May 3 2017

Epilepsy and me

This one’s for me

On my ‘Welcome’ page I’ve explained that I’d like to use my site as a multi-functional platform. Sure, I’ll retain emphasis on writing – both my own and that of others – but I want to cover other topics, too. Whilst it may make for a less focused website, it’s more convenient for me and it’s a tad cheaper.

One such topic that’s in the forefront of my mind (and I guess has been there for more than fifty years) is epilepsy. However, for the sake of accuracy I can now say it isn’t in the forefront, rather the right temporal lobe.

The spike

This is not an exercise in self-pity. Rather, I hope to explain my mistakes in my approach to the condition, as well as the mistakes of others – mainly some within the medical fraternity and other professionals in who I’d placed my trust.

Whilst repeated misdiagnoses have severely impaired effective treatment of my condition – as recently as 2014 –it’s been the glib, throw-away comments and attitudes of others that have left the deepest scars.

Where to start? The beginning seems to be the logical place.

1966: a year of mixed fortunes — and where it all began

July 1966 – all smiles

1966 was a significant year in Britain. In July England won the world cup – though that failed to impress me at the time. It was also a year of tragedy, for on October 21 in the Welsh village of Aberfan, 116 children and 28 adults lost their lives when a nearby colliery slag heap collapsed, burying part of the village, including the school.

A hundred and forty-four lives snuffed out in an instant.

October, 1966. Aberfan – a valuable perspective

Even now, for the sake of perspectives, it does me good to keep that in mind, for it was also in 1966 that my own life changed profoundly. It was then that I began to suffer from seizures.

My mum, once a nurse in war-torn London, quickly realised that her eight-year-old son wasn’t simply ‘acting the goat’ (something I was often apt to do). Things then happened swiftly.

By lunchtime that day I’d seen my GP and had been sent home to pack. A few hours later, an ambulance arrived to take me to Stamford’s Royal Infirmary where I was to experience a week of tests.

The first of many tears

While in hospital, I encountered the first of those significant careless comments that impacted on me, clouding my own judgement of my condition for many years.

I was away from home for the very first time in my life. Strange events were occurring several times each day that I couldn’t understand and which frightened me — as, indeed they still do. (The pain caused by this trauma would later manifest itself while under therapeutic hypnosis thirty years later.)

My body and mind repeatedly lost control, yet I retained an altered awareness. Why were my eyes flickering strangely as though controlled by someone else? Why did my arms jerk about? Why did I make strange noses in my throat?

I cried. A lot, most probably.

In answer to my tears, the ward nurses would tell me to shut up. One, I remember, pointed out a boy in another bed. He’d broken his arm. ‘He has something to cry about,’ I was told.

In other words, his problem was visible – physical. A real issue, then. My own condition, which only touched me when my brain refused to ‘play ball’, meant I appeared okay – the assumption being that I was okay. How many times have I encountered that one since then?

Looking through adult lenses, I realise the nurses’ comments were probably well-meant, but they were also ill-conceived. As a result, in my very first week of having epilepsy, I learned that it was trivial, not worth the tears, and it was up to me to ‘man-up’. I was eight years-old.

I had no choice but to brush things aside and soldier-on. And so began fifty-years of anxiety stock-piling.

Self destruction(?)

The second event that had a profound effect on my self-esteem and self-appreciation of my condition was when I was hospitalised again for further tests.

This time I was in my early teens and was by then living in the north of the county. The family had moved home on October 21, 1966 – the day of that disaster in south Wales. The hospital this time was in Grimsby and the event remains crystal clear in my memory.

I was lying on my hospital bed and suffering a seizure. These events occurred regularly each day. They still do, I might add.

On this occasion, my specialist – who for the sake of his family shall remain unnamed – stood at the foot of my bed surrounded by white-coated registrars. I can still hear his words:

Snap out of it, Stephen. You’re doing this, you’re in control. You’re doing this to yourself.

I wasn’t, of course. I know that now.

You don’t have to be particularly gifted to realise the amount of subsequent guilt I’ve suffered since that day. ‘You’re doing this to yourself.’

Despite the recent video diagnostic telemetry tests that recorded thirteen seizures in two-and-a-half days and identified them as caused by temporal lobe epilepsy, a measure of that same guilt remains – driven by the careless comments of a misguided neurological consultant and someone in whom my family placed absolute trust.

Perhaps it should come as no surprise that, following a seizure, I will still usually apologise to those around me. As though I’ve made an arse of myself; done something shameful. The reaction is so inbuilt it’s as automatic as blinking.

Career prospects – ‘set your sights low’

The two events I’ve described were made during my childhood. I was at school and had no responsibilities. But before long I was faced with the need to look for a job and it was during a meeting with a careers teacher at school that a further comment was made. One that, I believe, also helped shape my attitude regarding my condition.

Having checked my file and umm-ed and ahh-ed about my illness, my teacher declared:

‘I’m afraid you’ll never have a responsible position … or operate machinery. So, set your sights low. Something achievable – a council worker, maybe, or lift-operator.’

I may have paraphrased here but that final suggestion has been emblazoned on my mind since then. The reason? Neither the small town in which I lived, nor the larger one nearby, possessed any buildings in which lift operators were required.

I guess that’s when I thought ‘sod it’, this little problem wouldn’t get the better of me and I’d overcome it. I would have a responsible job and I would operate machinery.

And I did. In my very first role I was doing both and proving myself capable on both scores.

Pressure builds

What I didn’t know then was that, by placing career, family – in fact everything and everyone else – before my own well-being it would prove to be a massively destructive element in my life.

You see, the guilt and shame (you’re doing this to yourself [and others] Stephen) continued for decades. Shamed by this sense of wanton self-destruction, rather than have an openness about my condition, I’d try to hide it.

In the workplace, at the onset of symptoms (the sense of deja-vu or aura), I’d rush for the nearest toilet. Hide. I’d try to keep phone calls brief to reduce the risk of having a seizure while ‘trapped’ on the line. This went on for year after year.

Escape route

I hated meetings, always sitting near an escape route. People coming to my desk and standing over me made me claustrophobic, tightening my throat, flooding my mind with fear and negativity and impairing my thoughts and judgement.

All this time I was trying to hold down a responsible position in a stressful environment, stresses which were multiplied countless times by my own misguided handling of my condition, one for which I perceived myself to be the sole cause.

Collapse … and another misdiagnosis

And so, the anxiety stock-piling begun in 1966 continued – rather like that Aberfan slag-heap – and it finally collapsed in 2014 when I lost my job, almost lost my life, and what little self-esteem I had remaining by then was finally torn to shreds and scattered on the wind.

I realised that I couldn’t go on like this. The energy that had powered me to overcome, perform and succeed since 1966 had finally drained away. There was nothing left. I was running on empty.

This realisation should perhaps have been a release, allowing me to take stock and rebuild. But it wasn’t.

The balloon that had been my life had finally burst. This perception was compounded by a further misdiagnosis of my condition (non-epileptic attack disorder) and the prescribing of drugs for which there had already been warnings issued in the UK due to their tendency for creating suicidal thoughts.

That then was 2014. It was forty-eight years since the onset of seizures and, despite advances in medicine, misdiagnoses were still being made. For the sake of my sanity I’ll by-pass the next two years – suffice to say that my amazing family and my own in-bred stubborn refusal to be beaten saw me through a very difficult time and escorted me out of a very dark place to where I am now.

The view from here (and blue cheese)

So where am I, aside from trying to rekindle my love of writing safe in my own home?

Thanks to the tenacious efforts of my specialist, Dr Richard Grünewald of Sheffield’s Royal Hallamshire Hospital, I’ve been weaned off destructive, suicidal-thoughts-inducing drugs and placed on a course of medication that has shown positive results. Positive in that my seizures are kept at a ‘manageable level’ if there is such.

Significantly, however, he has irrefutably identified the condition as epilepsy. For that alone I’m immeasurably grateful.

But for me, the epilepsy remains uncontrolled and, in all likelihood, will continue to be so unless steps are taken to physically remove its cause.

It’s accepted among clinicians that a sufferer who fails to gain control after 3-4 different medication trials will probably not do so from drugs alone. I can’t count the number I’ve tried over the years – both singly and in cocktail form.

Last month I underwent video-telemetry. During this my brain activity was monitored and the approximate location of epileptic activity identified. I say approximate as the tests, in which multiple electrodes are glued to the patient’s head and activity monitored, equate to placing a tumbler against a wall to find out what the neighbours are up to.

Routine maintenance?

The next step will be to home-in on that area and pin-point the trouble-spot prior to surgery. The method – stereo EEG – involves inserting wires into the frontal lobe of my brain (rather like copper wires in blue cheese, I guess) to closely monitor seizure activity.

So here I am, writing this piece, facing the prospect of brain surgery to rectify a condition that I’ve endured for fifty-one years, and one that has led to massive anxiety issues and derailed my life. But why have I written this now?

Why write this?

The reasons are manifold. One is to explain to other sufferers reading this how not to approach their condition:

Don’t make my mistakes. You can’t brush it under a carpet, but nor can you afford to allow it define who you are. I am not epileptic – for declaring this in this way places me in a convenient pigeon-hole – it isn’t who I am. I’m far more than that but I’m also a person with epilepsy. The two are different, though the subtlety of that difference may be lost on non-sufferers.

This also gives me the opportunity to apologise to any family members reading this:

I’m sorry I didn’t attend the annual family gathering last year. I alluded to a ‘dark place’ earlier. I was there, rather than in south Lincolnshire enjoying your company. Be assured that, God willing, I’ll be with you this year.

Finally, while it is epilepsy and my experience of it that’s generated this piece, epilepsy and anxiety go hand in hand. They’re bound to – just think about it.

While seizures may be brief albeit repeated events, anxiety remains a constant.

Anxiety doesn’t go away; its levels merely fluctuate. In my case, as was identified by my psychologist during six incredibly difficult weeks of treatment earlier this year, the effect has been like a pressure-cooker. My seals finally blew out.

Anxiety is also one of those hidden elements, yet is as much a threat as even the most serious of medical conditions. Only now is it being given the air-space and press-coverage it warrants. But even now it’s not enough.

For me, spending years behind a smile – worn for the sake of others – while inside I’ve been screaming, has taken a terrible toll, both on me and my family.

I applaud Prince Harry for stepping up to the plate and demonstrating such honesty about his own condition. Rather than reflect weakness, it shows his incredible strength. The guy is a hero. I hope he emboldens others to do the same.

For anyone with acute anxiety – or anxiety at any level – there is no shame; no reason to hide. The reasons behind your anxiety are probably totally outside your control. And, as there is no shame in how you may feel, there is no shame in asking for help either. Don’t allow pressure to build. Don’t let the seals blow. It ain’t pretty.

Express your emotions – you’ll feel better for it

And for anyone reading this who may identify with what I’ve written, anyone feeling trapped behind their own smiles, can I suggest you do what I’ve done. Declare openly your feelings and share them, however wide the audience. Hell, the wider the better.

Get those words down. It’s cathartic, believe me. If no-one reads them it matters not a jot, for the simple act of release will be its own reward.

But be assured, if your words are read and they benefit someone in some way, however small that may be, then the writing will have far greater value than perhaps you can ever imagine.