Hazards, Heachaches, Hassles & Hilarity
First prize winning entry to Epilepsy Ontario's Outstanding Youth 2001 Contest
Hello. My name is anonymous and I am an alcoholic. Oh wait, I'm not an alcoholic; I have epilepsy… But my school and my school board sure made me feel that I was.
- I was made to feel ashamed.
- That I had something to hide…
- My little secret…
- I was considered incapable of making decisions for myself.
- That efforts would be wasted on me because I would never amount to anything…
- Eventually, I would try to take my own life.
- My family would file a human rights complaint.
Maybe it would have been easier just to leave this school board, but why should I have to leave my long-time friends and travel extra distances just so that others don't have to do their jobs? We never asked for special treatment. What we wanted was the same advantages that every student is entitled to.
I have complex partial seizure disorder. I am photosensitive and also experience nocturnal, absence and drop seizures. In addition, I occasionally have the world's greatest migraines which cause me to hallucinate for days at a time. Frequently at school I would experience blurred vision, loss of feeling in all or part of my right side, loss of memory, I would write backwards without realizing and would temporarily lose the ability to do equations following a seizure.
Here are the hazards, the headaches, the hassles and the hilarity of school.
Hazards
If you have epilepsy, attending school is one giant hazard. After waking many times through the night with seizures, you are exhausted. The bus ride to school isn't so bad because the sun flashing through the windows causes you to have repeated seizures. You miss most of the trip.
When you arrive, you are a bit drowsy but manage to follow the crowd into the totally cement building. You climb the four flights of cement and metal to your locker and hope that some kind soul hasn't locked it for you because you are not likely to remember the combination of your lock after all those seizures. You gather your books into your good arm and head downstairs. (The school has an elevator, but they didn't give me a pass for three years.) On the way, you pray that one of the more than five hundred flourescent lights won't malfunction today.
You make it to the first floor and head outside. You hope that a late student will discover you in the event that the sparkling snow causes you to drop. You settle into your desk and try to concentrate on not looking at the clock. It has a flashing red colon. You are safe until you have to go to your next class on the third floor. But then the headache begins.
Headache
The headache is the policies. These policies are written for the convenience of teachers and administrators to make their jobs run smoothly. If they were designed with students in mind, they would be flexible and make exception for unusual circumstances — but they don't.
At my school, students who have less than five sick days get extra marks in math. I spend more than five days at the doctors. Students trying to get these marks come to school barfing. This causes me to be sick more often and for lengthy periods, because I am unable to keep my pills down.
At my school, you may have the flu only once per year for a period of only three days.
At my school, it is the responsibility of every student to find out about and obtain all missed work. If you happen to have an absence seizure and the teacher doesn't move, you have no idea that anything was missed. Weeks later, you are shocked to discover a due assignment that you knew nothing about. A nice teacher deducts marks for lateness. The rest give you a big zero. Add all of the small sections that have been missed over five years, and I have missed a very great deal of learning material. In every document and at every meeting, the school and the board maintain that it is my responsibility to notify them when I am unconscious or confused.
At my school, without exception, all missed tests due to illness must be written on the day you return to school. After having seizures or hallucinating for a few days, I am anxious to return and get my missed work, but I am in no shape to write a test. If I go to school, I will fail the test. If I stay home to catch up and study for the test, I will miss more work. You can't win!
At my school, you must arrange to write a test the day before you are going to be absent. They must think I am a fortune teller who can predict when I am going to have a seizure. If you are there, you must write the test, no matter what. One day, a flashing light outside the classroom caused me to have a seizure. The teacher, citing the policy, insisted that I write the test. The entire test was written backwards. When s/he couldn't read it, s/he gave me a zero because it was illegible.
At my school, you may never rewrite a test.
At my school, students are marked on participation. If you are absent, you are considered a non-participant. I have had marks deducted for attending medical appointments, for being hospitalised, and even for going to the office to get my medication. One day during a seizure, I had a respiratory arrest in the main office. I was intubated and transferred to hospital by ambulance. I lost participation marks for this day and for the two weeks that it took me to recover. A teacher called my house the next day to remind my mother that I had an essay due in a few days. I was given a big fat zero.
At my school, many teachers insist that you keep the notes in your binder in a certain order. If you don't use their system, you lose marks. If you do use their system, you are unable to find things when you are confused.
At my school, people with epilepsy are not allowed to take certain courses. I was not allowed to take chemistry and I was not allowed to take physical education. Before I got sick, I wanted to be a doctor or a veterinarian. Because of these limitations, I will never have those avenues open to me.
At my school, people with epilepsy are harassed into taking basic, non-academic courses — the kind that train you to be a gas station attendant, if you are lucky. If my school taught basket weaving, trust me, they would be trying to get me into it ASAP.
Hassles
The hassle is people. Not the students. No student ever gave me a problem. Starting with the very top administrator of the school board down, ignorant, narrow-minded adults who have lost their ability to learn and show compassion are far too abundant. These people love meetings and stick together like glue.
There are four kinds of teachers.
The first kind of teacher is a Gift from God. As soon as you tell this person that you have epilepsy, s/he starts to research. Soon, s/he knows more about epilepsy than you do. This teacher is determined to see you succeed even if it kills both of you! S/he believes in your ability and expects as much from you as from the rest of the students. S/he guarantees your success by making accommodations whenever needed, without being asked. S/he supplies you with all missed work and gives reasonable deadlines. When you return to school, your work is waiting for you and s/he does expect it to be completed. Your success is also your teacher's success.
The Teacher from Limbo is nervous about having you in the class but willingly reads and rereads the information you supply and attends the information meeting. S/he feels really sorry for you and will give you "omits" instead of work, thinking that s/he is doing you a favour. Once s/he gets to know you, s/he relaxes and realizes that you really can do the work. S/he is not willing to go against school and department policies, but will fudge your absent days so that s/he can give you the participation marks that s/he feels you deserve.
The Teacher from Purgatory is annoyed that s/he has been assigned a student who will cause extra work. S/he returns the information you sent the next day with a thank you note. S/he does not attend the information meeting because s/he has policies and has no intention of changing them. Most of the time, you are invisible to this teacher. S/he doesn't call on you for answers. S/he assumes that you are stupid and accuses you of plagiarism if you produce good work. For projects, s/he makes up a tidy group consisting of the lazy kid, the kid who skips every class, the kid who can't speak any English, and you: the freak. To get any co-operation at all, you must send someone with authority to tell the teacher what to do. S/he'll do everything to the letter, nothing more and nothing less. With each absence, you have to repeat the procedure again. If s/he is forced to send work home, s/he will always leave out a little bit so that s/he can trip you up later.
The Teacher from Hell should not be allowed contact with children at all. S/he comes to the information session, but just doesn't get it. S/he throws the information you gave in the garbage. S/he thinks that you have fabricated your condition to get out of work and will tell you this to your face. Naturally, s/he won't let you leave the class to get your medication. S/he is out to teach you a lesson. All comments are rude and insulting. My worst teacher from hell had a malfunctioning overhead projector which flashed like a strobe light. S/he used it almost every day, and refused to either replace it or allow me to leave the room and copy the notes another way. The flashing would cause my eyesight to blur and my arms to go numb. S/he would then come to my desk and ridicule me for not being able to write as fast as the other students. When we reported this to the school, they said that I was lying. When we reported this to the board, they said that s/he probably just had an odd sense of humour.
Changes
Other than my epilepsy, I have everything going for me. I am smart. I am athletic. I have two parents who had the time, money and patience to fight for the rights that they knew I deserved. My mother is a nurse and my father had legal connections. With all of these advantages, I went through five years of hell within the school system. I would seriously hate to see the trouble that people without the benefits I enjoyed would have to go through.
When I told my (then) doctor of my difficulties with school and of my depression, s/he told us that "you can't fit a square peg into a round hole". S/he also suggested to the school that I take half classes. In other words, s/he thought that I should lie down and play dead. If I feel that I am capable of doing something, I should have the opportunity to succeed or at least to try and fail. This is the year 2000. There should be a proper sized hole for everyone. Every person should have the opportunity to reach their potential, whatever that might be.
"You cannot fit a square peg into a round hole". Yes you can! You just have to take those round holes and carve corners into them so that the supposedly square pegs can fit. We can all carve out our little bit. If doctors carve a bit, if parents carve a bit, if schools carve a bit and if we carve out our own little bit, we will be able to fit.
Eventually, I found a medication which controls my seizures and another to end my migraines. My marks are in the 90s and I have a SAT score of 1325. I am entered in the 2001 NHL entry draft.
The really sad thing is that all the things that I needed when I was sick, all the things that I fought for — extra time to finish work, schedule balancing, and co-operative teachers — were handed to me when I became an "elite" athlete.
Hilarity
Oh yeah! I promised you some hilarity in my introduction. I do intend to get the last laugh. Now that I'm an elite athlete, they all want free tickets to my games, and they ain't gunna get 'em!
