My ‘time of the month’: tales of an epileptic tagged: , , , , , , , ,

My ‘time of the month’: tales of an epileptic

Posted by Micah James in Uncategorized

Some months ago I was approached by a colleague who confided in me that his 18-month-old son had been diagnosed with epilepsy. Being an epileptic myself, I reassured him that everything will be ok, that it’s completely manageable; you know, the usual spiel. Then, as we were wrapping up the conversation, he asked,

“What if the little tyke has this for the rest of his life?”
My immediate thought was:
‘So what! I will.’

It was obvious to me then that out there in the public arena, the fears and the myths surrounding epilepsy still outweigh the reality.

So let me first start by eliminating some of these myths:

  • We won’t all drop to the ground, start convulsing and frothing at the mouth. Most of us have much milder fits. Even then, those “tonic-clonics” don’t necessarily froth.
  • We won’t swallow our tongues! Who the hell even came up with that concept? Stupid myth.
  • Not all of us have seizures provoked by strobe lights or fancy video games – usually only those whose fits originate from the visual cortex. This makes up about five to seven percent of us epileptics.
  • Alcohol does not necessarily induce seizures. Just look at me: I drink more than I probably should. Tiredness can sometimes bring them on, as can stress, but it really depends on the person. A ‘big night out’ may increase susceptibility to one on but that’s usually because people don’t sleep much (or well) after a big bender.
  • Many of us can drive. Not all of us, but if our medication is able to sufficiently control or monitor the seizures, then there’s no reason why we can’t get a license.
  • Some of us are actually able to get 100% control of our seizures with the right medication and go for decades without a fit. I’ve been led to believe my celebrity doppelganger  (Hugo Weaving) hasn’t had one in many, many years.

But before I get too carried away, let’s return to the topic of what epilepsy  actually is. At its most basic, a seizure is simply erratic electrical impulses being sent around the brain. Epilepsy Action give a great description of it.

Sometimes these electrical impulses are fired at parts of the brain that control physical movements, others are fired at parts that control sensations, and sometimes that control consciousness and behaviour. So an epileptic is merely someone who has recurring seizures. Danny Glover has it, Lewis Carroll had it  – even Julius Caesar had it. Nowadays it’s more than two percent of the population that have epilepsy.

Many people ask me what it’s like to have a seizure. In my case, they have evolved over the years. They’ve grown less severe as I’ve tinkered with my medication. I currently have one every four to six weeks, though they’re sometimes so minor that no-one but me can recognise them. The seizures are pretty hard to describe because they’re each very unique experiences, but I guess there are four common sensations I always experience – all sort of merged together in a big melting pot. They include:

  • Déjà vu.
  • A sense of dread.
  • A feeling of elation, or heightened sense of reality.
  • A memory black-hole that usually lasts for less than thirty seconds. I’m completely conscious during this stage, but will have no memory of what I said or did during that period. Usually, I’ll go into automatic pilot and do whatever was last on my mind. I guess you could say I act out my Freudian ego.

Of the people out there who have seen me have a seizure, a few have realised (or at least thought) ‘there’s something not quite right here’; others have been blissfully ignorant. If you are one of those people who discover that I had one in your presence and not told you PLEASE don’t be offended. I just didn’t want to spoil the occasion. I’m able to assess pretty quickly if it’s going to affect what I’m doing at that point in time. If it is, then trust me I will call ‘time-out’.

On the mild ones I’m back to normal and 100% functional in a few minutes. With my more severe ones, I pretty much feel like I’ve got a hangover: slight headache, drowsy, thirsty… I think we all know those symptoms… and those symptoms last for a few hours – though I’m completely functional during that period. I’ll tell you if I need a break.

So what’s the plan-of-action if you see me (or any other epileptic) have a seizure?

Relax. Chill out. I’ve had them before. I have them regularly so I know what to do. The same principle really applies to all epileptics – even those who are having a tonic-clonic. Providing we’re not hurting ourselves, there’s not much you can really do. Just gently guide us away from any danger.
Be patient. A seizure will last (at most) a few minutes, but it may take us a little while to get our bearing, shake off any grogginess etc.
Give us some space. In theory, it’s really not that different than if you took a little stumble down the stairs. The last thing you want is everyone crowding around you, asking if you’re ok. By all means one person standing by to guide us can be nice if it’s a bad one, but no crowds please.

Other than that, just let us guide you with our needs.

Now don’t let me mislead you into thinking its all doom and gloom. It isn’t all ‘what are the worst case scenarios that we have to cater for?’. Epilepsy has its definite upsides.

In my case:
I never once had to run the cross-country when I was at school. They didn’t want me trekking through the bush by myself (because I was so slow and always at the end of the pack). I got to stay at the camp-grounds and cook the snags on the barbie. How cool is that?
I’ve never had to worry about drink-driving.
I’ve never had to do the overnight shift at work because they didn’t want to encourage any seizures (due to a lack of sleep.)

Recounting my seizures makes for great party conversations. Examples?  I once thought I was a spy and snuck into Coles; at age 26 I offered to drop out of an imaginary high school; two years ago I was a foot away from walking into the ladies toilets (because I needed to go to the loo). More recently, I trapped myself in some random person’s courtyard. Of course I don’t really remember doing any of these things so I’m assuming my friends haven’t employed too much creative licence when recounting these tales for me.

I write all this, not just to set the facts straight, to dispel all these myths, but also because I want to open epilepsy up as an easy-to-access topic of discussion.

I’m sick of it being a hushed conversation I have in the corner of a noisy cafe. I’m tired of promising fellow epileptics that I won’t tell others about their condition. I can understand their concerns: their fears of how others might react if they find out about it. I just hope that one day I can tell them – with a 100% guarantee – that such concerns are just plain stupid; that people will ask before they judge.

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