Epilepsy Is Not The End – My Story

Today marks International Epilepsy Day around the world or ‘Purple Day’ as it is sometimes referred to as epilepsy charities and organisations around the globe ask you to wear something purple to show your support for the condition…… I for one, will NOT be wearing purple today (sorry)!

For me, as someone who lives with epilepsy the past 10 years now, it has been something that has created obstacles in my life but also drove me to work harder and overcome what people said I shouldn’t be doing. I have also seen many false claims and facts about the condition which I will come onto later in this blog post.

Firstly, a bit of a back story on my personal situation which is so minute compared to others I have heard in the past. Roll back to Christmas Day 2007 (I know, the best gift my parents ever got) and we wake up for Christmas presents like every other year but there was a slight difference, I didn’t feel the same as I did the day before. At 17, I had just finished working on some shows as a dancer and choreographer so I was naturally excited for some rest and chill out time over the holiday period, ending up in hospital before my Christmas dinner was not my idea of relaxation.

The morning begun with opening presents as normal, followed by a visit to my Nanny’s house where I was texting on my phone but had no clue who I was texting or why I was pressing buttons, opening the fridge door with no clue what I wanted to get and walking to the bin with nothing to put in it. Even though I was doing ‘stupid’ things, I didn’t once raise the alarm to my family that I felt strange, I’m not quite sure whether I thought I was OK or I didn’t want to alert anyone to the fact that I wasn’t the same as I was the day before.

Christmas dinner is arriving and as we sit at home to start, I begin to prod and poke the mash potatoes with no intention of eating them, I remember my Dad asking was I going to eat that and with a sudden wave of emotion I stormed out of the room to the next room and that is all I remember. What happened next was a full blown (tonic-clonic) seizure, my body went stiff, foaming from the mouth and eyes rolled back in my head but thankfully my brother and father had followed me to the next room realising that I wasn’t myself.

One in 26 people will suffer from some form of epilepsy in their lifetime and mine just happened to begin at 17 and it just so happened to ruin Christmas Day for everyone. I was taken to hospital were I took another seizure and was ‘out of it’ for a whole day, not remembering my name, where I was or who other people were. Once you take more than one seizure you have to be diagnosed with something and for me it was epilepsy. I underwent scans, brain tests and other exams, all of which showed normal but to be safe, I was told I had epilepsy and would begin daily taking of tablets to keep it in check.

My whole life was coming crashing down I believed as I was told I could not drive, needed to relax and take things easy…. I had just started my own business, started driving my own car and was having fun. The no alcohol policy didn’t matter to me as I wasn’t a big drinker anyway and to this day haven’t drank since.

After a few months of feeling down and depressed about how these two seizures could ruin the rest of my life, I worked through it and resumed life as it was. Ok I will admit, I wake every morning thinking ‘is today the day it happens again?’ and every night going to bed saying ‘please don’t let anything happen tomorrow‘ but this is my life now and will be for possibly the rest of my life. I have had one further seizure in 2009 and some days of absence were I can’t think straight or feel a bit mixed up but if I sleep for a day, it usually passes.

Now to a picture I saw posted by a good friend of mine a few days ago on Facebook which was a leaflet given out by teachers in a school to the students to raise awareness for today and how shocked I was at how negative an image it was putting into children’s minds of ‘if you get epilepsy, you’re doomed‘. See picture below:

Look how the side effects of epilepsy are described: no driving, less chance of your dream job and laughed at and bullied…. should children be given this impression of the condition? For me, I now drive like every other person, I have worked hard to achieve my dream job and I can certainly say I have never been laughed at or bullied for having a condition which can affect every single one of us at some stage of life, you are never too old for epilepsy, my Nanny was diagnosed with it the year before she died at the age of 90.

If I had of been given this leaflet in school, it would have terrified me of getting the condition or worse still, if I was a child who had epilepsy and was given this during my school time and read it to myself, I would feel less capable than everyone else who strives to have their dream job. And let’s not start with children being terrified of being bullied because of a condition they have, don’t students already have enough to worry about?

Thankfully all the information sites, leaflets and organisations out there are not this blunt and frankly unprofessional on their approach to this condition, you can find great information and details about helping someone who is having a seizure and tips on first aid for people with epilepsy online.

If you feel like wearing purple today, go for it but that won’t raise the awareness needed among young people and old alike who need to be aware of the symptoms of seizures and epilepsy so why not read this article or share it with a friend so they get a more detailed insight into what it is really like. I will just point out lastly, my epilepsy is nothing compared to some people who live with over 50 seizures per day, they are the real stories you need to hear but this is my part forĀ #InternationalEpilepsyDay .

Do your part today by sharing and talking about Epilepsy with your friends and family.

 

Written by @Kenneth_Giles

 

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