The ‘E’ Word

2004 – 2011

I instinctively knew the bad news we’d suspected for some months was indeed heading in our direction when an unannounced nurse appeared in the room. Having already lived through two devastating life experiences but knowing that ‘the news,’ even if it was confirmed, wasn’t immediately life threatening, I just nodded and waited for the plan of action to follow.  Perhaps it was ignorance or unrealistic optimism, but I didn’t feel it wasn’t anything we couldn’t get to grips with sooner or later and manage along with the other 87 people diagnosed every day, and indeed the 650,000 living with the same condition in the UK.  At least we wouldn’t be alone.

We stepped on the conveyor belt of tests and what turned out to be Round One of prescribed medication.  Comforting murmurs from friends and relatives drifted our way. “Oh, he’ll probably grow out of it, lots of teenagers do”, or “So and so had it and still led that expedition to Kilimanjaro”.  Indeed, just the sort of empathetic noises I would probably have made myself had someone else been coming to terms with a similar issue.

However, we are several months further down the line now, and in reality I’m on tenterhooks dreading yet another phone call from the sympathetic, but equally exasperated school office staff telling me he’s had another ‘funny turn’, and requesting me to collect him from First Aid immediately. If it’s not the school, then it’s usually a kind local passer-by, breathlessly blurting out the description of the event down the phone over the now familiar siren of an ambulance approaching in the background.

I ‘down tools’ as quickly as I can at work, mumbling apologies to anyone who is left to listen, which is difficult, as since the numerous redundancies, cover for ‘holding the fort’ doesn’t really exist anymore, except on paper.  Inevitably the traffic holds up my rescue, but who cares, – no one is taking my blood pressure and it is only stress after all, a little bit of which is supposed to be good for you.  My jelly baby supply from the glove compartment offers some mundane comfort as I try not to imagine serious scenarios.  Another caller at the scene informs me to change direction and go straight to A&E as the patient has already been assessed and whisked away. An ambulance’s siren draws closer, whizzes past and fades into the distance.  I’m tempted to wave frantically at the driver in order to see if its contents belong to me, but tell myself to get a grip and chuck down another jelly baby instead.   Is the traffic going extra slow today – or is it just my frustration that makes it appear so?

We attempt to keep to daily routines as our invisible disability creeps into all corners of our lives, but we reluctantly have to admit it is becoming increasingly difficult to maintain much semblance of normality.  The word independence seems to be fading from our vocabulary along with others like interests, education, career, social life, travel, and various teenage milestones.  New unfriendly unfamiliar words pop up instead: electroencephalogram, neuropsychology, post-ictal, frontal lobe, unpredictability, refractory, side-effects, idiopathic, precautions and worst of all, discrimination.  Contrary to popular belief, the prospect of not being able to drive is the least of our concerns.

I seem to have turned into a pharmacist, and am now fully acquainted with a long list of medications and local dispensers. My Sat Nav’s ability to direct me to the nearest hospital is proving useful, as are the cushion, camping mat, blankets, and overnight bag living permanently in the back of the car, for the now more than regular emergency trips to the local hospital, (a mere 33 in the last year alone).  We are on first name terms with the lovely local paramedics who shadow our lives around like a fly on a wall. They are probably as baffled as we are as to why we couldn’t have fallen into the moderately bearable two thirds bracket of ‘well controlled on medication’.   We must be going mad, as day trips and holidays are being planned around comfortable driving distance to and from the nearest A&E.

Between Consultants numbers three and five, and failure of Round Two medication, we launch off into the pros and cons of exploratory neurosurgery.  After seven months’ nail-biting debate, we take the plunge.  Miraculously he doesn’t appear any the worse for this experience and the neat blanket style stitches running across his forehead soon disappear.  I suggest that he puts a photo of his very impressive surgery scars on Facebook to relieve the monotony of his peer’s wild party snap shots or exotic holiday scenes.  Surgery was certainly a brave attempt on all accounts, but alas, no luck with finding the offending focus.  Other alternatives are discussed, but appear to be even further down the line, so we move on and this ordeal becomes a distant memory surprisingly quickly.

My husband and I have become actors as we play out the almost daily drama of coping with episodes in public. Inadvertently we’ve become experts at assessing and controlling the categories of spectator.  These vary from the gawkers, the alarmed, control freaks, Supermen to budding neurologists! I jest of course. Fortunately, most people are genuinely concerned, kind and aren’t obsessed with the tongue swallowing myth.  Indeed, it was my intention initially to write and thank Good Samaritans, but I’m glad I didn’t start as we’d need our own franking machine to keep up! To avoid complacency, we have had a handful of unnerving experiences flung our way, including an incident in a swimming pool (firefighters to the fore), and another when we narrowly escaped being helicoptered off a motorway in the rush hour. On the latter occasion, we eventually took the more traditional transport to A&E, but not without succeeding in closing all four lanes of the M5 on a sunny summer afternoon in August.

We are perturbed to realise that the ‘E’ word is dominating our conversations, and under normal circumstances would wonder how this thing could have had the audacity to take over our lives.  However, it turns out that many of the episodes we are witnessing are NEAD (Non E Attack Disorder), which though resembling e, is a psychiatric condition caused by stress and often prompted by trauma.  Tragically, our son plummets into this category, having witnessed his only sibling aged eight, lose her life over a period of nine months to leukaemia. Surely, an incomprehensible cataclysmic loss for anyone to bear, let alone a ten year old.

Our battle continues so I’ve joined an ‘E’ Support Group and have an impressive array of literature scattered around the house.  We are almost at breaking point when we are rescued by David Lewis, a local care centre specialising in many things including complex ‘E’.  We count our blessings to miraculously have this fantastic organisation on our doorstep, and finally our son is able to manage several interesting and fun activities while we plan the next move.  I say ‘we’, meaning of course, the now sizeable medical entourage we seem to have acquired and with whom we spend much time, ping-ponging back and forth like a marble stuck on a bagatelle board.  This calm team of professionals listens patiently to our woes, and although unable to offer a magic wand, show no signs of flagging and we are gently pushed down new paths in the hope of brighter days.

Having failed neurosurgery, (note how easily this previously terrifying word slips off my tongue), we hold our breath for Major Attempt Number Two and join the vagus nerve stimulator implant queue. We know are we talking about control rather than cure, however slight that may be.  Time will tell.

It is not quite a miracle, but yes, I think we have reason to celebrate. The word conjures up winning a race, gleaming trophies, academic success, a driving licence, an engagement or perhaps a milestone birthday.  Our celebration however, is a little more modest.

We are celebrating, albeit cautiously, our son’s ability to walk to the corner shop and back for a pint of milk. It’s not quite as far as Kilimanjaro and admittedly not really a feat that is going to take your breath away, particularly if you are 20 years of age, and have arms and legs that work in the normal manner.  But then your quality of life for the past seven years probably hasn’t been manipulated by your condition, which after all, is only epilepsy.

Never has a pint of milk tasted so good.

Cheers!