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It’s easy now, sixty-one summers later, to talk about a lifetime spent hiding my epilepsy and living in fear of seizures. It’s a story that started sometime, when I was about four, in a small, isolated country kitchen in regional Victoria, my mother noticed that I was taking “funny turns”, moments that took me away and into my own world.
It took time, but eventually, the diagnosis came back – welcome to epilepsy. Back then, it was a limiting and defining description. There were no support groups, little information but much fear. It stalked me through all facets of life, complicating both the serious and the mundane.
It changed little things; it fell between me and life. Little hurdles: like the meds which made you nod off in the afternoon, the need to carry medication (“got your wallet; got your pills”), explanations and reassurances for teachers, coaches and – just when you thought you had it nailed, a seizure took you back beyond the start.
Life in Rural Victoria
My father was a shearer – a tough bastard doing a tough job that left little room for emotions, understanding of this affliction, or small boys falling down.
My mother was of the make-do-and-mend generation, a woman skilled at making the old new, and money stretch. In rural Victoria, we were battlers, working-class. Not that we were unusual. Everyone we knew was doing it tough. It was just the way things were.
There was no help for parents in dealing with this affliction. Epilepsy was a powerful word. Its power came from ignorance, fear at a time when information was scarce and the world was a less kind place. Teachers warned of limited education; university lecturers warned of limited jobs.
"It taught anger, to do things my way"
Football in country towns was the equaliser. Play the game and enjoy the camaraderie of training nights and the Saturday match. Football was the town’s soul. Contribute to the beating of the heart and, well, little imperfections were overlooked. Aussie rules made you normal, and with normality came acceptance.
The turns became grand mal seizures featuring a loss of consciousness and violent muscle contractions. Sometimes I would be hit with one while out in the bush, and wake up in the grass with a few extra bumps and bruises, the object of curiosity for 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, waiting for the tiredness that followed a seizure to ebb away and my strength to return.
"Every seizure eroded hard-fought confidence. Two steps forward and three back."
Back in the day, these were not experiences for sharing. It set a pattern for the rest of my life. You hid it, denied its existence. You found 101 reasons explaining why you did not drive and had awkward conversations over romantic dinners trying to work out when it might be appropriate to explain the recovery position.
I went to work in newspapers in days when smoking in the newsroom was obligatory and you hammered away at heavy, clunky typewriters. Moral conflict – tell the boss upfront and risk rejection or keep your mouth shut and deal with the fallout? I took the second.
In the back of your mind, always, was the fear that there would be a seizure, a public declaration. They overtook me in some classy and some not-so-classy places – the car parks of expensive hotels, the car park of sleazy hotels, the back streets of St Kilda and Kings Cross, and on trains where people merely stepped over me, showers, libraries, courts. Reactions, like locations, varied ranging from panic to indifference. I learnt to recognise the warning signs – sometimes saving the public embarrassment, usually not.
"But looking back, denial was wasted energy, wasted time and too much anger."
These lessons did not become clear to me until later in life. It was a long journey and now I am 60, an age that crept up on me. It’s an age when you look in the mirror wondering if the person looking back did all he could, did all he dreamed of under the stars all those years ago in places marked with lonely mail boxes on the edge of lonely side roads.
Now, I would say that it is all manageable – a dash of common sense in a far more forgiving world will get you by. Learn risk assessment. Employers have a greater understanding, there’s more information and education.
Epilepsy doesn’t change you, shouldn’t define you.
Like bad hair, it’s just something you manage