Another struggle

              Testing… testing… testing…

              Rigorous testing was done on me as doctors tried to find an explanation as to what could be triggering the seizures. Unfortunately to no avail. I’ve stayed in client studies for 24 hours as a strange helmet was placed on my head while these thin small needles were placed right in-between my skull and the helmet, just to get a test on my brain waves. They even encouraged me to bring my console gaming setup, play games and watch TV or whatever… any kind of activated so they can see what anomaly would appear on the brain wave readings. Sadly, it all came up normal. “Just watch your son in the mean time” was the best suggestion given to my mother.

              My first seizure was a big one.

Playing my computer game, I collapsed onto the floor and lay unconscious until the next morning. I was woken up by my mother who came into the computer room with a vacuum cleaner as she ordered me to do chores. My head was hurting, and I felt extremely dizzy as I realized my head was lying in a pool of my own vomit. I got very little to no support from my mother about the disasters that occurred to me relating to my seizures. For that matter, I had no one to talk about and ways to figure out how to fight them. Doctors question my motives as to why they were triggered and believed to be false, as my mother blamed the triggers on video games. However, I know it was something specific triggering them, and I had to figure it out on my own… with no one supporting me on the case. Doctor’s testing always proved negative, and trying to “self” test it was a bit of a challenge. I was told that, during a seizure I had a 60% chance of death. For some reason that didn’t scare me as I was determined to figure out the cause of all this and why they happened.

When do they occur? When do they happen? Was it a coincidence that it happened while playing video games? Did flashing lights cause my seizures?

At age 14, I finally got my first job. My title; I was a fast food attendant for McDonlds. The managers showed me the ropes as I was being taught what each of the equipment does and how to go about cooking the food. While left alone, I was told to prep some chick nuggets and placed them in the greaser. While reaching over for the bag of frozen nuggets in the mini freezers above me, something hit me; a seizure.

My mother was proven wrong. Something mentally is causing my seizures.

When given the opportunity, I stayed up all night playing games, forcing myself to do “all nighters”. Not for the sake of gaming, but to trigger my seizures. They got so bad, I started having them once every two months, but every time they happened, it was easier to feel them coming. I was able to detect my seizures before they could knock me unconscious, but how to stop them completely remained a question.

My theory as to how they were triggered had something to do with my vocabulary. When chatting to friends via internet over the games, I would type at least 80+ WPM, but sometimes I would stop and think of a word I forgot to spell during mid conversation (this also effects me in real life conversations as well when trying to find the ‘right word’). Because my brain would race so quickly to find this word, even if I didn’t know to spell it, I would suffer a “mind blow” when thinking too hard about the word. The mind blow had the following symptoms explained in my previous blog, basically the random “shakes” I would get. I’ve tried changing my diet and it seem like regular chocolate did have some effect on me. Doctors say that diets cannot change anything to help prevent seizures, but who knows. If they can’t figure out what’s triggering it now, then it’s anyone’s guess really. Even talking to other seizure patients, they agree that some doctors don’t seem to understand what they’re talking about half the time as most refused to believe that seizure patients cannot “feel the seizures coming”. For the mean time, I was prescribed a medication to help control the seizures with devastating side effects.

My seizures are easier to control now, but all at a large cost. Due to the depression being created from living under my mother, and finding it harder to find those who could support for me for my disability, I had to move. If I didn’t, suicide was just a step away. And what made these pills terrifying was that they didn’t allow me to second think about suicide as the pills caused the depression to be even stronger. I wasn’t happy here, that was obvious, and so I had to move as soon as possible.

Several years past and I found myself in a large city called Austin, TX. I’ve had grand adventurous thanks to the friends in this city, and I eventually found a group to help support my case with my epileptic situation. I found someone who was very educated in the medical field training to be a doctor. He was a UT graduate and decided to use me as an experiment to find a “cure” behind these seizures. Since I’ve moved to Austin, depression was miles away from me as every day gave me a reason to smile no matter how bad things got. Problem was… the suicide ideas still appeared even on perfect days. Luckily, living in Austin gave me stronger will power to fight off these dark temptations; it didn’t affect me in the long run.

While in Austin, I was able to find myself a Neurologist to help find out what could be triggering all this. He gave me helpful advice, but even he was confused as to what exactly could be triggering these scenes as well. One of my recent trips, I discuss a new problem that was up and occurring. It seems like the pills prescribed to me for control my seizures were no longer ‘as effective’. My Neurologist didn’t like the sound of this, and hesitated to give me the proper solution. He would’ve offered me a new pill to help control the side effects from the current pill I’m taking; being more effective. Plus I’d have to continue using my current pills. However, that second set of pills would only have their own side effects, and it would branch out causing me to demand several pills a day just to stay functioning. I didn’t like the answer to this, and I asked if there was a different solution. He didn’t answer.

Suddenly, I suggested “what about marijuana?”

The only reason I even thought about this was because of my UT Doctor buddy. When he was “testing” me to find a cure, he notices that a small pill filled with THC gave me the best effect. And boy, did it give me one hell of an effect. With my current seizure pills, it’d have to take two a day just to live on. With the THC pill, I only had to take two a week and I was perfectly fine.

My Neurologist gave a displeasing sigh and stated, “Look. If you can find the stuff, then smoke it, and disregard the other pills.”

To smoke it? Now this was going to be a new experience. Luckily for me, I knew people who had some on them.

It was movie night with my buddies, as a few of them invited me over to their place to watch a random flick with them. Of course, my main interest in the gathering was to smoke, and since we were such good friends I wasn’t turned down.

My buddy lighted his bong as he took a hit and pass the large glass piece to me and the lighter. I was terrible at this, but I took my first hit in such a wrong way. They found it funny, as I started coughing like crazy unable to contain the smoke. Eventually, I took about 3 hits until I started feeling “high”. This wasn’t the same experiences I got when taking Dr. UT Friend’s pill.

While watching the movie, I acted a bit different, but it seem for the better, as my speech was slower it was easier for others to understand me when speaking to them (less mumbling, which is still an on-going issue with me even today).  However, once again I was hit by something… since on the medication it’s been a good 5 years since I’ve had an episode. While high, I dropped onto the ground and went another seizure. However, something about this seizure was different… very, very different. As I shook on the ground trembling all over the place, I was still conscious and was able to speak (poorly, but still could talk). Having difficulty speaking, I gave my friends instructions as to where to locate my back up pills (which I keep in my car). During this time, I kept shaking and just tried to calm myself down. I was in such a panic I didn’t know what to do in this situation. However I was finding it odd I was fully awake and witnessing all this. Finally, my buddy came back with the small pill bottle and handed it to me. As I reached in the bottle to grab the pill, I thought to myself about something; a trick. I pretend to swallow the pill by placing my hand over my mouth and swallowing nothing. My body stopped shaking and I was almost back to normal. I got up, and was able to walk around but felt a bit weak. It seemed like I suffered the side effects of a normal seizure… but was I able to control it? I was still high, so a lot of things at the time were undetermined on my condition. Maybe I’ll feel better the next morning? I stayed at my buddies place for another two hours, then drove back home.

Oddly enough, the next morning I felt amazing! My head was so clear; it was something I was never able to grasp on before. I was able to keep long conversations with my friends and was able to have a strong attention to other things like reading a book. To me, this was a break through, as I went 3 days not taking my pill. But alas, all good things must come to in an end, and I became rather paranoid by day 3 of seizures attacking me. I went back onto the medication, but there was more testing to be done.

“What about marijuana?” well… what about it?!

I gave it a second chance, but this time I smoked it alone at my own place. I wasn’t addicted to the stuff… I don’t know, I don’t feel like I get addicted to some things easily. Since the last time I smoked at my friend’s place, it’s been a good 20 days and I’ve never been tempted to try it again other than trying to test myself against these seizures. A friend bought me a really nice pipe and showed me how to go about smoking with it. With that, I decided to smoke home alone and see what the results would corollary. Within’ 15 minutes I was high while watching a random cartoon show I found on youtube. The show had me laughing at things I knew to myself were not very funny, hell even while I was high I asked myself, “why the hell was that so funny to me?” yet I couldn’t help but just laugh. Eventually, once again something hit me hard. Damnitt! I thought I found an answer, I thought this would help. Would I live my life under these seizures forever… maybe there is nothing I could do… maybe I was helpless. Fuck it!! I thought hard about all this, and as the seizure was about to hit me, I just said myself “What’s the point of living if I’m going to be in constant fear of this disability. If this is going me from doing the things I live, then let it kill me.”

…

…

…

Confused. The seizure hit me hard but, nothing happened. I was still in full control, everything was normal, I didn’t collapse on the floor, I didn’t black out or anything. Once again, my seizure was giving another hit to my brain, as I felt another shockwave ran across my body and into my head. It seem like the seizures were not done and decided to attack me again. I was hit again… and… still nothing. It kept hitting me over, and over, and over, and over, yet nothing happened. I went back to my show and just finished watching it.

I’ve never talked to anyone about this, but till this day I’m still confused as to why that happened. Lately, even when I haven’t been under the influences for over a month, I would feel a seizure trying to hit, and I’ll just let it hit me and feel perfectly fine. Can my seizures be caused by stress? Sudden emotion change?

(I’ll type in more in my next blog about the after math. To be continued)

Intro, Mind Blowing Truth

            Growing up, I played various video games that had me sitting behind the TV for hours on end. I don’t know what it was about them, but I just loved playing video games. At age 4, I was visiting my aunt’s house and she had recently got herself a Nintendo. The game that came with the console was Super Mario Bros which was a very popular title at the time. Even today, Mario has reached pop culture phenomenon that anyone can recognize this video game iconic character even if you’ve never played the game. I sat by and I witness my aunt and cousins trying to pass the first few levels, but kept failing over and over. Watching and observing, I was able to understand what they were doing wrong in order to complete the level. As soon as they gave up, it was my turned and I started playing my first video game ever. In less than one hour, I completed it and rescued the princess. Video games where my passion, however, certain things got in my way that didn’t let me fully enjoy my games.

              A little before this, something tragic happened to me that may be the leading cause to my seizures. We were moving into a new house my mother had recently purchase, and my curiosity got the best of me. Being introduced into my large empty room, I notice a big blue wooden toy box in the closet. Once left alone, I decided to check out the toy box to see what was inside. Well, it was empty. But I thought it’d be cute if I could fit inside it seeing as how it was large enough for me to fit in. While trying to get inside the toy box, I found out the hard way that it wasn’t very sturdy. As I stepped inside, I use the lid of the box to hold my balance, only to slip back having my head strike against the edge of the toy box. The lid wasn’t exactly screw on correctly as one of the bolts came loose, causing me to slip. Little did I know, what I slipped on was a nail that impaled my skull about 2 inches deep.

              Rushed into the ER, doctors tried everything they could to stop the bleeding. My crying faded into a coma, as I became unconscious on the hospital bed, now waiting for death. It was only a matter of time now, as there was nothing the doctors could do. Then, I saw an image… it was the scariest thing I’ve seen in my life (I don’t want to go to deep into this part because people will think I’m crazy. So let’s continue on). Next thing I remembered, I was awake seeing very bright lights in front of me. I believed I was still lying on the hospital bed… but I notice something different about my vision. The doctors explained to my mother how it was a miracle the blood suddenly stopped. They don’t know what happened, but they couldn’t find an explanation of what happened. The brain should’ve exhausted all oxygen due to lack of blood, not allowing me to continue functioning, but here I am. Even to this day it can’t be explained how it stopped or how I even survived. Due to this scenario, I was labeled as a “special child” until stated otherwise. But, bad news still came my way, as it was explained by the doctors my days were numbered.

              Something was different about me, the way everything felt and looked. For one, it was hard for me to speak, and everything I said came out as strong mumbles. But for some odd reason, no one but my sister could understand me, and she would have to translate everything I said. When speaking to my mom, it would come off as something like, “mum ca yo’ ge ne su ci fu” and my sister would be beside me and translating what I said. She was always right, and I couldn’t understand why. For now I just accepted it, but the biggest change I notice were the colors around me. No longer was the toy box that almost killed me blue, but now orange. Did they paint this as I was gone? Maybe so much blood filled the toy box walls that they had to color it a different shade. But that lead to another question, as the grass outside to me was no longer green, it was brownish looking color. And the sky above me no longer blue, but now a bright green. At the time, this new arrange of colors had no effect on me, and I was too young to care about it.

              Eventually, and I was put into pre-K or whatever it’s called before elementary school. My behavior was frowned upon but not due to my mischief behavior, but rather, how socially awkward I acted. My mumbling was still bad so it was hard to communicate with those around, and I just had trouble understanding what the teachers wanted me to do during assignments. The teachers would get upset at me because I colored in the wrong colors on the sheets of cartoon animals we were given. Directions would say to use X color and the teachers would point out what the color that was suggested. However, when they had random music playing in the background in the school room coming from the radio, the perceptive of color would change for me due to the melody, and I had no idea how to color the cartoon animal in front of me. Coloring everything wrong and I acting very anti-social to the people around me only gave worry, especially since the incident. Because I was lashed out at doing things “incorrectly”, I could never tell when I was doing something right or wrong… and there was nothing there to help correct my judgment as it seem like everything I did was wrong. So much negativity against me because they couldn’t see what I could see, I eventually headed into a deep depression that only turned into anger.

              My mom came home one day with a small monitor connected to a large yellow metal case. Seem like she got herself a home computer for all of us to play. One problem: no one knew how to use it and my mom didn’t allow me to get on it. I don’t remember the exact age, but I know I was still too young to even be allowed to look at this thing. My mom was convinced that this thing was just too complicated for us, that anything we did would cause the computer to crash, so my sister stayed away, but this only peak my curiosity of what it could do. You would think my lesson of curiosity with a life threatening situation would tell me to avoid this, but for some reason I just wanted to play with the latest toy in the house. Mother would place the computer in her room to insure no one would touch it, but while she was out at work she’ll have our Grandma babysit us. Luckily, Grandma didn’t care what I did as long as she cried out my name from living room and I respond back. I was still in the stage of mumbling, so long as some type of voice came out of my mouth, it was enough. Looking into the monitor, I was amazed as to how everything looked on the desktop. It was a Windows computer, and I was just stunned as to how clicking on certain icons would change colors of those specific objects. “How do they open?” I thought, wondering how certain actions were triggered. Eventually, I came across an error stating I did something wrong on an application. Rather than getting scared, I knew this device could be my judgment, unlike the people around me, this device can determined if I was right or wrong because it was me trying to figure it out. My excitement didn’t last, as I was soon caught on the computer by my mother with the large error on the screen. Luckily, this lead to something great to come my way, and that was getting my first PC game ever, Metal Marines.

              At the time, this game had amazing graphics. It was a real time strategy game that allowed you to build army bases and launch missiles to the opposing force, while showing animated missiles and weapons fly across the screen. For a floppy disk game, this was awesome! Reading the manual, it gave proper instructions as to how to play the game and ways to defeat your opponent. The game gave me a new sense of confidences as it me realize I’m not always wrong. If I can complete this game while others around me couldn’t, then I have a better understanding of how things around me work. That… or maybe I can only understand what the computer would tell me. However, my body would so something very strange while playing the game. As the music change, so did the colors of the characters in the game, which is expected at this point. But as I continued to play, I notice at random times, my body would shake uncontrollably for just a second and I’ve lost all memory as to what I was doing in the past 10 seconds or so. I would take a long pause after this happened and wonder “What just happened” while trying to remember what I was doing. This also affected me as I was playing the game, but was the game causing this?

              Few years pass, and I got heavy into First Person Shooting games starting with Tribes. The game itself created my FPS career, but that’s for another topic. The company who made this game also created a game called StarSiege (which is the game I wanna talk about relating to this). Basically you were in giant custom made robots you designed within’ the game duking it out with other players online. Due to Tribes success, this game’s popularity was fading away. The online community of StarSiege was actually very helpful in teaching me how to play, as controlling the mechs forced you to use almost every key on the keyboard to maintain the life of your robot. Problem was, everything was labeled in color, and the people in my clan that I recently joined were giving me tips via voice chat to help shift certain things by describing the colors and what they do. I was still too young, so I didn’t bother buying a mic, I didn’t want my online buddies to hear my voice and know I was still below 10 years of age (and judging from that now, it seem like that was for the best). The more I played and the more my online buddies tutored me, the more I was able to determine these colors. I would sometimes see certain objects on the hud glow in all sorts of colors, fading from red, orange, into brown or whatever. However, because they all followed a specific pattern, I was able to understand what the color was supposed to be. Thanks to their teachings, I was able to determine what the colors were, even with colors outside the game. My online friends taught me more than the game’s mechanics, even if they didn’t know it. Problem was, as I continued playing these high intense graphical computer games, the “mind blows” kept happening and I eventually brushed them off as no big deal. Because they happened so often, I was able to suffer a mind blow, but still maintain memory as to what I was thinking about. Granted, I still forget the last 10 seconds of what I was thinking, but I was started to become quicker about reminding myself as to what I was just thinking about. I asked my uncle about these ‘mind blows’ to see if it was anything serious about them. He told me that it was no big deal and he gets those all the time as well when he’s on the computer. For now, I ignored it.

              Years passed and I was eventually stepping away from competitive PC gaming and more into Console. I recently purchase StarCraft late in its life, but it was still a popular title for being old. Didn’t care who I played, I didn’t play this game nowhere near as competitive as I did with my previous PC games, so I would normally just play with against my cousin online. One night, something happened, and it was the worst mind blow yet. Rather than just the simple shake and temporary memory lost, I feel off my chair and straight onto the floor, completely unctuous.