As we gear up to Purple Day, don ourselves in purple and get ready to spread the word about epilepsy, it is good to look back at where it all began.
For epilepsy, Purple Day is a huge deal. It is a day dedicated to encouraging people to open up about their condition, boosting a feeling of togetherness and spreading awareness. And, of course, it’s also all about dusting-off the all-purple outfits and accessories.
But Purple Day is an even bigger deal if you think about how it started.
The year was 2008 and it had been a year or so since eight-year-old Cassidy Megan from Halifax, Canada, had been diagnosed with complex partial epilepsy.
The youngster found that epilepsy affected her life – she couldn’t go climbing, swimming or even for walks by herself. School was sometimes difficult because she had trouble with her memory or would get confused.
Purple cakes for Purple Day
At the time, Cassidy explained, she felt like she was the only one in the world going through this. She felt alone and afraid of what people would think – a feeling that is familiar to most of us.
Epilepsy had been a taboo subject for a long time, making it very poorly publicised and misunderstood by the general public. Seeing adverts for a number of other conditions, Cassidy couldn’t understand why there wasn’t any for epilepsy too.
All Cassidy wanted was one day when everyone with epilepsy could see people’s support and not feel afraid and alone.
The first Purple Day
It was that same year that Cassidy and her family decided to create a day dedicated solely to talking about epilepsy.
Today, March 26 has a big purple circle around it in our calendars. But back in 2008, it just happened to be the most convenient date for Cassidy’s school and for the Epilepsy Association of Nova Scotia, who were to do a presentation for Cassidy’s class. And it just stuck.
Cassidy picked purple to represent this day, because lavender is internationally recognised as the colour of epilepsy. She thought lavender is just a shade of purple and everyone has something purple they could wear to show their support.
|Impressive purple wardrobe|
“The first Purple Day was pretty exciting and a lot of fun,” she said. “My whole school was purple and the school decorated the lobby tree with lots of purple and epilepsy facts.
“The Epilepsy Association of Nova Scotia, who is one of the global sponsors for Purple Day, came and did an assembly. I wrote to the members of our government and all my cousins did things in their schools too.
“My family and our friends around Canada all wore purple and there was media coverage too.”
At that remarkably young age, Cassidy had overcome something extremely difficult and familiar to a lot of us – the fear of speaking out and putting yourself out there.
“Although I was still a little afraid to speak about epilepsy to my whole school and to others, it was good helping people understand some things about epilepsy,” she said.
|Worldwide Purple Day events|
Dreaming big has not been a problem for Cassidy right from the start. She explained that she had her eye on taking Purple Day out of Halifax and out of Canada before the first one had even happened.
“I’ve always wanted it to go worldwide, that is what I even said to my mom when I first told her about wanting to do Purple Day. I wanted everyone with epilepsy to know that they are not alone. I still want that and I want to help educate everyone.
“After the first Purple Day, I felt really good about how many people were joining in and supporting it and spreading awareness. It made me want to work even harder to make Purple Day a worldwide event.”
Over the last eight years, Cassidy’s idea and courage have spread like wildfire around the world. Purple Day is now the biggest international awareness day for epilepsy and people everywhere are stepping up and sharing their stories and wearing purple.
Cassidy and Halifax MP Geoff Ragan at the Purple Day Gala 2015
“It is so amazing seeing everyone’s posts, pictures, stories and videos about Purple Day. I love seeing them all. I love seeing Purple Day grow and all the hard work we are doing to help so many people. I say we, because it’s not just me. It’s everyone, everywhere around the whole world who is involved with Purple Day that makes it such a huge success.
“Purple Day would not be as big as it is and continue to grow like it does without everyone’s help and support and I am very thankful for that.”
|Speaking in Japan to raise awareness|
Raising awareness is quite a broad term, but there’s a good reason – because it covers so many aspects of spreading the word. It means dispelling myths about epilepsy, getting people asking questions, and informing everyone about the right way to help someone having a seizure. And for Cassidy, there is another important reason – showing support.
“Someone you know may have epilepsy and just be scared to talk about it,” she explained. “And that’s completely understandable. But that person needs to know it’s ok to talk. With more awareness and education of the general public, people too scared to talk about epilepsy can become stronger.
“I know that it can be really scary to talk about epilepsy. I still get nervous sometimes, but it is best to tell people in case you ever have a seizure around them and need help.
“Your family and friends will be understanding about it. Some might act weird at first – some of mine did – but that’s only because they don’t know a lot about it. All you have to do is sit down with them and explain it and answer their question as best as you can.
“Always remember that you aren’t alone. Don’t be afraid; you are strong, so believe in yourself. With every person that is made aware and becomes educated about epilepsy, the world becomes a better place.”
|Cassidy says she will always work on |
Cassidy is now 17 and is in the 11th grade. She loves horse riding and taking care of her horses, as well as competing in archery. She’s recently started doing a little bit of modelling but her aspirations for the future are still rooted in helping people.
“My hope is to always work on Purple Day – it is a part of me. I also want to go to college or university and maybe become a phlebotomist or work in the media helping to tell people’s stories. But I haven’t decided yet.”
Cassidy is determined to see Purple Day get bigger and bigger. This year she has challenged everyone to make their cities as purple as possible and will be attending the annual Purple Day gala. The Halifax City Hall will be turning purple and flying the flag for Purple Day and the local public transport will have signs. You can follow Purple Day on Instagram and Facebook to catch up with Cassidy.
If you are feeling inspired by Cassidy’s courage and the wonderful spirit of Purple Day, here is how you can get involved:
- Share your story! If you or someone close to you is living with epilepsy, you can tell us about your experiences on the Epilepsy Action Facebook and Twitter or become a media volunteer
- Wear some purple! Whether it’s a shirt, a dress, a hat or a tie, most of us have something purple lurking in our wardrobes – but if not, you can always show your support by wearing a Purple Day adjustable wristband
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