Living Within Epilepsy

Monday, August 26, 2013
3:21 a.m.

Modern science believes that we live in a fabric of space-time with at least four dimensions: three space dimensions and one time dimension. There are additional proposed theories, such as M-Theory which believes there are 11 dimensions, but for the purposes of this post, four dimensions will do.

What modern science does not take into account are dimensions of biology. I’m a shotty scientist on a good day and I took one year of biology my freshman year of high school, but I believe my theory, while perhaps completely nonsensical, is kind of cool. What if there is the “water dimension,” or the “sex-drive dimension” that can be observed in all organisms? And then what about higher dimensions in higher-level organisms? Sub-sex-drive dimensions? Dimensions of acceptance? Dimensions of disease? In this proposed theory, all biological dimensions would spring from the Base Dimension – energy from the Big Bang. For example, the Base Dimension would lead to the creation of the Quark Dimension which would lead to the Atom Dimension (I’m skipping a lot of intermediate dimensions so as not to overload the cloud storage of the servers Blogger is run from). From the Atom Dimension, Hydrogen and Oxygen could make the Water Dimension. In a COMPLETELY oversimplified view, the Water Dimension could combine with the Carbon Atom Subdimension to make up the Organic Compound Dimension, which could lead to the Amino Acid Dimension. Billions of years later, the Amino Acid Dimension could have developed into a trillion other dimensions ranging from physical ones like the Homeostasis Dimension to emotional ones like the Love Dimension. Of course, the Water Dimension would always be explicitly required, and every dimension contained within an organism stems from a long chain of previous dimensions. For example, the Apple Dimension stemmed from the Photosynthesis Dimension 2.2 billion years ago. It’s like a big family tree (no pun intended!) of dimensions. By now, I’ve realized that my theory is completely unpractical.

But think about it this way. We all experience the world through these different dimensions I am talking about. Some of us are introverted, while others will do anything to show the world how fantastic they are. Some people are asexual, most are bisexual, with the majority on the heterosexual side (I hesitate to exclusively use homosexual and heterosexual exclusively because love is not black and white).

I have generalized tonic-clonic epilepsy, a subdimension of epilepsy within the mammalian brain, and it’s definitely changed my life. The changes are always dynamic, always growing and diminishing, taking on new forms while abandoning old ones. After my first seizure, I was terrified of going down stairs. Now, I don’t really care about going down stairs because I know that I’ll probably survive even if I break a leg or two. I used to be terrified of death, but after experiencing numerous seizures, death seems a lot less frightening.

People ask me all the time what a seizure is like, and I’ve always had the same response. Having a seizure is like, at least as well as I can hypothesize, drifting off into death without knowing it, and having a slow, slow increase in consciousness. Each time I have one, it gets harder and harder for me to give an accurate description of what it would be like. There is no “in between” mental state. And I don’t get auras, so I have no idea a seizure is coming. 

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Wednesday, August 28, 2013
7:23 p.m.
I may have jinxed myself Sunday night. I think I had a small seizure alone in my room on Monday, and I had a much bigger one yesterday while I was running by Husky Stadium. I’ll get to that below. First, let’s pick up where we left off.
Often times, I’ll be in denial when I first regain consciousness after a seizure. There’s something very unsettling about being told you have just had a grand mal seizure. And it just seems so hard to believe when I have no recollection of it. Many times I’m later in denial that I was in denial because there is a lag time between me regaining consciousness and me actually being aware of what’s going on. It’s very strange. I wasn’t in denial yesterday though… I felt like I was at an unusually high risk for a seizure because I was dehydrated and decided to go on a ~5 mile run anyway. Definitely a lesson learned there. I sustained some injuries from collapsing onto a gravel road while running, but I’m doing fine now. 

The denial generally fades away with increasing consciousness and when you see the injuries sustained from the seizure if you had any. For example, I have some gashes on my left hand and face and my left arm is messed up… I assume I just fell on it. And then there are the headaches afterwards… worst headaches I’ve ever had… barely tolerable with even multiple hydrocodone acetaminophen pills. It may have been worsened from a concussion I may have received when my head hit the ground. I know it hit the ground because it was covered in dirt when I came too and I had some bumps and bruises on my face. I almost got a black eye… the bruise was just a tad off. Believe it or not, I’ve been yearning for a black eye. Black eye = street cred.

But the point of this post is not to make people’s hearts break for epileptics. Heartbreaking stories are generally bad… whereas heart-fixing stories are good. And the wonderful thing is that there is a lot of hope for epileptics. Drugs are becoming more effective, scientists are continually making strides in their knowledge and understanding of epilepsy, and society as a whole is becoming more accepting of epileptics. My great aunt had epilepsy that was characterized by frequent absence seizures, and it was something that was never to be spoken of in the family. Now, I freely talk about… even joke about… my epilepsy with friends. I know not every epileptic has this optimistic of an outlook, but hey, there’s not much I can do about it, so having a negative outlook would only make things worse.

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I never quite understood why famous people who had a certain disease would suddenly donate so much of their time and energy to raise public awareness and money to help fight the disease in some way, shape, or form. It seemed shallow to me for somebody for somebody to start taking public action in response to a disease/infection/syndrome etc. only after they had contracted it. But now I realize the significance behind that. It’s not that I think epilepsy is suddenly a bigger problem than AIDS. It’s not. But I feel as though I can offer something on behalf of epileptics to the public because I have had these experiences that I would have never imagined epileptics would have to go through. I’m knowledgeable about the disorder I have, and I feel as though that helps me become a more effective proponent for justice, treatment, and equality in society today. Before, all I knew was that I wasn’t supposed to play video games if I have epilepsy. Thankfully, my type of epilepsy is immune to flashing lights, so I can play all the SEGA Bass Fishing Duel I like. It’s the first game I learned to play on my PS2, and I can’t recommend it highly enough.

Retrieved from “The Iso Zone” website


Most of the stipulation for me writing this particular blog comes from my Micronesia trip and how the UW International Programs & Exchanges Department handled my situation. That was the first time I felt completely different from everyone else. There’s that whole not-allowed-to-drive thing, but I honestly could care less about that because I love to walk and run all over the city and take the bus during the school year (we get free access to Seattle Metro). When I was in Micronesia, I wasn’t allowed to partake in certain activities, and that made me feel different. It wasn’t anything new though… I had felt different ever since I first got that letter from the UW attempting to slyly convince me not to go. But when the UW demanded that my mom fly over to be my “emergency evacuation escort” and denied me the chance to stay even with the teacher’s and doctor’s approval, I felt like I lived a world away from everybody else.

But even being forced to leave Pohnpei was OK, because I had the time of my life in Hawaii with my mom as we switched plane tickets and had an “emergency evacuation vacation.”

I’ve posted a link to The Epilepsy Foundation at the top this blog (not the individual post) in hopes that some readers (and myself) will take a look at it. The foundation’s mission statement is to “ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services.”

I don’t “live with epilepsy” in the same way that people don’t “live with time.” They live within time, and I do so with epilepsy. It’s just another one of those gajillion dimensions in which we experience the world. And I’m perfectly comfortable here.I just hope I can help others feel the same.

Thanks for reading. If you know anybody with epilepsy and you’d think they’d like this post, go ahead and show it to them! Or anybody in general. This is my personal blog, and believe it or not, I’m not always thinking about the weather.

Charlie

Finished Wednesday, August 28, 2013
9:48 p.m. 

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3 thoughts on “Living Within Epilepsy

  1. Great post Charlie! you do an awesome job not letting it prevent you from doing stuff, i cant imagine. I have this thing where when I stretch backwards I get really dizzy and black out have seizures…sometimes muscle spasms and sometimes full violent seizures but i have an idea/know when its coming. Having them random would be even scarier! Keep pushing and dont let it prevent you from doing things. UW was stupid!

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  2. Thanks Matthew! I didn't grow up with epilepsy… it's genetic and I had the genes for it when I was born, but it didn't manifest itself until the summer between my sophomore and junior years of high school. If I had grown up with it I would have probably just avoided risky activities in the first place.

    It's very scary… you kinda just have to accept that you have it and do your best to minimize the amount that you have. I had one in the shower once… my friends heard me and came to help, but I got pretty freaked out.

    It's not that UW was stupid… they are just bureaucratic and are worried about lawsuits. Not that that's any better…

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  3. I had a seizure in the shower once i had so many bruises after it but luckily didnt hurt anything too bad. Ya it makes sense why they would be worried and all and not want to have a lawsuit but still I think they could have handled it a bit better.

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