Epilepsy doesn’t mean not enjoying life

March 26 is Purple Day, a time to educate people and raise awareness

Christina Keough may have epilepsy, but she doesn’t let that keep her from living life to the fullest. Keough is proud to be the 2023 Purple Day Ambassador for Newfoundland and Labrador. Created by Maritimer Megan Cassidy in 2008, Purple Day is recognized on March 26 and, with the help of The Epilepsy Association of The Maritimes, focuses on education and awareness about epilepsy.

Keough, a resident of Plate Cove East, likes to help bring awareness because it seems to her that epilepsy is seldom spoken about.

A lot of people, she feels, rarely hear about epilepsy and many people don’t understand that it is a disease. One misconception Keough has run across is the belief by some people that seizures are contagious.

GRAND MAL SEIZURE

Keough was just three days old when she had her first seizure.

“My mother and sisters had difficulty understanding the seizures,” she recalled. “I was the only one in the house that was sick.

“I’ve been on every seizure drug on the market, which has affected my memory. That being said, doctors tell me that, for someone who had two strokes, I actually have a pretty good memory.”

The worst seizure Keough has ever had was Jan. 15, 1998 when she had a grand mal seizure, after which her left leg was affected as was her ability to read and write.

She hasn’t had a grand mal seizure since then, but she still contends with petit mal seizures, which occur if the INR — a measurement of how long it takes blood to clot — in her blood is too high or too low, or she has an infection. She has been told she will never be able to get these petit mal seizures truly under control.

“They are a lot better than they used to be,” she said of the sudden, brief lapses in consciousness.

Keough feels lucky to have the neurologist she does, whom she first met when he was a resident. Under his care since 1999, she has to drive three hours each way every six months to see her specialist who is based in St. John’s.

SAME AS EVERYBODY ELSE

“To me, epilepsy should be made more aware of and spoken about because, if it is out in the open more, people would understand it better,” said Keough.

As a person with epilepsy, Keough said “we are the same as anyone else and should not be looked down upon or treated differently.”

Keough likes to knit and do crafts. She also loves to go cod fishing.

“I do things that everyone else does,” she said.

One of those things Keough has done is have some of her writing being published. In 2010, she contributed an essay to the book “Out Loud,” published by Breakwater Books in St. John’s.

“The most important thing is getting this out in the public more,” she emphasized. “I’d like to see more people participate in Purple Day. Epilepsy Newfoundland and Labrador is doing a great job, not just in March, but all through out the year.”

FINDING THE RIGHT TREATMENT

Cara Jones is from Antigonish, N.S., but now lives in Grande Prairie, Alta.

When she was six years old, she flat-lined from a tonic-clonic (grand mal) seizure that caused her lungs to fill with fluid.

“In the ‘80s, epilepsy was still not well-known or understood by the general public,” she said. “As a result, my parents, especially my mother, had to fight the many systems to help me have the best quality of life possible.”

By the time she was 18, Jones was having more than 100 seizures daily, which she said were mostly complex partial seizures, but several tonic clonics in her sleep.

“It was a terrifying time in my life, but luckily I became a candidate to have brain surgery,” she said. “The surgery completely changed my life for the better. Although I don’t have seizures anymore, I suffer from migraines and have trigeminal neuralgia, which is known as the most painful condition in humankind and medicine,” she said. “However, anti-epileptic pills help to keep me in remission.”

Jones had to go through a lot to find a treatment that worked best for her. Having a good neurologist, she said, is invaluable.

“I was lucky to have great doctors in my life, but I find that women are often not believed when it comes to their pain and health experiences,” she said. “As a child, some medical professionals labelled me a fake and I was seeking attention. Having experiences like this has a lasting impact on a person and, unfortunately, became a constant and unnecessary theme in my life and experience living with invisible disabilities.

“Sometimes, our tolerance for discomfort and pain can make it challenging to get the treatment we need, especially if we are not believed.”

ALLOW PEOPLE TO SHINE

Jones thinks times have changed when it comes to how people perceive epilepsy, but some myths remain.

“Such as restraining someone who is having a seizure, putting something in their mouth to avoid swallowing their tongue, people with epilepsy cannot drive, or they can’t achieve the same kind of success as their peers,” she listed.

Jones said she is living proof that anything is possible.

“I once was told I would never graduate high school, never go to university and possibly never live past my 20s.”

Sharing her story has inspired others. She once was the keynote speaker for the first-year class at Nova Scotia College of Art and Design University.

“I told the students that, although struggle is inevitable in life, sometimes our most significant hurdle is unlearning everything we were taught about what is possible,” she said. “Afterward, a young man in the audience approached me and told me that he was experiencing panic and regret before I began speaking. He had just undergone brain surgery for epilepsy the year before and felt he might have made a mistake attending university and that he did not belong there. All it took was someone acknowledging his struggle to give him the courage to persist in the face of self-doubt to remind him of his strength.”

Jones recommended simply allowing people to shine and express their needs so as to feel safe.

“I observed something extraordinary during the pandemic lockdowns when many of us were working remotely,” she said. “When I did not have to talk about my disabilities to anyone, I was much more productive.”

She had the realization she used a lot of energy discussing her disabilities when they were witnessed by her co-workers.

“(Working remotely meant) I could simply take care of myself, such as taking a migraine pill, lying down for 30 minutes and then getting back up to continue my work,” she said. “It can be more exhausting to explain to people you need to take care of your health than deal with the symptoms. Although I believe people have good intentions, I noticed that, when we returned to in-person work, I was told to ‘go home’ if my boss or coworkers witnessed me allowing my pills to kick in or how often I had to hear about the long list of possible cures for my alignment.

“Not having to discuss my conditions was refreshing and allowed me the time just to be.”

SHEDDING LIGHT ON THE EXTRAORDINARY

Through her podcast, Cara Jones Speaks, she sheds light on extraordinary topics through interviews with her extraordinary guests.

“My experience with epilepsy has led me on an incredible life path as a leader and mentor,” she said. “By sharing my story and creating a platform through my artwork and podcast, for others to share their story, I believe we can change the world and ourselves.

“Stories are powerful tools reminding us we are not alone and that anything is possible.”