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This Is What It's Like To Live With Epilepsy

21/03/2016 1:41 AM AEDT | Updated 15/07/2016 12:51 PM AEST
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Cork, Ireland

I don't know when I first became aware of the word epilepsy. Family mythology has me aged about four when it was noticed that I was taking "funny turns". But it's a word that defined me for many years; stalked me through all aspects of life, complicated the serious and the mundane.

What are strong in my memory are the visits to the Royal Children's Hospital in Melbourne (those automated doors were really cool for a small boy from the bush -- "swish, swish" was the sound) and the single light above the bed they kept on late into the night. I lay there staring and tried to cry myself to sleep quietly.

I don't know what my parents thought of it -- the world was a much less kind and supportive place then. Aside from the doctor I doubt there was anyone else to talk with, no support groups, no organisations. I have no doubt they were struggling to come to terms with the word epilepsy just as I struggled later to come to terms with the world of epilepsy.

God knows what my father thought. He was a tough shearer doing a tough job -- back-breaking work which left little room for emotions. It wasn't something we discussed. He was not a man prone to discussing such things. I doubt he was disappointed. I think he worried.

In country Victoria, football was the great equaliser. The club, the camaraderie of the training nights, and the Saturday match bridged all social and economic gaps. It was the town's social and cultural heart and soul. Contribute to the beating of the heart and, well, little imperfections were forgiven, if not forgotten.

Aussie Rules Football made you normal, and with normality came acceptance. Sometimes I would be hit with an epileptic seizure while out alone in the bush, and wake up in the grass with a few extra bumps and bruises, the object of curiosity for the sheep. Sometimes, lying under the sun surrounded by nothingness, I would curl into a ball and sleep for a while. Other times, I would just get myself underneath a gum and sit and dream -- indulging in fantastic adventures in faraway places where I was 'normal', waiting for the tiredness that followed a seizure to ebb away and my strength to return. These were not experiences for sharing with the family. It set a pattern for the rest of my life.

Epilepsy was a powerful word. Teachers told my mother that if I managed to get to Year 10 I would be doing well. Much later, and more importantly, an esteemed columnist told me I probably would not be hired as a journalist but could probably work in a newspaper library. Years later, I met him when I was working for The Melbourne Herald, but sadly my opportunity to gloat disappeared when he couldn't remember me.

The word epilepsy taught me to be angry, to give the bird to the world, to do things my way. "F**k you and the horse you rode into town" became my catch cry. It was my defence. It covered and justified a multitude of sins and bad behaviour. Work longer, play harder, drink more... whatever it took to be normal.

It generated moral conundrums. Do you tell an employer or not? (That was sorted when an old editor merely said it was none of their f**king business.) How do you mention it to your prospective partner? Over the romantic candlelit dinner? "Look sweetie, if I fall over, don't worry, just roll me into the recovery position" is not the most effective chat up line.

Every seizure eroded hard-fought confidence. Two steps forward and three back. I took seizures in some classy and some not-so-classy places; the car parks of hotels, the back streets of St Kilda and Kings Cross, trains where people merely stepped over me, showers, libraries. Reactions, like locations, varied ranging from panic (call the ambulance) to indifference.

Somewhere during my early thirties the anger became wearing and part of me needed to find a better way of dealing with it.

Western civilisation did not collapse because of it, the sun still rose in the morning and the birds still sang. My wife provided a balance and calmness, leading me to wonder how much was wasted, how blurred my vision was by the isolating nature of the 'f**k you' defence.

A friend recently asked me what my advice would be today. I said: "Don't waste your time being angry." After all, epilepsy is just a management issue.

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