Harry’ I don’t talk about it that much. My brother, I never talk about it to him. My parents really I don’t really talk about it to them, because well I choose not to, and I’m sure they don’t really want to hear about it, ‘cos it’s just as upsetting to them as it is to me. Even more so really I should think. ‘Cos I’m sure my mum when she or my dad when they’ve come into my room and they’ve seen me having a seizure, God knows what they think really.

So is that why you prefer not to talk about it an awful lot. Is that if you find it upsetting?

Harry’ Well I get carried away and talk a lot about it, and I think about it.

Mum’ It doesn’t make it any different.

Harry’ Yes it’s what I’m saying, it doesn’t make any difference it, like it won’t stop anything.

Harry’ I was told about the side effects of coming off the medications, ‘cos he was gonna take me, he was taking me off this medication saying like, ‘I warn you though that this could actually kill you, this could actually’

Mum’ Cause a fit that won’t stop [status epilepticus].

Harry’ ‘Cause you this fit that won’t stop. you know like you might, you could’ and then I would say well of course you’d ask the questions, ‘What happens in the fit?’ And he said, ‘Well you could die, you could be paralysed, you could do this, you could do this, you could do this.

Mum’ Very brutal wasn’t it?

Harry’ Which was, and like he just kept a stern look on his face, serious look on his face, and he didn’t stop to say, ‘Well I don’t, I shouldn’t imagine this wouldn’t happen. And he gave me, he just put me on the spot and said, ‘Okay do you want to come off your tablets, yes or no?’

Mum’ You did, didn’t you?

Harry’ I did come off them, I did have some bad fits, which like basically I did actually like lose quite a lot of strength on the one side of my body for a while.

Mum’ You had to have diazepam to stop it.

Harry’ Yeah, my consultant is very good now. He’s a nice guy, he’s reassuring, he’s realistic as well.

Mum’ And you feel confident, we feel all confident.

Harry’ I can trust him and I feel confident about what he says and I take his advice any day. I’ve always actually been like that ‘cos, there’s quite a few people who sometimes think they know better than their doctor, but I don’t, I do what the doctor says within reason really.

Mum’ He’s been the best overall I think.

Harry’ Yeah, my doctor, my consultant now, he is a very good, very good doctor. He’s actually changed my life really.

What do you mean?

Mum’ Yeah, he has, he’s the only one.

Harry’ He’s well, He’s stopped me having seizures really at the moment and I’ve gone to him and asked him questions. I remember one time I wanted to ask him about a personal question, and I asked is it okay if my parents aren’t there, he just said ‘right out’ and he just told my parents.

Mum’ He’s been great.

Harry’ Told my parents to go, like I’m sorry you’ve got to go, and I need to talk to him on my own.

Mum’ Yeah, and then he sent you out.

Harry’ Yeah, and then he sent me out to talk to my parents. But he’s a nice guy. I think it’s he, cos unlike all, most doctors just put, I think they put you on a drug and they don’t think hang on a sec, what’s this gonna do to this guy, what’s this gonna prevent him doing, what’s this gonna be like on his school work, but my doctor he, you know like’

Mum’ He’s always (willing) to help.

Harry’ He’s willing to wait you know, like till after my exams to. I’m gonna come off one of my drugs and unlike the doctors whod say right I’m gonna do this, and he’d go, he said, like ‘when do you want to do it?’ And he’s asked me the questions and he’s asked me what I want to do. And I think there’s not enough out there who do ask those kind of questions.

Mum’ But also he’s explained everything hasn’t he?

Harry’ He’s also said to me and like that he’s, ‘cos he looks at me as a basically a young lad who wants to go out and enjoy himself, and he understands that.

Harry’ When I went to the epilepsy clinic, that made me ten times more aware and ten times more scared as well. ‘Cos they brought prospects of operations in and like risks of that, and which scared me a lot. I found more about sort of side effects of tablets, which made me more paranoid about the side effects, which brought the side effects on more. Which was annoying, I wish they’d never shown me some of the stuff that they showed me, yeah. And also I’d never seen myself have a fit before and they showed me a video of myself having a fit, and that upset me quite a bit. And I hadn’t like cried in years, but when I saw that I was really crying.

So you were saying that the information that they were giving you about the risks and things like that, you’d actually would have chosen not to know?

Harry’ No, but, I came all in one big’

Mum’ It was a learning curve for you really wasn’t it?

Harry’ It was more than that, it was more than a learning curve, I think it was too much really. ‘Cos they told you about the million to one side effects, but they didn’t say like that million to one thing is still a scary thought in your head when you’re trying to sleep at night.

Mum’ Some of it was quite brutal wasn’t it? For all of us, we came home and…

Harry’ Yeah there was one doctor told me of how I could die and stuff.

Mum’ Yeah, he was very brutal.

Harry’ He was actually very, I think he was worried about himself, more than upsetting me, and he sent me off to my room scared to death.

Mum’ And he sent us home the same way.

Harry’ He sent my parents home saying, with the thought that I could die. So I could easily, what did he say, he said’

Mum’ Oh it was terrible really. I think he just completely gave us all the negative issues, without the odds of it and I don’t know whether it’s a legal requirement covering themselves or what it was, but I nearly collapsed when I got home to be honest, and we’d had to leave him there. They tell you all this and then you’re 100 miles away.

Harry’ I was scared.

Mum’ That was one of the lowest points ever I think.

Harry’ I was restricted from doing certain things like riding, maybe riding a bike or just you know like I’m sure there are things you can imagine, but I didn’t really know I was missing out until I got a bit older, and when I was about, say about 16, that’s when I started to miss things and realise that I was missing out on some things. I wasn’t really allowed to go out anywhere on my own, always had to have someone with me, I’d, I didn’t really understand that, I thought I only really realised that don’t know what the word is really.

Mum’ Restricted?

Harry’ Yeah I was restricted but I thought I was just over.

Mum’ Overprotective parents?

Harry’ Overprotective parents really. But you know I took, it took really until I was about say 19 probably to realise that they were just doing it for my own good really. And to understand, understand them. Because when I was 18 I started having much bigger fits, much worse fits and I did end up hurting myself a few times, and that really woke me up to how the epilepsy is actually dangerous, it can be a dangerous thing to have. And certain restrictions are right, rightfully imposed upon people.

Harry’ It [bullying] did upset me, I think it made me angry and I have a lot of hatred towards people. It did actually change me really I think.
Mum’ It was hard to deal with wasn’t it?
Harry’Yeah andit changed me.

In what way do you think?

Harry’Just towards those kind of people. I’ve got a lot of hatred towards them. And I’m not a nasty person or anything, but’

Mum’ I think it took a lot of your confidence away didn’t it, as well?
Harry’ Yeah it did take a bit, well, at that time it did, but I’ve got my confidence back.
Mum’ It took a lot of the laughter out of you. The fun out of you didn’t it? Knocked it out of you ‘cos you were so upset.
Harry’ Yeah I didn’t like’ because I went to schools before that and no one had ever bullied me over my epilepsy or anything before, but just the fact that they did, really, and I’d never experienced it before, got to me.
Mum’ Cruel wasn’t it?
Harry’ Yeah, and also I don’t think the teachers understood when I would lash out at them, for them saying, they’d say like, ‘You can’t hit someone for you know just calling you a name or something. And I’d get in trouble. And I don’t think they understood you know.
Mum’ They didn’t see what they were doing really half the time.
Harry’ No they didn’t see reallywhat they’re doing like and how hurtful it could be, to say things like that.

One of the big fears that I had when I was having these big fits is what if I have some, one fit, ‘cos these fits are usually dangerous in the sense that they’re dangerous to you, your brain can’t take it so, ‘cos your brain can only take so much. And I was worried that one day I would wake up and I wouldn’t be able to walk or, I would, or I might not wake up or, wake up as a you know a vegetable basically. And I wasn’t, wasn’t afraid of dying really, I was afraid of that because I always thought if I have a seizure and I die I don’t know about it or I’m in a wheelchair or I don’t want my life ruined by it.

Harry’ Basically when my epilepsy was at its worst my life was hell. I would wake up at day assuming I was going to have a seizure.
Mum’ We’d be lying in bed waiting for it happen, doors open, pillows on the floor, couldn’t sleep.
Harry’ I would actually have to sleep with pillows on the floor, had to move all my tables around because I would bang my head a few times.
Mum’ We’ve had you on a mattress in our room haven’t we?
Harry’ Yeah, I’ve had to sleep in my parent’s room on the floor sometimes.
Mum’ You’re just always on edge, always constantly on a knife edge with it.
Harry’ That was it yeah. We were just waiting for it to happen. And it was like going over the top really, you just waiting, you don’t want it to happen quick to get it over and done with but you’re still, you’re waiting, you’re anxious for it to just you know like’
Mum’ Get it over
Harry’ And I was always, like if a bit of light was shining in, I was quite’ paranoid wasn’t the word because often I was right it did lead to a seizure. But when I didn’t, like the light it was shining, I was like, ‘I don’t like this light, shut the curtains quickly. But I was actually right to do that like ‘cos the slightest bit of light I didn’t like would lead to a fit. I would just get so upset when I had a bad seizure ‘cos it would take me out of college and I loved college really. I loved going to college this one, it’s one of my favourite things to do really.
Mum’ And wouldn’t be able to go anywhere without being on edge.
Harry’ And I would occasionally feel a bit guilty or like my parents couldn’t go out sometimes.
Could you just describe what your life was like?
Harry’ Well I was an 18, 19 year old who couldn’t walk down the paper shop on my own. I couldn’t walk my dog. I couldn’t, I couldn’t do anything really.
Mum’ You couldn’t use the bus ‘cos you couldn’t use public transport.
Harry’ No, I couldn’t use the bus ‘cos I had a seizure on the bus, and I got off and I was like wandering around the dual carriageway.
Mum’ He didn’t get off at the stop did you, and I had to get the car out and chase him up the dual carriageway.
Harry’ That was very scary a couple of hours after it thinking what could’ve happened, yeah. Also one of the big fears that I had when I was having these big fits is what if I have some, is it one fit, ‘cos these fits are usually dangerous in the sense that they’re dangerous to you, your brain can’t take it so, ‘cos your brain can only take so much. And I was worried that one day I would wake up and I wouldn’t be able to walk or, I would wake up as a you know.
Mum’ Cabbage.
Harry’ A vegetable basically. And I wasn’t afraid of dying really, I was afraid of that because I always thought if I have a seizure and I die I don’t know about it, that’s it, but if I’m in a wheelchair or I don’t want my life ruined by it.

I didn’t really know I’d had fits or seizures, whatever you like to call them, and I guess, when I was 12 I started to understand that what it was, but I never really considered myself different from anyone else. My friends, like when I was younger they, no it didn’t seem to bother them, seems like most people were interested more than scared and really I think there was never any problems when I was younger.

My friends have been good and they have helped me when I’ve been ill. And they’ve called, called like call, you know call people to help me. And they’ve never left me or anything. But it also emphasises the fact that you, I think that you should, can’t, shouldn’t really be on your own if you’ve got epilepsy, in case you did have a seizure. When I have been on my own a couple of times, one of my first big fits I was on my own, at a bus stop and put me in hospital for a few days because I had a big fit and I broke all, I broke my nose and smashed all my face up, and I just woke up in hospital, and I didn’t have anyone to help me and the problem is people thought I was actually a drug addict someone and they didn’t know at all.

Harry’ I’ve always loved aeroplanes since I was young. and when I was ten, ten was my big, my first big birthday,

Mum’ Double figures.

Harry’ Yeah, my first double figure birthday and my godfather he knows I like planes, he bought me for my present my first ever flying lesson and took me up and I had a lesson I think it was it [place name]. Well it was airfield [place name] and I had my first lesson. And I had a couple more after that, I even on one of them I landed the plane which I was quite impressed. Yeah, I didn’t even think about having epilepsy when I did that it was just the fact that I was only 11 and I did that.

Mum’ Looped the loop and was sick everywhere.

Harry’ Yeah, I went upside down and I threw up everywhere.