I sit lifelessly. Barely alive to the naked eye, but to the few who know me well, I am laughing, shouting, skipping ecstatically. My brain jumps and twists with words in a way my mouth can’t. I’m smiling. Strangely enough I am blissfully happy as I gaze around my current view frame, a rare occurrence if I’m to be honest. But not one person in the crowds that are bustling straight past me even notices my wide smile. It’s the smile of when you win a county final or when you see someone you haven’t seen in ages. It’s the kind of smile that you can see bringing happiness to those you smile at. It’s like a syndrome. One of the rare good ones though.
People are strange. I can tell so much about them by their reaction to me. A few look away to avoid making eye contact. I don’t blame them; they don’t really know how to react. The odd person will give me a weird stare. They are judging me because that’s all they know to do and I can hear their small minds thanking god that they’re not me. However the majority of people give me The Smile. It is nothing like a normal smile. It’s not wide or happy. It’s more of a pitiful acknowledgement of my existence. They purse their lips and pull them tightly back. I hate it and I would tell them that if they could hear me. Maybe it’s for the best though, that no one can hear me talking.
I am currently sitting passively in one of my favourite places ever, the beach. It’s a struggle to get me here and I know that. In fairness though, my mam tries her best. We come once a month and twice during the summer. It’s the way that the warm sea breeze pushes past my face, heading to far off places as I look out to the sea. Warming every inch of my porcelain skin as it goes by. My face blushes a golden yellow as the sun melts away my snow white skin. I enviously watch all the other teenage girls my age. With their white bikinis, bleach-blonde hair and tanned skin, they delicately tiptoe into the sea. Almost afraid to live just in case someone might judge them. In my bikini I thrash about wildly in the sea, saving myself from being pull down by the sea. I have no idea how to swim but I just love the sensation of being almost completely submerged in water. As I emerge from the sea there’s a menacing wind that surrounds me. The hairs on the back of my neck rise and I shiver violently. My wet hair attracts more unwanted coldness added to by drops of water race off my frozen body. I run over to my gear bag my feet are slipping and sliding on the sand and I take out a snow white towel. With it wrapped around me I have a shield from the cold air. I open my eyes and what a surprise, I haven’t moved a muscle. I’m still in my chair re-enacting this dream inside my own head. I gaze over at the girl living my dream, allowing her towel to protect her from the freezing sea air as she throws back her head laughing with her friends.
My eyes are flooding with tears and I let them fall gracefully out of my eyes and gently roll down my face. I have to; I can’t do anything about them unless my mam wipes them away. Luckily she doesn’t see my pathetic wet face. I suppose it upsets her because she doesn’t know what’s wrong and I can’t tell her. I strain my eyes and sneak a look at her. She’s sitting on a rock rocking herself back and forth with her eyes shut tight. Dreaming of a more normal life I presume, that’s why I come to the beach anyway.
The afternoon draws to a close. People start to pack up their bags and go home. They leave behind only sandcastles, the one piece of evidence that proves that they were there. My mother looks over at me and says “Kate, are you ready to come home?” I reluctantly blink a yes. “Right then, we may head back along.”
We slowly manoeuvre our way across the sand. It’s a slow laborious process which takes fifteen minutes at the very least. Eventually we make it into the car. There is only one other car at the far side of the empty, lonely car park. There are no wheels on the back of it and all the windows are smashed in, sharp shards of glass littering the tarmac around it. That small red car really symbolises how I feel in everyday life. I silently sit watching all the other normal people around me get on with their lives. The car is just waiting to be towed away and crushed up, ending its pointless existence. That is quite like me really, waiting for the day I am set free from this paralysing life. Mammy drives slowly away from the beach reluctantly leaving behind us an exhilarating afternoon and the damaged red car. We pass the gaggles of teenagers hysterically laughing at their own jokes and probably at me if the truth be known. Honestly though I really don’t care. On the inside I am an exactly like them. On the outside I’m nothing like them. Unique but the same underneath it all.
“Your father text to say John is already at home.”
I roll my eyes in response. Every morning 7am-8am and every evening 6pm-7pm without fail John is there, asking me if I’m alright, if I am comfortable enough or if I want the TV channel changed. He is just constantly checking up on me. Apparently it’s his job. If I was old enough and able to work, caring for someone is something I would never even dream of doing. I have no doubt that it is extremely boring and most of the people who I know that have one (including me) dread the carer coming in everyday and reminding them yet again how they cannot care for themselves. Eyes looking up for yes, eyes looking down for no and eyes rolled back into the back of my head is all john ever gets. It is all anyone ever gets.
Locked-in syndrome: a medical condition usually resulting from a stroke that damages part of the brainstem, in which the body and most of the facial movements are paralysed but consciousness remains and the ability to perform certain eye movements is preserved.
That’s a definition that just seems to run on forever for condition that should just be called statue syndrome. Trust me I know all about it. Since I was nine years of age I have lived imprisoned by it. A prisoner in my own body for five long years.
You hear of miracle cases and of people “waking up” out of this paralysed state but I highly doubt it will ever happen to me. I am too normal for anything. Normality is bliss especially when we are faced with abnormal situations.
