Stacey Maola was just a teenager when it started.
“We just kind of referred to it as ‘the feeling,’ said the 38-year-old Sarnia woman and mom of two.
“I would have this strange, unusual feeling and it would only last for a few seconds. Most of the time I would go on about my day and no one would even notice.”
But things worsened in her 20’s, with the unexplained episodes accompanied by lip-smacking, glazed eyes, and people later told her, slurred speech.
A doctor’s visit in 2007 confirmed she had epilepsy — a condition of the brain characterized by recurrent seizures, afflicting some 300,000 Canadians.
“I remember looking at my doctor and saying, ‘Are you sure?’” said Maola, who was 27 at the time. Her idea of a seizure was someone twitching, convulsing, and falling over (known as tonic-clonic) — nothing she had ever endured.
Maola was referred to a neurologist and given medication, but the seizures continued.
Then in 2016, she was involved in two separate motor vehicle accidents — proving she was in fact suffering from ‘absence seizures’ — and lost her licence.
“At that point I was referred to an epileptologist — and that’s really when my life changed,” she said, noting she spent two weeks in London’s epilepsy unit so doctors could pinpoint the area of her brain triggering the seizures. That’s when she learned she was a candidate for life-changing surgery.
“I was a patient that fit the mould perfectly,” she said. “It was a big decision. But also scary. I was young, with two kids, five and seven.”
Last October, Maola underwent the surgery — a temporal lobectomy — during which she was partially awake so doctors could monitor her speech. They were able to successfully remove a lesion on her right temporal lobe that was causing the seizures.
She’s been seizure-free ever since.
“The recovery was very difficult; I had a lot of anxiety and insomnia for weeks,” said Maola, who was taking upwards of 18 pills a day.
But after about six weeks, her energy levels were skyrocketing, and so was her outlook.
“I feel the best I’ve ever felt in my life,” said Maola, who has returned to work at TD in Sarnia, is slowly being weaned off medication, and is hoping to have her licence back soon.
Now, she’s on a mission to help others.
Her family celebrates Purple Day for Epilepsy — dressing up, decorating purple cupcakes, and talking about awareness.
“I am trying to teach my children (Sam, 7, and Leah, 5) that people go through different things in their lives, whether it’s epilepsy or diabetes, and you just have to stay positive and be kind to other people.”
Maola has also connected with Epilepsy Southwestern Ontario (ESWO) and attends monthly support sessions hosted locally. She helped organize a paint-it-forward night last month in support of local services.
Maola stressed seizures come in all different forms. “I went a decade not knowing what those feelings were; I remember thinking at one point, ‘Will I ever know what this feeling’s all about?’ And I know there must be other people out there like me out there.”
About 20 regularly attend the support group in Sarnia, said Maola.
“But we know there’s definitely a lot more out there who would benefit.”
“I am pretty excited for the future,” she added. “And spreading as much awareness as I can.”
For more on local epilepsy support and services, visit: epilepsyswo.ca