Posted in Blog

I Wonder

It’s time for me to stop being ashamed of the fact that I am different.

Last week I had a generalised seizure (more commonly known as a grand mal). It was four in the morning and I woke up jerking and moving down towards the edge of my bed. I haven’t had a seizure like that in a while; when I was frequently having them back in 2011 and 2013-2014, I was still living at home and would call out for my mum once I came to. Obviously this time I couldn’t do that. I laid awake until my alarm went off and got up and went into work.

I assumed that having slept as soon as I got home and having an early night, I was fully recovered and made the most of my third (?) weekend as a single gal by hanging out with friends and doing stuff for myself. In hindsight, I realise that I was subconsciously pushing myself in order to make a point to myself that I can do everything everybody else can. However, the brand new bike I bought only last month, only ridden three times and now living in the spare room next door to me is a constant reminder whenever I walk past that I’m not like everybody else. I’ve only been able to ride my bike three times because I’m constantly recovering from seizures, or doped up to my eyeballs on AEDs.

I miss running. Today a friend texted to say that they would call me after their run. I immediately felt a pang of jealousy. And rage that I haven’t been able to do that in almost a year. I signed up to run the Great British 10K this month and had to pull out because I was too sick to train. Running gave me energy and last summer I was the fittest I’d been in years; now I just feel like a giant blob! Thankfully I’m still able to fit into my clothes, however I miss my thighs of steel!

I have my moments when I strut through the streets of London to Siouxsie and the Banshees (can I get a hell yeah?!) and as I walk confidently, I am as oblivious as the strangers I pass to my inner demon. However, I can only fool myself for so long?

I worry about work; how long will I be able to continue to work like this? I wonder what kind of quality of life is this? I turn to my 14-year-old self, sitting in the science lab, daydreaming of her adult self and slap her across the face to look at what she will become in 16 years’ time:

“This is you at thirty bitch. This is as good as it gets!”

 

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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