My Epileptic Diary (Article)

This is the first of what will hopefully turn into several posts on the topic of what it means for me to be epileptic and to have a seizure or ‘fit’ in front of people. While I have happily been fit free for several years now, this is still a very emotional topic for me. The purpose of these articles is to deepen understanding for individuals of epilepsy in general and hopefully to encourage epileptics themselves to ‘come out of the closet’ so to speak up and be proud of who they are.

 

For most of my life – from the age of eight I have been epileptic. Throughout the majority of that time I have tried my best to hide from this fact, refusing to read the literature given to me by doctors and in my university years, steadfastly ignoring all advice as though almost daring my body to have a fit. Which of course increasingly it obliged with, starting the cycle all over again. Ironically at the same time my worst fear was the possibility of having a fit in public and what I had convinced myself over the years would be the subsequent reaction.

It is true to say that often even those who are well aware of the physical effects of a fit do not understand the mental trauma of losing all control over ones self and the long term problems that this can cause. These articles describe my own experiences but I would like to think that the upcoming set of reflections on my epilepsy will help to give insight to some people in the emotional issues that having epilepsy can cause and perhaps ensure that more help and appreciation of this aspect of being epileptic is available. For a while I was unsure where this was going to go but finally I decided to make these essays my very own epileptic diary so here goes.

Begin at the beginning the king said gravely and go on till you come to the end (Lewis Carrol still one of my favourite authors). Who better to take advice from than the king of Wonderland? My first fit happened when I was around eight years old and I can remember that day clearer than any other. I was playing football in our back garden with my father and brother and having a really good time. I think for a change I might actually have been doing moderately well – I may have even scored a goal although memories of the time directly before the fit are vague and mixed up.

I don’t know exactly when I started feeling strange, it just sort of happened. All of a sudden the ground seemed floaty, I felt dizzy and light headed and the world didn’t feel quite real. Over the years this is a symptom I have learned to recognise – that sense of deja vu and the sudden feeling that maybe you are dreaming and haven’t actually woken up yet. I can remember very clearly talking normally with my father and brother laughing at some funny remark. I remember sitting down on our slide till the ground stopped moving. Of course none of that happened. What actually happened was that I turned sheet white, stared blankly into the air and dropped to the ground convulsing. Or so I am told, never having any memory of this part of a fit and strangely enough never having seen myself from an outsiders vantage point.

That was the beginning of it all. I have no memory of ambulances, of riding to the hospital or indeed of being in the hospital. I do remember that being in the hospital as a kid, when you are not physically ill, is a bit like being on holiday where everyone is nice to you. I remember being happy when my parents came to visit. I remember playing computer games sitting on the bed of the most wonderful strongest girl I have ever met. It was only later that the consequences of having epilepsy as a child began to sink in. Trips to the hospital for tests- because there was too much electricity in my brain mum said. Continual blood tests to check I was taking my meds. For years I believed that those blood tests had some grand importance, finding out that they were merely checking the levels of medication I felt furiously indignant – as though my parents weren’t bad enough!

After a while I did begin to feel like the freak of the family, a china doll that had to be wrapped in cotton wool trapped in a glass box – in case I smashed. You will have to excuse me if that seems over dramatic but until you face such continual treatment you can not understand. However now that I am an adult I can understand that it was both well-meaning and good for me. Then there were the constant reminders, little phrases automatically slipping out of my parents mouths such as “remember your condition” or “we don’t want you having one of your funny turns.” I am sure that to a parent funny turn sounds much softer than seizure or even fit, but for me it was just more proof that I was different from everyone else.

My parents tried desperately to let me do everything that a normal child would do. I went swimming, rode a bike, went horse riding, but there was always that fear, that ‘what if’ in their eyes. A fear that was eventually catching becoming all mixed up with the fear of losing control or worse being seen in that state. Then there was the fear and the terrible guilt of upsetting my parents, of making their condition worse. As a result, already a naturally introverted child I became more so – a frightened rabbit and ironically a prime target for the bullying I was trying to avoid.

 

This was my childhood as an epileptic and I want to emphasise that ninety percent of the time it was a happy one. Epilepsy does not have to stop a child from living their life like any other and the same goes for the parents of children with epilepsy. In the majority of cases epilepsy can be controlled and if this is the case for your child don’t waste your time living in fear and don’t let them live in fear either, you may make that final ten percent a happy one too. Yes my parents maybe were a bit too clingy in ways, but can I blame them, would I act differently? I think it is important for people to understand however how epileptic children can feel so they can understand why it is they act up at times. And to better understand the journey that epileptic adults have taken to get where they now are.

Zoe

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