I had this interview at one of the universities I’d been offered a place at. I went for the interview, one of my main concerns was sort of like, ‘I have epilepsy, am I gonna be okay?’ ‘Cos I knew that I had to go for a health check and I was just like, ‘Oh god I hope it’s all gonna be alright. So I asked at the interview and they were like, ‘Oh you’ll have to go for a health check, you know so we can’t really say anything but as far as we’re concerned we’re happy to offer you a place. I was like, ‘Yes’ and it’s quite nice actually because even though there’s all this gone on, it sort of like made a really good reason to go to it, ‘Why do you want to become a nurse?’ And I just had all this like, so I said, ‘I feel like I need to give something back, I feel like you know there’s a lot of nurses out there that don’t really know, are not very empathetic, and I just feel like I really want to make a difference and I feel like I could understand how people feel.

I was like, ‘I would really want to go and specialise in epilepsy and, and ‘cos I think it would be really great to sort of like pass this information back to people who don’t really understand what’s going on. It would’ve helped me I know when I was going through everything. They were just like yeah, we’ll definitely take you on; it’s great, all from our end. The day came for my medical, I went for the medical, discussed it with the doctor, and he says, ‘cos I’d filled out the form and had everything written up before this episode where I’d had my last fit. Where I hadn’t like had a fit in a while and he asked me, he says, ‘So is this still the status then? You haven’t had a fit in a while?’ And I just, you know I was just thinking on the train up there, thinking should I say something, or should I lie, ‘cos I know it’s gonna affect my chances but I was honest and I said, ‘Yeah, actually it’s really sad because I had one fit the other week but it was under the weirdest circumstances and it was probably brought on by something quite stressful. And he was just like, ‘I’m really really sorry, but I can’t actually say,’ he says, ‘I’m not gonna say that we’re not gonna allow you on the course,’ he says, ‘It’s just very difficult, you have to be pretty well controlled before we let you on the course. He says, ‘What I reckon you should do is go back to your neurologist and say you know like I’m on this dose, but I need to be totally controlled because I still have the occasional seizure.

Occupational Health check came and she was like, ‘Oh it’s got to be a year before you were. I think it had been like eight months or so, from when it was December, it was March that I’d had the last fit and it was in the December I was going, going for my final Occupational Health check, before I was starting the course in January. And they said oh you actually need to be seizure free for a year. Which was like, ‘Oh here we go again. And I said, well it’s nearly a year [laughs]. And she was like, do you get a warning beforehand? And things like that. ‘Oh yeah I do, quite, every single time. Yeah like funny hand movements. And she was just like, ‘That’s a plus. Because at least you can get yourself somewhere safe so if you’re working on a ward or something. I said, ‘Oh yeah, yeah definitely, I do that anyway. She said, ‘You know your triggers’ and she said, ‘You seem like you’ve become quite an expert at it,’ and I was like, ‘Yes, I guess I have actually.”

So, I did go and see the disability co-ordinator and I did apply for my disabled students’ allowance, and I did get that, and I did get the swanky computer and the nice posh chair. And they did things as well that I didn’t even know that they would do, so they did things like, they gave me a huge book allowance, so I could buy all my books, so I didn’t have to go the library. Because of the medications that I took, sometimes I’d be really really tired during the day but then be like wide awake at night, but then the library wasn’t open [laughs]. And I couldn’t study when I was able to study, or you know if I’d had a fit and that had wiped out a day, you know I still needed to catch up on the work so this huge book allowance was nice.

And they gave me a librarian to work for me, not full time, I didn’t do that much work, but she would, you know I would just send her like my shopping list of all the articles, the books that I needed, she would print and copy you know whatever, get a pile of them. So I didn’t have to waste time accessing things, I could then maximise the energy that I had to do the proper work because they couldn’t pay somebody to do the reading and the thinking for me unfortunately, they couldn’t do that so that was the bit that I needed to do. So pretty much getting other people to take care of everything else meant that you know I could really focus on doing some really brilliant research [laughs].

Then I applied to [name of university], I came back, my hope was to pick up again my academic career, where I had left off. I had thought in awful powers again yeah, starting my degree in literature. But after a very difficult first term, I could see, I don’t know what I expected, I could see it wasn’t going to happen. It felt that my academic performance was not as it had been, that I just, I couldn’t live up to the demands of a full on literature degree. So thus my conversion to the visual arts.

I express myself not through words which are not so adept as had once been my passion, yes, so I started again, and it took a lot to admit that to myself. That I for whatever reason I couldn’t. I couldn’t fulfill the path that I had always foreseen, but by a roundabout way I found one that’s very well intended for me. So we hope, and it’s only now, I must say I mean, with all of the difficulties that I’m sure we will come to, it’s only now that I’m coming to regain something of my former self [small laughter] that I have a will to live and succeed again. Not being unconsciously, subconsciously suppressed, by the condition, all of the drama that went with the condition, all that I had inflicted upon my own mind privately, with the issue of having a disability like epilepsy. But I it’s only in the past few months that I can look now towards a brighter future, and something that can succeed in a new way.

There are two reasons why it’s difficult in the exams and the first reason is, my memory is shocking and it’s difficult to say what I can remember. But I can’t remember people’s birthdays. It’s really bad. I can’t remember when I’m supposed to go out with friends [laughs]. In fact a couple of days ago I was supposed to be going to a cheese and wine evening and someone offered me tickets for a play that I really wanted to see and I’d agreed to go and forgotten I had a cheese and wine evening, even though the person that gave me the tickets gave them to me because she had to go to the same cheese and wine evening [laughs].

But in the exams yes, the memory affects me. But then also there is the fact that under stress I have more seizures. I mean usually day to day my medication completely covers me and I’m fine, but if I’m really, really stressed out like for example I’m just before an exam or you know if something, if I’ve got something really, really important and I’m really stressed out, then I’m much more likely to have a seizure or at least a very strong deja vu which is pre-seizure. So before I was medicated I used to have seizures in the exams all the time. It was pretty much guaranteed, it would be half way through the exam I’d be freaking out and I would have a seizure. And of course I didn’t tell anyone because I thought I was crazy and what do you tell them. Because it’s so much easier now that I can say you know, I have epilepsy, because I know what it is. But before you know what it is you can’t describe it.

My first year exams were three and a half hour closed book papers, four of them, and you didn’t have any, well coursework was minimal, only one subject had a piece of coursework and that was only 20%, the rest of it, and it wasn’t modular either. It was completely linear so you studied all year, and the only assessment you had was this three and a half hour closed book exam. Now that’s pretty tricky when you have epilepsy because a) you can’t guarantee you’re gonna be conscious when the time for the exam is, and secondly the medications that you have to take generically they all pretty much have similar side effects, some of them have weird and wonderful things that you’d never anticipate, you can pretty much guarantee you’re gonna be knackered, you’re gonna be quite dizzy, you’re gonna be sick, you’re not gonna be able to concentrate and you’re memory is gonna be short. So doing three and a half hour closed book papers is a pretty rubbish way of doing any kind of assessment for somebody with that condition.

The university have been really good as well, helped me with everything I needed. There was no real need for me to have extra time in exams or anything, but they give me, they give me rest breaks so if I feel like that, that twitch I’m allowed to just go and sit in this other little room and they pause my exam. So that I don’t, basically I can go and sit somewhere else without worrying about the fact that I’m losing time from my exam which is exactly what I need. So they’re really good about it. Yeah that first term when it first happened, they were good and I suffered in some of my exams for it, and they sort of compensated for that and when it came to the end of the year and then since then they’ve just put me like I said in a room so I can have those rest breaks. Well basically in the first year there was the main, the person that is in charge of all the admin on my course, he had a flat mate that was epileptic, so he was really sort of like he knew, he knew what it was like and helped me a lot. When it came to dealing with the lecturers and the people that might not have been so considerate ‘cos they don’t know, they don’t know the circumstances so, but yeah the university were really good. Really good.

I did struggle during my first year of the course because I was still fitting quite a lot, and I was also had this thing in my head that just because I was going to be unwell quite a lot of the time, I wasn’t just going to be unwell and then study. No, no, that wasn’t the life that I was going to lead, the life I was going to lead was pretty much, party and unwell, I wouldn’t study, which was a really ridiculous attitude to take, quite irresponsible, don’t do that kids. I don’t know, and it was kind of weird as well because part of me really, really appreciated the fact that I was at university because I’d already had it taken away from me, so I was really determined to make the most of it, and not want to stuff it up, and I think that’s why I kind of socialised so very well because I didn’t wanna lose that as well. But I was I think part of me that took quite a long time to realise that it wasn’t going to be taken away from me, ‘cos I think part of me just thought well what’s the point, you know. They’re probably gonna change their mind anyway, so maybe I won’t work quite as hard, but hey it turns out I’m actually just quite good at what I was studying and despite minimum effort being put in, maximum outputs were gained, and I got really good grades, and won awards and that was nice.

But I did it all myself, and I just wouldn’t accept any help and I was really stubborn and I think part of it was because I didn’t want it always to be, ‘Oh well you know [participant’s name] is doing well but she’s got epilepsy, so that means she’s doing really well considering. I didn’t want any kind of special measures taken because I think I wanted to do it despite the epilepsy, and I think I didn’t wanna make a fuss.

I just had to rethink my future as far as the way it had been fixed, as in very fixed in my own mind where it was to go. I mean right now I’ve grown in confidence as enough to be able to think that, now I can grasp the future like anybody else, I feel as though I’m able to live like anybody else, just consciously aware, yes of this epilepsy now, but I don’t feel limited anymore. I don’t feel bound. I feel as though once again, the traveller that I am, the world is open to me and that is where my art will take me. Yes I’m going to finish on this BA in a year’s time, I hope actually to be, I’d love to be accepted into the Prince’s School of Drawing, an intensive year here in London studying. After that some time painting for my own, just to define my directive, just where it is that I’m going with my painting. Of course onto a Masters at some point. I need to research into, into what department it would be, I’m not limited by the boundaries of this country, and eventually I wish to, the British School at Rome, a residency there. But yes it’s the ladder, I’m sort of on the first step of the ladder but I feel as, for the first time in a long time, I feel as though it can be achieved. We can find it.

What’s that been like? What is it like [at college]?

It’s been, I’ve really enjoyed myself because I’ve been at other schools and, since I’ve left school I like this place ‘cos it’s in the countryside and I like stuff to do with nature and like looking after animals and things. I like doing, working on the farm and doing sort of things outside. I have friends in college as well as outside the college as well. Like I have friends in my tutor group and, which I get on well, really well with, and we have like trips out together, which is like good fun to have together really. It’s like you know that, when you have friends that’s a good sort of thing to do and we like sort of going out to places and you know just spending time together really. Like when we’re in college we spend time together, like break times and just talking to each other and asking each other about what’s been going on and just catching up on things.

I’ve done work prep were I’ve done visiting stuff around the community like, if I would leave here, I would know where everything is like the doctors, the hairdressers and stuff like that. And I would know where it is and I would go to it and know how to like make appointments there myself. Like go out in the community and find it, just to like work with, work-prep. I’ve sort of come, I’ve just completed that, you know that and then I’d do on a Tuesday I have like Life Skills.

Okay what’s that then?

It’s where we do stuff, stuff on like healthy eating, like eating healthy things, to like sort of projects on like eating like not too much sort of chocolates, like chocolate and stuff and keep an eye on our weight.

Yeah, yeah things that are good for you.

Like making ourselves healthy meals every day.