Epilepsy and Words…

Busy busy week, not had much time to write!

There’s been a lot of talk lately as to how epilepsy should be described. Is it a condition, a disease, a disorder or something else? The International League Against Epilepsy, this month, classified epilepsy as a disease. The new clinical definition states that in medical terms epilepsy is a disease. It chose that term because of the range of health problems it covers and the implications of a long-term presence. ILAE didn’t think describing epilepsy as a disorder quite covers the seriousness of epilepsy. Well, it’s caused a bit of controversy and I, obviously, have an opinion about it too.

Disease means, according to my kindle:

“A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury”

I’ve never felt the need to check disease in a dictionary before because I thought I knew what it meant. I always always always associated the word “disease” with an illness that you could catch. So, I’ve never described my epilepsy as a disease, because you can not catch epilepsy. Having read the description, I now understand why the ILAE would describe epilepsy as such and am also slightly humbled that I don’t know what I think I know about an everyday word. A lesson to be learned there. So my initial bristling at being described as having a disease has subsided, but I doubt I’ll ever be able to call my epilepsy such. I don’t like “disorder” either. To me, that makes me sound dysfunctional and I may well be that in certain aspects of my life…I’ll get to that later, but I don’t think of my epilepsy as a dysfunction. To me, “condition” is the way I describe it. It’s not an illness, although it produces effects that are illness-like….headaches, extreme fatigue, confusion etc.

I suppose if I’ve given disease the kindle treatment, I should do the same for condition.

“The state of something, esp. with regard to its appearance, quality or working order….a person’s or animal’s state of health or physical condition”

Bloomin’ heck, I don’t really like that either now I’ve seen it!

So, what about “disorder”….:

“A state of confusion….a disruption if normal physical or mental functions; a disease or abnormal condition”

Well, that seems a bit more palatable to me. Isn’t it all just splitting hairs though? I mean women have colds, men have flu type thing? It’s all the same but different groups of people describe it differently and one definition makes it appear worse than it is…does it add weight to my argument that me stating I am epileptic is just stating a fact and not that it means I’m defining myself?

My trusty kindle describes epilepsy as a “disorder”. But this all got me thinking again about history. No kindles BC! No dictionaries either really. Just poets, philosophers, physicians, warriors, slaves….So, I’ve been doing a little bit of research into epilepsy and how it was viewed in antiquity and the middle ages.

Lucretius was a Roman poet and philosopher, the following poem is attributed to him and is about his observations of those with the falling sickness (not entirely sure it actually is a poem, but has a poetic feel to it)…:

And, moreover,
Often will someone in a sudden fit
As if by stroke of lightning, tumble down
Before our eyes, and sputter foam, and grunt,
Blither, and twist about with sinews taut,
Gasp up in starts, and weary out his limbs
With tossing around. No marvel, since distract
Through frame by violence of disease…

Confounds, he foams, as if to vomit soul,
As on the salt sea boil the billows round
Under the master might if winds. And now
A groan’s forced out, because his limbs are griped,
But, in the main, because the seeds of voice
Are driven forth and carried in a mass
Outward as by mouth, where they are wont to go,
And have a builded highway. He becomes
Mere fool, since energy of mind and soul
Confounded is, and, as I’ve shown, to-riven,
Asunder thrown, and torn to pieces all
By that same venom. But, again, where cause
Of that disease has faced about, and back
Retreats sharp poison of corrupted frame
Into its shadowy lairs, the man at first
Arises reeling, and gradually comes back
To all his senses and recovers soul.

It sort of describes pretty well what happens and proves that these episodes have been documented for many a century. They didn’t seem to have a definitive word describing epilepsy but there have been many “cures” and “treatments” well before drugs came on the scene!

In the 4th century, Diocles used blood-letting as a treatment. He also prescribed drinking vinegar and sneezing before going to bed! Yes, sneezing! I’ve made the wild assumption that sneezing would purge the body of phlegm and of course an excess of phlegm is not a good thing. Lovely. Praxagoras of Cos, from around the same time as Diocles was apparently a bit of a comedian. He shaved the epileptics head and applied a poultice of vinegar….and he also recommended the holding of one’s breath. My favourite of Praxagoras’ cures however, involved compressing the afflicted parts of the body with various substances, such as the genitals of a seal! Yes, a seal! Parts of the body were also burned and incised. Sounds like a bundle of laughs. I think I’ll take my chances with today’s pharmacology, thank you!

In the early Middle Ages, the “falling sickness” was also known as the “falling evil”. Latin texts from the 7th century say that people called epilepsy “demon” and “lunacy”. Isidorus, the Bishop of Seville lived in the 7th century and he claimed epileptics were often called “lunaticus”. Time moves on and us epileptics are associated with having “ecstasies, raptures and prophetic trances” and were hence thought to be possessed by a supernatural being. The centuries haven’t really been overly kind to the epileptic in terms of description and cure it would seem. It seems, to me anyway, that while in antiquity the disorder was recognised as being a disease, the treatment however wild and fanciful was actually hoped to be a cure; as time moved through the Middle Ages it seemed that epilepsy was no longer viewed as a disorder but as a sign that the afflicted was either a demon in disguise or a lunatic suffering from severe mental issues.

It’s the words that are the crux of the issue. The “falling sickness” is actually a pretty accurate description of what happens and does not suggest a failing of mental faculties. The “falling evil” – different matter altogether. Centuries later and it’s the same thing. There is less attachment in the modern world to an epileptic being some kind of demonically possessed psycho, but the argument is about the perception of what it actually means to have epilepsy.

As an extra thought to all of this, maybe we should all be more mindful of what we say to and about each other. I’ve tried to make light of the subject, but it is actually important. I don’t want to be described as a demonic lunatic because I have epilepsy. If you think I’ve done something that warrants me being described as such, then I’ll guarantee you that it had nothing to do with me having epilepsy.

As a further wee note, I’d like to thank Owsei Temkin for the enlightening text – “The Falling Sickness”.


Epilepsy and Medication….

Yesterday after my last post, my friend asked me about medication; does it/doesn’t it help. Medication is a hard one to talk about. So I apologise for the post so soon after the last one, but if I don’t get this out now, I’m not sure I ever will.

Medical advances since GGG Agnes was a sufferer are quite simply phenomenal. I recognise and acknowledge that. But, that doesn’t make what follows any easier.

I’m not going to name any of the meds that I’ve been on and here are my reasons why. Firstly, every medication, regardless of the illness or condition, has a different effect on every person. Secondly, I may take meds, but I’m not a doctor and not a specialist in the epilepsy of anyone other than my own. Lastly, I do not want to worry anyone that the effect a drug had on me, means they are going to experience the same, if they are on the same drug. That is simply just not the case. I will give an example of this. I am a female in my 40s, of a certain weight, certain height, who doesn’t smoke but does drink alcohol. My good friend has a daughter, S, with epilepsy, who is at primary school, who is a certain height ( but still growing), a certain weight (but still growing), doesn’t smoke and doesn’t drink alcohol. (I didn’t feel the need to check these last 2 facts with her parents but god-knows some kids are up to some wild antics these days!) So, it is hardly feasible to think that the same meds in the same quantities would produce the identical effects in myself and S. So, the caveats in place, here goes.

I began my battle with medication at age 17 and it’s continued for over 2 decades. Sometimes I’ve won the battle, but many times I’ve paid a high price and I think meds have the upper-hand in the war we’re in. Some sufferers are pretty easy to control with meds, some sufferers have part of their brain removed and consequently have an easier time with epilepsy, some sufferers can control their seizures relatively well with diet. I am “hard to control”. Some would say in more ways than one….

One of the hardest tricks with anti-convulsants, as with other meds, is getting the balance right for each individual. This is my story. The first anti-convulsant (a-c) I was prescribed was excellent at reducing my cognitive abilities and for causing damage to my reproductive organs. I was told several years later that, as a teenage girl, I should never have been prescribed them. Anyway, one of the side-effects was that my ability to feel pain was reduced. I could be found washing my hands repetitively under running boiling water, seemingly unaware of what I was doing and apparently unable to feel the consequences. I was in a zombie-like state for much of the time and I didn’t know I shouldn’t feel like that, I’m not even sure I knew I felt like that. I didn’t want to talk about epilepsy, I didn’t understand it and certainly wasn’t going to admit I was scared. I tried to hide it, I’ve never been sure how successful I was at that. Other side effects included weight-gain, increased irritability and terrible headaches. It had no apparent affect on the seizures. That drug, for me, was nasty. For others, it’s a god-send.

Fast-forward a couple of years, a few visits to a&e and a change in location. I was assigned to a new doctor. He was brilliant. He helped me begin to see that the medication I was on, was not the be-all and end-all. He explained to me that there was going to be trial and error getting the a-c balance right. He was the first person that I started to trust and then he moved away. I retreated again. I was on a different a-c by this time. I should maybe explain that many who suffer epilepsy are on a combination of drugs, I myself have only ever taken one type to “manage” my epilepsy. There were still side-effects. The worst for me was the weight gain. Like many I’ve struggled for years with my weight and this made the struggle harder but I had to pick my battles. The drug was “cleaner” than the previous one and after several attempts the amount required for me was found – to a certain extent anyway. What happened was that I started down the route of having seizures approximately every 6 months or so. This kind of reduced the fear that it would happen but it was by no means an exact science.

I stayed on this 6-monthly cycle for a few years. Each episode consisted of 2 seizures several hours apart. This was followed by the need to sleep for around 24 hours and then several weeks to shake the residual lethargy. Then the pattern changed. The episodes became unpredictable and I could no longer rely on fitting twice and then sleeping. The injuries sustained with each episode, to me, seemed to get worse. I have many scars and many chipped teeth. My confidence disappeared. I started to recognise, but not admit to, the depression. I was scared all the time. My partner used to say I was “scared of the day I never saw”. He was right. I still am. The answer at the time was to increase the dosage of the a-c and start experimenting with the omission of caffeine from my life. I should probably point out that at this time and throughout my 20s and early 30s I was teetotal. I’ve been through the removal of caffeine from my life several times for the sake of my epilepsy. In all attempts it has proved to be horrendous for me and positively hellish for those around me. Ultimately, caffeine and alcohol, drugs in their own right, have very little bearing on whether I will or will not have a seizure. So, the dose is upped, my weight is upped, my partner cheated and my confidence plummeted. I mention the cheating because sufferers of epilepsy, or any other condition, aren’t just dealing with their illness, they’re dealing with the other parts of their life too. (It might be worth pointing out that he didn’t cheat because I am an epileptic.)Stress is a factor in most illnesses and conditions. I was very stressed and not sleeping much.

Another episode sees me back in hospital. Restrained, because I tried to take out several paramedics and most of the nursing staff. It took several men to hold me down. The force of adrenalin gives the epileptic tremendous strength, it’s part of what causes the immense fatigue in me. It’s tiring all that jerking and fighting you know! In order to try to stop the almost constant fits I’d been administered another a-c, unfortunately this a-c provokes fits in me and things got worse. I tried to leave the hospital, yep you’ve guessed it, in one of those modesty gowns. I fought hard with the male nurse who tried to stop me and my escape attempt was foiled when I had another fit at the top of the concrete stairs that were to be my route to freedom. I didn’t stay at the stop of the stairs and the subsequent bruising was awesome. It could have been worse.

So, another drug, another protracted battle to get a dose that helped, I won’t say controlled because I remain, to this day, hard to handle. The depression, the fear, the weight – all on the up. The confidence plummeting and the acting that everything is ok being perfected. At least that’s what I thought. The veneer is wearing thin. Others saw that. I didn’t. More episodes followed, more trips to casualty, a different consultant, less friends but better ones. I didn’t want to take drugs anymore. I didn’t see the point. Were they reducing the number of fits or were they doing nothing at all in terms of my epilepsy? It was something I had to find out. The fits were becoming extremely irregular and more violent. I longed for the days when I could predict the pattern of the episode and knew it was only going to be every 6- months or so. I’m forever grateful that I don’t have to go through this multiple times a day, every day.

I slowly reduced the dose, my gp supported me, my consultant thought I was mad. However, it was my choice and I had to know. The result was that my fits increased. I knew then that the meds helped but didn’t completely control me. The depth of the darkness that followed that was simply horrendous. I finally admitted that I felt the depression but only to my gp. I couldn’t sleep and I wasn’t a functioning member of society. I withdrew from everything that I could and did the bare minimum to get by. I hated myself. It was 2 years after that, that I was persuaded to try an anti-depressant. I guess I’ll get to that later.

So, fast forward again. After the latest batch of fits before Christmas, it’s still being decided what to do about the meds. I’m waiting for another EEG to see what’s going on with my brain software. Then there will be another consultation as to what to do. There are 3 options. Do nothing; increase the dose; withdraw from meds. More decisions to be made, but I guess I’ll get to that later…Most epileptics I know have gone through a battle with medication. Some battles prove to be significantly worse than others. Unfortunately, the brain isn’t ready to give up all it’s secrets just yet, the genes that are involved in most cases are almost being pinpointed, but not quite. But ultimately, finding a suitable drug-regimen is not a simple one-size fits all. It is trial and error. As with life in general, some trials are more brutal than others and some errors have more significant consequences.

So, you have the basic outline of the battle. I’ve missed some of the parts out and compressed others. The war is dirty, played out in the confines of my brain and the consequences aired in public.


Epilepsy and Agnes….

Agnes was my great, great Grandmother. GGG Agnes was married with 5 children. She died in 1914 during a seizure. Does that mean I’ll go the same way? Not at all. What it does mean is that I am/was genetically pre-disposed to having epilepsy. I have the epilepsy gene if you like. What I did wonder is what having epilepsy was like for her. So, I did what any self-respecting researcher does and asked google.

Oh that was interesting. On an American site I came across the Harry Laughlin project at the Eugenics Record Office. In 1914, he published a Model Eugenical Sterilization Law that proposed to authorize sterilization of the “socially inadequate” – people supported in institutions or “maintained wholly or in part by public expense. The law encompassed the “feebleminded, insane, criminalistic, epileptic, inebriate, diseased, blind, deaf; deformed; and dependent” – including “orphans, ne’er-do-wells, tramps, the homeless and paupers.” By the time the Model Law was published in 1914, twelve states had enacted sterilization laws. I wasn’t sure I wanted to continue researching at that point so I think I’ll probably come back to it later. But, what I will say is that there are many tomes out there to read and study and get a background on the condition. Maybe I can become my very own epileptologist.

So, I was quite happily at work one morning. I used to work with pensions, although that seems like another life time ago. Anyway, I had a seizure. Now this was my very early 20s and I don’t really remember too much about it. Apparently, the big boss came over to me and tried to calm me down and he made the mistake of calling me “doll”. I told him, in no uncertain terms and with a few expletives thrown in for good measure, never to call me that again……he didn’t. Anyway, I was taken to hospital. I have no recollection of being there at all. I disappeared. Literally and, at that time, figuratively too. I reappeared at work a few hours later, minus my coat, my shoes, my bag and the friend who had come with me to the hospital. It turned out that the hospital discharged me, but didn’t tell me anyone was waiting for me, and I had a mild head injury. So, when I was told I could go, apparently that’s exactly what I did. I walked the 1.5 miles back to work from hospital. I don’t remember that walk at all. My brother and another friend were searching for me by car when they found out from my, by that time, frantic friend that I was not where I was meant to be. I don’t know how I crossed the roads. I don’t know how I knew where work was. I appeared back at work, announced I was tired, went to the bathroom and tried to take my clothes off so I could lie down there on the floor and go to sleep. Then I had another fit and back to hospital for me. My Dad was furious. My brother was furious. My friend was deeply upset. My workmates were worried. I was oblivious. My Dad wrote angry letters to the hospital. They wrote apologetic letters back. I retreated into myself again. I tried to pretend everything was fine, but it wasn’t.

At that time, I don’t think I realised that I was putting on an act for everyone. I don’t think that filtered through to me until a long time afterwards when I started accepting that I was suffering from depression and that the depths of the depression were linked to my epilepsy. I wonder how it was for GGG Agnes. I wonder what she knew about epilepsy. I wonder if she accepted it, the way I have and decided not to let it rule her life, like I have. I wonder how often she had episodes. I wonder if the one that killed her was her first as well as her last….According to her death certificate, she was alone when she died. I wonder if she knew it was coming. I wonder if she had auras. I wonder what she was doing. So much wondering, so few answers. The autopsy that was carried out on her body, confirmed that the cause of death was asphyxia during an epileptic fit. This made me wonder if she even knew she had epilepsy. Was it a family secret? A dirty little secret hidden away until I came along. Actually nobody told me that relatives had suffered with epilepsy. My parents knew but chose not to share it with me. I only found out because I started tracing my family tree. I’ve never asked them why they didn’t tell me. It would have been useful to tell the doctors, but I’m sure they had their reasons.

My friends are the best in the world and I’ve been exceptionally lucky with significant others’ too. One boyfriend picked me up and put me back together more times than I can mention. He coped when I had a seizure in the front seat of the car while he was driving, he pulled me naked out of the bathroom when I pitched a fit in the shower (he later admitted that watching me fit naked was one of the funniest things he’d ever witnessed – we laughed a lot about that), he picked me up from work when I had episodes and he signed waivers so I didn’t have to go to hospital. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me. A few years later, I was in London one weekend visiting with another significant-other. I had a seizure in his bedsit. He didn’t panic, he didn’t cart me off to hospital. He stayed with me while I slept it off and then the next day, took me back to Edinburgh in the train so I didn’t have to do it alone. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me.

Nobody has ever really been able to confirm what actually triggers seizures in me. As part of my recovery, I have to know what happened in the run up to the seizures. It’s my way of trying to understand what has happened and maybe try to pinpoint the trigger. I plague people who were there with questions. I try to piece it all back together. Some people are quite happy to give me the blow-by-blow account that I’m asking for, but others are less comfortable. I understand that. They don’t want to upset me and maybe they don’t want to have to recall it. But I have to know.

Epilepsy makes me stronger every day. I sometimes forget that. Every time I have an episode, I get back up, I dust myself down and I live life again. No, it isn’t easy. Yes, sometimes I get bogged down and it feels like trying to move forward is like wading through mud.

I’m living my life the best way I know how. Isn’t everybody?


Epilepsy and False nails….

Well, in my experience the two just don’t go together.  Especially if you’re of the male persuasion.

My nails aren’t naturally gorgeous.  They split, break and generally look like I’ve spent a lifetime chewing them.  Hmm, stands to reason being as I have…Anyway, I’d spent a fortune getting my nails done for a special occasion.  I can’t recall what that occasion was now, but I do remember they looked beautiful. A couple of days later, I’d been shopping in town and I was standing at the bus stop waiting for the No1 to go home.  I had a fit right there in the bus stand apparently.  The paramedics were called and, true to form, I found myself in the hospital. Minus my beautiful nails.  Now, according to the nurses, I’d left most of my nails in one of the paramedics, who had tried to sweet talk me into the ambulance.  I’m guessing he won’t be doing that again in a hurry….I’ve met a lot of paramedics in my time.  An awful lot.  They’re the ones who generally have to bear the brunt of my lack of desire to enter an ambulance, be strapped in and they don’t see me at my best.  I’ve questioned the parentage of almost every single one of them and yet I remember none of them.

In my experience, paramedics, nurses, ward assistants and hospital staff in general, are amazing. They put up with me, patch me up, feed me (I don’t like being in hospital, but my favourite part is having rice krispies with sugar for breakfast ) and send me on my way in a far better shape than that in which I arrived.  Consultants.  They are a completely different breed, but I guess I’ll get to that.

I don’t remember too much about being diagnosed with epilepsy to be honest.  I’ve said I had my first fit at 15yrs and I was diagnosed 2 years later after I had a fit when I was supposed to be at a job interview.  I suppose I didn’t want to be a checkout girl at Morrisons supermarket.  My Dad had come home early from his work to find out how the interview had gone, to find me lying on the couch and talking rubbish.  He wasn’t happy.  I turned my face to look at him and gave him a mouthful of obscenities and that’s when he saw the bruising down my face from where I’d been banging my head off the wooden armrests of the couch.  The doctor was called and he trailed his finger along the sole of my foot and I felt like it was being ripped open and doused with acid.  He said that it was a sure-fire sign that I’d had another seizure.  Cue more hospital visits and this time a diagnosis of epilepsy and the beginning of the battle of the meds.  Something else I’ll get to!

As I’ve said, I didn’t know much about epilepsy when I was diagnosed back in the 80s.  I certainly didn’t want to talk about it and I was in a constant bad mood, partly down to the fact I was a teenager and partly because I was terrified.  What did it all mean?  Did I have a mental disorder?  Was I going to have to live in some kind of facility?  Could I work?  Could I get married?  Could I have children?  Was I safe to be around?  I had so many questions and fears.  I didn’t voice any of them.  I was too scared of the answers so I chose not to find out.  20+ years later and I can see the error of my ways.  Maybe someone should have pushed me to ask questions and talk about it, but I don’t remember anyone doing that and I probably wouldn’t have been receptive anyway.  Now, I ask questions.  I don’t give a second thought to how daft they might sound.  They’re not daft to me and if asking the question means I don’t spend the next 20 years wondering, then I’m going to ask it. To date, no-one has made me feel stupid for asking a question.  I have, on occasion, been spoken to as if I’m small child or a silly girl, but I’ve got the answers and the discomfort of asking has been short-lived  I still get a bit nervous going to see the medical profession of my own accord.  Arriving in an ambulance and lacking control is one thing, but pitching up at the neurology department after a summons still makes me uneasy.  So, I write down what I want to ask.  That way, I remember to ask it.  Epilepsy can be frightening and is definitely still misunderstood, but the epileptic’s lot is improving.  For instance, in the Dark Ages we would have been burned alive accused of being involved with witchcraft; in the Middle Ages we would have been referred to a saint to receive treatment for the “falling sickness”; today there is information, support and a wider-acknowledgement of the condition and its (many) treatments. Oh, and it’s not politically correct to describe yourself as epileptic anymore.  I still do refer to myself that way, same way as I describe myself as female and as brunette.  It doesn’t define me, it just is what it is.

As I’ve said, having a seizure for me is always followed by a bout of depression.  Some depressions go deeper than others and some I can shake pretty quickly.  The depression that I felt after the fits before Christmas is lingering.  It’s not as dark as it was, but it’s still hanging around.  I’m feeling depression and I’m fearful of depression, far more scared of that than the physical side of epilepsy.  Although, I quite happily advertise my epilepsy to anyone who will listen for a variety of reasons that I’ll get to later, it’s not until relatively recently that I’ve been more open about the depression I suffer.  Depression, for me, brings back memories of how others in my life “coped” with and were “treated” for their depression when I was much much younger than I am today.  It invokes a feeling of dread.  I was talking to a friend about dread a couple of days ago. He was telling me how his wife is dreading a long-haul flight with their two very young children.  The flight is inevitable, so he just accepts there will be some pain involved, but for his wife she is actively dreading it even though there is nothing she can do about it.  It’s an interesting concept.  I don’t dread physical pain.  Emotional pain?  Well that I dread, and rather than accept it as inevitable and not worry about it, the dread becomes a constant regardless of any action taken.  Problem is, in my experience, a depressed mind isn’t a rational mind and so the cycle continues.  Dread attracts dread and all of a sudden everything is frightening.  The only solution is to take action to break the cycle and of course that involves a great deal of dread…..viscious.

Today has been a strange day and I’ve spent most of it thinking about my jigsaw.  I’ve been thinking about how there is a sea of grey where my 30s should be.  I’ve been thinking about my life and what I’ve done with it so far and I realise that my 20s were the high point.  My 30s was a series of bad relationships, bad decisions, depression and a job which I thoroughly enjoyed but didn’t stretch me beyond my comfort zone.  My 30s were blah and if I’m not careful, my 40s will go a similar way.  So, it’s time to take control again. To accept the depression for what it is but to also accept that it will pass.  The trick is not to dwell and to not let it become all-encompassing.  I accept my epilepsy has consequences.

One of the advantages of having epilepsy is that I save a fortune not getting my nails done….


Epilepsy and Daniel Craig…

So, I’m in the cinema with my brother’s girlfriend. We haven’t known each other long; we’re bonding. It’s a Saturday morning and it’s a fairly busy theatre but not packed out. We’re there to see Quantum of Solace. James Bond appears on the screen and I start fitting. I’ve talked before about having a seizure in a pub and the logistics of that, now picture the scene in a cinema. Those seats aren’t very forgiving on your average epileptic. Add into the mix the noise, the darkness, me swearing at the top of my voice, my freaked-out friend and the fact that a lot of people have paid good money to watch Mr Bond. I don’t remember, but there were one or two patrons who thought my friend should just shut me up. They didn’t give her any ideas on how she should achieve this so, unfortunately for them, I didn’t shut up. Neither would I leave the auditorium when the paramedics arrived. Their efforts to coax me from my seat and get me to the waiting ambulance were met by outright refusals on my part and not quiet, well-mannered ones at that. This, by all accounts didn’t go down well with the “shut her up” brigade. A lovely person who was sitting behind us, had tried to help my friend keep me from hurting myself, unfortunately we didn’t get her name, but if you happen to be reading this – thank you very much! There was a time when an episode like this would have mortified me. There was no way I would have returned to the cinema and there was no way I would put myself in the position of humiliating myself again. The thing is though, I didn’t humiliate myself. Those that thought I should just be quiet were the ignorant ones, and 99% of the people in the cinema were probably more embarrassed for them than for me.

Daniel Craig doesn’t really do it for me; he’s just a bit too pouty.

Charles Dickens, Leonardo da Vinci, Agatha Christie, Danny Glover, Michelangelo, Julius Caesar, Napoleon, Pythagoras (got to love him and his theorem), Hugo Weaving, Sir Isaac Newton, Richard Burton….all suffer(ed) with epilepsy. They all live(d) a productive life. They aren’t remembered for having epilepsy, so I don’t feel the need to be remembered for having it either. There are too many other things that I have done, can do and will do with my life. If anything, my epilepsy has spurred me on. Why should I place limits on my life? As long as I’m not endangering anyone else, am fully aware of any consequences, then I don’t see why I can’t jump out of a plane.

You may have noticed that I talk about “my epilepsy” a lot. I own it, it doesn’t own me. I also refer to it this way, because every person experiences epilepsy in a unique way. I have adult-onset epilepsy. I had my first seizure at 15yrs old and was diagnosed when I was 17yrs old. I won’t grow out of it, but I think I have grown into it. I don’t think I’d even heard of epilepsy when I had my first seizure in Mr Marshall’s English class in 1986. It certainly wasn’t a hot-topic of conversation in the common-room! I was poked, prodded and pronounced fit to return to school though and the episode was chalked-up to “one of those things”. I was just a hormonal teenage girl. Epilepsy is a disturbance of the electrical activity in the brain. It’s a malfunction of the software if you like. My physical brain, the hardware as it were, is perfectly normal. Unfortunately, brain software doesn’t come with a guarantee and receipt, so you can’t take it back and demand a refund. So, I live with it. I accept it and I tolerate it. It is but a bird-dropping on the path of life.

My epilepsy doesn’t just affect me though, it affects all of those around me. My family, my friends, my colleagues and James Bond fans. They have to deal with the physical consequences and some of them are affected by the emotional consequences too. The lady who persuaded me to write this blog is the mother of a beautiful young girl who also has epilepsy. Her seizures are affectionately known as the “shakies”. Well, her Dad once asked me “Does it hurt when you’re having one”? He asked this because his gorgeous little girl, like many of us who suffer epilepsy, screams when she is having an episode. To him, it sounds like his little princess is in total agony and there is not a thing he can do about it. I can not imagine, I don’t want to imagine the feeling of helplessness. But, this is actually a question that I have asked myself many times over the years that I’ve suffered. I have concluded that during the actual seizure itself, I feel no pain. Or, if I do feel pain at the time, I don’t remember feeling it. Memory issues. Hmm, I guess I’ll get to that later..

For me, if I’ve had the misfortune to hurt myself during the fit, then I might feel pain when I come round. I do generally have a cracking headache, but I think this is mainly caused by dehydration. The jerking puts a massive strain on your body. It was explained to me as my brain telling my muscles to contract and extend at the same time. The electrical wiring is having a surge, the muscles don’t know what to do, so they try to do both movements at the same time and it causes the jerking that’s associated with a seizure. Imagine doing a million bicep-curls with 25kg weights in the space of 5 or 6 minutes and you’ll get the idea. So, yes, there is some physical pain afterwards; but, for me, not during. The other thing that I’ve had people tell me is that they feel guilty because they could not stop me from hurting myself. My response to this is simple. It all happens so fast, generally people only realise something has happened when they hear the noise of me hitting the ground. I don’t hold anyone accountable for me ending up on the floor having a shakie, all I ask is that you try to create a space around me to lessen the chance of me injuring myself. How you’re meant to do that in a cinema though, I really don’t know….