I Digress- Epilepsy Revisited

Everybody has something. One might have a birthmark, another glasses, somebody else might have a leg shorter than the other. Something. These are things people can see with their eyes. They are “normal” , everyday things. When one has something that is unseen like Bipolar and other mental issues, brain tumors  or in my case, Epilepsy, that’s when the fear sets in. Not from me, nope, I’m not afraid that I have Epilepsy. But, other people are because, well, they are mostly afraid of the unseen, the unknown. Isn’t that funny? Not funny haha, funny odd.

I remember my mom talking to my dad at the dinner table one night.

“Paul, I think Paula may be having some spells. I think I have noticed those little seizures in her.” That’s about all I remember of that. My mom took me to a doctor; a neurologist, who told her it could be a possibility since it runs in families. An appointment was made for me to have an Electroencephalogram or EEG – a brain wave test.  What I don’t remember is feeling afraid. I was escorted to a room, where a technician began combing and parting my hair, putting glue in it and hooking up little round things on my head. After all the electrodes were placed, the lights were turned out and I was instructed to close my eyes and try not to go to sleep. It was hard to keep my eyes still, but i was supposed to. I could hear the pencils marking the paper, showing what my brain waves were doing. On occassion, I could hear the technician circle the paper and scribble something, Soon, I would hear the technician say,”Paula, wake up- you have to wake up.” It sure was hard to stay awake while in the dark.

Clicks, next, I could hear clicking. “Now, what you are going to see will be some lights. some will go slow, then fast. Just keep your eyes closed and try to relax.” Strobe lights began to flicker before my closed eyes and it made me nervous and kinda scared.

Next, I was instructed to breathe through my mouth as fast as  I could- hyperventilating, she called it.

These two things have been known to cause seizures, so they want to make sure to test – just in case.

After the test, I was escorted back into the wood paneled waiting room. This appointment would take the better half of the day as far as I can remember. It was a long day and boring at that.I was glad I’d brought a book.

After a while, we were called into the Doctor’s office where he sat at a desk in front of us, whipping back and forth through the pages of what looked like a long book of scriggly lines. On some of the pages, the circles and scribbles I had heard the technician  writing were visible. The whole thing was weird.

eeg

So, even though the doctor couldn’t see many seizures, it was certain I had epilepsy. Petit mal kind (now called absence).

Now the bevy of meds, the trial and error began. Other than taking medication, nothing changed for me. I was the same little girl having the same fun I’d always had. There were side effects with some of the meds , so that had to be dealt with. Some made me sleepy, some made me angry, some worked, some didn’t.  I don’t remember it all, but my family was there for the long haul .

In junior high school, I had to take  medicine at lunchtime. Back then, you just carried your medications with you and took it when you were supposed to. I hated taking medicine at school. All the kids made fun of me. Suddenly, because I took medication, I was different. Suddenly, because I had seizures no one would notice in a million years unless I told them or they knew how to tell , I was game for fun making.When kids asked me why I was taking medicine for, I would tell them I had Epilepsy. I didn’t know  it was going to become the ruckus it was.

“What? Do you have FITS?”

“No, i just stare.”

No one could  see it. But, they had sure heard about it. Fits, huh? So seizures were called Fits? Whoa. A fit is, to  me, an archaic term from the middle ages or longer ago or something clothes do . I really detest that word.

I understand now, that people are most afraid of things they cannot see. Had I had a leg shorter than the other and a limp was visible, no one would pay much attention because they could see it, comprehend it. Not the case with Epilepsy. Yes, one is capable of having a convulsion (not a fit) and it is a scary thing to witness. How much better would it be for folks to read about and learn what to do should someone have a convulsion? That would be putting the fear to good use.

If you are not familiar with epilepsy, it is nothing more than a short circuit, of sorts, of the brain. With this short circuit, messages get confused and the seizures ensue.

seizure

It does not mean one is some kind of monster because they have it. It is a disease, an imperfection of the human brain. That’s all. It does not change who your friend is, what they stand for, how funny or serious they are-it doesn’t change their quirks or whatever that you love most about them. It’s not like that- unless it is not under control .

Whatever you do, please, please don’t call a seizure a fit. No one likes that.

I’d rather be told that I ‘flopped like a fish’ than told I’ve had a FIT. Yep, sure would.

 

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2 thoughts on “I Digress- Epilepsy Revisited

  1. I know you wrote this a couple years ago but I just started following your blog so I’m catching up. I remember when I was in my early 20’s there was a man who had a seizure while shopping at the store where I worked. It really scared everyone and we were concerned for his well being. Someone called 911 and the paramedics took care of him and transported him to the hospital. I have often wondered what could or should be done for the person who has the unfortunate experience of having a seizure like that man did while out and about. I had no idea there is more than one manifestation of the disease. Thank you for helping me to become more aware.

    Liked by 1 person

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