Jeremy Orbell helps Young Epilepsy fundraise in the Peterborough area. He talks about his experiences of being diagnosed with epilepsy as a teenager and how it affected his early years.
Original article can be found here.
When were you first diagnosed and at what age?
I was first aware I had a problem back in 1986 not long after starting my first job at Norwich Union (now Aviva). This would make me around 17-18 years of age. One of my tasks was inputting insurance details on to the computer system and I often felt myself losing concentration after looking at the screen for long periods. I put the problem down to tiredness and just put it to the back of my mind.
The following year I took my driving test and passed first time but at no time did it occur to me that these occasional blackouts could've been putting me in danger.
In 1988 I moved from Norwich to Peterborough and took a new job which eventually led to a role in the Design Studio at Thomas Cook. All seemed fine then one day in the Autumn of 1990 I had a series of absenses in quick succession and a colleague said I should get it checked out. Even I admitted it seemed odd so I booked an appointment with my GP who promptly told me not to drive until we'd established what the problem was. I guess he had an inkling pretty quickly.
I had some tests at the district hospital and then on the 18th February 1991 - not too long after my 22nd birthday - the news came through that I had what was in those days called Petit Mal epilepsy (these days referred to as absence seizures). I was told that my driving days were at an end unless the absenses could be controlled with medication for a minimum period of two years.
How did epilepsy affect your life at the time?
I remember being quite upset initially, mainly because not being able to drive took a lot of the spontaneity out of life. The previous summer I was at home one Friday with nothing to do and decided in a split second to go somewhere, threw a few things in the boot and went to Scarborough.
After being diagnosed I had to look at trains and interconnecting bus services and was it far to walk to get to the place I wanted to stay at. I found that all very frustrating.
In the beginning I was on two different types of tablet, one being Tegratol Retard. At first it felt like I was making progress and I went a full three months without a seizure and then one happened one Friday and I burst into tears - I was back to square one.
Ultimately I was not affected too heavily. I travelled by bus instead of car and had to take pills twice a day. On the face of it that's not much of a hardship when you see what other people have to deal with.
How did friends and family react?
Most of the time people would never know there was anything wrong. I could have a blackout and it be over so quick the person I was speaking to wouldn't even notice. I'd generally have to ask them to repeat what they'd said but as I'm deaf in my left ear too, that wasn't unusual.
The only time I recall getting really strange looks was when I was talking to a girl at work who I was particularly keen on. We finished our conversation and I bent down to pick my bag up...except I didn't get that far. There I was bent over, nearly picking up the bag but not quite. At that second I came round feeling very self-conscious. I blushed, made my excuses and left feeling mortified.
I later had the chance to explain what had happened and she was fine and despite never getting past the friendship stage it was never an issue. It was the same with everybody really. That said, absence seizures in my experience are very different to more severe epilepsies and I'm sure people are unnerved when witnessing a major seizure.
There's only really one occasion where I can definitely recall witnessing a tonic clonic seizure. I was in Addenbrokes hospital having some tests and in the TV room a young lad had a seizure and whacked his head against the wall with some force before settling down and carrying on watching the programme as if nothing had happened.
How does epilepsy affect your life now?
Now it's less in the forefront of my mind I'm beginning to wonder if the blackouts are happening less and less. Previously it could be once a week or four or five times a day. As I sit here now I can't remember the last seizure I had.
The point is people have to realise that epilepsy is not 'the end'. Over the years I have run four London Marathons, done a fire walk, abseiled, been pot-holing, taken the Yorkshire Three Peaks Challenge and now have my own community radio show. I don't look at my epilepsy as anything different to having two arms and legs. I'm already deaf in one ear as I've said and I don't consider that a disability and neither should anyone else.
What kind of seizures do you have?
The seizures I have have always been described as either black outs or absences.
Whenever I am asked about the condition I have a stock response that I give. I tell people it's like watching a film and someone has cut out two seconds of the action. You're in the same place as before but aspects of the scene have changed - it's like your brain shuts down for a moment before rebooting.
Why do you support Young Epilepsy?
I was looking to do something worthwhile in my community and found out about the charity through do-it.org. I’m in the process of helping set up the Peterborough Fundraising Group which I see as a very worthwhile cause.
When I was first diagnosed I was under 25 and could have potentially come into contact with the organisation. Having seen the work Young Epilepsy does, it is vital this tremendous facility has all the equipment it needs to help those who are living with epilepsy on a day to day basis.
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