I'd like to take this opportunity to share my story. I want to tell you how I got where I am now from where I started. Don't worry, I won't include all the nitty gritty, but will try to include pertinent details along the way to show that living a life with seizures does not have to be dull and boring.
From the time I was born, until I was 15 years old, I lived in Cicero, Illinois, a "small" town which borders the west side of Chicago, and has a population of about 80,000 people.
My first seizure happened when I was 13 or 14 years old. You can read about it on my
seizure stories page. At that point, I had a friend who had Epilepsy, and had been having petit mal seizures for several years. I knew what they were, but I never thought I would have a seizure. We always gave him a hard time about his "staring episodes." Looking back, I wish I knew then what I know now about seizures, because I would know that even the little bit of teasing that we did could cause a lot of pain.
Several months later, I had my first tonic clonic, or grand mal, seizure. That story is also told on my
seizure stories page. Again, even though this was a full blown tonic clonic seizure, and I took my first ambulance ride because of it, it was all surreal to me. I had seen my brother have a tonic clonic seizure before, and as with the petit mal seizure, I assumed it would never happen to me. I would never have to live with seizures, because I figured it was probably a one time thing. I would never have to suffer through the pain they brought. I was not going to be "that poor kid." This was some sort of freak thing, and wouldn't happen again. I didn't think that years later I would be dealing with the effects of seizures still. I never imagined how it would alter my life.
But my life did change. This first seizure was merely a beginning to what would become a very long road of many seizures, more doctor visits than any kid should have to endure, seemingly endless tests and trial and error with countless seizure medications. I had seizures all the time it seemed. Every week or two (which may seem very infrequent to some people, and very frequent to others, depending on your situation) I would wake up completely confused, not knowing what happened. Once I was told that I had a seizure, I would just break down crying, because it was too much for me to handle. Sometimes at night, I would lay there crying, asking God, "Why me?" I hated myself, and what I had become. I hated other people because they couldn't understand the pain it caused and what I was going through. I hated God for allowing me to have seizures. I hated my teachers because they couldn't understand why I couldn't just get it when everyone else understood a concept. They never knew why I had such a hard time in school, why I couldn't remember anything for tests, why my grades were suffering. I had no respect for myself, and began thinking of ways to commit suicide. How would I do it to make sure it worked and I was never heard from again. I did not want to live my life suffering through the seizures, having to deal with the pain they brought me, causing my family pain and trying to explain why I couldn't do certain things, or remember anything. I hated myself and I wanted to die.
I sorted through ways in my brain, thinking about what others had done that had worked and not worked. I did not want to fail at it when I finally did it. I wanted to make sure that the plan I came up with was fool proof, and would leave no room for error. I took months planning it out in my head, and somehow during that time I saw things through a new light. I saw that, even though I was having seizures frequently, I was costing my parents money I'm sure they didn't have, I was a huge burden (that's how I saw myself), and I was completely worthless as far as school went, for some reason my family still loved me. I saw in them a love that cut through my hatred...my selfishness...my disrespect for myself. That love kept me alive...quite literally.
From the time I was a baby, my parents had me in church. Every Sunday morning, every Sunday night, every Wednesday night and any other time the doors of the church were open. I was taught about God's love and how it is not based on us or what we do. Somehow though, that is easy to know, and not very easy to actually believe. Once I started having seizures, I thought there was no way God could love me. I was some sort of mistake, and would be better off dead. However, as I said, my family showed me the love of God, and because of their love and God's grace, I am alive today.
So, what about the seizures...? Did they quit once I decided not to commit suicide...? Was that just God's test to see if I would...? No, the seizures did not stop. They continued heavy for several years after that, as did the endless doctor visits, tests, medicine switches, etc. Never again did I reach a point where I wanted to end my life, though. The seizures continued through high school, and while everyone else was getting their driver's license, I was getting a state ID card, because I was not allowed to drive. My grades in high school suffered because of the seizures. My short term memory was erased every time I had a seizure, and as far as long term memory (events from my childhood, etc.), there are a few VERY fuzzy things that somehow snuck through, but other than that, there is nothing there.
Because my short term memory was erased every time I had a seizure, I had a VERY hard time in school, and was given extra time on tests, even though it didn't help. I would sit and puzzle over answers forever, knowing that I should know it, and not being able to come up with anything. I would frustrate myself so much I would break down crying because the answers were just not there, and I never remembered even learning that material. It was as if I was a freshman, and someone handed me the final exam that the senior class was taking. I looked at the tests completely dumbfounded. My teachers did not understand how I could learn something one day, and the next day have zero knowledge that I had ever even learned that before. Not just forgetting how to do a math problem, but looking at something as if I had never seen it. Somehow, I made it through high school, but to brag about my GPA would be foolish.
For some reason, after high school, I thought that going to college was a good idea. I'm not sure where I came up with that plan, or why I thought it would work when I barely made it through high school, but I went for it, and let's just say...it didn't work. College professors have better things to do than help out "forgetful" students. Yeah, I got extra time on my tests in college too, but like I said, that didn't help, because there was no information there in my brain when I went to take a test. So, I lasted one semester at college, then decided against that, and moved to Colorado where I've been since then.
Several years after I moved away, one of my college professors had a stroke, followed by a series of seizures. He talked to my parents and apologized because he said he thought I was trying to get sympathy for having seizures. He said he couldn't understand how you could forget everything you learned...until he experienced having a seizure and forgetting everything. I would NEVER, EVER wish a seizure on ANYONE, but for him to say that made me feel a little better, because while I knew I wasn't faking, it's nice to have my statements backed up.
Since I've moved to Colorado, my seizures have been much more controlled by the meds I've been taking. I now live a very normal life, I am married to my beautiful wife, Abi, and I have two beautiful daughters, Hadley, who will be 20 months old on July 1st, and Brinkley, who will be 4 months old on July 4th. I work a regular job, I now have a driver's license and besides the fact that I have to take pills twice a day, the seizures no longer are a part if my life.
I am still affected by them, but I just don't have them anymore. It has been a few years now since I had one. The effects now are minimal. I still have very little memory of my childhood, but don't expect that to ever return. I have a hard time remembering certain things, and will have times where I forget things that should be easy to remember, like family member's names, or birthdays. The other effects come in the form of having no formal education passed high school, so getting a decent job is hard. I have considered going back to school, but am very scared at that possibility, because of the fact that it has not gone well for me in the past. I may at some point go back, but I am not sure what I would want to study.
So...now that this has gotten much longer than I had intended, I'll stop, before I have to get with a publishing company and see about putting this into a hardcover.
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