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People often wonder what life with epilepsy is like and how people are impacted by this condition. Questions about whether a person with epilepsy can lead a normal life, go to school, work, or have a family, are typical. While there is no agreement of what a ‘normal life’ is, many people with epilepsy do live life to the fullest despite various challenges that seizures bring. That’s why we at Epilepsy Toronto believe we must ‘See the Person’.

Steve

My first response was: “There’s no way. I don’t have epilepsy, come on”. It took a long time for me to accept. It all started a few years ago. I was going through a divorce and dealing with a lot of stress and personal issues with my family. Then I met my current girlfriend Amanda [...]

Lena

I was diagnosed with epilepsy when I was 20. I just remember having a huge grand mal seizure and heading to the hospital - they found a tumor on my right temporal lobe. I am an intellectual - I was in the gifted program growing up. I went to U of T and completed my [...]

Mary

When I was about six weeks old, I had my first seizure. And in 1947 and 48, there wasn't any information about that kind of thing. I mean, we're talking about a time long before the Internet. I was at least three or four years old before it was even diagnosed as epilepsy with no [...]

Michelle

I’ve been the “special case” since the age of 17. A lot of people remember their first year of college to be packed with drinking, parties and classes. Me, not so much. I remember my first year of college by the paramedics at my house, and being at the hospital multiple times. I was diagnosed [...]

David

My epilepsy started when I was 12 years old. In grade 7 I had my first tonic clonic seizure. I remember feeling very, very negative towards myself. I thought that it was going to be completely debilitating; that epilepsy was just going to control my life. It was a very depressing thing in the beginning. [...]

Heavy

I became known as Heavy back in high school. There's definitely a heaviness to what I do. "Heavy" is not just the weight even though I’m a big guy. I’m very artistic and it’s in the moment for me and the way I do everything from my work with epilepsy, to theatre groups for important [...]

Meera

I feel like epilepsy is now just one of the many facets of myself. But it’s been quite the journey because for a while epilepsy was all consuming. And so now, just like I am a mother, a wife, a journalist and a friend, I am also a woman living with epilepsy. It's just one [...]

Kristen

I suffered my first tonic clonic seizure November 12th, 2015. I was a mess. My world was upside down. I had just been diagnosed with epilepsy. I was let go from two different jobs. I lost friends over it. The stigma, everything. And then, I found out my best friend, my grandmother, was dying of [...]

Donovan

I was taught growing up that to be a man I had to be strong, tough, resilient. I was diagnosed when I was 21 years old with nocturnal seizures but I didn’t accept that, and kept it a secret. As time went on I was eventually diagnosed with tonic clonic seizures. And yeah, I kept that [...]

Donette

I spent my 13th birthday at the Hospital for Sick Children to remove a brain tumor. I’ve had just about every seizure there is. Right now I’m just trying to deal with my epilepsy journey and not let it take over my life. The only thing that that holds me down is the healing from [...]

Nehal

When I got the idea for the art project, I was at a support group gathering and I found out someone else there was an artist. The idea just came to me—I want to curate and participate in an exhibition that is exclusively for artists that have epilepsy.  I want someone to walk into my [...]

Nancy

I have three sons. My youngest is 30 and on day 11 of his life he started seizing. Since then he has seized multiple times every day of his life. Except for the past four years. This past October 14, at the age of 26, he was four years seizure free. My husband and I [...]

Shonet

I guess I would describe my epilepsy as stable, but not stable in a way, because something can always show up. There is never an end to it even though you have a diagnosis, because there is no cure. You deal with whatever comes your way and you're always on the road to recovery so [...]

Andy & Stephanie

From the father of a child with epilepsy: I've been raising money for Epilepsy Toronto by running at the Scotiabank  Waterfront Marathon since 2003 and been an active member of Epilepsy Toronto since 1992.  Our daughter Stephanie was diagnosed with epilepsy (Lennox-Gastaut syndrome) at only 4 months old. To this day, she has the cognitive level of a 2 or 3 year [...]

LAURA

My first seizure was in grade 7, in my math class, so it was a very visible experience and I couldn’t remember anything except people saying that it was really scary and they didn’t know what was happening. At first it was like a lot of question marks; we didn’t know what epilepsy was, we […]

ISABELLE

I love this city, but I think I'm still a country girl. I grew up in a very small town called Hearst, it's about six hours up north from Sudbury, where I did my first year of university. It was like a trial before I moved on my own to the big city.   It's [...]

BEN

I was looking for work at the end of my school year, and also looking to volunteer. I’m a member of Epilepsy Toronto, and when I contacted them they told me that the Purple Walk was coming up, so I came in to  help out with making phone calls and stuff.  They asked if I [...]

JACQUELINE

I remember the night before the mugging. I got home and my head had started spinning. I just lay in bed, but I couldn't handle it. I managed to grab the phone and I called my mom and I said “I just wanna be with you”. I don't know what made me call her. She's [...]

ANASTASIA

My name means ‘resurrection’. Whenever I stop and think about it, it makes me chuckle. My Bompie (my Dad’s Mom) must have known I needed a little extra umph in my engine to navigate living life with Epilepsy. There is no piece of paper that shows how many times that I have resurrected myself… I [...]

DIALLO

I was in a motor vehicle accident from which I got a brain injury. It was after my accident that the seizures started to come. I was moving out, I had my job, and I had saved up. I had done what I needed, and then the accident came. It has changed going out on [...]

ANGINI

Around the early 2000's, we noticed something strange with me. I'd be driving the car and I would suddenly be: ‘where am I, where am I driving?’.  I managed to freak my mother out beautifully. We noticed that, and then it seemed to just disappear. Then 10 years ago when I was finishing grad school [...]

LINDSAY

At the start of 2017, if someone had asked me if I would go through brain surgery for my epilepsy, I never would have said yes -  I never would have guessed that would change for me by the end of the year. I decided to go through the testing for the third time to [...]

CARA

I’ve been living independently since I was 18 years old.  Back in 2008, I actually had a right frontal lobectomy done. And the neurosurgeon said: you may never walk or talk again. And I said, ‘wait a minute - wait to find out.’ My mom was right beside me in the chair when we were [...]

LESLIE (Friday Social Group Member)

I’ve had seizures all my life. We used to live in the country for close to 20 years. There was nothing for people with epilepsy where we use to live. Sometimes I felt really isolated. We moved back to Toronto in December, 2016, and I said, one of the things I wanted to do when [...]

RUI

I’m what they call a risk taker - I’m not afraid to try. I’m Portuguese, and that’s the way my family is. Always willing to challenge anything. I had a lot of side effects because of my medications. I had something called convulsions – which are even stronger than rage. That’s how I felt. It [...]

Tanja Stojanovska

If Tanja Stojanovska could have her way, her early experiences with seizures would be very different. Tanja was diagnosed with Type 1 Diabetes at the age of 5 and 31 years later diagnosed with Epilepsy. Her first seizure was twenty years ago but was attributed to her diabetes and low blood-sugar. Her second seizure happened [...]

Nicole Asta

Nicole Asta has been living with epilepsy since before she applied for her first job. Diagnosed at age 12, she has yet to find a treatment that effectively controls her seizures; she currently takes seven medications to provide any control. Epilepsy isn’t something Nicole is afraid to talk about. She has been connected with Epilepsy [...]

Sabrina De Sousa & Andrea Greaves

I didn’t know what to feel. A new epilepsy diagnosis can cause uncertainty and fear, but when you are a parent of a child with seizures, that stress multiplies. Questions abound: What do I need to know? How do I keep them safe? Did I do something wrong? “You think you failed, that you missed [...]

Jerry Catalfo & Ravi Raman

The Epilepsy Monitoring Unit at Toronto Western Hospital is a place many people with seizures have visited. While it plays an important part in assessing seizure activity with the hope of finding treatment options, it can also be quite lonely, sitting in a bed, waiting for a seizure to happen. Two Epilepsy Toronto clients are [...]

Isabel Estrada

For Isabel Estrada, who has danced since she was ten years old, epilepsy didn’t simply mean having seizures; it meant something she loved, something she had intended to do professionally, was put in doubt. Isabel came to Toronto from Guatemala City to study in York University’s dance department. It was during her third year, during […]

Denisa Radut: Determination

“I was 2% scared, 98% excited.” Denisa Radut is determined. She loves school, so much so that her heavy course load in the business administration program at Humber College, was causing her seizures to get worse.  The stress of her work was acting as a trigger. It’s not the first time epilepsy has impacted her […]

Tom Nesbitt

“When I went to school it was hard for me to make friends, and when I did, I was afraid that if I told them that I had epilepsy that they would not want to be my friend anymore.” For Tom Nesbitt, epilepsy is something he’s had to deal with his whole life. Diagnosed at […]

Amanda Kelly

When I was 15 years old, I had been having unexplained blackouts for a few months. I saw my family doctor who misdiagnosed me as having extreme panic attacks. I went through the next 6 years not knowing what was going on in my own body but I started to ignore them because they had […]

Beth MacKinnon

After having what she described as “the biggest tonic-clonic seizure I ever had” on the lawn of Queen’s Park where she used to work, Beth agreed to see a neurosurgeon. Beth has had epilepsy since she was seven and she knows what it feels like to be told that medications may never give her full […]

Tracy Cummins & Tobin

My son Tobin was diagnosed with epilepsy when he was in Grade 2. I had noticed him blanking out mid-sentence or mid-stride and it took my breath away. I would ask him if he realized he was doing it and when he asked, “realize I am doing what?” I knew we had a problem. Once […]

Adam Shapiro: Just Like Everybody Else

Last summer I was asked to introduce the Eisai comic book that was created to explain epilepsy. I spoke about situations similar to the hero, Jack, in the comic book. I spoke about being diagnosed with epilepsy at age 12. With no understanding or previous experience I suddenly had a grand mal seizure at 6 […]

Anna Argaw: Remembering Nebyu

“I wanted to do something to remember him.” When Anna Argaw’s son, Nebyu Taddese, was diagnosed with epilepsy it came as a shock. He was in Grade 10 and his seizures appeared suddenly. Even more shocking was his unexpected death from SUDEP only a few years later at the age of 19. To hear Anna […]

Bruce Hilliard

I can still remember waking up in our hospital’s emergency ward in March of 1997 in the middle of the night, surrounded by medical professionals and a doctor asking me questions. My last memory before that was falling asleep in my bed, preparing for another exciting day as a Chartered Accountant and income tax professional […]

Melanie Giglia

“I didn’t think it would be something I’d fall in love with,” says Epilepsy Toronto member Melanie Giglia on her passion for running. “I didn’t realize the greater good that would come from it. I dreaded my runs.” What started out as a simple method to reduce stress as a seizure trigger, running has become […]

Stephen Kinsman

Growing up, Stephen Kinsman’s friends wouldn’t know when he had a seizure. They were so small, lasting only a moment as he blanked out. While his medications exhausted him, making him nod off in class and gym made him more likely to have a seizure, but otherwise epilepsy really didn’t interfere with his day-to-day life. […]

Wendy Morris

It was a Tuesday in March 2001. A regular workday, or so I thought. I was about six weeks pregnant with my son. I got up as usual and made breakfast for my 8-year-old daughter. I packed her lunch and dropped her off at the babysitter’s who would walk her to school. I then set [...]

Sharron Brandt

Sharron Brandt is a member of Epilepsy Toronto. Born a month premature with the cord wrapped around her neck she had a seizure as soon as she entered the world. Complications due to the lack of oxygen caused her to develop epilepsy and significant mobility impairment in her arm and leg. In fact, Sharron didn’t […]

Jim Armstrong

Jim Armstrong, a longtime friend of Epilepsy Toronto, passed away in 2016. Our love goes out to his friends, fans and family. Jim was always sharing his story to support others with epilepsy and so we are proud to continue sharing this story, written several years before his passing. Jim Armstrong, is a member of Epilepsy [...]

Rochelle

Rochelle  migrated to Canada from the Caribbean. During the process of adjusting to life in Canada, settling into a new job and making friends, she was hit by a curveball; she started having seizures. At the time she had no idea what these episodes were and like a lost soul she struggled to understand what […]

Ali Hassan

I had my first seizure on January 16th, 2015 I was working 6 or 7 nights a week, 9-13 hours a night in a very stressful job. I also had other issues that combined may be a factor for that seizure, but I am not sure what triggered it. For sure, my bad luck. The […]

SHARE YOUR STORY
If you have an inspirational story of life with epilepsy you’d like to share, please contact our Communications Director Mackenzie to set up a time to chat: mackenzie@epilepsytoronto.org