the status | epilepticus
Published April 04, 2005
I have lived with epilepsy my whole life pretty much, but in all that time I never really thought bout how it could really kill me. Yes, I had heard that it could, but it never struck me as real in any way. It always seemed like something that happened to other people. It was only after the seizures that I realized how fortunate I had been. Still, one doesn't want to get too heavy about things; it is what it is and I am here, for better or worse and I am alive. If there is any message in all of this, I suppose it is education. Even in the hospital I felt like I was somewhat treated like an idiot to some extent. Now this could just be my post-ictal state - my after-seizure sulkiness, and I wouldn't doubt it because after a series of seizures like that, who wouldn't be in a bad mood. But it still struck me that at least one of the residents (read: not yet a doctor but a student doctor since this was a teaching hospital), was treating me like I was barely out of the third grade. I have to say, it is more than a little bit frustrating to know that you could intellectually kick somebody's ass, but just not on this day, or maybe you never could, but it hardly seems to me like a fair fight and frankly, that's what it feels like - a fight.
It often feels to me, and I'm sure I'm wrong about this because there are surely other prejudices that I know of but it still feels emotionally that epilepsy is one of the last acceptable prejudices. I have lost jobs, lost friends, I have lost memories and I have lost relationships. It is hard for me to fathom the loss that epilepsy has had on my life when I really think about how different it could or would have been had I not been epileptic. I have to say, it is a hard thing to conceive. Epilepsy is such a huge part of my identity.
But even I know that there are good things about epilepsy: that there are transcendent states of being, of ecstasy, of incredibly creativity, that it is my epilepsy that for the most part, enables me to write as much as I do and in the particular way that I do. For better or worse, I am quite sure that if I did not have epilepsy, my whole world and landscape would change and my world would be a changed one - that I may not even be a writer and artist. A thing that is hard for me to fathom. I look at the long list of great names of people who had epilepsy and that is of some comfort to me. I thank god I live in an age where there is treatment for epilepsy and I consider myself incredibly fortunate that it is not a hundred years ago.
- the status | epilepticus
- Published: April 04, 2005
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- Section: Culture
- Writer: Sadi Ranson-Polizzotti
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Comments
thanks, Lisa:
I imagine by now, people are weary of my epilepsy stories, yet this last seemed to me especially poignant since it was really walking a fine line between living/notliving and perhaps even being brain dead etc had my husband not responded so quickly or had it been a weekday insteady of a week END. If it had been Monday instead of Sunday, i would have been alone and i dread to think of what would have becme of me. All things told, i am fortunate that things worked out as they did.
Yes, it is appalling that people can still be so ignorant, but that's life. I think some public awareness advertisements would go a long way to helping the cause, the way they have for diabetes or any other ailments out there, and it seems like there are many. Epilepsy is like the poor cousin that nobody wants it seems. I wish the Epilepsy Foundation did some real advertising to raise awareness of the issue; it would help a great deal.
I'm glad you found and read this. I know it's rather long for the web, so i'm grateful to you.
Be well, and spread the good word.
sadi
Nice piece, but I was really turned off by your comments about mental illness in the fourth paragraph. A fear of being "lumped" in with mental illness suggests the same sort of ignorance and prejudice that you're railing against...
dear J;
i apologize if i was unclear in any way. what i was trying to say, and perhaps this did not come across was that epilepsy is a neurological illness and that IF people are going to/must stereotype, then i wish they would at least get it right. I find it EQUALLY wretched that those with mental illness are typecast - so we are in the same boat in this way. But the distinction is important because the treatment differs in each case, and that is really all i am/was trying to get at. I once had someone who was ignorant say to me, "oh, you're epileptic; that's okay because my ex girlfriend is borderline..." as if the two are AT ALL related. Both are hard, no question, but what bothers me is the ignorance that allows for such statements. I'm not saying and was not saying that one is worse/better than the other, only that they are very different and you can't put them together.
i apologize if this was unclear or if did not make this as clear as it is in my own mind. it is a hard thing to spell out in writing, but i hope i have clarified some more here. The difference, ultimately, is in how you will be type case, and if that is a MUST (and that IS sad)then at least they could get it right... in either case, it is equally wrong.
be well,
s.r.p.
One of my subordinates was diagnosed with epilepsy, which is a shame because she is so young and it will mean an unexpected carrer change for her. The good thing is that her meds really have kept her conditon under control, and that all her coworkers really went out of their way to find out facts about her condition and come up with ways to properly respond to symptoms and actual seizures. I am glad that I work with a lot of poactive, team oriented people, most of whom are already trained in first aid as well, I wish more people would at least learn that much. I hope that all of this will prove to be equally treatable for you.
rob, thanks again;
thankfully, i am now on a medication that has completely stopped the seizures in their tracks. I have had NO seizures since leaving the hospital and i think it will stay that way for a long time. I pray so. I am now looking for fulltime employement (content writer/technology writer -software and medical). If you know anyone who is hiring, let me know ;) and wish me luck... the search begins again.
no doubt, i will land on my feet as i have so many times in the past.
be well, and i wish the very best to you and your teams sounds terrific. if only my last job had been so proactive and caring. instead, they simply let me go without word or cause and Yes, i could sue them, but frankly, it's a waste of time and i'd just as soon as move on. So i do.. onward!
Be well,
Sadi
Sadi, as always, excellent writing -- and I'm sending good vibes your way. Hang on to your power.
xxoo
M-Shark
all vibes from Shark are most welcome! thanks, babe... will hold onto them and hope for the best. fingers crossed and stay in touch, why don't ya...
rock on.
sade







Sadi, I have to say that it is appalling that people still hold such feelings about epilepsy in this day and age, when, presumably, we know better. I think that epilepsy, because it exists in so many different forms, is not well understood by most folks. For example, I have a friend with epilepsy who hasn't had a seizure in years. The best teacher I had in high school (a million years ago) came to teaching late in life because she had epilepsy and was terrified of the thought that she might have a seizure in class. Fortunately for her students, she responded very well to whatever medication was in use at the time, and found the courage to enter the classroom. Your decision to share your story will certainly serve to educate all of us. Take care, and thanks for writing this.