A few months back, I was made aware that ALL epileptics are offended by the term epileptic and could I please refrain from using it, but instead refer to 'them' as persons with epilepsy. Okay. First, in all fairness I did not know this, so I am actually glad to have been made aware of it. I am happy to call someone a person with epilepsy if that is what they prefer. However, this was the head of an epilepsy organization I wrote to (I will not name them because I do think her heart was in the right place). In my letter to her I was asking about volunteering in Europe and Britain, and subsequently told her about my epilepsy. I believe the most offensive part to me was that she wrote everything to me in a very polite but personal tone until, she decided to tell me what not to do. That group of people she was referring to included me, yet she decided to use the third person. I felt it to be unnecessarily rude. I also think that no one should tell me what to call myself. Nor should anyone who would like to be called a person with epilepsy. Whatever you feel fits and is comfortable, should be what you go with. People should respect that, if they don't...tell them to go pound salt. (NOT that I have an opinion)
My reasons for preferring epileptic? Epilepsy has brought many things to my life, good and bad. Let's see, to start... we've got; pain (physical and emotional), anger, fear, worry, anxiety, confusion, memory loss, medications, bills and more bills. I have also been privy to a prejudice I had only hated from afar before. And I have been shown injustices from the inside, injustices that I had heated debates about but still was on the outside... now I am seeing it from the inside. I am one of those people I was self-righteously defending, in my idealistic youth. However as much as I hate to admit it, in certain specific instances... I can see the other side has a point as well, I don't like it, but it is true. Epilepsy has also brought discomfort into social situations, although I must admit, on this one, probably more for the others around me than myself.
Along with all these bad things epilepsy has managed to bring with it some pretty wonderful things too! And for that, I am eternally grateful. I was lucky enough to get a chance to rebuild a relationship with my parents, that I mightn't have gotten otherwise. Out of instinct, or need for survival, call it what you like, I learned how to ease the tension from my body, and calm myself down. This lessened my stress levels which lessened the chances of more seizure activity. Those coping skills however, have served me well, in many other aspects of life. It has also made me realize how quickly our lives can change dramatically. In one second we can be gone from this earth, or 100 times worse off than we are now (and that goes for everyone). This is why as much as I can I live for the day.
However no man is an island, and this is real life. I do the best I can. But the absolute, most amazing thing epilepsy has helped me with is my resolve and strength (if that's not to redundant for you). If life throws something at me... I know I'll get through it. And apparently life loves to throw crap... who knew, worse yet I'm the freakin' outhouse! (I have a feeling a ginormous amount of people... yes ginormous...probably feel like the outhouse... we can all feel each others pain) Don't get me wrong, I'm not saying things are easy and bad stuff just bounces right off... I just am strong enough to deal with it. Some things might take a day, a week, a year. As long as I remember what I've been through already, that I know I can, that I am willing to work through it, and that I don't want to feel bad.
It is not that epilepsy alone did any of this to me or for me. As far as the strength goes.. it helped me find it within myself. It could have taken a much longer time to find it otherwise. In that case I might not have done so many of the things I've done, for lack of courage alone.
So, looking beyond the fact that linguistically 'epileptic' is exactly the correct word for someone who has epilepsy, I am also happy to associate myself with it. Epilepsy is a large part of who I am. Just as being a woman and a dork are large parts of who I am. I have many facets to myself that I find to be large parts of my very being. Are any one thing of those who I am? No. I am all of those things.
I guess that is where the problem lies. A lot of epileptics don't want people to look at them and be thinking, "the epileptic girl." Well, I understand that. I wouldn't want someone just picking one aspect of my personality and deciding for me that it was all I am. However, I don't believe that most (I'm sure there are a few... but aren't there always exceptions to the rule) people once they find out don't really care all that much beyond morbid curiosity. In fact sometimes they ask a couple of questions then they really seem annoyed with themselves for getting into the conversation, because they don't really care enough about it to learn about it. That was point one. Point two, a lot of people will forget, because you are not that important to them. Now points one and two are sad... but it's reality, it is a pretty cold world out there. Point three, this is tougher, because alot of times this happens to people you know better or are around alot. One of these people just finds out you are an epileptic. They say something to the effect of, "ohhh, I didn't know you were an epileptic." I know people that get upset with this. I don't. Yes there are some people who will now have your face next to the word epileptic in their head, always... not many. I think most people, don't realize they are saying something that could be taken offensively. In fact I think they are trying to do the opposite in an awkward way. People never know what to say, they don't know how you feel about it. I can't imagine that anyone who is reading this epileptic or not, has never said anything that might be offensive to someone or some group. You probably didn't even mean it, but somebody could have taken it in a bad way.
So for me, I feel the only way to give the word power in a negative way is to let it hurt you, one. The other is to let it have power over you. I use the word in a positive light and I think anyone who has a problem with that can take a hike. If you are offended by it and are an epileptic, then don't use it by all means... but to be fair, don't condemn others for wanting to.
I think I have given far more reasons and opinions than I intended. But my reasoning was simple. When I do write stories about epilepsy, they will generally be in first person. Therefore, I will probably be using the term epileptic. I am NOT doing this to offend. Now however, you know my reasons.
thank you... and good fortune
kimbersfrog
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