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 that 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 follow-ing 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 fluorescent 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.

Headaches

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 appoint-ments, for being hospitalized, 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 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 that 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 that 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 gonna get 'em!

Helen Keller

If you live outside the Calgary and Red Deer local calling areas, you can now reach us at no cost to yourself at our new toll free number

1 - 8 6 6 - EPILEPSY.

Along with our Canadian Epilepsy Alliance partners, we are pleased to be able to provide toll free access from coast to coast to ensure that support, information, and answers to your questions are just a telephone call away. If you live within the Calgary calling area, you can reach us at 230-2764. In Red Deer please call 358-3358.

Support & Information Meetings

7:00 - 9:00 p.m.

Wednesday, October 17

&

Thursday, November 15

Guest Speaker:

Dr. Elaine Wirrell,

Paediatric Neurologist

&

Monday, December 10

Explore Drama and Theatre

For Teens and Young Adults

12:00 noon - 2:00 p.m.

Saturday, October 27

&

Saturday, November 24

&

Saturday, December 8

Parent Support Group

1:00 - 3:00 p.m.

Saturday, October 13

Free admission, however, space is limited so please phone 250-7090 to register.

A presentation about managing chronic health conditions will be held at the CNIB building - 15 Colonel Baker Place NE.

November 27, 2001

7:00-9:00 pm

"Doc Talk: Working with your Health Team"

Whitney Steber, M.Sc., will talk about patient-physician partnerships and communicating with health care professionals.

Please phone 230-2764 and ask for Roxanne at the Epilepsy Association of Calgary if you are interested in participating.

Revenue Generation

Public Education Speaker

Penguin Actor or Guide

Educational Displays

Special Events

Childcare

November - Epilepsy

Education Month

Please phone 230-2764 and ask for Pam at the Epilepsy Association of Calgary

Christmas Party at the Epilepsy Association

of Calgary

Wednesday, December 5^th

6:00 to 9:00 p.m.

We will be providing more details so mark your calendar for an evening of

food, fun and festivities.

November is Epilepsy Education Month

The Epilepsy Association of Calgary (EAC) will be involved in several community outreach activities during the month to increase the general public's knowledge of epilepsy and awareness of the services provided by the EAC. This year there will be an additional focus on SUDEP, Sudden Unexpected Death in Epilepsy.

It is anticipated that approx-imately 2500 posters will be distributed, and schools and a variety of other organizations will be invited to participate in a free educational presentation. Also, we hope to again have support from local businesses in carrying messages on their electronic signs and providing space for our display booths at

malls. Our theme for Education Month is "Epilepsy - Out of the Shadows".

The Canadian Epilepsy Alliance (CEA), of which the EAC is a member, is a partnership of grassroots epilepsy organizations from across Canada dedicated to improving the quality of life for those affected by epilepsy. In April of 2000 when the CEA launched its organization, it also conducted the first ever Canada-wide survey on epilepsy (which was sent out as an insert in the Epigram) to find out what issues were most important to those with and affected by epilepsy.

The results of the survey reveal that the top five areas of concern are:

Negative depiction in the media,

Driving regulations,

Cost of medication,

Information from medical community, and

Employment.

The negative portrayal of people with epilepsy has resulted in damaging myths, stigmas, and discrimination over the centuries. Reality is often sacrificed to the needs of a plot and in today’s modern media this means that inaccurate and negative depictions of those with epilepsy can reach much wider audiences faster. Public attitudes can be more disabling than the condition itself. As one respondent stated, "Public attitudes eventually impact on public policy". Therefore, public education to improve negative perceptions and mis-understandings will continue to be a focus in improving the quality of life for those with epilepsy.

The theme of those responding to this issue was how not having a license impacted on their lives. One person summed it up "No car, no job. No job, no family. No education – none of the above".

However, people felt differ-ently about whether those with epilepsy should have a license. Some people were against automatic revocation of a driver’s license as long as his/her seizures were well controlled. Others thought that those with epilepsy shouldn’t have licenses to drive. Interestingly, respond-ents in the Atlantic province found having a license less important than did those in Alberta, BC, or Quebec. This may just reflect differences among the individuals or

geographic, socio-economic, or enforcement differences.

The high cost of medications negatively impacts the quality of life and general health of those who do not have drug plans and are already financially challenged. The stress of money issues can also have a negative effect on seizure control.

Different regions expressed different level of concern, which may reflect different regional economic conditions or differences in available health care or social services in different provinces. Respond-ents in Alberta were the least concerned with the high cost of medications, while those in Saskatchewan and Newfound-land were the most concerned.

Respondents in Alberta were least likely to feel their medical personnel were properly trained about how to inform them and educate people about epilepsy. They also expressed a desire for alternative forms of treatment as opposed to the strictly pharmaceutical approach. Respondents in Quebec and Newfoundland had the highest level of confidence in their physicians.

It is not clear whether the respondents had neurologists, general practitioners, or other medical personnel in mind. What is clear is that people with epilepsy would like more from their doctors than a prescription for medication. They would like to discuss issues they believe are related to seizures such as adverse side effects, attention and concen-tration problems, memory difficulties, social functioning, work-related limitations, and so on. The lack of confidence expressed may, in part, relate to the fact that epilepsy and its treatment carries with it some uncertainty.

That not withstanding, the response to this survey indicates that medical personnel need to do a better job of imparting a feeling of confidence about the treatment plan and of making sure their patients have all the information they need.

Respondents to the survey were concerned that people with epilepsy are more likely to be under- or unemployed. It is apparent that there is an interaction between the issues identified in this survey. Employers’ perceptions of people with epilepsy, seizure control (from drug therapy) or lack thereof, adverse effects of medication, and the ability to drive all have direct impacts on employment and employability.

This survey has provided a means for the voices of people with epilepsy from across Canada to be heard and the results demonstrate that the issues of concern are common to all persons with epilepsy regardless of the province in which they live. The results will also help to focus efforts of the CEA in the future. To all who took time to respond to the study, thank you!

Alexander Graham Bell

ENSURING A CONTINUOUS SUPPLY OF YOUR ANTICONVULSANT MEDICATIONS

Anticonvulsant medications, like many other prescribed medications, can be expensive. Having to purchase these drugs on a regular basis can be a financial hardship, especially for those on low or fixed incomes and without drug

plans. It is recognized that from time to time people may simply not have enough funds in their budget to allow them to fill their prescriptions. As a result, some people stop taking their medications; others adopt compensating strategies such as reducing dosage to make the supply last longer. These can have negative consequences:

loss of seizure control (and resulting impact on school, work, driver’s license, etc),

prolonged or cluster seizures (status epilepticus, which can be life threatening) and,

increased risk of seizure related accidents.

SUDEP (Sudden Unexplained Death in Epilepsy) has even been correlated with sub-therapeutic levels of anti-epileptic drugs. Taking medications regularly and as prescribed is essential to maintain seizure control.

No one should be without access to his/her medication. There are steps you can take to prevent this situation from developing or when financial setbacks occur:

Talk to your physician – explain that you cannot afford the medications. Perhaps there is a cheaper alternative to the drug you are presently taking. In some instances, the physician may be able to work with the pharmaceutical company to obtain the medications, without cost (on compassionate grounds).

Plan ahead – if you are on a drug plan which will end (due to loss or change of employ-ment, or becoming employed again and coming off AISH or SFI) investigate the possibility of renewing your prescription for a 3 month supply before coverage is lost.

Apply for a drug plan – a non-group drug plan from Blue Cross can be purchased for approximately $14.00 per month. This plan will cover 70% of the cost of

the medications; the amount you have to pay will not exceed $25.00. This service plan is guaranteed to all Alberta residents, you cannot be turned down because of the pre-existing condition of epilepsy. Forms are available by calling Blue Cross at 297-6411 in Calgary or toll-free at 310-0000 for other areas.

Shop around - the dispensing fee will vary from pharmacy to pharmacy. You may save yourself some money by making a few phone calls to find out how much your local pharmacies charge.

Talk to your regular pharmacist – explain your current situation, if its only a few days until you have funds available, he/she may be willing to advance you enough pills until payday. Also, if you have some funds available, but not enough to fill the prescription remember you can do a partial refill.

Asking for help is a smart thing to do – these situations occur to everyone periodically and there are agencies with resources to provide assistance – it’s a matter of knowing who and how to ask. Sometimes embarrassment or fear of rejection prevents people from taking this step. Please do not let yourself become dis-couraged. Your medications are essential to your health. Having a professional referral can greatly enhance the process of obtaining emergency medications; a referral confirms the legitimacy of your needs. Incidentally, your local epilepsy association can provide this service for you.

The United Way of Calgary and Area annual campaign raises funds with the help of tens of thousands of volunteers, donors, agency partners, community groups and individuals. The funds are distributed to nearly 100 agency partners of the United Way for programs and services provided for people in our community.

The Epilepsy Association of Calgary receives a significant amount from the United Way of Calgary and Area. The Donor Choice Program designates your donation to any registered charity. Please consider the United Way of Calgary and Area when making your charitable donations this year.

United Way

The annual campaign kick-off for the United Way of Central Alberta on September 13^th promised to be the beginning of a successful campaign with a goal to raise One Million Dollars for the community.

We appreciate the past support we have received for our Red Deer and area office from the United Way of Central Alberta. Your charitable donation will help to continue their financial support in your community.

Anne Frank

Comings and Goings…

Evelyn Konshuh, Program Coordinator at our Central Alberta Office during the past year left her position in August to return to full-time studies. We wish her much success!

We are pleased to welcome our new Program Coordinator, Sharon Dixon, who will begin her work in mid-October. Sharon has a great deal of experience working in the non-profit sector, not to mention energy, ideas, and enthusiasm. You will be hearing from her in the coming weeks, and we are certain she will be a great asset as we continue to bring "Epilepsy - Out of the Shadows" in the Central Alberta area.

Support Group Meetings

Location:

Red Deer College

56 Ave & 32 St

Entrance - 800 Wing North Facing Door

or

Front Door Commissionaire

Meeting Room 817M

Time:

7:00 - 9:00 p.m.

Dates:

Thursdays

October 18

November 1

December 6

For more information, Sharon Dixon will be available mid-October. Please phone our Red Deer office at (403) 358-3358.