The next day a similar type of seizure occurred, only this time, I was in the middle of talking to a friend online and through a web cam when I suddenly couldn’t understand what was happening and realized that I couldn’t type back without making serious errors. In short, I was typing gobbledy-gook. I save an archive of instant messages, and when I went back today to read them, they were incomprehensible. I kept trying to explain that I thought I might be having a seizure, I now knew that much, but the words didn’t come out right and like many people, he thought perhaps I had taken drugs, which for the record, I had not, but then, he didn’t know me that well and wasn’t here, so who can blame him, right? Epilepsy remains invisible in some ways, so unless you are on the floor convulsing, as long as your eyes are open, no matter you have no clue what is happening, you seem sort of okay. Not really okay, but sort of okay. I did eventually manage to tell my friend in some way that I was having a seizure and he was good about it, but that was it. But I cannot tell you the countless times I have been accused of being an addict or given the medical brush off even by doctors who did not take the time to find out that I am epileptic, not a heroin addict etc. In this day and age, I find this utterly unforgivable. Say what you want about me, but at least make it true. I cannot blame this friend for not knowing of my epilepsy – I had never made it clear because I never expected it to rear its ugly head. But what I can say and this is a general statement, is that there have been times in the world when people have mistaken me for a junkie and that not only hurts me, but hurts the cause of anyone with epilepsy for it sets the clock back years and years.
After that awful Friday, the next thing I remember is that following Sunday morning and waking and telling my husband how great I felt for the first time in ages but that a tidal wave was coming and so we had better be careful. I was certain of this fact and nothing he said could change my mind. He reassured me no tidal wave was in the distance or anywhere near, yet nothing would convince me otherwise. No, I told him. You are wrong. A tidal wave is coming. That was at 10 o'clock on Sunday morning. By eleven o’clock I was on the floor of the living room seizing. The last thing I remember is watching a film with Morgan Freeman and Ashley Judd. After that, my mind went blank. An entire day from morning to night passed and I cannot tell you anything of that day except perhaps a few snapshot details here and there from when I would vaguely regain consciousness before slipping back under, as if someone had drugged me with a mask of ether.
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