Fitting Title (My Experience of Epilepsy)

Name: jillmurphy

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Product:	My Experience of Epilepsy
Date:	10/09/01 (171 review reads)
Rating:

Advantages: It's a serious opinion and I really should do these properly.

Disadvantages: But I know Mark won't mind.

Um… there's a rather graphic description just following, so be warned. Bear with me though, it turns out alright in the end.

A long, long time ago I was living with a man called Mark. It was one of those nice, peaceful relationships; I don't think we ever exchanged a single cross word in the two or three years our relationship lasted. Mark was, and is, a nice man. We even worked together, in fact that's how we'd met. One day we were sitting in the staffroom eating lunch. I was reading and Mark was chatting and laughing with everyone else when suddenly he leapt to his feet. The chair scraped backwards and fell over and the noise made me look up, startled. All I could see was Mark, a big man, well over six feet tall and about fifteen stones, with arms raised and fists clenched, looking for all the world like he was coming toward me in attack. It was one of those freeze-frame moments, you know? I just sat. I couldn't move and all I could think was that no one else was moving either, except Mark.

I don't think I'll ever forget the look on his face. To me, sitting there terrified, it looked like a snarl: his face was contorted and rigid, bubbles of saliva were around his mouth and his eyes looked as though they'd been suddenly afflicted with cataracts; they were glazed and unfocussed, and yet they seemed to be looking straight at me. Horrible, slow-moving moments took an age to tick by and then he fell to the floor, still rigid, but jerking and moaning. One of my colleagues, an ex-nurse, rushed forwards with her jacket which she rolled up and pushed under his head. I, and everyone else, still just sat, staring, shocked, afraid, unable to move. And still the time ticked by so slowly. Eventually, after what seemed like hours, no, not hours but a simply unmeasurable amount of time, Mark stopped twisting and and convulsing and began to sigh deeply, with the longest, most drawn-out breaths. An ambulance arrived, som
eone had called it, I've no idea who, and I went with him to the hospital.

Inside the ambulance Mark was awake, but dazed and confused. He held on to my hand for dear life, like a small child in a strange place, afraid to lose sure contact with its parent. He couldn't remember what day it was or what year it was, and when asked for his address gave a street name I didn't recognise, but later turned out to be the house where he'd lived as a very small boy. He wasn't sure who I was either, but realised that he should know, and his face crumpled into sad, frightened, unsure tears. I felt like doing the same, but just sat there holding his hand back, as tightly as I could, head whirling but trying to look calm and encouraging. The rest of it, the casualty department, the nurses buzzing to and fro, the doctors, the white coats, the tests, the serious questions and answers, today they are all a blur. I only remember Mark, the chair scraping, the awful look on his face, and how terribly afraid I was, and how terribly afraid he must have been.

And that was the first time I saw an epileptic fit.

That was a long time ago and since then I've seen Mark have many more seizures, each one a little less frightening and distressing for both of us. We're not together any more: we've both met and married other people and we've both had children. But we still work together and, happily, we're still friends, good friends. Mark turned out to be severely epileptic. His fits are big fits, seizures I should really call them: they last for a long time, up to fifteen, maybe twenty minutes each sometimes, and despite high doses of medication he still has them fairly regularly. His life has changed quite a lot – he can no longer drive a car, for example. Epileptics are required to give up their driving licences and can reapply generally after a year free of seizures but Mark has never been free for more than a couple of mo
nths at a time. Still, we live in London, and the public transport service is good, and his wife drives. Mark must make sure that nothing interferes with the absorption of his medication and so late night vindaloos after an evening at the pub are pretty much out of the question for him. He needs to walk away from stressful situations more than the rest of us do, and he needs to make sure he gets enough sleep and that his sleep is of a regular pattern. Mostly though, his life carries on as normal, much as yours does, mine does, or anyone's does – he goes to work, he has a social life and he insists as loudly as anyone that his daughter is great.

So it's not so frightening any more, for either of us, or for anyone else close to Mark. After a while we even developed a joke between us – after a seizure I'd give Mark ice-skating style marks out six for the "artistic impression" of his fall, straight into the recovery position being at least 5.9, of course. His mother didn't find it very funny, but we did. In some ways Mark has even found benefits to being diagnosed epileptic – although the seizure I described above was his first, full convulsive fit (or Grand Mal), it is thought that Mark had suffered from non-convulsive seizures (or Petit Mal) throughout his life. It has made sense to him of many past events: times when he thought he couldn't remember the lesson he'd just attended at school, or where he'd got with his homework, or what his mother, or his friend had just said to him. He'd often felt stupidly forgetful as a child, and considered himself to be not as bright as he should be, and had spent a lot of time trying to conceal and cover up those "white spaces". Now that he knows their cause he's felt his self-confidence and happiness in himself to grow and flourish as it always should have done. So in a strange but good way, it's made his world a more secure place.

Ther
e are many different types of epilepsy – seizures range from those Petit Mal "blank moments" which can last for several minutes or just a moment or two, to the Grand Mal convulsions which Mark has, lasting anything from seconds to those long minutes I described. And there are many, many epileptics too – did you realise that one in twenty people in the UK will have a seizure at some time in their lives? And that one in fifty will be diagnosed as epileptic? That's an awful lot isn't it? The condition can be controlled in the vast majority of patients, for about two thirds of sufferers modern medication will mean fit-free living. Few are like Mark and continue to fit regularly, but there are still large numbers of people like him. And so, although it is a terribly frightening thing, to see someone in convulsion, you should know that as a general rule there really isn't so much to be afraid of. It looks so dangerous, I know, but mostly it isn't anywhere near as bad as it appears. I've taken the liberty of pasting one of those sexy little bullet point lists from the British Association of Epilepsy's site (http://www.epilepsy.org.uk) to show you that most of the time there is little you can or should do until the seizure is over and when you should be worried and seek help:

WHAT TO DO:

* Put something soft under their head
* Prevent others from crowding round
* When the convulsive part of the seizure is over, roll them on to their side to the recovery position
* Check they are breathing easily
* Stay with them until they regain full consciousness
* Be reassuring and minimise any embarrassment

WHAT NOT TO DO:

* DON'T try to restrain the person having a seizure
* DON'T put anything in their mouth or force anything between their teeth
* DON'T try to stop the seizure
* DON'T try to move them unless they are in a dangerous place e.g. in the road
or at the top of stairs
* DON'T give them anything to eat or drink until they have fully recovered

WHEN TO SEEK MEDICAL HELP:

* Someone has injured themselves badly in a seizure
* They have trouble breathing after a seizure
* One seizure immediately follows another
* The seizure continues for longer than usual
* The seizure lasts more than five minutes and you do not know how long they usually last
* It is the person's first seizure.

So you can see that unless the seizure lasts for an overly long time, or the person has injured themselves in their fall, there really is little you can do. Don't feel helpless – it's truly because there is nothing to do, except wait for it to be over. The most important "right" thing to do comes when the person is beginning to regain consciousness and the seizure has ended. Read those words above, "prevent others from crowding around". That's really important. As epileptics start to come around remember that they have no real memory of what's happened. They're confused, a little bit scared maybe, and the last thing they need is to see crowds of faces peering at them. Often, the person will have a friend or relative with them and in that case you really are better to walk on by (after quickly checking with them they don't need you for anything practical, like carrying bags to a car, of course), for a familiar, reassuring presence is all they will need. All you will do by hanging around is add to any distress felt, and chattering and discussing the person is just not nice, for them as they start to be aware of who's around them or what they're saying, and also for the people trying to look after them. At work, even now, I find myself raging inside at the people who will insist on standing about talking about Mark and his seizure, however well-meaning they are. It's a "does he take sugar" kind of thing, you
know? In fact, I'm only sitting here writing this, because one of those well-meaning work colleagues made Mark cry just the other day at work by asking me questions about him as I sat with him after he'd had a seizure. They didn't mean to, but they did.

If the person is alone then you need to just sit with them quietly, answering their questions briefly but reassuringly, and persuading them to lie still until they're fully recovered. Most people are very disorientated and sleepy for quite a long time afterwards, so don't worry if their words don't make too much sense, just talk quietly to them and make very sure that they can get home safely for a good long sleep. Of course, if you're out in public and you can't find an ID bracelet or card with any information, and you're at all unsure, then call that ambulance. But do try not to be afraid. And do try to stop people doing that crowding in thing if you can.

I'll stop now, because I'm starting to go on, I can tell. I really did tell you that story for a reason though – because I want you to know that if epilepsy ever touches your life in any way, if it touches you, or a member of your family, or one of your friends or work colleagues, or even someone in the library, the shops, or the street, that mostly you've no reason to be as afraid as I was. Epilepsy is not a matter for fear or revulsion, it's just an illness that people suffer from, like any other illness. It doesn't mean mental illness or handicap and it has no reflection on a person's abilities or capabilities, it just means they have epilepsy. For my friend Mark things have turned out just fine, his life is a happy one with a few inconveniences, like driving, that really are minor ones on a cosmic sort of scale, he's no "different" to you and I. And you shouldn't think he is.

Oh yes, and I'd like to say thank you to Mark, because when I asked him
if he'd mind me writing about him here, and if he'd like me to change his name he said, "Of course not. And why would I want you to change my name?"

For more, and better information than mine, head off to the following three sites:

http://www.epilepsy.org.uk

http://erg.ion.ucl.ac.uk/NSEhome

http://www.epilepsynse.org.uk/pages/index/home /

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