Posted in Blog

If Only….

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Zonegran: Fail.

The ride’s over… did you enjoy yourself?

 

Yes. I bloody well did.

 

Last Saturday afternoon, I had a seizure – my first one in two weeks. And then lost the rest of Saturday to exhaustion, where I spent the rest of the day sleeping until almost midnight.

I cried myself to sleep. I’m only a little less devastated today, however the heartbreak was unreal. Today I had to take the day off in order to sleep because I physically could not get out of bed.

Clearly still hungover from Saturday’s seizure.

 

So many things are dependent upon this drug: my career, my relationships, heck at the risk of sounding hyperbolic: my life! Just last week I had to explain to work why I’d been making so many errors over the last few months (thanks a bunch Keppra) and I’m still plagued by the dark cloud of shame, judgement, incompetence because of this demon that I cannot control.

 

As an epileptic I wonder how far my responsibility goes to educate the people around me of my condition.

 

Now the rest of this post is going to offend many people. However, I’ll be frank: I don’t care.

 

I very often wonder if, had I a more “popular” illness, would my mother and sister have turned their backs on me? It’s been over a year now since I last spoke to my mother and almost two since I last spoke to my sister and I often wonder how they can go on living their daily lives knowing that I’m living in London with a debilitating condition… do they really not care?

If I had Cancer, would they be by my side, holding my hand, never blaming me for slipping into darkness and despair, but instead praising me for my bravery? Would they mind when I swing from light and optimistic, to heavy with darkness and enraged within a second?

 

And what about employers? Before Christmas, I made it into work, having only taken off four days sick – which when you take into consideration that some weeks I’m having seizures everyday, is something to be incredibly proud of. Yet, I feel persecuted for that small ratio of absence and am made to feel inadequate because when choosing sleep over working until two in the morning, I’m putting myself over work and failing to live up to their expectations.

I’ve been told more than once that this is not the career for me. However, why should ANY career be struck off a list just because of a disability?

I often wonder if the same people who tell me that I can’t do my job would dare to say the same words to somebody else with a much more visible disability.

 

I’ve always been upfront with my epilepsy: which is perhaps why people are so upfront with their ignorance.

They lack understanding of my condition and they’re not ashamed to admit that either.

 

Having epilepsy is incredibly lonely; we don’t have MacMillan and Cancer Research; we don’t have people constantly fundraising for the minority who give a shit about us; we don’t have people offering up prayers for us because the majority just think that we’re possessed and best left to the devil that consumes us; we don’t have “heartstring tugging” television adverts, telethons and celebrity fundraisers.

 

Society fails to see the depression, the mental highs and lows, the incredible muscle ache, the headaches and the migraines, the extended periods of confusion and despair, the constant memory resets, the insane drug side effects…

 

Instead we get prejudice, ridicule, pushed aside and kicked down. We don’t have people fighting our corner because people can’t seem to be bothered to walk to that end of the ring.

 

And just when I think that I can take the kicks, another group swarms in with their judgements, knocking me for six. Last year I spent a week with people, thinking that I’d been accepted for who I am. Recently however, I found out that they had judged me – in fact, completely misjudged me. They know people with chronic illnesses – which for me makes it all the more hurtful to be seen as lazy, miserable and ungrateful.

 

I’ve had seizures on the bus – in fact I had one just before the Christmas holidays – I had a seizure and fell to the floor. People just watched. Had a person in a wheelchair fallen over, would the others on the bus just sit/ stand by and watch as they struggle?

 

Having seizures on a regular basis doesn’t make me “used to them either”. Every single one is frighteningly disconcerting, and the after effects leave you feeling incredibly lonely and depending upon the severity of the seizure: suicidal too.

 

I will continue to campaign for awareness for this awful illness until the day I die because nobody should have to live like this.

I think it’s bad for me, but there are people out there who suffer from this illness so badly that they can’t even leave the house. At one point, before I was diagnosed, that was me, therefore I’m forever thankful that I haven’t been left in that state.

 

But this definitely isn’t good enough.

And it will always be my life’s mission for people to know that.
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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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