​​​  Carma Jolly.jpg

Carma Jolly suffered from epileptic seizures until brain surgery in 2012. Above, she enjoys perogies in the Epilepsy Monitoring Unit at Krembil Neuroscience Centre. (Photo: courtesy of Carma Jolly)

On Oct. 31, 2009, Carma Jolly was on the subway in Toronto, when she heard an announcement for the next stop. As the subway came into the station, the word "King" came into view on the brick walls.

That's the last thing she remembers.

Carma woke up in an ambulance. Paramedics told her she had likely suffered a seizure and was being rushed to the hospital.

"I don't even remember the seizure starting, I just came to in an ambulance," said Carma, who was 37 at the time. "I really had no clue that I could possibly have epilepsy."

Difficult to detect

As in most epilepsy cases, Carma's seizures actually began earlier than the 2009 incident, but since they were less dramatic, they were difficult to identify.

"Things looked sparkly and I wasn't able to speak," Carma said, also noting that since they often struck early in the morning, there was usually no one else there to observe her when they happened.

So, although she found it odd, she said she simply dismissed the incidents as unimportant.

That mindset changed, however, when the violent seizure struck on the subway in 2009.

Diagnosis a 'shock'

At the hospital that day, doctors confirmed that the seizure she'd had, along with the other incidents she had experienced, were caused by epilepsy.

"It really was a shock," she said. "Although it made sense in terms of what I had been noticing over the last couple of years, the diagnosis just seemed so out of the blue."

Over the next few years, to try and combat the symptoms, Carma tried different medications. But still, her seizures recurred and became more frequent. Sometimes, she had a few seizures a day.

They ranged from what is medically known as absence– seizures which last roughly 20 seconds and impair consciousness– to tonic-clonic, also referred to as a grand mal seizure. This type of seizure affects the entire brain, causes a person to lose consciousness and have convulsions. (It was this latter type that she had on the subway in 2009).

Seizure at work

Carma recalls when one small seizure came on while working at The Current, a CBC Radio national news and current affairs show.

"One day while at my desk, all of a sudden, a strange, beautiful light appeared around my colleagues," she said.

Since the seizure was quiet and no one noticed, Carma put it out of mind.

"I simply dismissed the experience, as I did for it all," she said.

Losing control

But, soon, the seizures also became impossible to ignore.

"I even had a grand mal seizure as I was stepping off the streetcar," she said. "The seizure was so intense, I fell on the road. I had broken teeth, a black eye and a huge bump on my head," she explained.

"Knowing that I could have a seizure at any moment really made me quite fearful about going out on my own," she said. "It wasn't something I could prepare or plan for and I had to curtail some of my activities and make sure not to stay out late by myself. It was frustrating to lose control over my life."

Helping her to take back that control was UHN's Dr. Taufik Valiante, a neurosurgeon at Krembil Neuroscience Centre, who specializes in the surgical treatment of epilepsy.

Brain surgery

Carma was assessed at Toronto Western Hospital's Epilepsy Monitoring Unit. Tests helped determine not only where in her brain the seizures originated, but also that the type of epilepsy she had made her a candidate for surgery.

"Of course, I was highly nervous about having surgery, but the medications weren't able to fully prevent my seizures," she said. "I wanted to move ahead with it for the chance to be free of seizures."

Carma also said Dr. Valiante's worldwide reputation gave her the trust and confidence in her decision.

"I very much believe in him and felt fortunate to become one of his patients," she said.

So, in the fall of 2012, 10 days after her assessment, Dr. Valiante surgically removed Carma's left hippocampus —the part of her brain responsible for the seizures.

Post-surgery progress

Since then, the outcome has been encouraging. Carma, now 41, has recovered from surgery and experiences fewer seizures.

As part of a program at Toronto Rehabilitation Institute, she's working with an occupational therapist and a speech and language pathologist. It's helping her re-train some of her cognitive skills affected by the surgery.

"I am not back at work yet, as I am still working on my language and memory, which happen to be central to my job as a CBC producer," she said. "But things are improving every day."

Carma said she's "incredibly grateful for the care and compassion…from friends, family, my pals at Epilepsy Toronto and Dr. Valiante and his staff, especially Nurse-Practitioner Alina Shcharinsky. I am such a lucky person and so deeply grateful."

Overall, she said, the surgery has given her hope.

"The most amazing thing for me is that after dealing with seizures and having surgery, life has taken on a new light— the smallest things seem more valuable," she said.

Purple Day

On March 26, Carma will commemorate her experience and show support for those living with epilepsy by wearing a purple sweater in honour of Purple Day.

"I'm so glad to see Purple Day gaining momentum across the country," she said. "Throughout history, epilepsy and seizures have been scary for people because they feel they don't know what to do if they see someone have a seizure. But Purple Day teaches everyone that epilepsy is not as bad as it looks, that precautions exist and encourages understanding about this condition."

Learn more, donate
Help those like Carma living with epilepsy and raise awareness about the condition. Take part in Purple Day on March 26. Learn more at epilepsytoronto.org or purpleday.org

Related
UHN patient, experts featured in Global Toronto epilepsy series
C​arma's expression of epilepsy through art and music: subtlebeing.com

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