Growing up Epileptic
June of 1980 is the year I was born. It was a time when Neurologist did not know much about Epilepsy. Born to a mother who did not know how to handle a child, every time she would pick me up or move me in any way, I would not stop crying. How do people deal with things or people that are different from what they know? In the same case, those that are different from the majority, how do they grow up in a world where they are treated as outcast? This is my story, a story of a girl who always felt like an outcast, and has used it to her advantage.
As a child, my mother and I would drive every few weeks to Children’s Hospital in Seattle, WA, for routine exams. For the most part, the procedures consisted of a scan or a simple test where I would have to visualize something and describe what I saw. The only problem was I did not know how to visualize something without seeing a picture of it first. Other times I was blindfolded. I was instructed to select items that had the same shape and place them in a box. This procedure became my favorite because I found a way to cheat. More so, this lead to my fascination of doing things blindfolded or with my eyes closed. No matter what it was, I spent a lot of my youth sitting in a hospital waiting for the doctor to show up or having someone draw my blood for more test. I disliked having my blood drawn, so I would always ask for the butterfly. It takes longer but the needle is a quarter of an inch long compared to the really long one they would have used!
Going to school was difficult, as it still is today. Since I was two years old, I was on Phenobarbital, Mysoline, or Tegretol. Though I took myself off my drugs when I was 13 going on 14, my body and brain took major hits. Personally, I have no idea how I got through school. Reading was and still is a problem. Granted it has gotten better but I still have problems retaining information. When I was younger reading a mere paragraph over and over, say 14 times or so, I still would not be able to tell you what it said. Now I can read something and give you a brief summary but not the details. Within a day the information may still be there but I have to reread the information again in order to tell you what it was about. Going to the movies is a lot like reading. If I do not see a movie at least twice I am unable to remember seeing the darn thing, or what it was about. In order for my mind to retain the information I need visual stimulation.
Sometimes, I would be sitting in class and like a dream something would hit me from the grade before, and I would understand what it was the teacher was trying to say. However, the year before, I would be sitting in class not grasping anything and break down into tears for lack of understanding. I wanted to understand and be like the other kids, where things came much easier to them. Tests days were exceptionally difficult. I would make little sheets with information on them, but nothing I ever wrote would seep into my brain, or would be on the test. Academics seemed like something so bizarre and ungraspable, yet art could be done without much frustration or pressure.
Both of my grandmother’s were artist. One was a (what type of artist Danielle: painter, sculptor…be more descriptive) and the other was a dancer. My sister, two cousins, and I would perform a song and dance group at my grandmother’s The Dancer’s Tavern. There was no ridicules or judgments made by peers or strangers, just approval of 5 adorable girls who shined on stage. Growing up, school and my home life where two different worlds for me. During school hours, kids would call me names or throw food at me during the lunch hour. On one occasion, a kid threw a smoke bomb at me that made my shirt melt into a large hole. Thank goodness, it did not burn my skin. After school my sister would also verbally abuse me but then she would add physical abuse as well. While my mother would sing her praises about my sister and say to me daily, “why can’t you be more like your sister?” The only thing I could think of was why anyone would want to be such an abusive individual, no matter what kind of grades she got in school it didn’t excuse the abuse she made me endure. Furthermore, how was I supposed to compare to someone else while being on massive amount of drugs? Still to this day, I do not understand where she was coming from (who: your mom or sister).
While my sister would be out playing, my artistic grandmother taught me how to paint, sew, fix things, and to think outside the box. She never saw what was going on between my sister and mother, and she wouldn’t until much later in life. Nonetheless, she always treated me like a normal kid. To me, I was always a normal kid who had minor limitations or setbacks. Nothing was truly off limits for me, except for what others would not allow me to explore or do.
When I was 13, my mother and I moved to Hawaii because my mother accidentally burnt our house down with a blow touch on a frozen pipe. She bought a grocery store/fish market on the Big Island. This was my chance to get away from my sister and everyone who knew about me, and not be treated like a freak! My sister refused to go until her junior year was over. Slowly, I began to take myself off my drugs. It took me about 6 months to get off them. By the time my mom asked about needing more I was done! Granted, I knew what would set me off into a seizure and what would not, so I avoid those situations. Two seems to be the magical number for me. I can be spun twice while dancing but not three times. My brain does not understand movement, nor does it understand strobe light. If I start to feel displaced I need to get away from the situation and be quiet. The more people talk to me the more I have to focus on other things and so it takes longer to snap out of it. If I am unable control it, I’ll go into a seizure.
My seizures are range between a petite mall and a grand mall. When I was a child, if I was standing I would fall, and if I was sitting I’d just fall back. None of my muscles would work. I couldn’t move, but yet I could talk but nothing more. The world became dizzy and upside down. Sometimes I’d toss my cookies. My seizures would last anywhere between 20 minutes to an hour. These would happen at least once a day. I have always been able to feel it coming. As an adult things are a bit different. During an episode I am able to walk, though I look like I’m drunk and all I want to do is get somewhere quiet and curl up in a ball until it goes away. Luckily, I don’t throw up and the world doesn’t go upside down, the dizziness is still there though.
After a car accident back in 1992, I had about 3 to 4 seizures a day for a few months until my neck healed. The doctors put me on the same drugs and dosage I was on when I was a kid, to my surprise I was unable to function. It took me all day just to get to the bathroom (10 feet) and back. I didn’t take another pill after that. Then a couple years ago, I was in another car accident and I had a concussion which led to my first, and hopefully last, grand mall seizure.
Grand mall seizures are really scary. They start like a regular seizure but increase quite rapidly. Idiotically, I tried going back to work a week after the accident but it induced a seizure with the lights from the screen (from what screen?). I told my boss I needed to sit down in his office and he said “No.” No was not an answer I was going to take. I sat down and started feeling shaky, dizzy and my hands began to go numb. I kept shaking my hands hoping it would make take away the awful feeling that was creeping up. In an effort to regain some control I tried lying down because the dizziness was getting worse, but that only made it stronger. Within moments of sitting down, all this took place and all I could say to him was, “call 911.” Before I knew it I was on the floor. Never before had I felt such intensity as the one I felt on that day. When I awoke, it was only long enough to ask him to take my shoes off. Shortly after I woke, but this time there was a paramedic over me, but I was out once again. This off and on blacking out lasted 6 hours!
People have often tried to get me to drink or do drugs. As an epileptic, one of the worst things would be to drink or do drugs. Now if you had to endure seizures throughout your life, as I have described, would you ever want to do something that could bring them on? I have never understood why anyone would want to take drugs when someone like me had to take drugs on a daily basis.
Most people do not seem to understand what Epilepsy is or what to do when someone has a seizure. “Epilepsy is a condition of the nervous system that affects 2.5 million Americans. More than 180,000 people are diagnosed with epilepsy every year.” (Website 1) Epilepsy is an injury to the brain, it can happen inside the womb, during delivery, or from some type of head trauma at any time. The brain is the most complicated organ in the human body. No matter what it will respond in two ways. It will shut down either completely until it heals itself or it will seize. “Things that irritate the brain can cause neurons to fire erratically.” (Bazil 35) Doctors seem to think the answer to Epileptic attacks is to use medications. “Phenytoin was the next major drug introduced after Phenobarbital. Its most common side effect is tiredness with dizziness and unsteadiness that can occur at higher concentrations.” (Bazil 103) What doctors have a difficult time understanding is that the effects of these drugs, aside from making the patient feel tired; they also put the patient into a foggy haze that it is difficult for the mind to snap out of it. Drugs are not the answer. The brain is an organ that will heal itself with enough time and sleep. Doctors have proven that they can take half an Epileptics brain out and the neurotransmitters will reboot elsewhere within the brain. “The overall risk of severe complications from epilepsy surgery is approximately one percent. The nature and severity of these complications depend on the type and extent of the surgical procedure.” (Weaver 88)
It used to be that if an epileptic had, had any seizure during 5 years or less they would not be allowed to drive a car. Technically, since I have not been on meds since I was 13 my license has never been an issue. However, legally they could have taken the privilege away when I had the grand mall 2 years ago. These days the Epilepsy driving standards have changed. “You can apply or reapply for a category A, B, B+E, F, G, H, K, L or P license as long as: You have been free from seizures completely for one year or have experienced asleep seizures only, for a period of at least three years; and as far as your are able, you follow your doctor’s advice about your treatment and check-ups for epilepsy; and the driving agency is satisfied that as a driver you are not likely to be a source of danger to the public.” (Website 2)
So how do we epileptics deal with the day-to-day struggles that many take for granted and the pressures of life that others like to drown with medications or liquor? We have become stronger people who deal with what comes our way. How can someone help another individual that might be struggling with an illness that they never asked for? Become more understanding to those who cannot do for themselves. Try to help and see things from a different perspective, where those with no so called human malfunctions have prevented them in doing whatever they wanted to do when they wanted to do it.
Many people come in and out of our lives, most only stay for a brief moment in time. Usually these people cross our paths for a reason. The bullies find themselves being bullied or their children receive the bulling and they finally understand what it is they did and why it should never had been. As we get older we become more wrapped up in our own lives and forget to help out our fellow man. However, with the way I grew up it has made me more responsible, understanding and compassionate to those around me. Although Epilepsy made things a bit harder, I’ve turned it into a strength from within me that has kept me from becoming an alcoholic, a drug abuser and a more sensitive person who understands that we are all in need of love and compassion. I am proud to be an Epileptic and I make a heck of a good designated driver.