the status | epilepticus
Published April 04, 2005
I woke up late on Sunday, at about 5:15 or 5:30 p.m. at Brigham and Women's Hospital in the Acute Care Unit surrounded by nurses and doctors and my husband and with an IV in my arm into which someone has just found the cure to what had apparently been "status epileticus" (seizures without interruption, in my case for over six hours), and the cure this time was Dilantin. Apparently, many other drugs had been tried. An ambulance had brought me in and tried Atavan in an IV to no avail, but I remember nothing, only waking up in the E.R. and being very frightened. I remember not remembering. I remember not even knowing who I was or who my husband was. I remember the electrodes hurting my head and how it felt like a thousand stinging bees putting their stingers into my skull and how afraid I was and how I wanted to just be set free or to run but nobody would let me. I remember terror.
After that, it was a long and slow recovery with many tests that included simple equations that I was unable to complete. My brain had taken quite a beating and could not even recite the months of the year or do simple math. To my credit, I did remember my birth date, the one thing I did recall, and so to every question thereafter, the answer I gave was simply the year of my birth. It was like a record stuck in the groove and nothing could get me to skip. I said it over and over again until I was given more medicine in my IV which made me laugh a lot. I was wheeled around the hospital after that giggling and saying my birth date which for some reason, struck me as very funny (actually, it's not funny at all and I'm getting old, but never mind that).
One of the problems with epilepsy, among other issues, is that for the most part, it can be largely invisible. Unless you are actually having, as I did have on that day, a series of grand mals, you may appear to be fine. You may have complex partial epilepsy, myclonic jerks, and the like which certainly affect consciousness, but that don't do you in entirely. So you appear to be awake even though you are not sure of what you are doing if sure at all. It is rather like being on drugs and really, one gets tired of being accused of being on drugs. I know I'm tired of it, and surprised when even a friend though this of me. But such is life; we are surrounded by ignorance and I write this now not only to share my experience but perhaps out of some screwed up civic sense of educating people (as if anyone cared, which I truly doubt because unless it is happening to you, this is likely quite boring).
- the status | epilepticus
- Published: April 04, 2005
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- Section: Culture
- Writer: Sadi Ranson-Polizzotti
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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
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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.