“Every day I live to dream, but in every dream, I dream of living.”

Shortened to: Live to dream. Dream to live. As it is inscribed on the unders of my arms.

I came up with this quote many a year ago, inspired by James Dean’s “Live as though you’ll die today, dream as if you’ll live forever”, it was meant to encapsulate my life as I saw it, like a dream. “Awe cool!” you might be thinking, how cliched of me to get a tattoo about dreams. But no one ever stops to ask what it really means, they just see “live”, “dream”, and are like “Wow! Cool! Must be super deep!” and get carried away in their own cliched assumptions around the words and their meanings. But in fact, it’s probably nothing like that, in fact, it may be quite sadly terrifying. And it all started with a night at the casino with my grandparents.

It was a common occurrence, it was still the late 90’s, and people could afford to go gamble a hundred rand or so, it was like a family outing, dinner, and then we would go play games in the arcade while the adults played their games. One night was great, I remember it being so much fun, I would love to play this House of the Living dead game where you had to shoot zombies, and the claw catcher games, which I wasn’t particularly good at, but this particular night I was on a lucky streak, I had managed to get a teddy bear, and I loved teddies, I loved toys, I had a lot of them, they were all lined up around my room, to watch me. Yeah, I was weird even back then, probably more so thinking back on it. But I was really excited to put my new teddy with my collection, he was a fortuitous happenstance and in my family, it was considered really good luck when anyone won anything, it was always an omen of good things. So excitedly I jumped out of bed and ran to my mom to ask where my teddy was because he wasn’t in my room so she obviously had kept it when I fell asleep last night at the casino or in the car. on the way home..She was confused at first and asked me which teddy bear, which looking back was a legitimate question, I mean I had like 30 different teddies, toys, and dolls lined up around my room, in their defensive positions. And so I say “The one I won last night at the arcade”. Even more confused now, “Huh? What are you talking about? No one went to the casino last night? Go get ready for school!”. And just like that, reality crumbled. Well, it had already crumbled, I don’t think it was ever actually there, I just hadn’t realized it. But that was the first time I came in direct contact with my “disorder”, there were many telltale signs at the beginning, like those teddies all lined up, but this was the first time I questioned reality in that way,  how often did this happen? How much of what I remember now is real? How much is a dream? Why does it matter? To a kid living in a lucid dream all night was GREAT!

Well, let’s skip a few years ahead, like quite a few, 15 or so. With such a vivid imagination those dreams then became rather hyper-realistic and less controllable as I got older and learned more about the world, both good and mostly bad, they were no longer how they were when I was young and still filled with idealistic hope and creative determination, unburdened by life’s complexity and free to reign over an infinite imagination of my defining. Sounds fun right? It was, is, can be. But you ain’t a kid no more, you not trying to throw fireballs out your hands like Goku, or fly around the neighborhood. No. You have reality to worry about, to dream about.  Let’s say you are walking down the street just finished work excited to get home, and suddenly a dark figure jumps out at you and stabs you in the stomach to steal your phone, ironically just after seeing a story on the news earlier that day. Or getting caught in the crossfire between soldiers and some monstrous alien that you just watched tear your family apart and is now coming for you, and it gets you. Say you feel the cold of the blade as it starts to warm up around your abdomen. The oozy warmth of the blood as it covers your hands. The inability to move as the bullet enters your head as you feel your limbs being ripped off. You lay there, paralyzed as the cold seeps in, pulled by a force you can’t explain, and you fight with everything you can muster to make it not true, to undo the present, to change that moment, and for just that moment, this is all so real, your brain forgets it is not. And that was all it took to trigger grand mal seizures that left my body often broken, mouth bloody and pillow stained, torn muscles, bruises, and I would just brush them off as “bad dreams”, you know? That’s the burden of living to dream, how real it becomes. But that’s just what it was to me, all just a bad dream. Nothing to worry about, I had been like this most of my life. Everyone twitches in their sleep…

It was only when I met my wife at 28 and subsequently began living with her, that we finally realized what it was. Yeah, that old diagnosis of childhood had possibly returned. As an epileptic herself she recognized the signs and one morning just asked “Do you know you have seizures in your sleep?”. Realizing it was TLE was the first step, in my “explorative” years I had experimented with a lot of plants and materials in an effort to understand the world from different points of view and to kind of just push my mind and see what else was possible, I wanted to augment my already augmented reality, and I can safely assume that triggered the late-onset seizures along with mood-stabilizing medication. I was prone to moments of intense disassociated Deja Vu-like experiences, subtle pedi-mal seizures brushed off as “perks” of being “special”. Many things I had grown up with as just being brushed off as “attention-seeking” or “normal”, I mean I was having auditory hallucinations from an early age, running into a room after hearing my name be called, monsters entering my room and my toys coming to life to defend me, I’ll never forget the great big wolf that lay on the foot of my bed waiting for me to move… All brushed off as an overactive imagination, which it was, but it was too active. So active it was causing damage and inducing seizures. The “bad dreams” were actually seizures and not the other way around. It was the seizure creating the dreams. For a while I had just left it as is, even after realizing, I had lived with it for so long, what would be so different now that I know? Well now that I knew what they were, I realized how often they were happening and that I wouldn’t be able to carry on. It was entering a dangerous period, for example, I had even learned how to use my breath to control my seizures, I learned how to divert my brain away from the broken path, and as cool as it all sounds, it’s rather difficult when you are on a motorbike going 120km/h on a high way packed with cars and trucks also going that fast. 

And so I decided I need to try medication. It works for my wife. So why not try it? I was put on Epitec and the testing began. I had been on medication before in my early twenties for bipolar, but not any anticonvulsants, and that medication almost killed me, it made me a zombie, and it was actually after stopping Cilift that I had my first proper seizure. The comedown from that took almost a month to begin to start to feel normal, waking up dizzy, feeling like my brain was about to fall out, always confused, etc, it was intense, and it was after that that I actually grew a great distaste for pharmaceuticals. So when I finally decided to try it was a big thing, it was the first time I was treating the cause and not just the symptom, not since I was young and first diagnosed. Yeah, after that casino incident I was sent off to the doctors and scanned, and quickly diagnosed. But it supposedly “disappeared” soon after as the scans stopped showing anything, the medication worked, apparently. They thought it was gone, but now that I think about it, it was probably just my brain getting used to it, it knew, it would be more beneficial and sustainable for life if it just accepted its inadequacies rather than fight an already lost battle, instead of making a fuss and commotion trying to rectify the path, it just went with it, let jump to the next available neuron, connecting ideas and memories that are a mix of each and more, a hyperactive imagination. Instead of fighting neurons going off in the wrong direction my brain let it, and just went with the flow, this resulted in I assume in my hallucinations and “weirdness”, my “view” of the world. But instead of being scared, it was just treated as a part of life. Something I dealt with on my own. It was never that I thought everyone was like this, I knew from a young age my brain didn’t work the way others did, and there was no point in explaining it because no one would understand anyway, it was more about just living with it. The things I saw and heard were just me telling me something, it was not meant for anyone else, it was just my brain putting things together that maybe I wasn’t aware of, or denied, it was an autonomous reflection of the things didn’t want to see and know. 

So despite how far I let myself go I always know to come back, I always know it is just my subconscious interacting with the reality around me. And I allow it to be that. It obviously needs to be taken with a pinch of salt but taken it must be. It’s real in its own sense, in that the message it is trying to tell you has real meaning, which may literally just be a metaphor gone wild, or maybe you forget to do something for work, but it’s not really real, not in the sense that it is something I can touch, it’s only something I can feel and sometimes hear. Feeling is what I do a lot of, with the center of my epilepsy deeply tucked away right in the parts that process sound, emotion, and memory, my sense of feeling is deeply connected to sound, and memory to sound and emotion, it also means I experience time differently because of how my memory is affected. Minutes become hours, hours become seconds. I also often experience frisson and can even self-induce it if I focus enough. I float away down memories and imagination and become engrossed in their emotion, so much I get butterflies or cry. I once explained my emotions as akin to a dam, behind the wall is a tower of water ready to give way and destroy all in its path, but released in small chunks in a controlled manner helps sustain life in an area. I think it still applies, but as I’ve gotten older, either the wall has grown taller, or there is just less water. Maybe it’s just temporary, maybe it’s cyclic, like my seizures were, so cyclic I could predict them. Like seeing a tsunami wave on the horizon. 

It has been a few years since I have had a seizure, I can’t really nail it down to what helped stop them, there could be many factors, just like what could have caused it in the beginning, being told I was adopted, my brother being born, being dropped on my head, a mysterious infection that left me delusional and hospitalized for weeks, it could have been many things. And so I often just put it down to an amalgamation of things that resulted in the gradual variance of my brain’s workings in its attempt to survive itself. Much of what I assume is the treatment, an amalgamation of things. Routine exercise, herbal treatment, constructive meditation, and strengthening my imaginative skills, all these things come together to help me manage my brain, And when well managed, its variances can be beneficial in their own contexts. I often let myself drift off into a scene before shooting it, I can spend hours in my head attempting different processes to rectify a logistics issue. I can run through scenarios and see issues before they happen. The list goes on. And every day I’m still trying something new. Trying to see what else I can do. Constantly learning beyond what I can define.

And that is why I’m writing about it here in my first personal blog. To get it out the way and let everyone know why I am the way I am. To answer that question “Why is he so weird?”. To know where it all started: In a dream. Yes, I am technically disabled, but I don’t like seeing it that way, because I can function just fine thank you. I am just… different. We are all just different, and I’m too old to care much anymore what others think about it, but also old enough to know I could possibly help someone who is stuck in a similar position and might not even know it through my own experiences. It has informed the way I do many things in life, including teaching, and is probably why I’m so good at what I teach, which is acting and film, playgrounds for the imagination. But I hope that my ideas can prove useful to other fields like therapy and psychology, even if I’m just an example. It is part of how I see the world, and how it sees me. It is the reason I am me. I am the dreamer.

So when you wonder how I get to an idea, just know, that I probably don’t know either, it’s just popped up and I went with it. 

It all started in a dream