Interview EP34

Age at interview: 52

Age at diagnosis: 15

Brief Outline: Diagnosed with epilepsy in 1965. Has tried several different drug treatments, and had 14 years free of seizures. Epilepsy has been controlled again since 1997. Current medication' carbamazepine retard (Tegretol Retard), phenytoin (Epanutin) and diazepam (Valium).

Background: Retired senior deputy headmaster; married, no children.

Discusses the reactions of his grandmother and how his parents were supportive but quiet about...

When the second time it came round, when I had the second fit which wasn't very long afterwards, and they decided that 'yeah you've got epilepsy', my grandmother, my grandparents, my grandmother particularly was really distraught, sobbing. And basically my parents were supportive but, they kept the, its like they kept the lid on things. Yeah they didn't want, there was a degree of shame if you like, not, I don't mean that unkindly on them, I think they meant well and they were very supportive to me. But they didn't want to go round saying 'Excuse me but my son's an epileptic,' and they would much rather I suppose naturally talk about success rather than what was certainly perceived as a failure.

Discusses being monitored by doctors whilst finding the right drugs.

Yes I was on, basically phenobarbitone, they tried different strengths of phenobarbitone. And it wasn't until my late 20s, until I had finished my Tokyo job, finished going round the world and so forth with the import/export company, it wasn't until some time. It wasn't until an expert epilepsy, the GP said 'This is a condition, I'm no specialist, I can give you a specialist and he can deal with it.' So, it was much nicer than that but he was really, really supportive. And the [doctor], who is sadly retiring, he tried one or two different kinds of medication and eventually they found the right balance and I was pretty much fit free

It was three drugs. Um, carbamazepine, diazepam and Epanutin and they tried them at different strengths and the carbamazepine, Tegretol I think, the doctor said apparently that its got a very short half life. And I was taking it in one form and then he gave me the slow releasing one, or the one that, that was the most significant change and that was some years ago. 

So you took the tablets every day' morning, evening? 

Four times a day. 

Discusses how he remembers to take his medications.

And did you have a way of remembering to take them or were there times when you forgot?

No, I don't think I ever forgot, I very, very rarely forgot. I actually had a sort of almost an inbuilt clock, it was um, with tea in the morning, so eight o'clock at the weekends and six on work days. It was eleven o'clock, whenever lunchtime was, twelve or one o'clock and six o'clock in the evening and that was, and if I didn't then I sort of felt um, this is over a number of years, but I didn't felt quite right. But I always carried the tablets measured out in a little pot. And I've actually ran out of these wonderful little plastic boxes, so I've had to go onto pill boxes now. But as long as I'd got the amount there and sometimes I would think well have I taken them, I could just check. And it has become a way of life and it's not a problem.

Explains that he was surprised to learn how many people have epilepsy.

I went to the library when I was 18 or 19 and said 'Have you got any books on epilepsy?' And the chap said 'No.' He said 'You'd better try the hospital.' And I said 'Well have you got anything on medical conditions?' And he said 'Well a medical directory, a medical dictionary,' he said 'but you can't take it out.' And the epilepsy description was very much a very medical, what has happened. I couldn't find any, anything that talked about, there are lots and lots of different seizures. I think the thing that would have been most encouraging if only I could have found out was just how many people suffer epileptic fits. I mean it's the most common neurological disorder and is it one in three people will suffer an epilepsy seizure at some point in their life. If I'd known that I'm sure things could have been different. 

Were there questions over the years that you had about epilepsy that you felt were, were never answered? 

No I think I was given sufficient information, looking back on it I wish I had a great deal more information. Most of all I wish I had realised just how many people do go through aspects of this.

Feels that keeping his epilepsy a secret caused him a lot of damage.

But I do think this, my life has been one of deceit and it has been really refreshing to be able to say 'Hey I have epilepsy, I'm no different to you, I'm not a creature with two heads, I'm not mentally deficient. There have been occasions when I've blacked out, when I've had a seizure and its been a bit alarming.' But I hadn't ever said that. And in saying that now I think it made me more aware of, well firstly of myself. Also what my family and my friends have put themselves through in terms of their support, particularly my wife and my close friends.

'What it did do to me, it made me deceitful. It made me very angry, very much the epitome of the angry young man, 'OK I have epilepsy but I'm going to prove it to you lot' and that sort of thing. Maybe in these days workaholism is considered to be a positive virtue, may be it was a good thing but I don't think it was, I don't think it was good for me as a person. I think hiding it was the worst thing and the biggest damage that happened.

Explains that he has recently been telling people about his epilepsy and says epilepsy should be...

As soon as I retired, then I didn't care telling, who I told because it didn't matter any more. My career was over and that was the only thing that was, you know I had a pension so I could live OK. So it didn't matter and then I could, I was able to stand up. It was pretty cowardly, but that was when I was able to stand up and say 'OK is there anyone I can help' 

...I haven't totally come out, I haven't told everybody. You know the people next door don't know. The guy this side does, its not easy, its not easy to say and I don't want to be going around saying 'I have epilepsy' with a big badge. It's got to be done in the right sort of way. But when people now talk about their child has epilepsy, I can actually say, 'I do understand what you're talking about because I've had epilepsy for most of my life'. And its amazing how many times people look back at me and say 'No, you, really but you were a headmaster,' and you know this amazement that I'm sort of relatively normal, I haven't got two heads! (laughs). 

And I would also like epilepsy to be on a par with diabetes and asthma and all the other things that we talk about so openly and people say 'oh I've you've got' blah, blah, blah, you know I'd like that to happen. And that starts partly in the school, partly in the media and obviously partly in the home.

Explains why he didn't tell employers about his epilepsy.

And subsequently if I went anywhere I would find out where the toilet was or where there was a bolt hole for me to get, if anything happened, that I could get away. And I successfully managed to cover that up, well I must have done it fairly successfully because I basically leapfrogged up the education ladder. I stopped one career, started another and moved very quickly up that ladder so I think it was hidden. 

...So um, I don't feel any resentment about my career. What it did do to me, it made me deceitful. It made me very angry, very much the epitome of the angry young man, OK I have epilepsy but I'm going to prove it to you lot' and that sort of thing.  Maybe in these days of 'workaholism' is considered to be a positive virtue, may be it was a good thing but I don't think it was, I don't think it was good for me as a person. I think hiding it was the worst thing and the biggest damage that happened. 

I think its as difficult, it's a very difficult thing to quantify. But we are at the moment in a game where markets are depressed, the economy is down, the world economies are down. When somebody takes a person on, when a company takes a person on, they take that person on to use them to make a profit. And whatever they may say in their mission statements and all the rest of it, the bottom line is they have to make a profit. They're not going to take somebody on who may in the middle of a sales talk have an epileptic fit. Or um who may, because they're not necessarily aware of what epilepsy is, that they, they don't want somebody who they think well if he's epileptic he may have some psychological disorders or who may have loads of time off, a whole range of things on that. No I think its just as difficult, and I would give the advice to a young person to get good medical advice but don't ever tell anybody about it. I'm talking here of people who are going to be accountants or um, I think teachers is still a profession but also the professional man or woman who works in business, anybody, that is, who is working at a certain intellectual level.