Inside Epilepsy: 1 in 100 need support

TORONTO – It took two years after being diagnosed with epilepsy for me to reach the point where I wanted to talk about it.

Two years of struggling to try and understand what the condition was and how it was going to affect my overall health.

Two years of discovering the impact it would have on my everyday life.

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Two years of being afraid that other people’s perception of me was going to be different.

The difference in my case was that there were many others, beyond friends and family, who already knew I was dealing with a medical condition. They had seen me experience a seizure before anyone had figured out what it was.

There were a lot of questions. I just wasn’t prepared to answer them yet.

I was reporting live as a journalist for Global News in March 2011 and the entire time I was on-camera I wasn’t making any sense. The words weren’t coming out right and I was stumbling my way through the written copy

I eventually ‘came to’ and slowly walked out of the studio in a fog. By the time I reached my desk, I felt fine. My reaction was to simply try and move on. Call it an ‘off’ day without realizing the magnitude of what had just happened.

Everyone who was watching likely thought something was wrong. If they didn’t witness it, it wouldn’t be long before they would find it online.

By the time I decided to speak out, I had met plenty of others experiencing similar things related to epilepsy.

Some were living with daily tonic-clonic (grand mal) seizures and weren’t able to work. Others had side effects because of the medication they were taking. All felt as though no one else understood.

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We hear time and time again that 1 in 100 people live with epilepsy and yet the general public still doesn’t have much knowledge or understanding

I reached the point where I decided to do what I could to educate as many people as possible and had the venue to do so. Soon after, Global aired my story and the stories of others along with pieces about the research and support services needed.

The feedback was incredible and well beyond my expectations. The outpouring from others who live with epilepsy and the stigma associated with it was overwhelming.

They wanted to have their voices heard.

They needed to explain the difficulties to others.

This was a means to do so and it worked.

Those who didn’t know anything about the condition also made a point of reaching out. Some were thankful for teaching them a few things. Some had realized they may have had a connection to others with epilepsy but didn’t realize it.

All in all, it seemed as though the effort made an impact.

The hundreds of emails, letters and posts certainly offered me some relief as well.

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The dark cloud I had been living under was lifted. I could finally speak openly about what had happened on air and my experiences since then. There is no shame in having epilepsy. Telling people helps the healing process.

My hope is that the work to create awareness continues to resonate. The goal is for everyone who reads this and sees or hears another story can take something away from it.

It’s important that those who have epilepsy are empowered and feel as though they can talk about it.

It took me two years before I felt comfortable saying anything.

The plan now is to spread the word about epilepsy without fear and offer help to those who need it.

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