When I’d got it and it was all this secondary generalised right central focus temporal I was like well what on earth is all that about? I did have to go and ask a few questions on what on earth some of the stuff meant but it was a relief that at last they had confirmed it. I wasn’t some sort of weirdo that was making it up. They had actually found something at last and where the scar was and why that was causing my memory loss. It was just the jigsaw puzzle kind of came together when it came through and it made a lot more sense for the neurologist. So I think that’s also helped with the consultations as well when you can go and they can say, ‘Yes, I know why now you’re having memory problems because it’s that part of the brain. And they can tell you a lot more information now they know, so it’s not so much up in the air, sitting down, ‘Right I’m still having this problem, what shall we talk about this time?’ Now it’s more, ‘Let’s get down it, and sort it out.

You said you were 14 when you had your first seizure. What happened in all those years of trying to get a diagnosis? Can you describe why it took so long?

Well, there was as I said I had to get to three seizures before they would even investigate it because people do have seizures due to different things like trauma or shock or something like that, just people without epilepsy. So apparently that didn’t take long cause I can’t really remember, it was, a lot of people, a lot of talking to begin with, consultations, what’s happening and people trying to figure out what route to take I suppose, because as it’s not physical they can’t, or there’s not a specific problem like maybe diabetes it is in your blood so its, they know where to go from there, but with something mentally they don’t know. Because there was also phantom epilepsy as well, where people like, where people don’t have it but they think that they do so there’s a lot of investigation at first. Then a lot of brain, then there was brain scans, like MRIs and stuff like that, as I said they didn’t show up anything because it was my scar is not on the surface of my brain so they couldn’t see anything, so as they couldn’t see anything from there and there wasn’t anything specific in my life either like usually it’s something that happened at birth. Now my mother was ill during my pregnancy but there was nothing specifically at birth that would have caused it like umbilical cord round my neck or anything like that. I hadn’t had any blows to the head, so they still don’t know what caused it, so there was also a lot of you know discussion within medical people like, ‘Oh well we don’t really know what’s going on. So there was a lot of, I think there was a lot of things done, a lot of discussion done behind my back really, not about, you know sort of within the medical profession there was a sort of lot of ifs, buts, whys going on.

I actually didn’t, I’m going to admit [laughs], I tried bunking the train basically. I remember this man saying, ‘Can I have your ticket?’ and I said ‘No I haven’t got one can I pay for it?’ and before I could say ‘could I pay for it?’ and I’d said ‘No I haven’t got one,’ I had an absence and I froze and he thought it was the whole teenager ‘I’m not gonna move, I’m not paying for my ticket’ and I completely froze. Then he was sort of shouting at me and I fell on the floor and then he thought it had got even worse, you know I was not going to move. They didn’t move the train and they were like ‘This girl is causing problems,’ and they actually, four of them came and physically carried me off the train and this police officer got involved and it got blown out of proportion. I was absolutely furious cos I was like, ‘How dare you? I was having an absence. And yet again, my sister kind of stepped and afterwards and came and the next day came and spoke to them and actually dealt with it in a very different [laughs] different attitude to me. I was just so furious and it’s yet again that battle of not everyone’s gonna know, they just thought I was being a petulant teenager not paying and not moving and stuff like that but. It’s yet again another, another thing that just happens.

It’s just a constant fight, and hen you’ve also got the benefit side to it. If you’re not at work it’s a game of two halves whether you get accepted for certain benefits and it’s just so frustrating about which one do I go for you sort of go along to the job centre and say, ‘Hey I’m unemployed’, or you could go on job-seekers, or have you got any medical problem, you could go on incapacity benefit, then they turn round and go, ‘Well, you look normal, you can walk around so you’re fine. And it’s like, ‘Well the problem isn’t in my physical appearance, or my physical capability, it’s in my brain. And with that, blooming disability living allowance, now that’s a completely different story, that’s just you’re picked at random for that I swear, it’s absolutely ridiculous. It is very hard to be employment and benefits, it’s constantly a battle. I mean looking to try and maintain the job to getting people yet again to understand what sort of thing. I mean if you’re sitting in an interview and you turn round to someone and say, ‘I have seizures, I also have absences where I hallucinate, will you please employ me?’ They’re gonna, they run a mile, which is understandable, ‘cos anyone who doesn’t understand what it is, that’s quite terrifying to someone. Especially if they’re classed as being responsible for you, they don’t want to know due to this suing culture that we’ve got.

Can you tell me more about the benefits-side, you said that’s difficult issue as well?

Yes, I mean not so much the job seekers’, I mean ‘cos everyone’s entitled to once out of work, but it’s more the disabled one. You always get that question on whatever form you may be filling in, whether it’s for I don’t know for some sort of ticket for a concert or something, ‘Are you disabled?’ I never know what to put down because it’s sort of, ‘Am I?’, it seems to be that you’re disabled when convenient really, when it comes sort of like in certain jobs you’re classed as disabled like you’re not able to drive, therefore you’re disabled. But when it comes to disability allowance well you’re able to walk and go around in a normal way, so you’re not disabled, so it’s sort of when convenient for them really. And I’ve personally applied for a disability living allowance twice. I’m currently applying for it now, and I applied for it when I was a lot younger as well, when I was about 16 or something. When I had actually found out about it to begin with, you have to ask about it cos there is no given information about it. I got turned down due to not being, not being diagnosed so.

I mean it’s just ridiculous that benefit, there is no proper, how can I put it, there seems to be no set goals that you have meet to get it. And if you do meet them but certainly not, I mean, the problem with being epileptic, you’re not so black and white as, ‘Do you have problems in the bath when you’re having a wash?’, ‘Yes I would have problems if I was having a seizure. But maybe tomorrow I might not, but maybe the next day I might. I mean it’s not so easy to answer the questions and to tell people that sort of information cos you just don’t know. And there’s no area for us to slot into, we can’t fit into anything.

I’ve always, I mean I don’t know other women, I don’t know whether it’s either you know or you don’t know really, but I’ve always known that I wanted children. Not at that point, but I do want them later on in life and it was definitely the concern of. You hear certain aspects of, well it’s also common sense I mean, if [laughs], being crude if you think about it as an oven if you’re sort of baking a cake in a shaking oven it’s not gonna work very well. So it’s, it was at the very forefront of mind so I was always wondering about aspects of autism or maybe deformities physically in a baby. Then it was a very big fact of would I actually have children, if there was chances that I would have that, and being female I felt that I had to deal with that at a very young age. Like you shouldn’t have to think about stuff like that because I’ve always been interested in it. I did get told that I can’t remember the exact statistic that, but I did get told that well being epileptic I was at higher risk of having an autistic child, but only I think it was only slightly, but that still brought concern to me. And there was also the fact of have I got what is it, forgotten the word, sorry, you get it through families, hereditary, that’s it, so have I got hereditary epilepsy as well. I mean, the only other person in my family with epilepsy was my father’s sister, and that wasn’t due to anything hereditary, but she had learning difficulties, which she had it as well, and died at a young age so I never actually met her, but that was the only other person.

I found school incredibly hard. It was the fact that people didn’t understand what on earth was going on. I eventually had to leave school early due to it when I was about, well when I had about six months to go, in year 11. I was quite a popular person and well as people know, the popular people are incredibly fickle, and once I’d got epilepsy there was a lot of sort of peer pressure on me sort of drinking and stuff like that, and I couldn’t due to certain, well due to the epilepsy. And there were some certain incidents where I did drink and I’d go into a seizure and my friends found it incredibly stressful, they didn’t understand at all about it, and I did lose all my friends due to it apart from a couple.

I found school incredibly difficult so I did leave, and it was also the memory loss. Because I had a complete blank memory due to it, I forgot like about a year of my life, I just can’t remember it, it never happened in my eyes. People would sort of bully you about it and stuff like that so, it was in my best interest to leave, and then I just came back for exams. I actually, I put in a lot of effort to try and get exams but I did fail and I would put it down to my epilepsy because everything just completely changed. As a young person you don’t really know what it is, I was having a lot of tests, like the brain scans and consultations and people going, ‘Well is it her or is it something going on?’ and it led me to have a lot of behavioural problems ‘cos, before an absence I’d tend to argue, for no reason, and I don’t even know that I’m in the wrong even though I would be. I would have a lot of mood swings and behavioural problems and just my confidence went downhill completely ‘cos obviously sort of when you’re, when things are happening to you that you don’t know what on earth, the hell is happening [laughs] then it’s very difficult.

It’s the initial looking for work, do I tell them? Do I not? If I tell them then I haven’t got anything to hide but if I tell them then I might not even get the job to start with. If I don’t tell them yeah I might get the job but now I have to try and dodge everything around what’s going on in my life, like if I’ve got an appointment, I may have a wedding to go to. Now is that appropriate for work to lie, and specially where it’s not a comfort zone job, like at the moment I’m a student so I don’t really mind what I’m doing, you need to get more career focus you don’t want to be living a lifestyle of having to lie and stuff like that. ‘Cos I’ve been out of school so I have tried finding a career and it was just impossible.

Especially living in this area, it’s not exactly an opportunistic place for young people so, yet again there’s that barrier of where you live and their acceptance, the younger people and stuff like that. Also the barriers being narrowed, ‘What can I do?’ Obviously if you’ve wanted to be a truck driver all your life well all of a sudden that goes flying out the window. I personally, my sights weren’t very high as a child, I wanted to be a teacher, so it wasn’t like a rocket science or anything like that, I just wanted to be a teacher. Now it was, ‘Am I ever going to get through the education?’, I didn’t know whether it was appropriate to work with kids, would I be allowed to work with children, then it was well it was the fact of when I was actually working, it was constantly getting fired, due to me not telling them. All of a sudden I would have like an absence or something like that and it was, it was back to the drawing board constantly. I think one thing that does highly frustrate me because I’m looking for a job now just sort of a weekend job and it’s just the fact that yet again no one understands, like people’s different reactions to you applying for a job and obviously now with our culture of suing, and health and safety that’s made it a lot more difficult for well anyone with a medical problem to get a job. It’s yet again, is it okay for us to employ you, and it’s an incredibly frustrating with stuff like that.

Alcohol when I was younger at school, I had a bad experience with alcohol, I did get drunk and ended up on a hill somewhere having a seizure. So I have, I do drink like I have a casual drink but I don’t think now being older I wouldn’t yet again push my luck with friends or anything, by self inflicting it on myself, by alcohol because I know getting drunk will give me a seizure. I also had another experience where I did get drunk and I didn’t have it then but I had it during my sleep which was even more dangerous, so it’s just not, it’s not worth it, I mean it might be a bit sort of, it’s incredibly tempting when you’re around maybe sort of like a bunch of friends who have got a bit [laughs] you know a bit drunk in the pub or something, not like completely paralytic, but you know happy drunk or something and you’re like, ‘Oh, I can never get there. It’s really annoying and you always have to be the one to pick up the pieces cos you’re not drunk and stuff like that, but, it’s yet again, matter of fact, you can’t do it, so. I’m, I don’t go there.