Wednesday, 12 September 2012

Life was rosy - then at 52 he developed epilepsy

Epilepsy is limiting. Many of us get the chance to get our heads round that, if you know what I mean, because our minds start misfiring early in life. But can you imagine if you've been happily motoring along life's journey and suddenly your brain flips a switch at the grand old age of 52. You have to give up your job, your driving licence and adapt your way of life  - because you get 'that thing called epilepsy'!

That happened to Ryan* when out-of-the-blue two years ago, aged 52, he developed a form of epilepsy. He was employed as a security guard and, with the best will in the world, people who have recurrent seizures can't hold onto that kind of job. Of course, he could no longer drive either and because in the UK we have to be seizure-free for one year before the DVLA reissues a licence, he's still not driving.

"I thought my life had come to an end!" he says. "Everything I knew was taken away from me."

That seems a bit dramatic to me (and I've told him so - but, then again, I was a teenager when I was diagnosed so have lived a pretty epi-ful life and had plenty of time to get used to it. Yep, in some ways I've had it easier by having it longer!)

He says: "I kept telling the professor he couldn't be right when he diagnosed 'epilepsy'. I told him I didn't fall on the floor and shake. I didn't believe him - and I didn't want to believe him. I thought my life would be over."
Ryan wanted answers - why had he suddenly developed epilepsy? There had been no accident so no head injury. There was no history of epilepsy in his family. It had descended without warning for seemingly no reason. But doctors had no answers for him. He had to accept that sometimes, it just happens. So what does Ryan (who now realises, by the way, that his life is not over) do when he has a seizure?

"Well, I need to sit, otherwise I lose my balance and sort of stagger around. I get a dreadful headache and tremble - although people can't always see that I'm trembling. Afterwards I feel very, very tired and I just want to sleep for maybe two or three hours."

Apparently some people might even think Ryan was drunk if they saw him during a seizure - and that's fine by him because even two years down the line, he's told very few people about the diagnosis. He would rather people make that assumption than 'come clean'!

It seems it's partly to do with cultural attitudes. Ryan comes from an area of Russia and although he and his sisters came to the UK when they were very young, it sounds like epi-troubles are very much hushed up in their corner of the world and Ryan's keeping true to the tradition. He hasn't told half his family or most of his friends in case they'll reject him. He's only let me tell this story by changing his name to protect his identity.

Shame...because the more of us who try to hide will only be helping to fuel society's fear of disability. Believe me, I understand the temptation. I just refuse to give into it.

*Name has been changed to protect identity.

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