The seizures erased my memories, but unexpectedly bought me the greatest gift I could have ever hoped to receive.
It started with a “funny feeling”.
At 11 years old, I didn’t have the vocab to describe it further. The air would grow still around me, background noise fading to a distant buzz – preparation for the saga about to unfold in my head.
Like an unwelcome light bulb, a bizarre and unwanted thought would suddenly pop into my mind out of the darkness.
Anything from, “That chair is brown” to, “Birds can fly”. Then another followed, “Birds can fly, they fly in the sky, the sky is blue, sometimes grey or white or pink or black” and on and on and on, faster and faster, until an endless stream of fragmented ideas whizzed through my mind like a pinwheel fallen from its axis.
Suddenly, the tangible world was far away; like looking through the wrong end of a telescope. Another plane had opened up, and I was falling through it…
My stomach lurched; half-chewed oats spew all over the floor, and then – quiet.
That’s the best possible way my adult self can describe an epileptic fit. At least, the parts I can remember. The ‘quiet’ was actually the heaving and convulsing; a result of the electrons in your brain moving abnormally fast. To the epileptic, it’s like falling asleep. To the witnesses, it’s terrifying.
Nobody is really sure how it manifested; I have no family history of epilepsy, but it was my parents who suffered the most.
At all of 11 years old, I had no idea what was going on, only that I was being pushed around in hospital beds, receiving endless bouquets of flowers, and missing weeks of school (which I was thoroughly pleased about).
Mum and Dad on the other hand, knew that their little girl was being tested for encephalitis, tissue abnormalities, brain tumours…every parent’s worst nightmare. Aside from the injections, blood tests, and the blinding headaches, I was pretty okay.
Going through high school was tricky. I was constantly changing medications, and with that came side effects. Weight gain, fatigue, terrible sunburn, you name it. I actually don’t remember much of my early teens; the seizures I had during that time destroyed a few brain cells. Many memories have been erased.
But far from worrying about the health implications or the embarrassment of suddenly dropping to the ground and convulsing mid-sentence, my biggest concern was my career.
I knew I wanted to be a stage actress, but my ability to do that was certainly called into question. What about the bright lights? The stress of performing? The late nights and fatigue? All of those things and more can trigger seizures, and I was more than a little distraught.
But I’m going to stop there, because this isn’t a sob story and I don’t want your sympathy. I pulled through. I moved on. And as it turned out, being diagnosed with epilepsy was the best thing to ever happen to me.
Epilepsy has proven quite beneficial over the years. I don’t mean in the cliched, “It made me a stronger person” way, because I don’t think it did. Rather it’s been in dozens of completely unexpected ways, though three really stand out.
1. I can’t drink because of my medication
When you get past missing the obvious fun associated with drinking, you realise the money you save. You’re protecting your liver. Your skin is generally better. It’s easier to control your weight. You don’t crave unhealthy food every weekend.
The only downside is that if I do something hilariously embarrassing, I don’t have the “I was drunk” excuse. I knew exactly what I was doing.
2. I can’t drive
I hear the cries of disbelief, but not being able to drive is actually the best. As with not drinking, the money you save on rego, petrol, tolls, etc. is unbelievable.
Plus I’m reducing my carbon footprint. As long as I live near public transport, I’m sweet.
3. It’s made me a more greatful person
Although I can’t speak for all epileptics (there a lot of unfortunate souls who have massive seizures every three minutes), I would much rather live with epilepsy than diabetes. Or schizophrenia. Or chronic migraines. And I’d certainly rather epilepsy than endometriosis. Compared to most health problems, it can be very easy to live with once it’s managed with medication.
More importantly though, epilepsy has never stopped me from living the life I wanted. I’m a performer, I’m on stage regularly, and I have absolutely no problems.
There are ways to live with epilepsy, even – yes, weirdly – even love it.