Epileptic vs. Persons with Epilepsy

          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

Gravity- a warning sign that I couldn't read....

GRAVITY...... (This might be the last epilepsy post for a little while.... )

   

         I was in my senior year of high school. Like most kids that age I was stubborn, opinionated, and all but sprinting to get out of the town I grew up in to experience somewhere, anywhere new. However, I was not like everyone else. I am not referring

to my innate ability to alienate myself from anything resembling a clique- I was good at being myself whatever the consequences, it's a wonder anyone stuck by me at

all. What no one knew however, was I was beginning to have these "things" happen to

me. Now at the time, I had never had a grand mal, I knew absolutely nothing about epilepsy, and I sure as heck didn't know I would soon be diagnosed with it. What I knew, was my uncle was a schizophrenic. Schizophrenia could be genetic, and although 17 would

be early onset of the disease there was nothing saying that I couldn't be going crazy at 17. So when I started having these "things" I started quietly thinking I might, just might, be going insane. Every so often I would blurt out some sort of loud noise- which I had absolutely no control over but was fully aware of. Then there were the times I actually jerked a limb uncontrollably. Imagine that, you can see it, feel it, but you can't stop it. You can't even recreate it, not really. Then came the first full petite mal... however, I had no idea

what it was, all I knew was I blurted out something unintelligible, then fell and raised as if it were on purpose- all in front of the bathroom mirror (talk about a double whammy) and had no way to stop it. It only takes a second or two for everything to happen but the

fear remains. I sat there afterwards, purposely, reactively cursing a few times (I was 17)... thinking, 'this is it... I'm going crazy. How long do I have before I loose the real world completely.'  I should mention, that for about a year I had been having what I called 'gravity' fairly regularly. I would say to my mom, "I can't go to school I have gravity." Her response was, "I can't tell the school you can't go to school because you feel gravity." Pretty much there was this unspoken, 'What the heck is she talking about....', but to put it mildly I was a difficult teen. So I think it was passed off as me trying to get out of going to school. In a way I was. I loved school and being with my friends, but I was really freaked out by the fact that it felt as if there was an extra gravitational pull on my body to the ground... just I felt... well gravity. Like unseen tethers were uniformly pulling every molecule of my body at the same time with the same force towards the earth with stronger force than usual. If you don't know what's going on- it sounds not only ridiculous but a bit nuts... so I stopped

talking about gravity and didn't tell anyone about the other "things" that were happening. Until February. I had my first seizure. That was the beginning of everything starting to make sense. At least for a time I thought - I know what the problem is, I'll take my meds and I'll not have another seizure again- just like the doctors said. At least I wasn't going to loose the real world to a world that was only in my head.

kimbersfrog

An Invisible Disease....

AN INVISIBLE DISEASE (for all the other epileptics out there...)

   epilepsy is one of the many diseases in this world that you
don't see unless it's happening that very moment. you might see the
evidence afterwards, but like a chameleon these remnants could be
clues to a beating, a fall, or a car accident, there are endless
possibilities. this is why i call epilepsy an invisible disease. and while there
are advantages, all of the advantages come with a nasty flip side,
which i guess you could say of most anything. but it feels like a
petite mal- one moment you're walking along and quicker than you can
snap you're fingers, you've gone down to the floor and back up again.
and while harnessing that could make someone a phenomenal dancer the
reality is it produces huge amounts of anxiety, it's scary, and
although it's generally a physically impossible feat your body has
just pulled off, you're generally sore somewhere, and have probably
freaked at least a couple of on-lookers out. the dichotomies are
always there. one of the best things is you don't get that look you do after
a grand mal. every time someone looks at you, you know the look of, oh,
poor girl (boy, etc.)...all the various shades of pity, sometimes with disdain,
embarrassment,fear, disgust, anger, or some mix there of. that means
however, it becomes so much more powerful when someone you love has
just seen you have a seizure, and now you get one of these looks. i
know they can't help it, but... well, i can only speak for myself
here, but it can only make me feel more isolated than i already feel
after having a seizure. as anyone who has them knows (or even anyone
who has something long term that people closest to them can't fix or
completely relate to) there's only so much you, or they can say about
it. for me, after i've had a seizure, and actually confirmed that yes i
have had a seizure, although i need to talk about it, i need to cry,
there is nothing to say. there is no one to say it to. i have tried-
but i can't even think of anything to say. and no one really knows
what to say to me- they just keep looking at me that way. which is far
worse than not talking to anyone. so i lay alone, sleep off the
seizure lag, and thank the herky jerky gods for not killing me or
putting me in a wheel chair.