Posted in Blog

No Longer Invited

Hiding From The Light

It’s the amount of people who no longer text me inviting me to things because I’ve had to cancel so many times in the past.

It’s the amount of times I’ve caused unintentional inconvenience because I’ve had to leave early in order to get an early night.

It’s the amount of times I’ve been called difficult because I decline eating certain foods because I’m monitoring my diet.

It’s the amount of embarrassing moments where I’ve been told something and then my frazzled brain immediately forgets the information and I’m left with two options: smile and nod like an idiot and pretend you’ve got it all jotted down or to look like an idiot and admit that you cannot remember a word you’ve just been told literally seconds ago.

Not many people understand when they have to constantly repeatedly answer the same question you’ve asked them so many times already; and I sympathise completely because only God knows how much I hate repeating myself.

It’s the unfathomable memory loss. I’ve never had a great memory; it was always a long running joke within my family that my sister remembers my childhood better than I do, even to the point where she can recall of the names of the BFFs I once couldn’t live through Primary School without.

It’s not even the not knowing what day it is, it’s worse than that – it’s not remembering how you got to this building; it’s the chunks of the week that are missing from your memory; it’s that embarrassing moment when you play the ‘name the capitals of each country’ game with your boyfriend and you fall at the first hurdle when he asks you what the capital of Germany is! (It’s Berlin… I googled it!)

It’s when people know that there’s something wrong with you and then they forget; they lose patience, they grow tired of the excuses.

It’s when the people around you are able to get over it, and yet you still can’t.

“Life isn’t that bad”

“It could be worse”

“Stop being so self-indulgent”

“It’s not all about you”

“There are people who have it far worse than you”

“You’re just not praying enough”

It’s when your own family become tired of believing that there’s something wrong with you, and you start to wonder if their believe was all just an act.

That’s when the last of your resolve truly breaks.

It’s when the world can say what they want and it can never hurt you when you have the bosom of your family to cushion you from the blows. But when they turn their backs on you and leave you to fend for yourself, suddenly the arrows penetrate even deeper. One thinks that it’s demon possession and that I’m just not praying enough and the other one thinks that I’m exaggerating my condition to gain attention. They’ve seen the seizures; they’ve been there during the appointments and dashes to A&E; they’ve witnessed the aftershocks post seizure and seen my face pale and my body drenched in exhaustion.

But how long are you supposed to convince someone to open their eyes when they’ve already made the decision to close them?

It’s when you’re no longer invited to the parties.

It’s when you’re no longer welcome at home.

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

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