Epilepsy from the very beginning

I had a vaccination whilst I was a baby which caused me to get encephalitis. This started my epilepsy.

I was initially put on Phenobarbitone, but got taken off of it after a short period of time - because it made me hyperactive - and the doctors put me on Mysolin instead, for about 14 years, until they realised that when Mysolin gets into your body it turns into… Phenobarbitone.

My mum felt awful when she found out, because she gave me quite a few good hidings until I was about 10 for being a rude, cheeky, mischievous little sod, etc. I don’t blame her though, because I’d most probably have done the same if I was in her shoes.

A lot of my fits were petit mals, and I’d get an unpleasant butterfly sensation - like what you get when you think your wallet or purse is missing - when the fit was hanging around, then as it started, it got stronger and stronger until it reached a certain strength, stayed at that strength for ten to twenty seconds then it would slowly get fainter and fainter until it finished. However I also suffered from complex partial and grand mal fits which seemed to occur when if I had a severe temperature, extreme stress, or great excitement which could be due to a fever, holidays, birthdays, Christmas, etc. The problem for me was that all my fits felt the same when they were beginning, so I never knew what type of fit I was going to have.

With the Petit Mal fits I’d be fully conscious of what was going on but I’d become very still because I’d become ever so sensitive, so any movement would make me feel the coolness of the air even more and the fit would get stronger. Sometimes even the wind blowing or breeze caused by someone walking past me, as I stood still, would aggravate the fit.

I found it so frustrating at times when people would notice that I was staring and tap me on the shoulder and say something like “Alright Steve?” or click their fingers in my face, because that often caused the fit to get stronger and become a complex partial seizure, which I really hate, because I do things I don’t intend to do and cannot recall doing them.

I found it very annoying when the teachers wrote in the school reports that I did not pay much attention because I often daydreamed in class, when in fact I was having Petit Mal fits.

I still did all the things which other kids did. I climbed trees, rode a bike, played football, went to an adventure playground, played hopscotch, etc.

I was lucky to always wake up with an aura inside me when I was going to have some fits. My fits often came in clusters, so I may have had three fits one day two the next day and one the day after, but if I still felt that aura inside me, I knew not to ride a bike, climb a tree, etc. because I was going to have another fit. Then once I’d had that last fit and the aura had gone, I could do what I wanted.

When I was about 8 the specialist put me on a drug called Ospolot as well as Mysolin and I was fit free for two years. Then as I came into adolescence the hormone changes started my fits off again.

My teenage years were very tough because of the ignorance from a lot of society, especially school, who associated epilepsy with a problem related to the brain and the brain responsible for intelligence, so I got perceived to be stupid and treated like an idiot by some of the teachers. I was also verbally and physically bullied by other kids.

The punches and kicks really hurt but could be eased by rubbing them. Unfortunately the vicious words couldn’t and they lasted many years.

Every now and then I’d have a grand mal fit which may have been caused by severe stress, a nasty virus or a big change in my medication.

These days stress still aggravates my fits, so too does it being too hot or too cold.

The ignorance and verbal abuse which I have experienced at school and work has made me a good listener, aware of how powerful words can be and that it’s also not what is said, but how it’s said.

My epilepsy got worse over the years and in my late thirties I was informed that if I did not have the part of my brain which was causing the fits, removed, then I’d be dead in twelve months.

So in 2001 I had my left temporal lobe removed. It reduced the number of strong epileptic fits I was having, but has really affected my short term memory. I now also mishear a lot, my sense of smell has shifted, so I can smell burning very easily but not so sweet things like flowers or perfume. I also need more salt, vinegar and relish on my food as my sense of taste has got weaker.

This day and age I tend to have quite a lot of dissociative seizures which also get caused by it being too hot, too cold and severe stress. I hate them because they’re like grand mal fits but I retain full consciousness. I can talk, hear, etc but struggle to get my body to do what I tell it to do.

I may tell my arm to stop shaking, but it may carry on. The same goes for my leg. It reminds me of just after I had my brain operation because I’d try to say “Hello”. My brain sent the signal to my mouth to do so, but the word which came out me may be “Lo-hel” because the syllables would come out in the wrong order. It took a while to get myself to speak properly again and I think I’d rather have a grand mal fit than a dissociative seizure because with a grand mal you lose consciousness and are unaware of how much you’re making yourself look an idiot, but with dissociative seizures you know all what’s going on which shouldn’t be, but you just can’t stop it.

Last year, a line manager stood with her foot pressed very firmly on the side of my face as I had a strong dissociative seizure and I could see, hear and feel all of what was going on. My head really hurt with the tread on her trainers pressed hard on me as my head shook about.

If I stood on her face it would not be accepted. It may be seen as racial or sexual discrimination, but I find at my place of work a lot of discrimination towards hidden disabilities ie epilepsy coming from different races & religion.

At the same time I do find it very frustrating having had to prove myself more intelligent than someone else in order to be treated equally to them, just because I had epilepsy. Everyone should be treated the same.

I still can’t get over that fact that in the twenty first century, in one of the top seven countries in the world, there’s still so much ignorance and discrimination towards people with epilepsy.

Discrimination, is discrimination, irrespective of who commits it and who it’s against.

If I’d given in to epilepsy, I’d never have continued working, studying ‘O’ Level Physics at evening class to prove my intelligence, doing a Diploma in Counselling at night school, etc.

Unfortunately having epilepsy has changed my choice of career. I may well have been an electrician, a fireman, a police officer or a counsellor had it not been for the epilepsy.

The first three jobs the reason is obvious, but with the last one, after studying counselling for three years and being so near the end of my placement, I had a big fit on a bus and someone stole my briefcase which had my confidential notes in it and I lost my placement.

Luckily there’s less discrimination towards people with disabilities than there used to be, but there is still discrimination towards people with hidden disabilities ie epilepsy and a lot of ignorance.

What frustrates me most is that people who have cried about discrimination (different races and religions) have discriminated against me because of my epilepsy. It’s a bit like “Pass The Buck!”

It would be so nice if we could all share care, courtesy and respect for one another, accept our differences, because women may be a pain in the backside at times, but so can men and it would be a boring old world without them.

The same can go for people of different races, religions, sexual orientations, disabilities, hair colours….

They all make the world more interesting and exciting if they share care, love and respect for one another and take away, greed, hate and disrespect.

That’s what I hope to do by supporting others with epilepsy and their loved ones.

Steve