I remember the first day I realised I’d had a head injury. I was in hospital and I thought to myself, ‘It can’t be that bad. I can still remember my kids. I’m still me…’
It was about this time I found myself playing tennis. I’m in Glasgow, with friends, just having fun, nothing competitive – at the tennis courts over the r road from our flat, which we used to climb into to play for free. I’m feeling the racket in my hands, watching the ball sail towards me – thwack right in the centre of the racket, and I send it whistling past the others and into the corner of the court … The sky is blue and cloudless, the sun hot on my back…
That should have been the giveaway. You don’t get days like that in Glasgow. But the sensation was so intensely real that long after I woke up, I was certain it had happened. It made so much more sense than the hospital bed I was in, the huge and menacing bosom of some nurse looming at me to haul me up the bed, the stink of her deodorant, the deafening ringing in my ears. I was disorientated, dizzy with the shock of it for hours … where was I, in which reality was I living?
They kept coming, day after day. I took my wife shopping on Fenwick Street – we looked for clothes for her – just a normal Saturday in London … Or sometimes we would walk along the beach together… and then I’d come around in the stuffy, dreary hospital ward.
I haven’t had any of these dreams for a while. I don’t miss them. The moment of pleasure is not worth the rude slap in the face when it dawns on me all over again. Here I am still fucked
Since I’ve been home, I’ve been having more typical anxiety dreams … being out of control, unprepared, powerless, I guess. I have to give a lecture and I haven’t got it ready … or I’m driving – but I’m in my bed, in the car. And I can’t sit up to see where I’m going …. I’m in a city – Truro perhaps, or Plymouth; it’s that endless commute I used to do, still chugging round and round in my disordered neurones – and someone might step off the pavement into the road and oh God, I can’t reach the brakes … it’s a nightmare.
Again it was a relief to wake up, although I had the same sense of disorientation and dizziness. My heart was pounding, adrenaline fizzing through me, and I couldn’t shake the hyper-real sensation of the dream. I asked someone to go outside and check the car was there – I couldn’t rid myself of the thought that I’d driven it off and left it somewhere, anywhere, in the middle of the road… My life has become so weird, my reality so dreamlike, I find it hard to distinguish between the two
All the competitive energy I used to pour into sport, in my career, or study, or whatever, now goes into my physiotherapy sessions. It’s bloody hard work, painful and demoralising. The theory is that even where the nerves were damaged as a result of my accident, they are able to regenerate, and then they can be stimulated and re-educated. In practise progress is slow and nasty. Re-educating and awakening the nerves is excruciating because at first the brain interprets the slightest contact or movement as pain. I have to re-train my brain, for example, that a little scratch is not a great stab wound by looking at it and reasoning with myself, with my own nervous system. Visual signals slowly translate into a more gentle response.
incredibly hard to see me now as I am, with the memory of those brussel sprout times, and all the fear and horror that went with them. But look at me now – it’s been months since I last fell, and that was only because I was laughing so much! I was teasing the scarer and I was laughing so much that I stumbled… but there was no damage done. I do have fits very occasionally, but they are just complex partial as opposed to tonic clonic seizures, ie I was conscious throughout. And after all, epileptic patients are encouraged to have showers rather than baths precisely because they can’t drown. So I find myself constantly trying to convince those around me that I am normal, or at least more normal than they think.
In many ways it has been an interesting existential sort of time for me, trying to understand and come to terms with what has changed since the accident. One common symptom of brain trauma I am at risk of is perseverating – that is to say, repeating certain actions again and again. It means that if you set your mind to something, you can’t think of anything else but doing that thing.
I can see that everyone around me thinks I am perseverating. And yet I can’t help feeling as though I’m in a double blind because from my point of view I have perfectly valid reasons for repeating certain actions. The scarers may think that I’m perseverating in the shower when I wash myself several times over but in fact I just love being in the shower – it’s one of the pleasurable moments in my day – and I might as well do something useful while I’m there…
The received view of perseverating is that the patient doesn’t know that he’s doing it. But now I’m in this situation myself I’m not so sure. It seems to me that I do recognise when I’m doing it and I can sometimes stop myself from doing it through self-awareness… on the other hand it’s a bit of bind because if people tell me I’m perseverating then it’s sort of too late… and unarguable. Still of course it’s only by being told that I can start to control it.
What brain activity I have been left with is hidden from everyone, and they are left trying to infer what I am thinking from my actions. Every little lapse of memory or repetition is given so much weight. But I’m sure lots of people behave in similar ways despite their unharmed brains. It’s just that everyone is always assessing my behaviour, labelling it, putting it tidily in a box. And it leaves me constantly having to explain myself about every little thing.
It’s a mysterious thing, memory – we still have no understanding of what memory actually is, or why the brain short-circuits in this strange way after a brain trauma. And in my case it’s amazing I have any memory at all, given that most of my frontal lobes ended up in the surgical bucket. I am not trying to sound too arrogant here, but it seems that I was a highly functioning human before the accident. I was able to dual task quite easily – I could write articles, manage a 2 hour commute, research and at the same time work as the Associate Professor in Medical Ethics and Law. Now, however, I am told that is all in the past; due to the severity of my injuries I’ll never be able to do all these jobs again.
Yet, being the stubborn person I am, I am refusing to accept that. Why? Is this just self-delusion? Or is it my old personality coming out again? I should barely have a character or personality if you go by my brainscan. Yet here I am, character still at least partly intact, still fighting my battles, still me. I have my memories, my whole past life that made me who I am; and it seems to me that it’s these memories that are directing who I am now – insisting that I am still the determined, unshakeable Andrew I always was. In most people, their experience forms their memories, but in my life now, it’s as though my memories are forming my current experience. And yet of course even my memory has been damaged – particularly my short term and working memory, even though I’m working hard to rectify that – so there must be something even deeper than memory that makes up one’s character. Some people would call it a soul.
I wonder if I am going to have to refer to myself as to some sort of deity where there is a Andrew BC and an an Andrew AD – before the catastrophe and after the disaster. Recently I had the bizarre existential experience of meeting up with my neurosurgeon at a friend’s party. As we made small talk over the canapes, I couldn’t stop thinking about the fact that she had quite literally been inside my head and cut out the damaged and swollen parts of my brain. On this long struggle towards recovery I’ve often looked back longingly at the way I used to be able to heal so quickly – every small cut and scrape seemed to get better in a flash. Now, although I used to work with my friend the neurosurgeon and always had the greatest respect for her, I must admit I had this nagging anxiety that she might have cut out a bit too much of my poor porridgy mess of a brain.
These days I question everything about myself – am I walking like a robot? Am I smiling or looking grumpy? I can’t feel my expression. I’m paranoid about looking like a drooling idiot, because as well as everything else my swallowing reflex is damaged so I constantly feel my mouth is full of saliva… I try to keep my mouth almost closed and then it seems to me that I don’t enunciate my words properly. The combination of loss of sensation on my left side and my sense of proprioception means that everything feels unnatural, foreign to me. The most graphic example of this for me is that when I’m walking, each time I put down my right foot my leg automatically bends at the knee, but with my left leg I have to think each time how much to bend it. It’s exhausting.