Epilepsy and Society – Mutually exclusive??

Hell no!!

I am a fully paid up member of society and I’m an epileptic. I work hard, I pay taxes, I travel, I go to the gym (note I didn’t say I work hard at the gym!), I swim, I socialise at the cinema, pub, restaurants… I made a conscious decision to make sure that I acknowledge epilepsy as a part of my life, but to try not to let it be my life. It’s but a piece of my jigsaw.

So, there was this time when I was at the pub with family members and I had a fit. Did not see that one coming at all! That was way before I learned to recognise the signs. I still miss the pointers, but I’m getting better. I don’t get a strange aura, I don’t smell strange smells and I don’t get a strange taste in my mouth. These are all warning signs for some who suffer with epilepsy, but not me. The signals for me are too easily confused with the normal feelings of fatigue and even the onset of a simple cold. I don’t see the fits coming a lot of the time. And headaches? Well headaches terrify me. So, back to the pub. I remember being at the pub. I don’t remember the episode itself. What I do know is that fitting, whilst sat in a wooden chair at a wooden table surrounded by glasses and strangers is not the most comfortable place to be putting on the moves…Not for me, not for my family and not for the punters and staff. This was the first fit some of my family members had seen. I know that for sure. This was the first fit that 99% of the punters and staff had seen, only an educated suspicion. I think there was a lot of brandy sold that night although my family, the ones who didn’t go to the hospital with me, got free drinks….

I suffer with Grand Mal seizures or, as they’re more commonly known these days, Tonic Clonic fits. These are the type most people think about when the word fit or seizure is used. There is the fall, the shaking and with me, generally, a great deal of swearing! Some people appear to foam at the mouth and some people have toilet-type accidents. The potential for humiliation and injury is huge. To be honest, I’m not scared of the physical side, what I fear most is the emotional anguish that follows an episode. For those who witness my fits, it’s all about the physical. They see the pain I’m in, they see the damage being done to my face and body and they know they can’t prevent it.

For me, epilepsy is viewed in a very similar way, by society, to depression; if you can’t see it and touch it then it doesn’t exist. There isn’t a bandage or a scar or a cast that you can point a finger at and say “that’s what’s wrong”. It’s silent and it creeps up, but it’s no different to breaking a bone. And, for the person living with it, it is very very real. I’m one of the lucky ones. Where I work, most of the people are exceptionally supportive. They may not understand, but they try. Most of them don’t change their behaviours towards me and the ones who do, well if my epilepsy is a problem for them, then that’s exactly what it is – their problem. I know in my heart that some people treat me differently after they’ve witnessed me fitting because they don’t know what to say, they don’t know how I’ll react, they don’t know whether to mention anything at all for fear of upsetting me. It’s got nothing to do with whether they care or not. It’s the same with depression and, as I’ve said before, my epileptic episodes are always followed by a bout of depression. So what starts out with subtle changes in my personality and actions, so subtle they are often missed, that’s followed by a few minutes of shaking, can take months for me to get over. I try to act normally after a fit because it makes other people feel better, feel reassured that everything is ok. It’s a lie. I’m struggling massively with the internal turmoil. My life stands out to me in its stark reality. I feel like I’ve failed in a million different ways. I feel scared and lonely, yet I don’t want to see people. I know that I should see people, because those who are close to me love me, care about me and want the best for me. I need to be surrounded by these people, but I push them away. I retreat into a darkness that is all encompassing. My confidence is non-existent. When I slowly start to emerge, one or two more people have fallen out of my life. I don’t blame them. I don’t make it easy. But for those who are still there, be it in person because we live in the same city, at the end of a phone or just a like on a FB comment, I hold them all the more dearly. I probably don’t tell them enough. Everyone has their demons and over the years (decades) I’ve tried not to judge. My life is all about me, but your life is all about you. I sometimes fail in my desire to be non-judgemental, but I’m significantly less so, than I used to be. I’m a good person at heart, but I’m sure not a saint!

So, does suffering from epilepsy mean that you can’t be a fully functioning member of society? Does it mean you can’t go out and follow your dreams and goals? Absolutely not. It’s a choice though and each epileptic has to make the decision to live life or let epilepsy live it for them. I do realise that there are different types of epilepsy and differing degrees of severity, again, I’m lucky, I don’t suffer hundreds of fits a day, I don’t have to wear head-protection, I don’t have to be constantly supervised. I’m grateful for that. I’ve jumped out of an aeroplane at 12’000ft, I’ve done a cage-dive with great white sharks, I’ve discovered that quad-biking is not my forte, I enjoy watersports, I’ve trekked in a tropical jungle, I’ve travelled fairly extensively actually, both with others and alone, I have a responsible job, I own a home, I own a pet. I’m not allowed to drive, but I do have a disabled-persons train card! I have epilepsy. I am a member of society.

When we were kids, my brother broke a snooker cue over my head. I found out relatively recently, that he blamed himself for causing my epilepsy. I don’t think he does anymore, but we’ve never talked about it, so I can’t be sure. But, if you are happening to read this blog, you didn’t cause it. It’s a little quirk of nature that makes me super-special. But, brother dearest, you really shouldn’t have hit me with the snooker cue…..

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