Shining a light on life with epilepsy
March 26 was Canada’s recognized day for Epilepsy awareness this year, but with escalating concern over the novel coronavirus taking hold of the nation at the time, the topic went largely unexplored.
Reaching out to The Record to share her perspectives on the matter, local high-school student Morgan Davis-demers said that she would like to see more people come to understand the condition she lives with every day.
“There are a lot of people living with epilepsy,” Davis-demers said. “I started having seizures when I was 12, but I only got diagnosed when I was 15.”
According to Epilepsy Canada, an average of 15,500 people learn they have epilepsy in this country every year, although stigma surrounding epilepsy and prejudice which has traditionally accompanied diagnosis leads the organization to believe that the true number of people with the disorder may be much higher because people are reluctant to admit it or to seek treatment.
“One in 100 people have epilepsy,” shared Karen Dymond, who also lives with the disorder. “Clearly, I have crossed paths with many people who have epilepsy but didn’t know it.”
Although there are several different large-scale organizations that advocate for epilepsy awareness in North America, Dymond and Davis-demers shared that they met each other in a waiting room at the hospital rather than through some kind of organized activity or meeting.
“Until we met with Karen just recently, Morgane hadn’t had the chance to meet with anybody in this situation,” shared Heather Davis, the young woman’s mother. “The organization in Sherbrooke is really not that functional right now.”
Looking back on the road to Morgane’s diagnosis, both mother and daughter shared that there were bumps along the way. Epilepsy has a place in the popular imagination as a disorder of flopping around on the ground and an inability to look at flashing lights, but the Epilepsy Foundation offers a list of more than a dozen different kinds of seizures that can manifest in a number of variably obvious ways depending on the person and the circumstances.
“For me they’re kind of like painful absences,” Davis-demers said. “It’s like I’m not really there. Some people don’t even notice when they have a seizure, they just have a blank look for while.”
Initially the teen said that she kept the phenomenon to herself, and thought they might just be migraines, but going to high school changed the situation.
“From the first day I started having up to five seizures a day,” she said. “I got really, really tired, and it kept going like that day after day.”
The fatigue and the seizures made it difficult to keep up in class, resulting not just in personal stress but also judgement and criticism from teachers who saw her as not paying attention or just being chronically absent.
“Some of the teachers are very understanding and others remain rigid,” her mother said, noting that this remains the case even after having gotten an official diagnosis.
Dymond said that, unfortunately, the high school student’s experiences don’t surprise her.
“What Morgane experiences, socially, is quite common. I experienced that too,” she reflected. “Discrimination is common. I had teachers tell me I was making it up to get out of class - I wasn’t. I was a good student who worked hard.”
In a similar vein, beyond the world of school, Dymond shared that it is not unusual for people to be fired from jobs because they disclose an epilepsy diagnosis.
Acknowledging that there are a lot of risks to the condition, Dymond also said that she would like people, whether they are teachers, employers, or just folks on the street, to work on seeing those with epilepsy as more than a disorder.
“While my life is impacted by epilepsy, I hope that people can see that I, and others with epilepsy, are more than our diagnosis,” she said. “We have hobbies, skills, interests, and life beyond epilepsy.”
For example, although Davis-demers is not allowed to swim in gym class or drive a car because, “you can have a seizure anywhere and you can’t really predict it,” she is currently a member of a local roller derby team. Despite the rough nature of the sport, she said the epilepsy has almost never been an issue.
The arrival of COVID-19 ate up an opportunity for advocacy be overshadowing the annual awareness day, but the virus also cut into the teen’s plans in another significant way. Where Morgane currently manages her condition with medication, her mother shared that before all non-emergency appointments were cancelled a plan had been made to evaluate the viability of brain surgery.
“The neurologist put the option of surgery on the table,” Davis said, sharing that the feeling had been that Morgane was a good candidate. “Now this is all on hold.”
Personal stories aside, though, Dymond said that she feels that there is room for people to build their understanding of the realities of epilepsy, in terms of what it means for people who have the consdition, and also in terms of how to be supportive.
“For many people with epilepsy, control of their seizures is elusive. One third are drug resistant - meaning medication does not stop or does not fully stop their seizures from happening. For those with control, management of lifestyle is still an important component - regular sleep, eating regularly, managing stress, etc, are all factors that can impact epilepsy,” she said.
Dymond pointed to a host of resources about epilepsy on the website of the Epilepsy Foundation, https://www.epilepsy.com/, but also offered a few quick pointers for people who might find themselves with someone who is having a seizure.
“Try to stay calm; if you have a watch or phone, time it; if they fall on the ground, put something soft under their head; tell onlookers they are having a seizure. Stay with them until it’s over. When it’s over, tell them they had a seizure and ask them how you can help,” she said, emphasizing the fact that one should not, as some people believe, try to put anything in the mouth of someone who is having a seizure.
“What is my hope? Just as my child has learned about epilepsy and how to respond, and is developing compassion and a sense of equity, if all of us can learn that many people have epilepsy; that we can do most or all things everyone else can do; that we are equal; and that while witnessing a seizure can be unnerving, you don’t need to feel intimidated - by knowing a few simple things to do, you can really help.” She continued. “While knowing what to do in the moment is important, the most important thing you can do is learn about it, because that is how we create a more inclusive and understanding community.”