling and cracks of force drove themselves into his ears filling him with the haunting sound of the air, he didn’t realise how terrifying something invisible and vital for life could be. One strong gust alongside a misstep would be the end of him, would send him sprawling off the edge and tumbling down into the unknown which waited below.
Around him stood nothing but patches of grass and snow, there was nothing here. The promises which had filled his brain and fooled his rationality were now nothing more than a crock of shit, lies fed to him by those deemed more powerful by a state driven on corruption and discrimination. He was meant to be the one, the only person who could save this place from whatever was to come next, the only person on this earth capable of climbing this god forsaken mountain yet all that stood here now was him and the cliff face he was considering jumping from. It was funny how he described this place as god forsaken, a place so highly worshiped and revered as god filled was actually nothing but barren land accompanied with an edge for people to dive off of. People in this case meant him since he was the only allowed up here. Cold bursts beat his face senseless, he raised his hands to try and warm his cheeks which felt blistered from the onslaught of freezing air but that only made things worse since his body was now susceptible to the cold army which ruled this peak.
He stood closer to the edge, if this place was truly without a god then he would jump and end it all but if the rumours were true- it was a big if- then he would surely be saved, picked up from the heavens by the ruler himself, placed into safety and then granted a boon for his bravery. His life hinged on his belief or lack there of. Thinking no more, he jumped. If he was to be saved he had to be confident in his actions, a step signalled only apprehension; a jump showed unrivalled courage. He had silently hoped this would be a sign for whoever was above him but for now he would just fall and hope.
I sat at the edge of the mountain, glaring down at the world below. This whole domain was mine to rule, I thought. The open air whipped my skin and feathers yet I felt not cold but alive. Adrenaline rushed through my veins as I pushed off the cliff and my wings began to beat against the air, with a large breath in to steel my nerves, I took off. The world below danced in an array of liveliness and colours, the sounds of the buffalo below rang all around and the songs of the insects mellowed out the harshness of the larger animals screeches. The air was thick but I was like a knife, slicing through it as if it was nothing, this was true freedom.
I peered down, my stomached grumbled, as I watched an army of rats scurry across the grass land which lay under me. With nothing but hunger now filling my vision, how I could ignore such a delicacy. As if by magic, my wings collapsed and I was no longer flying , I was diving. Synonymous with a bullet, or at least I thought I was similar to a bullet, I had never seen one. Squeaks and ruffling of my meal got harder to distinguish but my eyes were sharp and focused, there was no way I was missing one, not this time. I hadn’t eaten in 5 days, I cant let hunger blind me but I also can’t allow myself to lose my position in this beautiful world I thought since all that would await me if this meal did evade me was death.
Time seemed to slow as I got closer to the ground, as if I was granted some mercy but a deity up above in efforts to show their support of my endeavour. Closing the gap between me and the food was one thing that I could achieve, grabbing the meal was another. My talons began to dislodge themselves from under my stomach and poised themselves for attack. I’m an assassin, a trained killer albeit one with a very poor success rate but I am still both of those things. The ground was much closer now and it was time to prepare my feast, I soared over the grassland and in the peripharal of my vision I noticed the scurrying. Yes, you’re mine now. Swaying left, I changed course and charged towards the rat, talons bared and ready to attack.
It was over in an instant. It happened so fast I can barely recall it. Blood dripped from the edge of my claws yet they remain empty. My stomach grumbled as it remained empty. My vision clear as it remained empty of any food. The top of the mountain looked daunting now, as I watched another eagle take their place on my perch, this domain was now his to rule I figured.
“It’s time for your treatment!” Chimed the nurse. She always looked overly cheerful, perhaps it was to distract from the fact she was exhausted every hour of everyday. “Do we have to do that today? I’m more than happy rotting here,” I responded The nurse smiled, she had been treating me for years and was more than educated on how to deal with me and my terminal patient humour. Being hospitalised for more time than I’d been at home seemed daunting to the general public but to me this was my home and my nurse- Edna- made it that much more welcoming. “No you cannot just rot here! What happened to our New Year’s resolution?” Said Edna with a huge smile on her face. “The one which we both know was made to make ourselves feel better about being in hospital on New Year’s Eve?!” I retorted, trying to keep myself from reciprocating her inviting grin. Edna laughed, a sound so rare to hear in this place but was so present where she was.
Vest and wires in hand, she strolled over to my bed and began preparing me for my ECMO, a vibrating vest said to aid people with CF in breathing. I struggled to believe this, I knew all the science behind it since I’ve been vibrating for 15 years now but I’m sure doctors just issued this as treatment to have some amusement in their jobs, an opportunity to laugh in a place so full of sadness.
“So remember, take your ..” I put my hand out to stop her speaking “You make have a degree in this but I’ve been living it for 15 years, inhale my nebuliser while the ecmo is running, that was what you was going to say wasn’t it?’ I said, voice venomous yet light hearted in essence “ Wow, look at you, the patient becoming the doctor. It’s quite impressive Jack” Edna responded, genuinely full of glee and not in the slightest irritated at how I’d gone about demonstrating my knowledge. She gave me one last look and then left the room, leaving me alone with nothing but a vibrating vest and my thoughts.
I sat there for a while, trying to just breathe alongside my thoughts. My chest rose and fell yet it felt as though there was a ton of bricks chained to my chest stopping it from fulfilling its purpose. Breathing was easy I thought to myself, even babies can do it, yet I have to be violently shaken to even get semi good at it. A chuckle escaped my mouth, it was an amusing thought I’d conjured, something so simple to the majority was the thing that would kill me. I wasn’t naive, I knew that every breathe I took would take me closer to my last and not in a way that sarcastic, flippant people go on about as in ‘each day we breathe we get closer to our last’, in a way that the simple art of breathing would simply be my death. One day a breath I take will not be sufficient and the subsequent one the same, until i eventually am no longer breathing at all. Well no longer semi breathing. Life for me was borrowed time, borrowed from the various medical equipment that sat around me in the hospital room, stolen from the various researchers working tirelessly night and day to come up with some cure for this awful disease and taxed from those around me who don’t want to see my take my last breath. My last semi breath. Memories of before constant hospital visits came rushing violently to my head and danced in a flurry of the past’s simplicity and bathed me in my ignorance and lack of gratitude. If I had know then how thankful I would be to inhale a deep breathe and fill my lungs with the vibrancy the world offered and exhale everything my body couldn’t soak up, if I only I could go back and let my chest know each time it rose and fell without hardship how thankful I was for it and how much it meant to me then maybe I’d be living in such simple times now.
The violent shaking from the ECMO vest dragged me back to reality, away from the land of health and back to the reality of semi living. Edna walked in just as a tear rolled down my face. “I wish I could just breathe” I said between sobs.
If the heart wants what it wants, Then so does my brain, Fighting between love, And desperately staying sane, Companionship and romance, The painful tales of the heart, But the brain simply refuses, And opts for a different style of art, Solidarity and sense, Are the brains poisonous choice, Two conflicting forces, Both at war for the control of your voice, But If I was forced to choose? I would choose neither, The heart nor the brain, As love without sense is nothing more than an ache, But a life without love, Is a life half lived, For the journey through earth, To above it and beyond, Both the brain and the heart are needed to bond, Love and sense, Companionship and solidarity, The necessities of any human who wishes to be happy.
