Purple Day 2019

Today is Purple Day. A day to raise awareness for Epilepsy. My Dad and youngest daughter, Ashleigh, have Epilepsy. My daughter, after being diagnosed at such a young age has not only dealt with the manifestations of the disease but bullying and isolation as a result of misunderstandings of Epilepsy. I have asked to share her story and bring light to her experiences in time for Purple Day! She is such an inspiration and beautiful soul, and I hope you can see that through her words and her story! Enjoy this chapter written by Ashleigh…

 


What do you think when you hear the word Epilepsy? Does the picture of a person convulsing come to mind, like all the movies? Do you think epilepsy is contagious, and you can catch it like a cold? Or maybe, do you believe that someone with epilepsy should be wrapped in a plastic bubble and treated carefully, like fine china from your Grandma? For me, those where few of the ideas people conjured up about me. So, I am here to tell you my story and let you all know that you shouldn’t be afraid of people like me, “Epileptics”.

When I was diagnosed with Epilepsy I was 7-years-old, and for me, it feels like it has been around my whole life. I never really understood what Epilepsy was, but I did know, it did not affect my everyday life as dramatically as everyone around me thought it would.

 

Epilepsy is a disorder of the brain, in which a person has recurrent seizures that can be either convulsive or non-convulsive. The seizures I have experienced before and after my diagnosis of Epilepsy have included drop seizures, tonic-clonic seizures, absence seizures, and gelastic seizures. Though, the main seizures for me were ‘absence seizures’ where it would appear, that I was staring off into the distance, glassy-eyed and I would be completely unaware of what is going on around me; and ‘gelastic seizures’, also known as ‘laughing seizures’, and as the name suggests I would suddenly start laughing out of the blue ~ even if that comment you made was not intended as a joke. To others, these types of seizures seemed as though I was either not paying attention or suddenly overly happy. Either way, it could negatively affect the way people saw me in certain situations, from teachers forcing me to sit out from class despite being fine to continue learning, or having my peers bully me because they didn’t understand Epilepsy wasn’t contagious, or I was, in fact, having a seizure if I laughed or ‘zoned out’ inappropriately. To me, it was everyday life and when I was young I learned to deal with being forced to sit out or being called names. My family, however, knew it wasn’t right or normal and stood up for me; they knew I shouldn’t be left out or called names. Due to my teachers’ fears and lack of understanding on epilepsy, it became mandatory training at my school for them to attend a course on managing epilepsy in children, and after my teacher went through the yearly course, they began to encourage me and push me to be my very best. I felt as if I had something to work towards, I got to be normal and enjoy being encouraged and pushed like everyone else in my class.

Have you ever heard the saying;

“Sticks and stones may break my bones, but names will never hurt me?”

For most this may be just that, a saying, but for me, it became a mantra that related to my reality and I would repeat over and over. I was bullied so much so that I had sticks and stones thrown at me and was constantly called names such as ‘chicken’ and ‘alien’. As a young kid I didn’t understand why, I felt I just had to tolerate it, even now I sometimes wonder what was the motive behind my peers choosing me to bear the torment they threw at me; I will never know. At the time, I didn’t realise how much the bullying was getting to me, I just took it on the chin and carried on with my life; but being young and being bullied for years leaves unimaginable scars, not necessarily visible ones, but mental ones. These scars have become my shield and sword, I use them to keep myself from being hurt again. Sometimes I consider what and where I would be if I had never been bullied, but I then remember that I wouldn’t be who I am today. I wouldn’t be the girl that puts myself out there, no matter my fears of what may come from doing so, and sure sometimes fear gets the best of me, but isn’t that a reality for everyone? Fear protects us from harm and pain. So, to think back on my past I realise that although I was bullied because my peers didn’t understand my diagnossis, I wouldn’t want to change it, but I also wouldn’t wish it on others.

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Epilepsy does not mean someone will seize convulsively, like the movies. Epilepsy is not contagious, you cannot catch it from me or anyone else. Epilepsy does not mean you must wrap us up in a bubble, throw us in a padded room, lock the door, and throw away the key.

Epilepsy means that we have misfiring neurons in our brain, that may lead to having convulsive or non-convulsive seizures. Epilepsy means we are unique, we are individual, and we are ourselves. Epilepsy means we are strong.

~ Ashleigh


 

See You in the Next Chapter

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