Young Epilepsy and the Epilepsy Society in conjunction with River Island are currently running a campaign titled Everyone Knows Someone in order to raise awareness about the condition during National Epilepsy Awareness Week (14 – 21st May, 2017)
Alongside this, they’re also asking for people who are affected by epilepsy – or know someone who is – to help explain what it means to have epilepsy, how it affects them and to help raise awareness using #explainepilepsy on social media.
I’ll be completely honest, when I was diagnosed with epilepsy I had no idea what to expect. I experienced absence seizures for about a month after I hit 21 – it was almost like watching a scratched DVD that jumped part of a conversation but it was happening in real life while I was chatting with people! – and then I had my tonic clonic seizure shortly after.
To be frank, it was frightening. Not only for me but for those around me; my family and my friends. I remember watching TV, blacking out and then waking up at the other side of the room with no idea of the last few minutes.
My seizures are pretty typical of what you would expect to see dramatized on TV – I drop to the floor, my body jerks and I’ll probably soil myself! Yep, pretty dignified… It’s triggered by stress and tiredness (not, as I heard someone in my social circle describe it – flashing lights disease!) and presents itself whenever it pleases. Sometimes I’ve done some pretty weird stuff prior to having a seizure too – my mood can switch to exactly the opposite of how I’ve currently been all day (happy to sad, etc) or I can just decide to go and run every tap in the house without acknowledging anyone. I also get an aura across the bridge of my nose that makes it difficult for me to concentrate so that is usually my biggest warning sign.
All that being said, and as daunting as being told I had epilepsy was, the biggest hurdle I’ve had to overcome is recognising myself not as an epileptic but as a person who has epilepsy. In my opinion, to call yourself an epileptic is to let the condition define you – that’ll be all people see, trust me, I’ve been there.
OK, so I am a person with epilepsy. I’ve had to make some alterations to my lifestyle. I can’t drive but I can use public transport. I had to leave a couple of jobs because of increased seizure activity but I now work at Yorkshire Wildlife Park; only yesterday I got the opportunity to get up close to a rhinoceros! How awesome is that?! I lost some friends who didn’t understand and didn’t have the time for the condition but I’ve got a much closer friendship group now and a family who ALWAYS have my back. I’m a father and a husband. I’m a painter, an amateur artist, a blogger, a podcast host, a nerd and a gamer.
So, while epilepsy can be scary to look at and it can change your life, guess what it’ll never do – it’ll never beat me.