When I was in Primary School one of the boys in my class had a seizure in the middle of Irish lessons. Being children, we were frightened by how his body seemed to shake unnaturally and though he never had another seizure in class again, there was always a sense of unease around him. Looking back, I realise that his remaining school days could have been far happier, if only his classmates had been properly educated about his epilepsy. Instead words like “fit” and phrases like “foaming at the mouth” were passed from the adults to us.
I never reflected upon this, until Mam had her first seizure.
It was only then that I learned how much misinformation there is about epilepsy, and how much ignorance and unjust prejudice there is. For example, a layman understanding of epilepsy is the photosensitive form which is a reaction to strobe/flashing lights, but only 3-5% of people with epilepsy actually suffer from this.
My first source of information has always been the organisation Brainwave. Thanks to them I was able to educate myself, and in doing so I was able to prepare myself for the next seizure (this is a straightforward and simple guide to first aid for seizures [pdf] that *everyone* should read). In understanding epilepsy, it stopped being scary.
I often wonder if my hysterical reaction to Mam’s first seizure would have differed if I had been taught to understand why it was happening and informed as to what an epileptic seizure looked like. I now know that sometimes during a seizure a person can go blue in the face; but I had no clue about this during her first seizure and went into a total and utter panic. More importantly, if I had known how to recognize a seizure from the start, I would have been better able to report this to the doctors in A&E – who were adamant that the seizure followed her cracking her head open on the tiles of the frozen food aisle. I was certain that it was the opposite way around. But they wouldn’t give her a diagnosis, or run any tests, or treat her… until consecutive seizures followed.
Thanks to Brainwave we learnt how a seizure isn’t a dramatic emergency (unless she had hurt herself, like the first time) and that she could easily recover without the need for doctors or emergency rooms (thank god). Luckily for Mam, once she was medicated she stopped having seizures, except for the occasional nocturnal seizure. More recently she has also managed to be weaned off her medication, after going a couple of years seizure free (yey!).
Not everyone is that lucky though, and without Brainwave there would be a total lack of information and support for sufferers. As you can see from what’s been discussed here already, being educated about epilepsy in Ireland is falling solely to them. Unfortunately Brainwave is not a government run organisation and they rely on donations to continue providing support, information, advice and improving public understanding of epilepsy.
That’s why I’ll be attending their benefit night “The Horse Show Hustle” on August the 7th – tickets are on sale here. For €33 you can dance the night away with the satisfaction of knowing the proceeds will be going to an organisation that is greatly needed in Ireland (if you can’t make it to the show you can alternatively make a donation via MyCharity.ie).
I definitely needed them, and in the future, someone close to you might need them too.
Having very much enjoyed this same event last year