Life after long-term illness

Today we’re very privileged to publish this guest blog from Geoff Gunby, a long-term sufferer of epilepsy, who has now been seziure-free for over two years. He talks about how this remission has effected his outlook on life.

I recently commented to a Facebook friend on the subject of seventies rock lyric, a song by Hawkwind about nuclear war, that somehow, back in the day, it was almost reassuring to have the apocalypse at hand, that at least one knew where one stood. There was a definite something to fear, no matter how much one tried to ignore it, and this allowed songwriters, for example, easy access to a sense of meaning and importance. Never mind that the end of civilisation as we knew it was a constant and real possibility which nearly did come to pass on several occasions, well it didn’t and we’re here now, lets be glib and why not?

Oh dear.

Geoff Gunby
Geoff Gunby: looking forward to an uncertain future
But we’ve all done it, posted something and then spent the rest of the day in frenzy of remorse, all the time wondering if it’s not to late to delete the evidence of one’s stupidity, raking over and over how one has just exposed oneself in all one’s crude shallowness to the baleful gaze of the great rational out-there, who are all, even as you sit transfixed, about to unfriend you and then share with everyone you have in common what a fool you are, leaving you in virtual limbo for ever and a day. Anyway maybe I was feeling stubborn, maybe I just had an attack of proportionality, but I just let it stand and of course, needless to say, no one did any commenting, complaining or unfriending, even if they had been finally confirmed in their suspicions about me.

Besides the fact is that people do tend to be more at ease with hardship than uncertainty and that this is mirrored in the suicide rate actually going up at the end of wars or during times of economic improvement rather than with the enemy at the gate or in the trough of depression and this was what I would like to think I was really alluding in my post – to that in a strange way its much better to be done for, to be in the depths of despair and to be able to give up rather than to have to face up to deciding what to do next and to the fact of your own uncertainty and growing realisation that there are no givens.

In the past I have suffered from depression and whilst it is not an experience I would recommend to anyone the fact is that one does become habituated to it in the same way as one might to being unemployed or in prison. More relevant to my present circumstances and to this line of discussion is the epilepsy from which I have suffered for the whole of my adult life and from which, due to good doctoring and my having made some lifestyle adjustments, I am now enjoying a remission which has lasted for over two years, constituting the longest time I have been well since I was 14.

For 37 years I have suffered from scary petit mal seizures and from over the top grand mal tonic clonic seizures. I’ve collapsed into freezers in Sainsburys and lived on Bonjela for days without end. Every day of my life has have spent in the shadow of this life threatening illness, the only positive aspect of which is that, like a character in a story by Doestoevskii, that patron saint of the epileptic, I can never remember what has happened.

I have spent my life working out how to get enough sleep, making sure I get and take my medication, all the time worrying about the effect it is having on me, calculating the risk in climbing stairs and ladders, visualising roads and hillsides as places upon which to collapse and die, woken up in hospitals not knowing my name hundreds of times over, having screamed and turned blue and cheated death by a whisker, suffered the pain over and over of a bitten tongue or a scraped face or bruised pride and just carried on and carried on until all this has become my normality, a normality to which I have to say I became adjusted and in the end clung to with all my might. I was ill and that was that.

And now that things are better, now that I have taken the time to realise that without alchohol I would have had few if any seizures, reviewed the implications of this and taken the step of stopping drinking, having faced up to the addictive nature of the drink/meds combination, what I am left with is a whole lot of fear. It may be that I have simply got better as many epileptics do if they make it past forty, but still I can still look back over a life shaped by an illness and think what if?, what if?, and it’s like standing on a clifftop facing away from the edge. I think what if, what if? what if I’d died, what if I’d chosen to live earlier, and of course, as with all such questions the answer is that there is no answer, only the future.

Yes. I am now confronted with all the issues that my illness helped me avoid ranging from ‘am I really that bad at chess?’ to ‘can I succeed as a painter’, from ‘how can I make a living?’, to ‘can I be loved for who I am and not merely as a dependent?’. The whole of my life has changed and with it has come massive uncertainty, penetrating into every aspect of my daily routine and everything I do, should I think of learning to drive?, should I buy a bike and dice with the London traffic?, should I finally finish with disability benefit?, am I still ill?, should I aim to cut my medications?, just how does one cope with the social anxiety of going to a party straight and being surrounded by boring middle aged people drinking and taking drugs like there was no tomorrow? Questions, questions and more questions and I love it. Nothing more than everyday worries and yet so so precious. Through my experience as a long term patient I can see them as something to be grateful for rather than something to run away from or to ignore.

But still incredibly I find when things get a bit much there is that same voice prompting me to take a chance and have a drink, smoke and joint or stay up all night and it has me wondering, how many others are there in the same boat or worse, people for whom getting better is not so much not an option as just a little bit too scary to contemplate, who are holding themselves back just because they can’t face the questions. Of course there are limits to what people can do, to what extent simple willpower and clean living can do to bring about recovery, but the eternal debate concerning to what extent being labelled ‘disabled’ is in itself disabling will, of course, run and run. As will all the other questions.