Cassidy Megan used to think she was the only person with epilepsy; now, she’s helping people around the world understand the condition
By Suzanne Rent
Cassidy Megan is in the Sir Charles Tupper building at Dalhousie, curled up in a chair, wearing an oversized purple hoodie, with the sleeves pulled over her hands and nursing a couple of broken toes she suffered while cheerleading.
She looks like a typical high-school student and has a quiet but quick wit. But that purple hoodie she’s wearing represents more than typical teenage style. Cassidy is the founder of Purple Day, to raise awareness about epilepsy, which affects 50 million people around the world. Cassidy was diagnosed with epilepsy when she was seven.
“I thought I was the only one,” she says, recalling when she heard about her diagnosis.
Shortly after her diagnosis, her mom, Angela McCarthy, arranged for the Epilepsy Association to visit Cassidy’s class to talk about epilepsy. That day, Cassidy shared with her classmates that she had epilepsy.
A year later, she told her mom she wanted to have a day dedicated to epilepsy awareness. So with the help of her mother and school principal, they decided on March 26 as that date and they named it Purple Day. But Cassidy wanted to make it bigger. So with the help of social media, word of mouth, Epilepsy Association of Nova Scotia, New York-based Anita Kaufmann Foundation, emails to Members of Parliament, a call to the Prime Minister’s Office (they never chatted) along with Cassidy’s passion for sharing her story and learning those of others like her, people around the world now recognize Purple Day. Her mother says Cassidy is determined to get the word out about epilepsy.
“That’s just Cassidy,” she says. “She doesn’t think in black and white. There’s a whole rainbow in there and she’s going to cover all the bases.”
Now 15, Cassidy has received many accolades for her work on Purple Day, including a meeting with Queen Elizabeth, the QE2 Diamond Jubilee Medal and the Red Cross Young Humanitarian Award.
Our Children recently spoke with Cassidy and her mom about Purple Day, what they learned about epilepsy and what they’d like to see Purple Day become.
Why did you choose the colour purple for this day?
CM: First, yes, it is one of my favourite colours. Second, because lavender is the actual colour for epilepsy. But it’s just a shade of purple. It’s hard to find just lavender.
AM: Lavender is the original colour of epilepsy awareness. The lavender flower is often associated with solitude, which is representative of the feelings of isolations many people with epilepsy feel. When Cassidy started Purple Day she chose to say purple because she said lavender is a shade of purple and this way people can wear whatever type of purple they want and she figured it would be easier to find purple things and lots of it, more then lavender.
What is the most exciting thing you’ve had the chance to do with Purple Day?
CM: I met a lot of really nice people at Sick Kids [hospital in Toronto]. I had a lot of fun. I got to hang out with them, learning. We had cupcakes, too. We had a cupcake fight there. I’ve gone to a lot of conferences. I understand why they call board meetings “bored” meetings. I get to travel. I see a lot of different things, meet a lot of different people.
What do you want our readers to know about epilepsy and people with epilepsy?
CM: That people with epilepsy can do anything other people can do. And what to do if they see someone having a seizure. That there is more than one type of epilepsy. What Purple Day is and what it represents. And you do have to restrict yourself from doing some things, but you can do most things.
AM: She can’t go swimming by herself or without a type of preserver. We don’t let her go for bike rides alone and usually don’t let her go for long walks by herself—she had a seizure one day when she was out for a walk by herself, it was scary for her and us—or go horseback riding by herself. We don’t like her cooking when she is home by herself either. All of these are only because if she has a seizure it is dangerous. She cannot drive.
What have your learned about yourself doing this?
CM: I learned more about the kinds of seizures I have and what happens when you forget to take your medication. I do cheerleading; you wouldn’t think I could do that. I can speak in front of a lot of people, but when it comes to speaking in front of my class or my friends, no way. But it has helped me.
Angela, what have you learned as the parent of a child with epilepsy?
AM: I learned that there are a lot more medications, treatments and resources than we thought. I learned, though, that the world needs to be educated more. That there needs to be more awareness. I learned people need to be more aware of the resources available to us and they need to be realized. I learned that it can happen to anyone. That has been a fear as a parent. I learned that other parents have the same fears and concerns that we do. I learned I have to trust my kid’s judgment and I have to let her be a kid as much as possible. She has taught me a lot. She says, “I have epilepsy, just like you have brown hair and blue eyes. It’s just a part of me. I can do whatever I want, if you let me.”
What do you want other parents to know?
AM: When Cass was having her seizures when she was little, we got after her for daydreaming and for being clumsy because she’d fall down the basement stairs all of a sudden. Then we had the guilt of not knowing. So one thing I would tell parents is don’t feel guilty because you don’t know and didn’t know how to react. But educate yourself. Use the agency [Epilepsy Association of Nova Scotia]. Use the support that is there for you. And words are power, so talk about it. The longer you are quiet about it, you’re kind of giving into the stigma. Voice your fears, voice your concerns and work hands-on with your doctor.
Have you noticed a difference in Cassidy’s personality since she started Purple Day?
AM: I’ve noticed a huge difference in confidence where before she wouldn’t speak about it and now she has no problem speaking out about it. She’s quick in jumping on those things she sees injustices in. She’s definitely more confident and outspoken with the advocacy.
What did you think when you met the Queen?
CM: The first thing that came to my mind was, “Wow, her hair is a lot whiter than I was expecting.” It was fun. It was also cool. But apparently, I had quite a long conversation with the Prince [Phillip].
AM: She cannot remember everything that she talked about with Prince Phillip but she knows that they talked about school, he asked her questions about herself and she asked him about his visit.
Do you want to do this as an adult?
CM: It’s not really a job…It’s fun seeing people’s events and stuff. It doesn’t feel like a job. It’s more like something I like doing, helping people.
What do you want Purple Day to become?
CM: I want it to keep going on, keep getting bigger, let more people know. Purple Day actually started in Halifax, so I want it to be the “purplest” place.