Scary and challenging at times, life with neurological disorder goes on, Newfoundland woman says

GRAND BANK, N.L. — When words begin to fly, Melissa Dunford knows it’s time to find a safe place.

“It looks like popcorn popping,” the resident of Grand Bank said in explaining for The Telegram recently the warning she gets when an epileptic seizure is about to occur.

“That’s the only way I can describe it — the words look like they’re popping off the page.”

Dunford has learned to live with epilepsy, a chronic neurological disorder which, according to statistics, affects some 300,000 Canadians.

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Although it has been a few years now since her last seizure, the disease is always in the back of her mind, particularly at functions and social gatherings.

Dunford’s first seizure happened when she was 18 years old. She hadn’t slept well the night before, which she now knows is a factor for her. She just suddenly fell to the ground, startling her mother and father.

“Actually, my family, they didn’t have a clue what was wrong with me. They thought I might be having a heart attack,” the 40-year-old said.

Another seizure factor for Dunford is pain.

“I went through the ringer with tests, and (the doctors) said, (they could find) nothing, and then I didn’t have another one until I was 20, and I was in labour,” she said.

With a newborn and finding it hard to get enough rest, Dunford said the seizures picked up around that time.

The seizures cause her to lose consciousness and she is unable to recognize anyone around her for a few minutes afterwards.

She says she considers herself lucky to experience what is called an “aura.” Her vision gets “really funny” and the popping words begin.

“I can say, ‘I’m going to go have a seizure.’ I can’t stop it once it’s coming, so I’ll go and lie down and prepare, make sure that I’m safe so I don’t hit my head, somewhere that I’m comfortable, and I’ll just let people know,” she said.

Raising awareness

March is Epilepsy Awareness Month in Canada, and Alicia Legge, community information officer with Epilepsy Newfoundland and Labrador, says the organization has once again been pleased with the level of support across the province.

The number of cities and towns planning to light up buildings or landmarks in recognition of Purple Day this Friday, March 26, has been particularly “mindblowing,” she says.

The support means a lot to people living with epilepsy in the province, estimated to be around 10,000, as well as Epilepsy Newfoundland and Labrador, Legge said.

The work is “far from done,” she said, however.

Even though it’s 2021, there is still a lot of stigma attached to epilepsy diagnoses, and misconceptions and misinformation continues to be spread, Legge says.

For instance, people with epilepsy are still asked about swallowing their tongues and whether you should put something in someone’s mouth experiencing a seizure.

“The answer to both of those questions is no — you cannot physically swallow your tongue, it’s impossible — and no, you should never put anything in a person’s mouth when they’re having a seizure,” Legge says.

“That information is still out there. It’s still prevalent.”

Legge says the stigma often relates to the ability of people living with epilepsy to live full and productive lives.

They can and do, she says, adding it’s important people with epilepsy share their stories to help educate others about the disease.

Positive impact

Dunford says she’s felt the stigma around epilepsy.

When she was in her early 20s, she said she worried about telling people she had the disorder.

“At one point, I was scared to wear the MedicAlert (identification) because I always felt people would like at you like, ‘Is that contagious?’” she says.

“It’s just a medical condition and it’s no different than somebody who has diabetes." — Melissa Dunford

She says she feels generally people are now more aware than in the past and she is more open about the disease, as well.

“It’s just a medical condition and it’s no different than somebody who has diabetes. It’s invisible, you can’t see it, but it’s there,” she says.

Purple Day is held in schools across the province, and Dunford, a student assistant, believes it has a positive impact for youth living with epilepsy.

“It’s really nice to see and I’m sure that makes them feel the way I wish I could have felt back in the day, you know?” she said.

Paul Herridge reports on the Burin Peninsula.
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