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“Epilepsy awareness with the colour purple”
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“Epilepsy awareness with the colour purple”

Examining the myths behind epilepsy takes on a personal meaning for Ashlee Burnett, 20, a Correspondent from Couva in Trinidad.

We were introduced to each other when I was 16 years old. Before that, I heard it in a dance hall song, ““Hold mi like yuh really, really, really, really miss me
Baby, yuh move mi like an epilepsy…”

Before that, I heard of it as a condition my cousin had it in her early years.

Everything was so sudden. It’s almost as if it were waiting for a coming of age to ensure I was able to handle the weight of it all. December 23rd, 2013, I had my first seizure. As days went by the number of episodes in each day increased. I knew the types of needles by heart; which colour matched which size. My veins were breeding grounds for new medications running up and down the streets to quell the storm. January 2014 will be remembered for my diagnosis.

Change is the only constant thing. I adopted a new diet and lifestyle altogether. Dairy products were very low on my list of things I could consumed. Gluten free pasta and oats, huge supply of eggs, chicken breast, avocado, grape juice, soy and almond milk pretty much took over the contents of our fridge at home. It worked. My episodes reduced, my headaches were a thing of the past. I discontinued taking medication after consulting my doctor. I flushed every bit of my stack down the whirlpool of a toilet.

I made it to 28 months seizure free. During that time, I lived a very “normal” life, no longer paying attention to what I ate. I consumed alcohol, chocolate, lived by coffee and everything that someone epileptic should not be near. In October, I stumbled. Seizures came knocking on my door, landing me on a hospital bed. It hurt. It was up to me to take my life back. I chose to live. I eliminated everything that I should not have been consuming. I am four months seizure free now.

I’m okay.

There has always been something I faced throughout this journey as being epileptic: the myth that I can’t do what everyone is capable of; the myth that my lack of a relationship with a higher being has opened windows for demons in my life – and this is me paying for it or I can’t be loved.

Epilepsy isn’t a demonic condition. Epilepsy isn’t a myth. I am not the product of a fallen angel. Epilepsy isn’t a part of my CV. Epilepsy doesn’t impair me from completing tasks to the best of my ability. Epilepsy doesn’t make me “special”.

I’m lucky to have been blessed with family and friends who have been on this journey for me, always ensuring that I am never alone when I’ve experienced a trigger or an episode.

Living with epilepsy can be uncomfortable if there’s no support or love. It does get hard and heart-breaking sometimes, when you have to stand at a party and turn away from the unexpected strobe lights, or close your eyes when police vehicles pass with siren lights twirling, or having to explain every time you’re offered a drink because “No” is always too much of a huge bolus to swallow.

If you know someone who has epilepsy, the best thing you can do for them is to just be there. The worst thing you can do is treat them as if they’re incapable of functioning as a regular human being. Because they are capable of just that.

It’s very important for us in the Caribbean to unite to create a safe space for persons living with epilepsy. Too many times there are complaints about not knowing enough. Here in Trinidad I was pleased to be made aware of the Seizure Support Network, a body that seeks to provide support to persons living with epilepsy.

Development only comes through education and raising awareness. The internet holds the wealth of knowledge. Learn something today. Let’s go purple.

Around the world, March is known as purple month, where thousands of persons partake and host events to raise awareness on the condition. March 26th as #PurpleDay. Let’s go purple together.

Photo credit: Charles Patrick Ewing Electric Sunset Over the Gulf via photopin (license)

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About me: I’m a student of English language and literature at the University of the Southern Caribbean, a poet and teaching artist with the 2 Cents Movement, and a blogger and digital content manager for the Bocas Lit Fest. My interests lie in gender based violence, youth development and women’s rights. As a delegate to the Caribbean Regional Youth Council Policy and Advocacy Conference, I gained skill in position paper writing. My goal is to implement policies that ensure equality through equity.

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Opinions expressed in this article are those of the author and do not necessarily represent the views of the Commonwealth Youth Programme. Articles are published in a spirit of dialogue, respect and understanding. If you disagree, why not submit a response?
To learn more about becoming a Commonwealth Correspondent please visit: http://www.yourcommonwealth.org/submit-articles/

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