Zoe - Interview 38

Age at interview: 22

Age at diagnosis: 16

Brief Outline: Zo' was diagnosed with epilepsy when she was 16. She is currently on Tegretol Retard (carbamazepine) and her seizures are fairly well controlled.

Background: Zo' is 22 and a student and an artist. She is single and lives on her own. Ethnic background / nationality' White European.

More about me...

Zoë is 22 and a full-time student and an artist. She had her first seizure when she was 16. As the response from NHS was very slow, Zoë went over to the US to stay with distant relatives to get all the medical tests done over there. First, Zoë was told she had "a seizure disorder" and further tests confirmed that she had a small cyst in her frontal left lobe which caused epilepsy. She was first put on Keppra (levetiracetam) which left her "half-conscious", "in a daze" and in a wheelchair. She was then changed onto Tegretol (carbamazepine) and now she is on Tegretol Retard (carbamazepine). Her seizures are fairly well controlled now.

Zoë says being diagnosed with epilepsy was a major "psychological blow", "a drama that changed my life". Zoë says she was in denial for a long time, just "locking the epilepsy into a closet", wanting to be the same as everybody else and the same she had always been before. When Zoë got back to the UK to do her A-levels, she noticed she wasn't the same student anymore. She could no longer cope with her studies and had to take some time off. After this time, Zoë applied and got onto a Literature course at university. However, she felt she could not cope with a literary degree "as I had always foreseen" and she left the course. This was really hard for Zoë as words had always been her "passion". However, Zoë decided to do a BA in the visual arts which has suited for her wonderfully and helped her “regain something of my former self”.

Zoë has experienced periods of depression over the years, even quite recently. She says she wants to avoid conventional medicine "at all costs" and has researched complementary treatments. Zoë has found great help through herbalism; she takes a herbal tonic daily which has made a huge improvement to her mental and physical wellbeing. She is also waiting for an appointment at a homeopathic hospital.

Zoë's major concern is loss of memory and long-term effects of medications. She says she has very vague memories of the time before her diagnosis and no memories of her childhood. She says this might be due to the condition itself, its psychological repercussions or the epilepsy medication, not helped by the fact that she has limited family contacts. 

A few months before the interview Zoë decided to take a more proactive approach in regards to epilepsy and she says she now has "a will to live and succeed again". Zoë lives on her own - she describes herself as "a solitary soul". She enjoys art and travelling and her plans are to finish her BA in Art, then do an MA and eventually hopefully obtain a residency at the British School of Rome.

Zoe is very concerned about her long-term memory and says she has no memory of her childhood. She thinks this is caused by her epilepsy as well as the medication for it.

How do I describe my memory problems' it's not immediate, it's not short term, it's not as though I forget where I've put my glasses or what I'm doing next week, it's memory of things past. This is part of the shadow that I live in, I say looking back to the time when I was 16, it's purely a few incoherent details I can offer, but memory to the whole of my life past is in a shadow, it's intangible, I don't remember things like everybody else does. And again, an issue like the depression, I ask for the memory, is this a result of the condition, or of the medication in response to the condition? I've, I've done a bit of research, very cursorily myself into if they say that the only point of irregularity inactive, on my own scans. I mean it was my looking into well what region of the brain this is, what have they established, what qualities have they established to that part of the brain, is this the issue at hand. And it's these sorts of deeper questions that I would wish to bring to the neurologist, and really pursue because, yes I can live without a past, but it makes things difficult looking into the future when you have no reference point on which to ground yourself. It is a terrible issue for me.

Do you feel that describes your life that you are 'living without a past'?

Quite, yes. Yes. I can't put a finger on it.

Is that from the time that the seizures started or does it extend already beyond that when you were smaller?

I have no childhood.
 

Zoe felt the medication dulled all her senses, like 'living in a cloud'. She also lost her appetite, felt very weak, and had to be put on a lower dose.

It's just the medication, the Keppra (levetiracetam) that I most objected to. I mean my body as well obviously. And yes dosage has been something I've always questioned. When they first decide the dose of course, it's all very tentative, and they'd rather have too much then to keep them under control, maybe bring it down. I think it was a couple of times in years to come that I approached my GP and I said, 'Please, please put me on a smaller dosage.' And in fact it's through the GP that I'm now on Tegretol Retard (carbamazepine), to allow the medication to have its duration throughout the day. I felt that with this one strong dose in the morning this is the feeling that I've had, that it, it was sort of like a wet wool blanket on you and it's a heavy weight that, and it was under that means that I felt that I couldn't function. That I couldn't think clearly, that I couldn't perform. And it still is, I'm on a relatively small dosage now, but it still causes me to question because I have had difficulties as I never had before, in my academic writing. I used to be a prolific writer. I think of course every anti-convalescent medication must be, have certain suppressive qualities, yes, that's the nature of it. But yes it was to what and where, and to what extent. So it's with that in mind that I did ask my GP to lower it, at several stages.

Yeah, you said the side effects from Keppra were very very severe. Can you tell me a bit more about those?

Oh, again, very cloudy because I was in the middle of a cloud. I can almost, I've taken myself back to that time, I can almost see myself not being able to see. It was like a morphemic state, it is but not, not nice at all [laugh]. For God's sake no, it felt supremely suppressive yes, in a negative way. I felt weighed upon by this, all of my senses would diminish of course my sight, I had no interest in food, I don't remember eating at all. It felt as though I had no function over my physical body, my mobile limbs, I think yes my legs were so weak, that I'd collapse if I didn't have some sort of support. And I was sleeping, sleeping for the better part of the day. And I say, no I can't continue with this. That's as far as I can remember.
 

After being diagnosed with epilepsy, Zoe found studying harder. She says for a while she was in denial about her epilepsy and felt 'like a failure'.

I returned to England, it was a great relief, the thought to start my new term at my A' levels. Again I don't really remember much of the circumstances but I know it was a very difficult term. In the way that I was working, I felt that I wasn't' the same student that I had been. That I wasn't able to work the way that I had been, it seemed to me. And I question to this day how much of that was more of the balance between the psychological blow of finding I'm an epileptic, disabled, as it's only until recently that I've come to terms with these as terms that are applied to me. For many years I was in denial, I'm like every other human being, it's not an issue, it's something you lock in the closet, you put it under the table, you sweep it under the rug, it's not relevant, it's not here. But if something had obviously changed yes I wasn't able to cope with my studies anymore which was the most terrifying blow of all. And because of that I had to have a period out, which back then I suppose it did feel like a failure.
 

In the past, Zoe didn't tell people who she lived with about her epilepsy because she didn't want to be labelled.

I've been very naughty in the past and I haven't sort of informed the people I'm living with [laughs]. Which is why it came as the greatest shock to them if something did happen. It took me a very long time to even come out quietly, a casual hint, not sort of coming up to them, greeting hands, 'Hello, yes we're going to be living together, this is my label, I'm an epileptic.' 
 

Zoe's confidence has grown. She no longer feels 'limited' and now feels she can grasp the future 'like anybody else'.

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.

Zoe describes what living with depression is like for her.

I'm certain as well that a large part of it has to do with my own imbalanced psyche. It's, it gets very very dark indeed. I crawl into a little hole, a very slippery hole [laugh] and I can't get out. I've turned very reclusive, I can't cope with life outside, it's all outside of me, or people. I can just barely cope with basic life activities, just stay alive, sleep, eat, breathe, it came to that by this, this past spring, it was very bad indeed. 

And to try to be sustaining a degree at the same time, yes it made things very difficult. My studies were very much affected, and I wasn't able to paint. Tragic, tragic indeed. I was late on some written work, and actually that, that has been an issue. As I say, oh, yes of course' As I say clarity of thought, exactly that, that is the issue, that was the issue, it's slowly coming back, would you believe it.

Zoe has been 'astounded' by the difference herbalism has made for her.

Herbalism is all about nourishing, nourishing the body, nourishing the tissues, which of course means the greatest of the system, the most intricate system of tissues in the body is the brain. So he's developed for me a tonic, a personal tonic that is intended to nourish my nervous system and yes it took, I mean different herbs work at different paces, but it took a fortnight, three weeks or so where I was astounded at the difference it made that, I realised that I don't have to be forever sitting on the threshold and consciously aware that at any moment at any time. I'm stable, I call myself stabilised now as far as the seizure concerns go. And I'm pleased, I'm pleased to no end, this shows that there is a promise and I realise that, no, now is not the time, I know I can't yet take myself off the tegretol, but perhaps, with, as the future comes, we'll take it as it comes.

Can you tell me a little bit more about the herbalism. How does it work? Is it a liquid, or capsules that you take? And is it a course, do you take it all the time?

Yes, indeed I take it regularly now. It's a tincture, it's made from, it is a liquid that you take 5mls, thrice a day before meals. Yes, it's the absolute condensed essence of magic, the power that is contained in these herbs. Yes, it's been know for years sort of put aside as soon as drugs and chemists came in, but it returns with a force now. Yes, could I tell you really what went into it; it's the herbalist who knows. Of course they know these herbs that best benefit the nervous side of things, the nervous system.

Zoe wants to avoid conventional medicine and take a 'proactive' approach to her life. She is waiting for an appointment at a homeopathic hospital.

Other than, than begging my GPs for like any information, I haven't looked for it, really. I suppose because I was still in denial, but I' it was, yes it was in this past year that I've been more proactive about doing something about it, about asking these questions, about seeing them, perhaps seeing the neurologist again. The actual path that I've taken, I've I'm trying to again avoid conventional medicine as much as I can, I'm going on the alternative route. I wanted to pursue homeopathy and to see what they have to say about epilepsy, I mean, and this was at first with a grand wish and intention of taking myself somehow off of the Tegretol, tentatively because of course one must be very careful, about this, about these things. But, I found via word of mouth a specialist of homeopathy, yes trained in conventional medicine who does work with the neurological side of it and I've yet to see her, I've waited about three months for a NHS referral to the Homeopathic hospital, I've yet to have my appointment, it's coming up shortly.
 

Zoe lists benefits of a herbal tonic she takes: feeling more stable, having clearer thoughts and being more attuned to her feelings.

How would you describe the main changes [of herbalism]?

Um, I would say being stable. Not having these concerns, I mean, I still become aware, and I'm pleased about that now because, as I say it again, for these years that I was rather denying that anything had happened, anything had changed. I suppose in essence my conscious self had closed down, closed down to these changes, to my physical self, but reconciling myself to this psychologically has opened myself to be aware of these things physically. Such that I am more attuned to my status at any time, to what's going on. And yes when still, I occasionally have, I wouldn't say so much an aura, as just becoming heightened senses, sensory aware, and I just accept it quietly and for the most part it doesn't manifest into anything, which is good.
 

Zoe changed courses because she felt she couldn't 'live up to the demands' of that degree. She enjoys the new course and now feels she can 'succeed in a new way'.

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.
 

The 'psychological blow' of being diagnosed with epilepsy, together with her personality, made Zoe depressed.

To what extent do you feel that epilepsy diagnosis and everything that came with it, was the cause of depression or do you think it was only that? Do you think that was the cause of your depression?

That's a very good question. And one that in my own case I can't really extract the causes of it. I would say that in my years before I was diagnosed, it seems so so simple looking back what is it, as a teenager, at that time' No I did feel life very deeply and things affected me and I know that before the evidence of my epilepsy ever arose I was inclined that way, towards a depressive nature. But certainly I say again the psychological blow that the epilepsy brought whereas life had been open to me before I was very much one of will, and I was going out to get the world and I was going to do it, I was able, I was able and active, in the mind and in the spirit, and it just felt as though this diagnosis had, again something I didn't admit to myself, that it had killed something in me [laugh]. Which is why I say it's only now that I'm able to find that there's a new life to be had. I've been reborn [laugh].

What do you think has helped you to get through it?

Time. Time quite largely. I should've made more of support. I did attend an epilepsy support group once this past spring, very late, well I had been enduring all of this very much alone, very much alone because I don't have much family support, much friends support. I'm a solitary soul, and yes this is why I throw myself into depression, I suppose.