Name: Gail
Age: 37
Age When First Diagnosed: 26
Province/state: Ontario
Country: Canada

Their Story:

           I was always fairly healthy, and had no real medical problems. I was 6 months into a healthy pregnancy. Until one night I was woken up with the paramedics at my door. I had just taken a " Tonic - Clonic " seizure. There was no history in my family of seizures. Something from the pregnancy just made it happened. I was diagnosed with Nocturnal Seizures. I never came to terms with it. I never stayed faithful with my pills because I didn't like the side effects. So for ten years I played with my life. I didn't take my pills. I continued taking seizures in my sleep. My daughter was instructed to call my mother which in turn would come over to "calm" the house down (at that point I was separated). Till that one faithful day, something told me that was enough. I was always had nocturnal seizures but one day sitting at my desk I had a Tonic - Clonic for everyone to watch and see. Some people with tears asked me "Why would I do that to myself and my poor little daughter!" Then I woke up. I was torturing myself and my daughter for my own selfishness. Needless to say, I am now over one year seizure free. I have gained weight do to the fact of taking my medication but hopefully I can get that under control soon enough. Now I am no longer putting my body though that pain nor my daughter. It's hard to come to terms when you have this disorder but the sooner you do the better you feel. It doesn't make us any different.

Name: Moses
Country: Kenya
Their Story:

           I am Moses from Kenya and I have epilepsy. Due to many misconceptions in our culture I could not share it with anybody. My friends ran away from me because they were afraid it was contagious. I’m very grateful that youth like me are taking a stand, and trying to change opinions by education and awareness.

Name: Cleoni
Age: 28
Age When First Diagnosed: 13
Province/state: Ontario
Country: Canada
Their Story:

           One Saturday night, after falling asleep on the couch after watching Mad TV, my mother woke me up and as I was on my way to bed, I had my first Tonic Clonic seizure. Since then, I had multiple Tonic Clonic seizures weekly. Some nights I would pass out in the washroom, others would be in my sleep, and others would be due to a result of stress or lack of sleep. However, these seizures lasted but moments. After each seizure, I was okay. I was back to being the normal funny, intelligent woman that I am today. I have a degree from the University of Toronto, have worked in government, have been in the media, organized community events, have mentored youth, a community and spiritual role model and currently run my own business and I have epilepsy. People with epilepsy are normal okay people. We are not weird nor to be feared, we are normal men, women, children, and youth; we have Epilepsy and that's okay.

Name: Alex
Age: 23
Age When First Diagnosed: 11 months
Province/state: Nova Scotia
Country: Canada
Their Story:

           I was only 11 months when I first started having my seizures. My parents were worried sick. They didn't know what was going on with their little boy. It turn out I have Epilepsy. But I turned out fine. Along the way there was some times that had them worried. But I'm living a great life and have a great job. I have fun like any other person my age. So for all the people talking trash talk, before you open your mouth do some research on Epilepsy. You might just learn something.

Name: Steven
Age: 27
Age When First Diagnosed: 20
Province/state: Ontario
Country: Canada
Their Story:

          (My epilepsy has interfered with my memory so this is based on what my parents have told me) When I was 16 things started to get weird; I would randomly get horrible stomach aches and what we thought were panic attacks. Then when I was in OAC I started getting very paranoid about things and started really spacing out. We all just wrote it off. I was very active in school and sports and life was great. In my first year of university things got worse (I do remember this part a bit) I was getting very emotional. There were time gaps where I could not remember hours and my studies started to suffer. My professors thought it was a learning disability and I was even diagnosed but my parents could not understand that because this was never an issue before university...And it did not explain the physical and neurological factors I was going through. I started seeing things that weren't there; like shadows. I went to my university medical clinic and they misdiagnosed me again and put me on meds that not only did not help but made my seizures worse! My seizures continued to get worse-I would freeze like a statue and I even had a Tonic Clonic seizure, falling into a ditch at work. After that my work got me an appointment with a neurologist but also tried to fire me because of my disability. I was eventually diagnosed with Temporal Lobe Epilepsy and I knew what to expect with my various kinds of seizures and I even knew why after I felt horrible (it's called a Postical state). I had Temporal Lobe Epilepsy and even thought it was getting worse. I felt so relieved that at least we knew and now we could something about it! For years no meds were working and my body started to suffer as well as my mind. Since the seizures were located in my temporal lobe my memory was getting worse-specifically my long term memory and my body was so weak I had to walk with a cane and often times could barely move. Finally my wonderful neurologist put me on Lamotragine and Toprimate, and that helped a lot. I was seizure free for years. When I went into teachers college I was still having some troubles here and there-certainly nothing as bad as it was. Yet my teachers college would not let me go into the classroom until I got a letter from my neurologist because they were afraid I would be a danger to myself and others. Because of this I almost failed my entire year; but thankfully my neurologist gave me a letter that showed people I was fine. I have been a teacher for nearly 4 years now and I feel wonderful. I still have occasional issues but it does not stop who I am. Because of who I am I graduated from university with honours even though people said it would not be possible. When people said I should go on disability because a job would be too hard on my health I became a teacher. And when people suggested that I was too sick to really do too much I got better and traveled around the world. Some people even suggested that things like getting married or starting a family was too much for me. I got married and now my wife and I are travelling around the world. Does life through you curve balls? Absolutely! Does it make us any less capable? Never! Some of the greatest people in history were believed to have a seizure disorder, Joan of Arc, Dostoyevsky, the 19th-century Russian novelist, Aristotle, Julius Caesar, Socrates, Danny Glover, Lenin, and many other famous characters. While it may not be ideal at times we share the company of some the greatest people in today's world and history

Name: Brittany
Age: 17
Age When First Diagnosed: 12
Province/state: Ontario
Country: Canada
Their Story:

          When I was 12-years-old, I had my very first seizure. It was a week before school started again for the summer, and I didn't know what to tell my friends. Those who went to school with me were not very open to those with, what they called, "special needs for the special retards". And, unfortunately, for the longest time, that is what I was called by my peers. My teachers had no idea how to deal with "a person like that", otherwise known as a person with Epilepsy. For the next two years, I was known as "that girl with the problem". I didn't know how to deal with the hurtful comments given by my classmates, so I would deny that I have Epilepsy, and then I would be called a liar.

Now, I am in Grade 12. I learned the hard way how to deal with the hurtful comments. Now, people know not to joke about seizures and Epilepsy. A lot of people now respect the fact that I have to deal with medications and seizures all the time. Now, I am not afraid to say that I have Epilepsy!

Name: Alishia
Age: 16
Age When First Diagnosed: 13
Province/state: Nova Scotia
Country: Canada
Their Story:

          When I was in gr.8, I had my first seizure. I was taking a bubble bath at the time. Needless to say, I just about drowned. I had 3 major seizures after that but now and then I have smaller less serious ones. I have tons of support from my friends and family but there are people in my school that laugh, they think seizures are funny, but they’re not! When I had my first seizure my mom found me under water, I was cold and gray, she thought I had drowned. For people to think that is funny, really makes me mad, my mom thinks its far from funny. She almost lost her only child; that is nothing to laugh about! Epilepsy can be hard to deal with sometimes but I know I am not the only one going through it. I'm pumped a site like this was created, people need to know what we have doesn’t make us outcasts. We are like everyone else.

Age When First Diagnosed: 7 years old
Country: Ireland
Their Story:

          I was born just over 50 years ago at my family home. My eldest brother related to me that I was brought down the stairs "foaming at the mouth". I was automatically rushed to the hospital and put in an incubator. That was the only seizure I had until I turned 7 years old. I was in bed ill and my brother and mother were by my bedside. My hand shook involuntarily and my mother asked my brother if he had moved it. This worried my mother and she took me to the doctor again. She diagnosed something to which my mother asked for a second opinion saying "Doctor, I have raised six children and not one of them has reacted like this." After a second opinion was given I was diagnosed with having "convulsions". It wasn't until a few years later that it was termed Epilepsy. My seizures were different to most in that I nearly always had to be doing something. At school I could have lost bladder control which caused both embarrassment and ridicule from peers, or I could have repeated an action. If I was writing "I went to London for a holiday" and took a seizure during the sentence, it could have looked more like "I went to ‘LLLLLLLLLLLLLLLondon’ for my holidays "After years of medication-at one point over 6,000mg per day-and on average one seizure every two weeks, I was given the chance of Neurosurgery. This was performed in my home town of Belfast, Northern Ireland by a 32 year old newly married man.

With the prospect of lost memory, being left in a vegetative state, death, a vast reduction of seizures or total freedom from them, I chose to try it and see. The alternate was to say in years to come "what if?" had I not taken the chance. Fortunately for me it WAS a complete success. I was weaned off all my medications over a few years, kept waiting initially for the next seizure to happen, which it didn't and for the past 18+ years I have been seizure free.

I have many other stories of some seizures like when I was singing a solo in church and took a seizure right before the solo but sang it anyway without knowing I had, or the times I fell off of my bicycle on the main road. However the main thing is I AM seizure free and have been for over 18 years.

Name: Nick
Age: 38
Age When First Diagnosed: 7 years old
Province/state: Ontario
Country: Canada
Their Story:

          My story goes something like this. I am not a superhuman and I am not God But if there is something I could do is let people know the misconceptions about Epilepsy and the stereotype and what it can do to your life. I have never driven in my life and I a lot of the fun things of life I cannot do because of this disease. I also learnt that if I let it beat me then it will get hold of me and stop me short from living. A smile never cost a penny giving a helping hand to someone you don't know won't take your life away neither is Epilepsy. Hope, Faith, Hard Work, Educate one Another, you can have a beautiful life with Epilepsy and be the happiest person. I think what is in our heart and soul makes it what matters the most and how we are thought to belief. Help one another and educate and me myself I don't see myself has having Epilepsy anymore even I take pills in the morning and nights and have both kinds of seizures and black outs. Pinch yourself for one second and say “thank you” for being alive and tell the important people in your life that you love them...

Name: Erika
Age: 15
Age when first diagnosed: 4 months old
Province/state: Ontario
Country: Canada
Their Story:

          I have had Epilepsy ever since I was born. So I actually know what is going on with myself and I know people who have Epilepsy aren't freaks or stupid. I went through a period of life where I thought I was a freak for it, I don't think that anymore. I realise that I am as normal (if normal actually exists) as anyone else. However, in grade 9 I told a few kids I had Epilepsy and was trying enlighten them to what that means for me, when one of the guys asked if they could call me twitch because of my seizures, and another guy laughed in my face. Fortunately, I could brag to this jerk that unlike him I was in all academic classes and doing well and my friend from grade 2 stepped in and had some words with him. I wasn't so fortunate this year. I was explaining that because of my condition I also have a few learning disabilities and that I needed a quiet room to do my test and a little extra time because of my NLD and he asked if that meant I should actually be in the Special Ed Classrooms. I know I'm smart I know anyone who has Epilepsy is probably just as smart as me and that just because we have a condition doesn't mean it limits us.

Name: Joe
Age: 35
Age When First Diagnosed: 12
Province/state: Ontario
Country: Canada
Their Story:

           My story? I was diagnosed when I was about 12. My absence seizures were so minor that no one could tell I was having a seizure. I could carry on a conversation, continue what I was doing or both while having one. I could "feel" this "feeling" for a couple of seconds. I didn't know what it was so I never said anything to anyone. Finally, yes, someone noticed something and Doctor Appointments were made, tests and so on. The result being my diagnosis of having Epilepsy. Time went on and not much changed until after high school. Things got worse. Meds weren't helping-nor were my Doctors. I decided to find another Doctor on my own to at least try to get things changed. It worked out well for me and I still feel very fortunate to be where I am now. I had a left temporal Lobotomy on October 15, 1999. No seizures since that day.

Name: Sara-Elizabeth
Age: 14
Age When First Diagnosed: 16 months old
Province/state: New York
Country: USA
Their Story:

          Hi, my name is Sara-Elizabeth, but most people just call me Sara. I am 14 years old and I have epilepsy. I was diagnosed with Idiopathic Benign Childhood Epilepsy at 16 months old. While I am currently seizure free, I do still have residual side effects from my seizure disorder, and I am still under the care of a Neurologist. I experienced both Tonic-Clonic and Partial Complex Seizures. Because of my seizures I did spend extended periods of time in hospitals. I was on adult doses of anticonvulsant medications just to keep my seizures under control.

I do not remember how others treated me because of my seizures when I was younger, but I have been told that some people looked at me with pity in their eyes, while others looked at me with disgust. I have also been told about the difficult times I had when my parents tried to set up play dates with my friends. Some families did not want me to come to play at their homes because they were afraid I would have a seizure and they would not know what to do.

I am an Epilepsy Advocate and I started my advocacy work with Sara’s Annual Walk for Epilepsy in my hometown of New Paltz, New York. I worked with local agencies that served individuals with epilepsy and the State University of New York at New Paltz (SUNY) to organize and promote my walks. To date, I have held four walks and collectively they have risen over $50,000.00. All monies raised went to support those with epilepsy. My Walk for Epilepsy also does many other things besides raising funds for better services and support. It also promoted general awareness, educated people, and per my personal mission, it helps break the stigma that surrounds Epilepsy. My website "www.itsnotwhoiam.com" promotes the idea and belief that I will not let my Epilepsy define me as a person. I ask that no one judge a person wrongly because they have Epilepsy or anything else that makes them different. What a boring world it would be if we were all the same!

In addition to my walks I have participated in regional print and television ads, held a breakfast, held a race, been on local and national radio programs, visited Washington D.C. on two occasions to meet with my representatives, and spoke to children from all around the country, all of this was to encourage others to talk about epilepsy, raise awareness and break the stigmas that surround it.

Because of my hard work, I was contacted by a local author and publisher. Together they wanted to write my story. I was more than excited to work with them on this project. It took two years and lots of work but the story Being Sara is now available! It is my hopes that my story will inspire others to talk about epilepsy and how it affects their life and inspire others to reach out and make a difference in their own communities. The Author of Being Sara, Chris Passudetti once told me that, “growing up is difficult but if you see your difficulties as opportunities rather than burdens, there is no limit to the positive impact you can have on your community, no matter how old you are.” It is my hope that everyone that reads Being Sara comes away with this message.

This brings me to the point of this Rant. What really drives me crazy is how some people joke about Epilepsy. They may think they are witty or funny but most of the time they are just hurtful!

Name: Joel
Age: 30
Age When First Diagnosed: 11
City: St Cathrines
Province/state: Ontario
Country: Canada
Their Story:

           This should start with thank you to my Uncle Bobby. When I was first told I have Epilepsy I was scared the doctor and my mom tried to explain I can live normally and it would not affect me too much. Well I would not believe them I felt like it was finally in writing that I am different than all the other kids. Then my Uncle Bobby came over and sat me down and told me it was nothing to take my meds and the world would not even know he told me it was not the worst thing to have and he has lived a good life with his Tonic Clonic seizures. After hearing him and not only listening to what he said but trying to do as he suggested. “Just be a kid because this doesn’t make you weird or different” Well Uncle Bobby thank you. You gave me words to literally live by .You are now gone and you did not depend on any one your whole life you did your own thing and did not let Epilepsy become a noose around your neck. You lived. My only regret was that I was not there the day you had that seizure that made you have a heart attack and die but I won’t let what you told me end with you. So please no matter what live and enjoy life. It isn’t even that big of a deal to have Epilepsy.

Name: Lisa
Age: 19
Age When First Diagnosed: 14
City: Alliston
Province/state: Ontario
Country: Canada
Their Story:

           I was diagnosed with Epilepsy when I went into grade 9. My mom found me looking like I was staring into space a lot and a long time. I stared to go to a doctor at my local Hospital and then he sent me to a doctor in Toronto then that doctor sent me to the Hospital for sick Children. I spent 4 years there until they decided to do surgery on me the summer before grade 12. They put a grid on my brain for a week. The next Monday they went back in and scraped the scar tissue off my brain. I did not have seizures for the longest time. I went back to school after the Christmas holidays and that week I had a seizure. When I was done school I was only having one seizure per month. I am now going to Toronto and talking about another surgery.

Name: Jessica
Age: 27
Age When First Diagnosed: 19
City: Barrie
Province/state: Ontario
Country: Canada
Their Story:

           The first seizure I remember was in grade 3, but I'm told I had Tonic Clonic seizures as an infant as a result of an allergic reaction to Penicillin. I suffered from 5-10 Complex Partial seizures daily from at least grade three until I was 21. I suppose I'm what people would call the lucky ones. I had an operation in 2003 in Montreal to fix my seizure disorder which was apparently caused by scar tissue on the right temporal lobe. As a result two parts of my brain were removed. I lost my Hypo Campus and Amygdala (short term memory and mood control. Surgery was fantastic ... waking up afterward was by far the most traumatic thing that has ever happened to me. I have not had a seizure now since January 9th of 2003, the day of the surgery.

For all the years before that operation no one knew what was wrong with me, or rather people thought there was nothing wrong with me. I was treated as if I was just troubled kid who did not listen. I would often 'space out' during times of high stress, namely public speaking, or any other super stressful points for me, being yelled at etc. Because I had a complex partial seizure I just became non responsive at the beginning, but as the years passed the seizures got much, much worse. My body would continue to do whatever it was doing before the seizure started, but I had no control over myself. For up to 30 seconds at a time my body did what it wanted. If I was walking when the seizure started I would continue walking, that lead to some falling down stairs, walking into traffic, I once wrote 3 black boards worth of notes without realizing it...the notes were accurate but I did not recall even being there... There were cases where I would have 'accidents' that I can remember! That only happened 5 times. But I lived like this for many years without anyone knowing what the problem was until I was referred to Dr. Olivier at Montreal Neurological Institute. I spent a few weeks there doing telemetry (24 hour EEGs) with cameras on me all day and night to catch the seizures. 3 months later he had me in for surgery. In a 3 month period I went from being a girl who was just a behaviour nightmare to being a kid with a curable condition. January 9th was surgery; by September 2003 I was off all meds.

It was several years after that before I was able to regain all my short term memory, for a long time I could not follow anything I read because when I got to line 2 I forgot what line 1 said. It took years for the rest of my brain to pick up for the parts I was missing

I just got my G1 in August! I'm now 27 married and divorced, no kids, I graduated college twice with an honours diploma both times. It took a lot of work on my part to 'learn how to learn' again. I had to make accommodations for the fact that my short term memory was bad and I still do today, post it notes are my friend.

To all of you out there suffering with this horrible issue there is hope. If you want it to go away try to see Dr. Olivier, he can't fix everyone, but if it’s fixable he can do it.

Name: Karl
Age: 30
Age When First Diagnosed: 9 months
City: Ajax
Province/state: Ontario
Country: Canada

*Photos at bottom*

Their Story:

           My name is Karl and I have had seizures since I was 9 months old. I have had seizures for 29 full years, and I am only 30 years old. My life has been a very rough life, and it felt like it was getting worse and worse for me, the harder I tried to succeed in life, even though I wasn’t able to succeed. My effort level has always been extremely high, but achieving my goals has not, until now.

With my life being extremely hard on me throughout school, friend and workplaces, I was able to manage to move up in life. In my past, I have always said I am never having brain surgery, because I don’t want to lose any functionality, but as I saw how life was getting harder and harder for me, one neurologist in Mississauga referred me to a neurologist at the London University Hospital. At first, I was telling myself, I will go with the testing, and you watch, I will not be able to get surgery for whatever reason. As I built more and more confidence in the neurologist and the neurosurgeon, I became less afraid and more trustworthy. After being tested with electrodes in December 2007, I was told they see activity on both sides of the brain, but need to do more in-depth testing, by having a sub-Dural surgery. I accepted that, and had that surgery in April 2008. Once I saw how easy it was for me to have the sub-Dural surgery, I told myself, if I am able to go through with my final surgery, I will do it. It turned out I was able to, and so I put myself on the waiting list immediately. As time was getting closer and closer for my final surgery, I was getting frustrated, and stressed really fast, because I was afraid of losing my job as I went on short-term disability. I also wanted to make sure I left when I felt my job was 100% done with a good worker to cover for me until I return, and still have my job. On November 18th, 2008, I got the call from London University Hospital in regards to my surgery time and date. It was the following Friday, November 21st, 2008. I was very lucky in getting my legal will and powers of attorney done that week, knowing that if I were to pass away, my property will go to whom I want it to go to.

On the Thursday afternoon, I went from Whitby to London, and stayed overnight in London. I had to be in the hospital and registered by 6:00am, as my EEG is going to be at 7:00am. The official surgery will be at 8:00am.

As I woke up that Friday morning, many loved ones around me was frightened, but I had faith in my surgeon, and I wanted to be seizure free. I had a VERY positive thought and emotion, and I had a picture in my head about all this. I told myself that with me going through surgery, I am walking through an open door, that I can’t see inside quite yet, but once I go through that door, I can’t exit that door. I told myself I am going through that door, in a very positive manor. I remained calm, and relaxed, and was very thankful for what all the doctors and loved ones are doing for me.

As I started my surgery, I was told I can sleep now if I want, or I can remain awake. I will have to be awake for part of the time, as I am being questioned on telling them what the pictures are that I see, and counting backwards from 20. I was only expected to be awake about 35% of the time, but it turned out I was awake for 80% of the time, and the surgery was 2 hours shorter in time than it was expected. I was told it was because I remained calm and was very relaxed.

During surgery, I even asked when the surgeon will take pictures of my brain, seeing I did bring my digital camera. He ended up taking 2 pictures of my brain and 1 of my face during surgery.

As surgery continued, the surgeon explained to my loved ones that my memory may not be good at all for the first 24 to 48 hours after surgery. If I forget who my mother is or anything like that, don’t worry, he will know in the near future. After surgery, as I was placed in the emergency room, I seen my mother and her loved one, and I surprised them instantly. I remembered today’s date, and I remembered the page she was on in her book before I left for surgery. She was shocked. Throughout the weekend, I didn’t need too much assistance, and my memory was still good, so once Monday came, I was able to go home, with me having homecare for the next few months.

As I got home, my memory was still great, but of course I was having a massive headache, and was taking pain killers for the first week. As time moved on, I was taking less and less pain killers, and doing more and more movement and light exercise. After 6 weeks, I had an appointment for a check-up with my neurosurgeon, and I was happy to tell him, I am still seizure free. I also made sure I was doing a lot of walking indoors, seeing it was winter at this point in time. I then began to shovel the driveway, if there was a low amount of snow. If I know a lot was coming, I shovelled 3 to 4 times a day with 3 hour breaks in between. It was a good workout for me, as I know I did not overdue it. At the same time, I went to speak with a couple of Epilepsy society’s, and told them that I want to help others in regards to brain surgery and epilepsy. I was given a guest speaker presentation at the Pickering Library, and my speech helped a few people. After that, my contact was referred to those thinking about having brain surgery in the near future, and wanted to know everything good and bad. I was/am 100% honest to others in regards to how Surgery went well for me, and my history with epilepsy. I feel with me telling those about my experience, it helps others. After 3 months of my brain surgery, I was able to return back to work as a store receiver. I was still on light duty for 3 additional months, which all my co-workers cooperated with me. I do thank them very much. After 6 months from my surgery, I gradually began to lift a little more until I felt I lifted too much. As of now, I can do everything I did before surgery, and more.

With my joining a marathon with Epilepsy Toronto, and practicing for a long bike-a-thon for year 2010, I have been very motivated, and gaining more and more pride as I am going out in public, not scared to have a seizure, and helping those epileptics all across Canada. It is giving me such a positive feeling, and it makes me more and more happy each and every day.

With me being seizure free now, I would like to give a very special thanks to my neurosurgeon, Dr. David A. Stevens, all the doctors and nurses at London University Hospital, my neurologist in Mississauga for referring me to my neurosurgeon, and for all those loved ones who was caring, and loving towards me. I never thought that many people really cared about me. I would also like to thank all the epilepsy support groups throughout Ontario for mentally helping me as the days went by. Thanks to everyone.

Photos:

Name: Steve
Age: 52
Age When First Diagnosed: 18
City: Skokie
Province/state: Illinois
Country: United States
Their Story:

The Real Me

For most of my life I felt down on myself,
on the outside I didn't look down on myself.
What was felt on the inside I kept to myself,
since I didn't know how to talk about myself.

When growing up I felt different than others,
in so many ways I kept it from others.
Playing ball with the guys was easy to do,
But talking and talking wasn't easy to do.

Why I felt different I knew pretty well,
it was kept to myself so very well.
In school friends could study to learn new things,
I tried to learn, couldn't remember a thing!

Growing up wasn't easy most of those times,
feeling different than others so much of the time.
Since no one would listen from deep in myself,
so much from within me was kept to myself.

As a kid in my own way I gave up with learning,
I bluffed my way through barely doing much learning.
As the boomer's where pushed through like cattle when learning,
I pretty much gave up on trying to do learning.
Back then never told why I felt like I was,
I felt It was wrong to be just how I was.
Told over and over I could do what I tried,
but over and over I failed when I tried.

I felt more alone as I grew as a kid,
the more that I grew, the more that I hid.
Self confidence was something not easy for me,
since learning new things was just failing to me.
After high school had ended I was not looking bound,
that fall hell began when I fell to the ground.
Was told I had epilepsy a seizure I had,
these new words to me, didn't sound all that bad.

My Dr. never told me to read what I can,
to learn what I can, as soon as I can.
My Dr. just told me to take these few pills,
both morning and evenings I took the few pills.

He told me the pills would stop more of the seizures,
that’s all that he told me about having seizures.
Six months later I went jogging one night,
later fell to the ground with a seizure that night.
I changed so much more, feeling down on myself,
I never felt worse feeling down on myself.
I didn't understand why I felt so much worse,
my Dr. never told me I would feel so much worse.

Others all around saw me change so much,
I didn't even realize that I changed so much.
As drugs made me make more and more mistakes,
Felt I was a failure for making mistakes.

I felt so depressed each and every day,
looking down on myself each and everyday.
Felt like a failure in every which way,
was alone in this world in so many ways.

The next couple years where the worst in my life,
felt confused, so frustrated looking down on my life..
I tried to find answers to deal with myself,
didn't know anybody who felt like myself.

Nobody could relate to why I felt so down,
since nobody could feel what was bringing me down.
The inside of me people couldn't read,
the outside of me is what people would read.

I felt totally lost in this world we call Earth,
Couldn't find answers, whatever that’s worth.
Others around me couldn't feel my pain,
if they jumped in my brain they would feel my pain..

The epilepsy and drugs affected me so,
nobody understand how they affected me so.
How do you deal with the problems they bring,
if nobody around me understands what they bring?

These years in my life where the worst in my life,
making me wonder if it’s worth having life.
I took out the butcher knife one winter night,
I wanted to end it that one winter night

Drove down to the lake front that one winter night,
with the snow all around me that one winter night.
Climbed onto the rocks at the lake front that night,
to end it, falling forward to the water that night.

I rolled up my left sleeve that covered my wrist,
Then looked at my wrist as the knife touched my wrist..
The knife slid across over my thickest veins,
opened a few cuts away from the veins.
A wimp I sure was to cut open my veins,
So scared to feel the pain in my veins.
After failing that night I felt worse than before,
I felt more alone, that much more than before.

Back then in the 80s is the reason I'm here,
In all reality should have been gone all these years.
All those years feeling so much alone,
helps me to helps others who feel so alone.

Never had a friend in those years all alone,
the friend that I needed when I felt so alone.
So now I can try to be that kind of friend,
by listening not judging, now that a true friend.

I want to help others who feel so alone,
I try to help others to not feel alone.
I wish I had friends who wouldn't judge me back then,
judging not listening brings talks to an end.

We all need support in different ways,
I've learned how to do that in a couple of ways.
In some ways I'm lucky to have lived like I have,
because others don't make it as far as I have.

Now that I've changed in so many of ways,
Hope to help others in changing their ways.
We all are so different in so many of ways,
listening to others helps so many ways.

Its not just your talking that means much to others,
listening to others means so much to others.
Though that our lives are so different so much,
listening not judging helps so very much.

Name: Joe
Age: 43
Age When First Diagnosed: Birth
City: Dayton
Province/state: Ohio
Country: USA
Their Story:

           I was born with Epilepsy in Pomona California. Since having it and growing up with it seemed I was the only one who had it. I did not know anyone else who had had it. I felt like an outsider among others: always having to take pills, not being able to go to dances because the strobe lights and the flashing lights. As a child I was told by doctors all over I would not be like other kids be able to do the same things they were able to do. It was during all of these appointments where I had decided to show them I was just as normal as the rest of the kids around me. I loved sports and loved to play them but they told me I would not be able to cause of the stress they have and pressures. I started showing them by learning to swim and playing baseball. I lived in Alaska where I played little league for the Martins I played 1st base and outfield and through the time I played we won all 15 games and without having a seizure. I was determined my whole life to prove just how wrong the Doctors were. I am 43 now and through all of that I showed them I can drive and work heavy machinery such as forklifts, Lulls, man lifts and so forth. I have worked construction work for 13 years and in those years I was a Iron worker walking steel beams in the air from anywhere from 15 feet to 75 feet in there air with no safety harness and using all kinds of tools and working in the hot sun. They told me I would not be able to be in the hot weather for long periods of time but I was the only one on many jobs who could actually stand the heat. I know there are many out there that think they can't do things like this and some may not but others can I am living proof we can be like others and live normal lives like other who do not have this. My mother saw it as a handicap I saw it as a chance to prove others wrong it was not a curse but a gift to me. I have shown everyone I can be as normal as the next person and do the same kinds of things they can and even better at some then they are. So I would like to meet others who have it and love to write back with them and share my life with ones who have such hard times while living with it. We are people who deserve every chance to have a normal life like everyone else. Do not let this get you down use it to push forward and show others you are just as good as they are.

Name: Emma
Age: 12
Age When Diagnosed: Around 12
Their Story:

          Hello, my name is Emma, and I am age 12. I was recently diagnosed with "petite mal seizures or Myclonic seizures." I was at a friend’s birthday party and I had to leave early for dance class. I am a competitive acrobat, I enjoy dance very much. Anyway, that morning, when I came home from the birthday party, I was going down the stairs after getting dressed and I had a very large seizure that was not quite a Tonic Clonic seizure, and fell down the stairs and hit a wall. The wall was the one thing stopping me from going all the way down. My father heard me and thought I was jumping on the stairs and asked me to stop. I had no idea it was a seizure, therefore I said to him I would stop jumping, even though I fell. As I got up, I walked down the rest of the stairs and went to my kitchen to get some milk and dropped it. Milk covered the floor. My whole upper body went into severe convulsions and my mother was flabbergasted. She sat me down on the couch then quickly after rushed me too emergency. I was diagnosed later on in the summer.
Those had not been the only dangerous episodes I have had, but that was the time that my parents found out.

Name: Felisha
Age: 16
Age When First Diagnosed: 8 months
City: Sarnia
Province/state: Ontario
Country: Canada
Their Story:

           This story is written by mom and dad. Felisha was born medically fragile and confined to a wheel chair. She is legally blind. She sees shapes and shadows. She is undiagnosed, but to make things simple for government purposes we name her condition as Cerebral Palsy, which is actually an insult to her. Felisha's brain looks like an elephant skin, no wrinkles like a "normal" person. Felisha is like an infant. She coos and makes noise. We tend to care for her as best we can if she is crying, if she is wet, if she is hungry, if she is running a fever, etc. Now you know Felisha a little bit and know that she is dependent on us for every part of daily living.
Felisha has what you call Tonic Clonic Seizures and Absence Seizures. Without medication they could be worse.
What I would truly love to know to help me is there are times where she comes out happy and then there are times when she is very fearful and during those times she cries and has a fearful look on her face. We have been told that it depends on what part of the brain the seizures are in. I would love to know what is going on during those times. Thank you for this website, Felisha is 16 and really is still our baby...

Name: Mike
Age: 24
Age When First Diagnosed: 21
City: Mississauga
Province/state: Ontario
Country: Canada
Their Story:

           Growing up, I never thought about the damage that could be cause from my behaviour. Then it hit me...

From a young age my head was constantly getting hit. Whether it was from fights, biking, car accidents, or just plain old being a kid, my head got hit A lot.
It was June 27, 2007 and I was alone in the basement of my mom's house. At 7:58pm, I went to make my way upstairs to get a drink. The next thing I knew, I was pulling myself off the floor from a puddle of drool, and had the worst headache I had ever experienced. When I got upstairs, my mom didn't believe anything was wrong, and since I had a slurred speech, she thought that when I fell again that I had just had drank too much. I then noticed it was 8:23pm. I had been unconscious for over 20 minutes. When she saw the imprint of my glasses on the side of my face and the drool mark on the basement floor, we went to the closest hospital.
When the doctor finally saw us, the first thing he said was, you had a seizure. My mom and I were both scared at first, but within moments that passed. Our fear turned to relief, as we finally had an answer to what was causing my common tremors too. Now, 2 and a half years after and many requires tests later, my seizure frequency has significantly decreased. I began volunteering with epilepsy organizations wherever I lived and have been doing anything I can to raise awareness.
My only piece of advice is: Don't stay trapped in the shadow of fear. Stand proud, and rise out of the shadows. Be aware, and raise awareness.

Name: Phil
Age: 29
Age When First Diagnosed: 16
City: Ottawa
Province/state: Ontario
Country: Canada
Their Story:

           In the summer, just before school I had a seizure in front of my friends. I felt relatively normal. It took the doctors 2 years to officially diagnose me. My first year was full probing and test and switching me pills to pills. Then a Neurologist told me a I didn't have Epilepsy. I stopped taking the pills however, no sooner that I stopped i had a seizure. I felt isolated and had people calling me names (you know the bully stuff). By the age of 18 I dropped out of high school needing one credit to get my grade 12. A bully called me” epilepsy boy” on the day after I was diagnosed officially I flipped. I eventually got my grade 12 when I was 19.I had jobs where I couldn't to specific tasks, therefore I could get hired or I was a high risk. The trade I wanted to achieve in was Carpentry. From my grandfather to my father and I was hoping to carry on that dream. My Dad got me a job as a labourer, I was so happy I love working with my hands, and it’s in the family. Unfortunately I had a seizure on a scaffold and that ended my career. Now I'm married, have a handsome son and now I am working in a fast food place. The place doesn't have proper safety codes and for ladders up to 12-15 feet high and the ladder goes up to 7.
I'm pissed I mention it but they refuse... and don't care cause they have to spend extra money on a person however, I found more people with Epilepsy and they all agree. To think of something else I've turned to is music. I play bass and a bit of keyboard, Praise that I had that, I wouldn't come through alive without them. I thank you all for your effort I felt so alone. You have NO IDEA.

Name: Kevin
Age: 35
Age When First Diagnosed: 10
City: Hamilton
Province/state: Ontario
Country: Canada
Their Story:

           I’ve had epilepsy for 25 years. I’ve been listening to some of these kids story’s. I feel for them; I’ve been there. People deal with it in many ways. The best way for me to cope with it was make a joke about it. When I was a kid I knew of 2 types of seizures: Grand mal (Tonic Clonic) and petit mal (Absence). To this day I still say I have petit mal seizures. A long seizure for me is roughly 3 seconds. Now there’s like 20 kinds. My first seizure was when I was 10. Lucky for me I was in bed. My mom and dad had no clue what was going on. I don’t remember a thing. I do remember though snapping at my mom dad and brother. I would have a seizure out of concern they would ask if I was ok, I would turn and yell at them “Do I look ok” or “It’s your fault I have this”. As I got older, I dealt with it. I live like a normal person. I can do things many people with Epilepsy can’t do and would never try. Like I said I live like a normal person. I work with power tools I even did roofing for 2 years ,I fell off a 2 story house landed on BBQ 15 minutes later I was back on the roof. I even went back for one more year. Now I’m not telling everyone go do these things. What I am saying is know your limits, don’t use Epilepsy as a crutch. Find a good doctor get on the right meds. You too can live your life with no fear; you just need to know your limits. Some things I’ve done were stupid. I was just lucky.

Name: Seth
Age: 26
Age When First Diagnosed: 11
City: Natrona Heights
Province/state: Pennsylvania
Country: United States

*Photos at bottom*

Their Story:

           Hello my name is Seth and I have Epilepsy. I had my first seizure a couple weeks before starting 6th grade. I have Tonic Clonic seizures and they are controlled. Shortly after seeing my first Neurologist he had suggested that my family and I get in contact with the Epilepsy foundation of western Pennsylvania. Since meeting them I have learned a lot about what Epilepsy is and how not to let it define who I am as a person

Video:

Name: Kaitlyn
Age: 18
Age When First Diagnosed: 7
City: Ottawa
Province/state: Ontario
Country: Canada
Their Story:

          I had my first seizure when I was in Grade 3, so I have been living with it most of my life. I will not grow out of my condition so I have come to terms with the fact that this is something I will have to battle for the rest of my life. I average about 1-2 seizures a year. I am 18 years old and I am not able to get my license because of my epilepsy. Most of my seizures have occurred at school and have been witnessed by my peers. Most of them are very good when it comes time with helping me and know what to do others can be harmful with their comments and poke fun at me. Not being able to drive is really hard for a teenager, relying on your parents and friends to drive you around. My friends will make jokes like “I’m going to put a strobe light in my car so that you can’t get in my car" and everyone will laugh along. I laugh with them but deep down those little jabs hurt. In a sense it takes away my freedom, I’m from a small town so I have no form of transportation therefore my Epilepsy limits my ability to do certain things and sometimes my friends aren’t very understanding of that they just expect me to be able to do everything that they do. I also find young people bring up convulsing in a joking matter quite abit. It’s kind of painful to hear. Unless they have witnessed it they seem to think it’s funny. I really hope that this website can help people to see that Epilepsy is not a laughing matter, we don't enjoy being laughed at.

Name: Bryan
Age: 26
Age When First Diagnosed: 9
City: Toronto (Richmond Hill)
Province/state: Ontario
Country: Canada
Their Story:

          Hello I have just heard about this web site while watching TV and I have to say that I’m so proud that people are fighting back and letting people know that we are no different from others and it has been nearly been three years since my last seizure but when it happened,I can thank the people who were there to help me and the ones who called 911. I had only met the 30 minutes before the seizure and they could have robbed me for my stuff and ran off. After words I saw them and said to them “I owe you my life and respect!” My first seizure occurred when I was 9 and at the dinner table having corn on the cob and well, the rest is all history. Any time I go to my doctor for seizure check up I always see the kids coming in and in always trying to let them know that a seizure last 3min and a dream can last a life time and don’t worry about what others think, if a person has a dream go for it. There is nothing wrong with having a seizure. Heck I’ve had many jobs including gas clerk, Dishwasher and even a security guard.

Name: Kyle
Age: 24
Age When First Diagnosed: 13
City: Georgetown
Province/state: Ontario
Country: Canada
Their Story:

          I was diagnosed with Epilepsy when I was in grade nine and had my first of 3 Grande Male Seizures. At first it was a large stressor on both me, and my family. My mother was reluctant to let me have baths, sleepover at friend’s houses or even go to the park to play with friends. I was committed in taking my medication and soon returned to living in a "worry free" environment.
The one struggle I had for the first year or so that I think every young adult freshly diagnosed with Epilepsy faces was the challenge of Educating peers and family. Many times was I asked, "Epilepsy is that when you fall asleep all the time"? I figured it was my job to spread the word and educate all those who didn't have a clue. Eventually I got to a point where friends knew, but more importantly respected my triggers. When we went out for a night on the town, it was to a pub and not a club with strobe lights. When I had to cancel original plans because I needed to sleep to reboot my batteries, they understood. There was no way that dealing with Epilepsy would have been this easy without the support of my friends and family. However, there is no way that they would have been that supportive without me educating them.
I am 24 years old. I am married, I work at a high school and yes I have my license. Medication, knowledge and understanding are key factors in helping me live and wonderful and normal life!

Name: Crystal
Age: 13
Age When First Diagnosed: 7
City: Halifax
Province/state: Nova Scotia
Country: Canada
Their Story:

           My story starts when I was in grade 2 and I had a really weird day spacing out seemed like i was day dreaming so all day I had to ask over and over again the same questions. I felt so dumb that day and since I was upset I came home and went in my room and a hour later I had my seizure and 5 minutes later my mom came and check up on me and she was screaming and crying and when i woke up i was on a stretcher on my way in to the ambulance and I was diagnosed with epilepsy. By grade 3 was reading at a grade 1 level and was going to go in resource badly for 6 years now still with epilepsy i am out of resource and reading at a grade 7 levels like everybody else because of three years of extra tutors. So the moral of this story is if you have epilepsy and feel like you want to give up like your alone, never learning, your friends aren’t supporting you never ever give up because it WILL pay off trust me.

Name: Chris
Age: 20
Age When First Diagnosed: 14
City: Sarnia
Province/state: Ontario
Country: Canada
Their Story:

           My name is Chris and I have a story that still haunts me. When I was diagnosed with epilepsy in Grade 8 I was instantly thought of as an outsider. My best friends that I grew up with diminished and didn't want to hang out anymore, I couldn't believe it, my best friends left me to dry going into grade 9. Grade nine was the worst year for me, I had four seizures in my science class in one semester and that set my reputation for the rest of high school. It seemed that every time I went out with some friends or just played sports I was scared to have a seizure in front of people, the seizures didn't hurt me but I was embarrassed with everyone looking at me on the ground. Recently I was driving home from a concert and had a full-blown seizure; I lost control of the truck, hit a 20 year old girl walking on the sidewalk then drove through fences and finally hit a tree. The girl is alright now and I escaped with nothing but a few scrapes and bruises. After that I rode my bike everywhere because I was scared to be around a car/truck. There are still many people I know that still have not adjusted to my condition but I remind myself to look on the bright side and stick with my closest friends that understand that it's something I can’t change and that I have to live with it, so they look right through the epilepsy condition and that’s what makes them my true friends.

Name: Randy
Age: 40
Age When First Diagnosed: 5
City: Santa Rosa
Province/state: California
Country: United States
Their Story:

           I was born with epilepsy they didn’t find it until I was 5 I had up to 14 seizures a day. It was hard growing up with Epilepsy, kids teasing you, fight with you to make you have one, hard to find friends, I have been through it to. Ii recently got divorced after 6 years and I’m raising 2 great kids , I believe I have overcome the Epilepsy, haven’t had a seizure in 26 years, stay on the meds it does work , ignore the negativity from others and live your life we can do anything next I’m going skydiving.

Name: April
Their Story:

          I have been seeing the commercials so I decided to check out the website. It is nice to see some awareness being generated surrounding seizures. My brother has had Tonic Clonic seizures his whole life, and has injured about every part of his body from dislocated shoulders, cracking his head open, even knocking out his two front teeth! Over the past year and a half he has had two status seizures which were a cause for concern but he seems to be doing better. I work at a University where I interview potential volunteers who will be working with people who have seizures and one of my interview questions is related to if they know what a seizure is and do they know how to respond. About 1 in 30 knows. I think a lot of people have no clue as to what a seizure is and are frankly very scared by them. There is still also a lot of misinformation floating around as I commonly hear "I think I put a spoon in their mouth?"
Thanks for making a website dedicated to this. I hope that people who have epilepsy feel supported by it and people who don't can learn how to respond maturely and properly.

Name: Jen
Age: 25
Age When First Diagnosed: 21
City: Matteson
Province/state: Illinois
Country: USA
Their Story:

           I was surprised when I had my first seizure. I had been serving the in US Army Reserve for almost two years at that point, and I in fact had my first seizure during a training assembly. I was sitting at a desk working, and then the next thing I knew, I was in an ambulance and a paramedic was taking oxygen prongs out of my nose. I went to the hospital, where a few tests were run (blood and urine work, including a Tox screen, and a CT scan), all of which came back normal. I was then told to follow up with a neurologist.
I followed up with a neurologist, who had more tests run (more blood and urine work, an EEG, and an MRI). All but one test came back normal. The one test that didn't was a thyroid test. I was then prescribed Lamictal and told not to drive or operate dangerous machinery for the next six months. This meant that I couldn't work at my civilian job (I unload trucks at UPS outside of the Army).
I didn't have another seizure for three years. But then I had one last month, at work. One minute I was sitting down, the next thing I knew, I was on a stretcher and a medic was saying something about a Tonic Clonic Seizure. This seizure was due to my own stupidity, as I hadn't taken my medication in two days (extreme forgetfulness-either running out the door in the morning and not realizing I didn't take my medication until I was on my way to wherever it was I was going, or being out and being so tired that the last thing on my mind was taking my meds.). I went to the ER, where I was more or less chewed out for not taking my medication, told to take it when I got home, to see my neurologist, and not to drive for the next six months.
I have been taking my medication faithfully for the last month, and have been seizure free. I have learned my lesson the hard way, and I am committed to taking my medication faithfully to keep from having another one.

Name: Dave
City: Ottawa
Province/state: Ontario
Country: Canada
Their Story:

           I have JME (juvenile Myclonic Epilepsy) and was only diagnosed when I was 18, quite inconvenient. I was wondering if you had any inquiries from people my age about entering into the criminal justice field. I am graduating at the end of this year (April) with my honours in Criminology from Carleton University in Ottawa and want nothing more than to gain entry into the federal public service sector, though I feel my condition is having a significant impact on my application process to agencies such as CSIS and RCMP, hence the inconvenience factor. Inability to work night shifts has been the most damaging to my career initiative as a police officer. If you can let me know if there has been anyone else with involvement in this type of situation and perhaps their experience with it it would be much appreciated.

Name: Nina
Age: 32
Age When First Diagnosed: 15
City: Simcoe
Province/state: Ontario
Country: Canada
Their Story:

           After having sudden strange seizures start when I was around 13, the doctors all said it was stress. I would wake up in the morning and have convulsions, or slight muscle spasms that would gradually get worse until I was rendered unconscious. I could not hold anything in my hands as it would be flung in one direction or another. I've never had anything happened to me that angered me as much as those seizures. I always felt that i could somehow control them, or make them stop on my own. Eventually I was diagnosed with a rare form called Juvenile epilepsy of Janz. Grand Mal Seizures. I took the medication for a while and finally said screw this and stopped. I have not had a seizure in almost ten years. I believe the causes of my convulsions are on a spiritual plane as like some physical ailments are for some. I have my opinions and beliefs and proof for my own mind. That is all that matters, and I know I will never have a "grand mal seizure" ever again. I hope to meet someone who has walked my path, because it wasn't an easy one, but now i can look back and laugh because no one knows me better than me, despite what any scientific evidence may or may not tell them, or you. My experience has opened several hidden doors to me, widely. All I can say for others out there with epileptic seizures is, you’re not alone, you’re not slower or less intelligent, and it's okay to think that your special and there are people out there with gifts, and talents and quirks. Don't let anyone make you look down on you.


I'm a PSW, and just recently finally got my drivers license.

Name: Kaitlyn
Age: 18
Age When First Diagnosed: 7
City: Ottawa
Province/state: Ontario
Country: Canada
Their Story:

           I had my first seizure when I was in Grade 3 so I have been living with it most of my life. I will not grow out of my condition so I have come to terms with the fact that this is something I will have to battle for the rest of my life. I average about 1-2 seizures a year. I am 18 years old and I am not able to get my license because of my epilepsy. Most of my seizures have occurred at school so have been witnessed by my peers. Most of them are very good when it comes time with helping me and know what to do others can be harmful with their comments and poke fun at me. Not being able to drive is really hard for a teenager, relying on your parents and friends to drive you around. My friends will make jokes like “I’m going to put a strobe light in my car so that you can’t get in my car" and everyone will laugh along. I laugh with them but deep down those little jabs hurt. In a sense it takes away my freedom, I’m from a small town so I have no form of transportation therefore my epilepsy limits my ability to do certain things and sometimes my friends aren’t very understanding of that they just expect me to be able to do everything that they do. I also find young people bring up convulsing in a joking matter quite abit. It’s kind of painful to hear. Unless they have witnessed it they seem to think it’s funny. I really hope that this website can help people to see that epilepsy is not a laughing matter; we don't enjoy being laughed at.