November is the Epilepsy Awareness Month in India. On this occasion, sharing an account of my meeting with a young, vibrant Epilepsy Advocate who ardently hopes that "People around the world should come together & teach each other about epilepsy." by Kavita Shanbhag- Founder, ChildRaise Trust
" Purple Path"
We were planning our vacation to our daughter's place in Canada. We were very keen on a road trip & decided to explore the east coast of Canada. Nova Scotia was going to be one of the places we were to visit. I was happy that we will be visiting beautiful places like Quebec, New Brunswick, Prince Edward Island among others. But I was more keen that we visit Nova Scotia.
Why? You may wonder. But I had a special connection with Nova Scotia. There lived a girl who had started an event in 2008 & with in a decade it has developed in to a Movement. When she started the event she was a little girl under 10. Now, a young beautiful spirited teenager! I used to wonder, what must have prompted her to start the event & why did it spread worldwide?
Who is she? what did she start? what is so special about her? & why was I keen to meet her?
She is Cassidy Megan from Nova Scotia who founded 26th March as Purple Day for Epilepsy Awareness in 2008. I came across her idea of celebrating Purple Day for Epilepsy in 2009. By the time, I read about it, March 26th had come & gone. But the idea of celebrating Purple Day stayed with me for many reasons. One was for its simplicity. One had to just wear Purple & show support for epilepsy. Another reason which was very important.Here was this tiny girl, thinking of something BIG. Changing people's attitudes, their wrong beliefs, attitudes. I have been working as epilepsy advocate since 1992. I have witnessed, experienced the stigma attached to it. I had to support her!
In 2009, Epilepsy Association of Nova Scotia welcomed the idea of Purple Day for Epilepsy and supported Cassidy.Later Anita Kauffman Foundation also joined forces with them. These two organisations helped Cassidy take Purple Day to greater heights. More & more people globally joined in the Purple Day Movement. As a Founder & Managing Trustee of ChildRaise Trust, since 2010, I have started celebrating Purple Day since till date. ChildRaise was the first organisation to bring Purple Day to India & I as the Purple Day Ambassador.
So when we thought of visiting Nova Scotia, I thought to myself "It would be so nice if I can meet Cassidy". Two years ago I had the opportunity to meet Debra Josephs- ED of Anita Kaufmann Foundation.Since I knew her, I wrote to Debra. She suggested I write to Cassidy. Almost immediately, I received a positive reply . I was very happy.
Finally, when we met last month, I was overwhelmed that such a young girl has so much on her mind for epilepsy awareness. I had few questions to ask Cassidy.
Here they are:
How come you thought of Purple Day?
Cassidy- I thought there should be just ONE DAY a year which is fixed , where people could learn more about epilepsy and people who have epilepsy would know that they are not alone. I wanted to get everyone to wear something Purple and tell people why & that could be the starting point to talk about epilepsy.Though lavender was the colour for epilepsy, because it represents the feeling of being alone, calling it Purple Day people could wear whatever shade of Purple they wanted.
Why March 26th?
Cassidy-March 26th was the date when for the first time in my school we celebrated Purple Day. It would be easier for people to remember just one date thus every year we thought of celebrating it on March 26th.
I asked Cassidy & her mom Angela what was the role a supporting family plays in the life of a person having epilepsy?
Cassidy was 7 years of age when she developed epilepsy. As any other child would have she also thought she was alone but her mom arranged for Epilepsy Association of Nova Scotia to come & educate her classmates about epilepsy. They wanted to know more about the condition, which eventually gave her the idea of having Purple Day. When she talked about it to her mom, she was encouraged . All along, I could see that how strong & supportive she has been to Cassidy So she has been a strong role model for the families of kids with epilepsy. While interacting with her, I also noticed that she was careful that Cassidy should have a normal teenager's life while promoting Purple Day globally, managing the correspondences, attending the promotional events etc.
You are a role model for the young generation as well as inspiration for the older generation & for general public. Any advice, tips, Heart to Heart conversation?
Now on March 26th, I see the world come together as one to support each other and to educate people about epilepsy.A day where people with epilepsy don't feel alone or afraid. It has become a day that all of us, from all over the world can call our own. A day for all of us to be proud and stand together.I wanted to have a day where people with epilepsy would know that they weren't alone and that they didn't have to be afraid, embarrassed or felt like I did when I was a young kid diagnosed with epilepsy. I also want people who don't have epilepsy to learn more about it, to know that there are different types of seizure and how to help if they see someone having a seizure. I also want to let everyone know that even though people have epilepsy that they are the same as everyone else and that we aren't different. That we have epilepsy just like you have blue or brown eyes.
Cassidy's fundamentals are so right... some have epilepsy , some have blue or brown eyes. It is as simple as that.
But to understand these principles we have to Celebrate Purple Day on March 26th! Join Us!