THE BLOG
04/12/2017 11:03 GMT | Updated 04/12/2017 11:03 GMT

Always Wear The Paper Knickers – Lessons In Living With Epilepsy

It starts at the bar when I ask for a drink.

Just a Coke?’ The ‘just’ clearly implying something.

Then people will ask if I’m driving. That’s a story in itself – because I’m not allowed to – I’m not allowed to drive for a good while. They might innocently ask – why? Well, because I have epilepsy, and, actually – it’s a brain tumour. The brain tumour causes the epilepsy and there are rules about driving. Getting ‘the license’ back is apparently possible, but difficult, and anyway, I’m still doing my assigned time.

I’ve found that when you say the words brain tumour there’s often an audible intake of breath. You have to know your audience and place.

People aren’t keen on having their Jäger with a side of T-bomb and that’s absolutely fair enough.

Since I’ve been on medication, I haven’t had another ‘big one’. No one would wish to be nearby if I were to have one of those.

I now have ‘focal’ seizures. They effect one part of the brain, and (in my case) don’t spread to become generalised (that’s when it renders you unconscious – otherwise known as ‘a big one’). They manifest in different ways, and start without warning.

The idea that our brains might do unpredictable things is to most a genuinely frightening concept.

When my medication was first prescribed I was advised to avoid alcohol, late nights, and stress.

Overnight, I *pretty much* stopped drinking (I very occasionally have just one, despite the warnings on my meds).

I’d like to say I’ve learnt (but the truth is I’m learning) to live with seizures.

The ‘seizure sweats’ as I call them come when least expected. Often when I’m having something done to me. Mid-eyebrow threading in the middle of a busy Selfridges branch – the awkward chair and arm placement prompting a sudden awareness that I might, could, have a seizure.

There was the time I decided not to bother with the paper knickers for a massage and then, much to my horror, and more than half-way through – it started. I asked the lady to stop, a glass of water appeared, and was helped to sit up. I didn’t rush back.

More argh than om

I could of course get my various treatments done at home, but I like where I’ve always been, and so the answer, I think, is to keep doing it and assume that at worst it will be… awkward.

No longer wholly footloose and fancy-free, I have a frequently-changing medication regime, and a band of clinicians.

Better to have loved and lost they say, and, it was a blast while it lasted.

I savour my one alcoholic beverage remembering the all-nighters we pulled, the crisp-white wine sipped in the warm sun, and the cans of Red Stripe ordered in twos at gigs – before I really knew what the word ‘seizure’ meant.

I certainly didn’t worry about ‘what if’, not even alone in far-flung places, without a working mobile phone.

It’s time to be sensible now. I have a new responsibility, a thing – a thing to be managed.