sinéad's lifestream

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.

I’m tired of reading and hearing so many criticisms about the Bodies exhibition from anyone with a loud enough mouth to get heard. No, it’s not art. It is Science wrapped in a publicly accessible package, that in order to survive is required to market itself. Yes, it is entertainment. This is necessary in order to engage with people that have never had an interest in Biology, or any kind of Science before. It succeeds where the Science museums fail because it engages your curiosity, appeals to your intellect and forces you to have emotional reactions.

The use of real bodies is paramount to contextualising what you are seeing. For example, the initial displays, in the first room of the exhibition are just fragments of bone and flesh, parts of bodies in glass display cases. More like a “real” museum than anywhere else. One of the largest of these  displays is a pair of legs, with the muscles prominent and labelled  – but without the context of the full body the display just ends up looking like meat, like a large ham at Christmas time.

Adding even more context is the fact that they are posed, which is something that has been heavily criticised, clearly by individuals that haven’t visited the exhibition. The poses represent physical actions, and the parts of the body highlighted match this. They truly help you understand what you are seeing. For example, the cadaver pictured has all it’s individual muscles peeled away from the skeleton, posed as if about to kick something – illustrating how the body’s 650 or so muscles work together for motion or to create force.

I was surprised there weren’t more children at the exhibition when Darragh, Jen and myself went. For anyone that has fears that their child might be afraid or disguisted… all children are naturally curious, and they will only have these reactions if you have them too. The messages it teaches are important for everyone, not just to adults, or to the geeks and nerds that would usually frequent museums.

The exhibition describes how inside we are all the same, that we are not invincible and tries to make you understand the complexity and fragility of how we function. Just because it succeeds in doing this by luring you in with the promise of the macabre doesn’t make it any less valid, or any less educational.