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Tuesday, May 28, 2013

Ramblings about my epilepsy

This is something I wrote the night before having that last partial seizure a couple weeks ago. I never published it because I was still writing. But I think this is enough for now.

This and the part that says "UPDATE:" were added tonight... after the initial writing.


Not many people look at me and immediately think "there's Randy, he has epilepsy." But truth is... I think about it every day.


I'm forced to think about it - I take medicine twice a day.

I choose to think about it - I have this internal need to know how and why things are the way they are... and this is the one case where I have no idea. So I am constantly analyzing myself. Studying my own behavior, noticing my body's reaction to certain situations, and my own conscious reactions to situations.

I need to think about it - I want to always make sure that I'm safe in any situation that life throws at me. Therefore, when I'm driving I'm often thinking "what would I do if I had a seizure right now?" When I'm at work I'm thinking "What would the people around me do if I was to have a seizure right now?" and when some external stimulus is thrown my way that I'm not used to, and I suddenly feel a sensation that I'm not used to, I'm forced to think "is this an aura, or is it something else?"

I'm a better person for thinking about it - I am constantly trying to improve myself, to prove to others that I can do just as much as they can... and in many cases, more than they can. Not because of my epilepsy, but despite my epilepsy. I've said before, that I use it as driving a force. I push myself to prove to myself and others that I can and will thrive in life.



Most people don't realize how often I have to remind myself that I have epilepsy. Or how many times life chooses to throw me a subtle reminder.

Since my seizure last summer, I have been aware of every little unexpected movement in my body. It was the first time I had ever had a partial seizure. The first time that I was conscious and aware of EVERYTHING despite the fact that I couldn't completely control the right side of my body.

Since then, I have had a couple of occasional muscle twitches. Probably nothing unusual... the muscle is overworked, or something moved just right in there to force it to move unexpectedly. But every time that happens, I do a full inspection of myself. Not physically, mentally. I think - is there anything truly unusual going on, or is this just a muscle twitch? What do I need to do in this particular moment if this is an oncoming seizure? Did I have an aura and not recognize it as such?


UPDATE: I now think that some of these may have been partial seizures. Probably not all of them, but at least a few. Especially any that may have been preceded by a ringing in my right ear


Most of you reading this have no idea what it's like to have such thoughts, and you never will. However, this is my daily life. So much so that these thoughts just happen out of instinct. I don't make a conscious decision anymore to think about my surrounding and analyze my best option in the event that a seizure were to occur, I just go through that thought process out of pure habit. Almost like you might walk into a room and take off your shoes, or hang up your coat. I walk into a room and make a complete assessment of my surroundings. I come up with a plan of where to go, or who to talk to if something happens, and I put forth no actual effort in doing so... it just happens naturally.



The craziest thing about all of this... I don't even have very active seizures. I am forced to think about my epilepsy multiple times a day, and seizures aren't even a very active part of my life. I can't imagine this process in someone who does have active seizures.

Or maybe it's just me and my crazy brain. I am a very detail oriented, very logical, and process oriented. If I don't have a process to follow, I create one. And that's what I've done here. I've created a process to keep myself safe in every possible situation, in every possible location. But of course, no process is flawless. If some very real danger were to present itself, I may not be able to keep myself safe even without having a seizure.

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