Interestingly enough my journalistic hero – and the reason I got involved in The University Times – has epilepsy like me. His name is Edward Snowden.
In his book Permanent Record, Snowden says that the feeling prior to a seizure is “impending doom”.
“For those who’ve experienced it, this sense of impending doom needs no description, and for those who haven’t, there is no explanation”, he writes.
“It strikes so suddenly and primally that it wipes out all other feeling, all thought besides helpless resignation.”
To date I have yet to read a better description of having a seizure, and for some psychological reason that description – when I first read it – reassured me more than any of my neurologists have ever done.
Epilepsy – like most disabilities – is a personal affliction. No one knows what’s going on in your head at any given time. You might be thinking that you’re going to have a seizure, but no one else can know that, unless you tell them.
A seizure is also very personal, as you – and only you – are affected. It’s not like a cold you can catch and spread around. It’s this thing that you have. It’s an experience that no one else can share.
At least I felt that way until I read Snowden’s description of his first seizure.
To date I have yet to read a better description of having a seizure, and for some psychological reason that description – when I first read it – reassured me more than any of my neurologists have ever done
George Orwell wrote that “perhaps one does not want to be loved, so much as to be understood” and that quote has always stuck with me. I think it’s why Snowden’s explanation is so powerful. Before I didn’t think anyone got what epilepsy was. I knew a few people with it, but had never really discussed the “impending doom” thing before.
Snowden helped me realise the importance of talking about epilepsy, because he made me feel less alone and made me feel finally understood.
I was at peace with epilepsy before reading Permanent Record, and had written about my experiences before. But back then, that article had been more about myself – it was letting everyone know – en masse – that I, Cormac Watson, have epilepsy (I can be quite dramatic).
Snowden made me realise that talking about epilepsy shouldn’t only be a way for people around me to know that I have it or to raise awareness about it, but also a way to help other people with epilepsy feel more comfortable. Now, as someone who is a bit of a veteran when it comes to epilepsy, I can help those around me understand it, but also help my fellow sufferers feel better understood.
The painful truth is that someone who has epilepsy is – to varying degrees – hobbled by it. However, in my experience (and I want to stress that this is my experience, as epilepsy is a broad church), that doesn’t mean that you can’t do cool stuff, with a suitable amount of forethought and flexibility. Living with epilepsy might mean you have to work harder than the average person or place restrictions on that work, but it doesn’t mean that you can’t keep step with them.
Snowden made me realise that talking about epilepsy shouldn’t only be a way for people around me to know that I have it or to raise awareness about epilepsy, but also a way to help other people with epilepsy feel more comfortable
My time in this newspaper has really driven this credo home. I’m not aware of anyone else who has written for the newspaper that has had epilepsy – certainly I’m the only person with epilepsy to have become Editor. When I was in first year, the idea of being even remotely senior was a pipe dream. Late nights, for me, mean seizures, and there are plenty of late nights in The University Times.
But by hook or by crook I’ve managed to stumble my way up the ranks to the top job, with some cunning, hard work and a lot of sneaky naps. Most people I have dealt with have been very understanding about my condition and have given me a helping hand where they can.
I can say, however, that it would have been helpful to know that epilepsy would not bar me from moving up the paper – because certainly no one told me that. And that’s one of the reasons I’m writing this piece. It’s a piece I really could have done with back in 2016 when I first started writing.
So to my fellow people with epilepsy, firstly, you are not alone. Plenty of people understand what you’re going through. Secondly, don’t be afraid to talk about it – people are surprisingly understanding (and don’t seem to care too much either). And finally, remember that with a little ingenuity, some kind people around you and hard work, you can do really cool things – even if right now those things seem unattainable.