Tuesday 24 January 2012

"So what is it like to have Epilepsy?" / "I wonder what it's like not to have Epilepsy?"

I guess the unusual, although not unique thing about my experience of Epilepsy, is that I have had the experience of having Epilepsy since the age of 3, then had the experience of not having Epilepsy at all from the age of 14 after surgery, before the condition re-emerging when I was 19. During those periods I've had uncontrolled frequent Epilepsy, been fully healthy and now currently have Epilepsy controlled through medication. So I suppose you could say I've experienced the 2 extremes of the condition and am somewhere in the middle now.

The odd thing about when I had Epilepsy as a child, was that I frequently used to wonder what it would be like to be a 'Non-Epileptic' as then, for as long as I could remember I had 10 to 15 Petit-mal Temporal Lobe seizures a day and an average of 3 full blown seizures a week.
Sometimes I used to sit and think for long periods what not having Epilepsy would be like? What would it feel like to be normal, what would change, what would it feel like not to have the cloud hanging over my head that I would have another seizure very shortly?

It seems odd that I would think the polar opposite of what the more common question would be - "What is it like to have Epilepsy?" Well by answering the latter, it might help explain why I used to think about the first question so much as a child.

For me, the Petit-mal seizures I experienced as a child, are completely indescribable, it was such an alien feeling that I couldn't say properly, that they were like, well anything. It's a bit like how people have an emotional attachment and enjoyment of music. You can't explain what it is about the sequence of notes in a piece of music that make you enjoy it more than another song, you can only describe a broad feeling or say that you like a particular hook or melody for example. For myself and the many other people who still suffer from TLE Petit-mal seizures, there is the same problem. The closest I could get to describing them is a combination of indescribably powerful, uncontrollable, non-specific fear and a sense of deja-vu.

I hated them.

It's difficult to remember exactly what it felt like then, to overnight not have the cloud of my Epilepsy hanging over me, because apart from it being over a decade ago, I wasn't sure the surgery was going to be successful and so it was a very gradual change of experience. I suppose again it's impossible to describe, I guess it just felt normal, but one person's 'normal' is very different from somebody else's 'normal'. If I was to think really hard I would describe it as a very gradually increasing sense of feeling free from something. Metaphorically, I guess it was like being in a set of chains for 11 years and someone giving you the key - you can't really come to terms with it overnight if there is a threat someone might put them back on you.

The reason I wanted to talk about my experience as a child, other than to explain what a certain kind of seizure felt like, was to highlight how lucky I feel now.
There's a reason that despite some people saying I am an inspiration from time to time, with reference to my first Race Across America, I can't help but downplay it. It's because the true inspiration that spurred me on when I was at the bottom of a hill on my bike in America, was thinking of the people who still had the Epilepsy to deal with I so hated. In many cases I saw examples of much worse Epilepsy than even when I had uncontrolled seizures. How these people deal with their Epilepsy not only in their childhood but into the challenges of adulthood, I will never fully understand. To those people, based on my own experience as a child, I can only say this:

You are amazing and the real inspiration. Nothing I ever achieve will measure up to how you handle and conduct your daily life. But if I do achieve what I am hoping to achieve in the next 2 and a half years, know that you were the reason I did.

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