Posted in Blog

Damage and Control

Today I had three seizures. My boyfriend was sitting next to me as I felt myself going; I reached out for his hand and told him before I “disappeared”. As I was coming to, I could feel him stroking my hand, and it suddenly reminded me of when my mother would hold my hand and call my name as she waited for me to come out of my seizure.

Post-seizure I usually feel emotional, however today I feel even more so.
I’m angry because I was on the plane coming home from a lovely few days in Dublin with my boyfriend when the first one happened.
I’m angry at myself because when I’m away, I get carried away and forget to take my meds on time.
I’m angry that I STILL cry for my mother when I have a seizure, and angry that I still miss both her and my sister even though it’s been two years now.
Earlier today I was just saying to my boyfriend how annoying it is when I think of a joke that only I will find funny because the only other person who knows the punchline is my sister.
I’m angry because they, and so many other people think that I’m making this shit up!
That I’m faking my condition for attention.
That I’m not really sick.
That I’m sitting right now in a darkened room, writing this on my phone with the screen brightness on the lowest setting so as not to aggravate the migraine that’s been left behind by the seizures because this is fun and I would rather be doing this than be at the cinema instead with my boyfriend like we’d originally planned.

I was sick over Christmas with the flu as well as struggling with seizure control and side effects from Keppra. We spent Christmas with my boyfriend’s family and I tried to make the best of the bad state of health I was in, especially because it was the first time I had met them all and I have been looking forward to it for weeks. Unfortunately I spent Christmas Day and Boxing Day in bed, and most of the holiday taking naps. At the time however, as they were being so accommodating, it felt like the best Christmas ever, especially as I was getting to spend it with my lovely boyfriend. His family had made me feel like I had been accepted regardless of my major flaw. However, towards the end of the holiday their patience with me seemed to grow thin and some of them soon made it clear that my lack of energy for things was being interpreted for boredom and unappreciation for their hospitality.

I returned to London downtrodden and was soon brokenhearted to have some more of my suspicions confirmed about the way they felt about me.
Thankfully my boyfriend is incredibly supportive, and because we spent so much time getting to know each other when we first met, he knows a lot about my condition.
He also lives it with me day by day because he chooses to.
I made a joke to my boyfriend that I was expecting too much for his family to like me when my own don’t even like, let alone love me. These words however were not said in jest. For years as I was growing up I felt like an outcast and that final rejection because of my epilepsy diagnosis was all the confirmation I needed so many years ago.

And every seizure is just another reminder of that rejection.

Taking control of my Epilepsy is something that I am desperate for which is why I have taken the decision to enforce a ban upon anything that triggers my seizures.

I’ve decided that I’m no longer going to talk about my family anymore.
With my career at stake, this needs all of my emotional focus. I have no more strength left for people who don’t care about me.
Every time I miss my mother, I forget that I’m missing the woman who allowed her husband to abuse her little girl and who now lives on knowing that that same little girl lives everyday with an unbearable illness, as well as the scars of that abuse that she refused to talk about over the years.
Every time I miss my sister, I forget that I’m missing the person who used to be my best friend until I was diagnosed with epilepsy and instead of standing by my side at the most terrifying time of my life, used that diagnosis against me. And who believes that I made up lies against the monster who is our father in order to gain attention.
Every time I miss having a family, I forget that I never really had one. I spent my entire childhood and adolescence dreaming of ways to escape.

No happy child would ever feel like that.

My therapist told me to be the person I always needed when I was younger, which is what keeps me going when I don’t feel like I can go on any longer. When I was crying in the airport toilet today because I was furious that epilepsy had ruined my holiday, I had to remind myself to carry on going for the teenager who wanted so desperately to be the woman I’m so close to becoming today.
And as long as I focus on retaining the wonderful memories from my holiday before they disappear post-seizure recovery, instead of other things – including the way my boyfriend’s family feel about me, then I’m winning.

I’ll leave you with this…

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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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