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What is Epilepsy? Very few
know how serious of a disorder it is. Each year, it causes more deaths than major cancers and illnesses combined. Scary to hear for someone with this disorder. My personal experiences may shock you, scare you, or even interest you... but this is my story. | ||||||||||
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Just a little history... Back in around 400 B.C., people believed that seizures were from the Gods; that these people had the power of prophecy. Even around the Salem witch trials, women, or men, with seizures were thought to be witches. Without our modern day technology and intelligence, these convulsions would definitely seem like the work of a demon or god, being that it's very unusual. What do seizures look like? Along with the many types of epilepsy, all seizures are unique, depending on the person. They all have their similarities, but no one's case is exactly the same. Small seizures are sometimes not even noticed, just increased sensations and uneasy feelings. However, the ones to be afraid of are the "tonic-clonic" seizures, formally know as "Grand Mal" seizures. Generally, people lose consciousness right where they are, which may cause serious injury. They usually only last for 1-3 minutes, but if you have ever seen anyone have one, it'll feel like an eternity. After losing consciousness, every muscle in the body stiffens, then, as if there were electric waves running through the body, the person convulses. Sometimes teeth clenching and jaw chomping. Eyes may roll to the back of the head and eyelids flutter. The body moves in almost a rhythmic way. My personal type of epilepsy is called Juvenile Myclonic Epilepsy. It's not as serious as standard epilepsy, but still as dangerous. With JME, seizures usually are caused by sleep deprivation. Now that you have the general background, this is my personal experience. The Warnings Prior... It was Spring of 2007, I was 20 years old. After waking, I was on my way to the bathroom, toothbrush in hand. Suddenly, my arm jerked away from me, causing my toothbrush to fly out of my hand. I was so confused; I still felt a little sleepy, but had no idea why I did that. I shrugged it off, brushed my teeth, and laid back in bed. When I laid back down, I had a few jerks. My boyfriend was there, and he asked me what I was doing. I told him I was fine, and they stopped after about a minute. A month or so later, it was a Saturday morning. I had had people over the night before so few stayed until morning. I was holding an empty glass. Before I knew it, I threw the glass and it landed on the ground and shattered. All I could think about was making sure my cat (way too curious for his own good), didn't step on the glass. So I sat at my table and told them to keep Butters away, but they were all so taken back that Butters starts walking on the glass. I remember becoming very aggravated and yelled at them to keep Butters away. As I sat at the table, two or three very big jerks came over me, about 30 seconds apart from one another. My boyfriend asked me if I was ok, and I replied "yes" to act like I was fine. But I wasn't; I was terrified that I was going to fall and I just wanted to lay down, but I couldn't ask him to carry me to my bed. I later learned these were warning signs for seizures called "Auras." The Day It All Started... June of 2007 and we were in Atlantic City. We had got a hotel for the weekend, and Saturday night we had a concert at the Boardwalk Hall. When we got there Friday night, naturally, the six of us college kids began to drink. We woke up a little late the next morning; around 11 a.m. I looked at the clock and jumped up, thinking, "We gotta get to the beach, we can't miss the noon sun, we have to get tan." I told my sister to wake up so we could go to the beach. My back pack was in the corner of the room, next to one of the beds. I went in to grab my bathing suit.... "OOOOWWW! My arm! My arm! It hurts so bad!" I twisted and turned on the bed; it had felt like I had slept on it for hours. For all I knew, I did; and this was the first time I woke up that day. Then I noticed everyone freaking out around me. My brain was so foggy. My friends stood me up and started leading me out of the room. My muscles felt like Jello, and I had no idea what was going on. They kept telling me that I had a seizure, but I was still so confused. I didn't start waking up until, oh, the 3rd hour in the ER! All I could think was, "There goes my beach day, it's all my fault." After getting blood work, and a CT scan, I was discharged around 4 p.m. Fortunately, I didn't have to miss the concert of my favorite band. Here We Go Again... After that experience, I was having seizures at least once a month, sometimes even more than that. One of the most painful things was having them in front of my family and friends; and even at work! It's embarrassing to look like that in front of people; I don't want anyone to have to see me in that state, especially when it scares people like it does. However, the most painful thing of all is the injuries I had acquired during this "journey." First of all, my AC seizure, when my arm was killing me, it was because it got caught inbetween the bed post and the wall as I was convulsing. Unfortunately, when you're unconscious like that you're brain doesn't detect the pain until you come to, so I couldn't pull it out before it caused serious damage. I had also slightly chipped my tooth when I fell into the wall. And that was just the first seizure. My life became a living hell after 70 % of my seizures due to chewing up my mouth. The first one my brother witnessed, he said that I was drooling bloody saliva. That alone would freak someone out. But because of the chomping of my jaw, whatever got in the way, it was getting bit... HARD. One time, my friend tried to prevent me from chewing myself or swallowing my tongue so he put his finger in my mouth... BIG MISTAKE. He said I almost bit his finger clean off. If you think of how strong your jaw muscle is, you really don't want someone clenching with all of their might right on your finger. So mouth wounds turned to sores which turned to ulcers; a very painful healing process. But nothing (so far) has topped this one. After a seizure, I woke up to a bloody mess. My mouth was swollen. I looked in the mirror and the left side of my inner cheek had several deep chew marks; very painful. But when I looked at my tongue, it was black on almost the whole left side of my tongue. There was literally a small chunk that had been bitten off. If that makes you cringe just by reading it, you have no idea. For a week I couldn't eat solids, and even then it was unbelievably painful. I had to use salt water daily, which made me whimper, and cry, and scream in agony; I still can't drink out of the cup I used everyday. My Lucky (and not so lucky) Experiences... The majority of my seizures happened in the morning, due to sleep deprivation. However, too much sleep can lock your brain in a state of fatigue. After sleeping late one day, it was time to get ready for work. I had to be there at 4 p.m. So after waking, I sat in my living room a bit to try to wake up. During a small conversation from my sister, I got a small aura. I thought, "I'll be fine. I'll get in the shower and the shock of the water will wake me up and I'll be ok." Wrong. As I'm in the shower, my auras are becoming stronger and more frequent. I held on the sides of the shower and then thought to myself, "You're not going to prevent yourself from falling by holding on. It's gonna come over faster than you know it... any second now. Get out of the shower!" So I cut my shower short and power walked to my room so I could lay down.... "Why am I on the ground? Why can't I move any muscle? Why is my hair wet? Why am I naked?!" Then I realized, I had had a seizure a second after I got into my room. I cried for help; my muscles had never been this stiff before, I couldn't move. It was like one of those dreams where you feel like you're submersed in water and can't move or even scream. All I could think was if I had stayed in that shower even 30 seconds longer, I could be dead. I could have hit my head, I could have drown, I could have had permanent damage. I'm so lucky to have gotten out. I'm still confused on how I fell on my floor without any injuries; that was very lucky as well. Meanwhile, throughout the past two years, my shoulder has given me more problems than almost anything. Later that September, I dislocated my shoulder at work. I had to get surgery and a lot of therapy. I was out for seven months, due to the fact that I was a waitress and needed my arm to work. After that horrible time, last April, I was getting ready for work. I leaned on my bed and bang, my shoulder slipped out. It was one of those times where you lay there for a moment and hope to wake up out of this awful dream... but I didn't. After three hours of it out of my shoulder, they finally reduced it (put it back in.) This time my surgery was going to have to be major. It took three hours; I needed a bone graft and staples. My scar is about 3 and a half inches running up from my arm pit. I'm in my second month of physical therapy, and I'm currently out of work again. Acceptance... After having over 10 seizures in a two year period, you have a hard time adjusting. After the first year, I would tell myself, "I'm over it. This is who I am, and it's what I have to deal with." But I'm not over it. I'll never get completely used to it or fine with it. It's a horrible disorder that affects many, but is rare enough for you to ask "why me?" I want to be like my friends. I have to miss out on events and parties, and generally missing out on being the young 22 year-old that I am. I hope that some day it will fade; I've gotten better at controlling them and taking care of myself. However, it is still the hardest thing I've ever had to deal with. I can't help thinking what it could be or should be or would be if I didn't have this; but what I need to focus on is what it can be, what it shall be, and what it will be. If you have experienced seizures or know someone who has, write to us and share your story. We'll post it- from you to us! blueapples8686@gmail.com | |||||||||
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