Tara Murley clearly recalls the first terrifying time her daughter had a seizure.
The family was returning from holidays in Cowichan Lake, driving over the Malahat when older daughter Emily-Jane alerted her parents something was wrong with seven-year-old Jessie-Ann.
The distraught moments of dialing 9-1-1 and getting her to the hospital were just the beginning.
“It took a couple of days before they were able to diagnose what was going on,” Tara explained.
Testing revealed a brain tumour completely unrelated to the seizure disorder causing the true difficulties. (The unrelated tumour is also monitored).
The multiple scans, electrodes and bloodwork revealed epilepsy.
“She took it all in stride, it was obviously most difficult the first couple of years because it takes a while to figure out the right medication,” Tara said.
Medication caused physical changes but there were emotional challenges as well. Her parents shortened the leash on the then nationally ranked Scottish dancer. They took down the swing set and put the bike away.
“It was terrible at the beginning, and then you just learn to live with it,” Tara said.
More than 10 years later, Jessie-Ann is a spokesperson for the illness, working toward her June graduation from Spectrum community school, and particularly proud of her Honda Prelude and the licence that goes along with that.
Now 18, she decided two years ago to take control of what she could – opting to share her ordeal.
“It’s who I am,” Jessie-Ann said. “Being young and having something like that I thought people would judge me, but you can’t change it.”
She bears two tattoos attributed to her dealing with the disorder. One reads “I believe in miracles” the other “I am not what has happened to me I am what I choose to become.”
Now a spokesperson for E-Action, dedicated to taking action against epilepsy, she’s putting herself forward for the cause.
“When I was first diagnosed I didn’t know who to talk to, I feel like if I had someone younger (closer to) my age, not a doctor throwing big words in your face,” she said. “I can show people it’s not as scary. Not all epileptics get to be as lucky as I am.”
A fellow spokesperson at E-Action lost her memories during a seizure.
March 26 Jessie-Ann hopes to dispel urban myths – she heard once that epilepsy meant she was possessed by the devil – and raise awareness. March is epilepsy awareness month and March 26 is purple day.
“Five years ago a young Canadian girl, Cassidy Megan started Purple Day for Epilepsy, not just to make her school aware of what it is like to live with epilepsy, but to make the whole world aware,” said Jennifer Morgan, co-ordinator at the Victoria Epilepsy and Parkinson’s Centre.
More than 300,000 Canadians battle epilepsy every day while another 15,000 are diagnosed with the neurological condition each year.
“Unfortunately, it is still the stigma of epilepsy that makes it so difficult for people, whatever their age,” said Barbara Gilmore, executive director at VEPC. “Learning first aid for seizures is important. Learning that a person should not be identified by a medical condition, but by their personality, strengths and skills is what we are entitled to as a person.”
Jessie-Ann is seizure free for four years and working toward eliminating epilepsy ignorance.
“You’re not born with epilepsy, you can get it at any age,” Jessie-Ann said. “I wasn’t born with it.”