A few weeks ago, I woke up a ways from my house only to discover that I was half dressed, wearing only slippers on my feet and that the ground was covered in snow and I was wearing a tank-top and a short skirt. I had no idea what I was doing or where I was, only that I needed to high-tail it out of there and find my way home, which I sort of did but once there, realized, in my confused state, that I had locked myself out of my house which still now, back to a deeper confused state, I decided I needed to break into and I did this by jimmying the door, though I couldn’t tell you how, only that I did get back inside and once there, realized that I was very confused indeed and needed to lie down.
Nothing made sense to me on that day or that afternoon and I didn’t think for a minute about epilepsy because the last thing you think when you’re having a seizure is, “Oh, I’m having a seizure.” You don’t think to call 911. You don’t think much of anything except confusion and terror. I went to bed and hid under the blankets. The rest of the day is a blur. This is what it means to be epileptic.
Hi, my name is Sadi and I am an epileptic.
It is like a dirty secret. A confession. A thing I should be ashamed of, yet I have to tell you, I refuse to be ashamed of this. I refuse to accept the notions of the ignorant who would lump epilepsy in with mental illness or frankly, even discriminate against those who truly do have mental illness because, although I myself do not, I can empathize enough to know that living with any chronic illness is hard enough. Look: I have great empathy: I see tons of advertisements on the television for so many ailments and drugs. Diabetes monitors. Arthritis drugs. Gastric upset etc., etc., and not once have I seen an advertisement for epilepsy. Nowhere. Not in print, not on the subway billboard and certainly not on TV. Why is that? Does the notion that we belong in mental asylums still persist to this day? That epileptics are “mad,” “stupid,” and so on? Haven’t the statistics born it out again and again that if anything, the reverse is true. And shit, while I’m on my soapbox here, let me just add that with a society that treat us like this, it’s no wonder that thirty-five percent of epileptics will attempt or will commit suicide, particularly those with temporal lobe epilepsy (in the creative center of the brain) like I have. Van Gogh chopped of his ear during a seizure. He also killed himself. There are countless others and now, now that they are long dead, we revere their work, we hang it in a gallery, we dole out the praise, we bow down to the artistic gods, when in their own lifetime, we barely paid a sous of attention to these great artists and writers because we were too busy pigeon-holing and discriminating. Does that strike anyone other than me as just a little bit screwed up and unfair? Do I have to really wait until I’m dead to get any great reward, or will my work be recognized in this lifetime if it all? More to the point, does my work merit recognition at any time? Big questions all, but we ask them of ourselves constantly, and among epileptics, the sad phenomenon seems to be to recognize in the post-mortem.
Article comments
1 - Lisa McKay
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.
2 - sadi
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
3 - Jay Barnica
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...
4 - sadi
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.
5 - SFC SKI
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.
6 - sadi
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
7 - Shark
Sadi, as always, excellent writing -- and I'm sending good vibes your way. Hang on to your power.
xxoo
M-Shark
8 - sadi
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