More Than Life

To Show the World...

It's cold this morning, despite it being late in May. I'm sitting outside my friend's house, on the wall, smoking a cigarette and watching the early morning routine of the bees in the hedge. I can't help thinking how much simpler life would be if I were a bee. Each one has its own place within the hive; they don't have to think about where they are or where they are going; they just work their jobs, with satisfaction, until the day they die, and then another bee takes their place.

I've just come out of hospital, after being told I have an incurable neurological condition and will never walk properly again. I was meant to stay there until they had worked out what, if anything, they could do for me. But there's only so much screaming and the stench of shit I can take; one night and one day is about my limit. It felt less like a neurology ward and more like a mental asylum. Between the two, I don't think there's much difference anyway. If there's something wrong with your brain, whatever that might be, your social standing drops dramatically; you are no longer your own person.

I was three days away from starting my new job - the first proper promotion I'd ever had, and more money that I'd ever seen in my life - when, quite suddenly, I found myself unable to talk or breathe. John had asked me a simple question and, although I could mouth the answer perfectly well, no sound would come out. Then, in a fit of panic, my breathing gave out on me and I could only regain both once I was lying completely flat on his living room carpet. What can I say? The Lord giveth and the Lord taketh away...Terror is too small a word to describe what I was feeling right there and then, looking up at the ceiling and wondering if was ever going to make it out of there alive.

Well, I managed it at least as far as the hospital. And it didn't take long for the on-call neurologist to tell me what was wrong with me: cervical dystonia, a rare condition which makes the muscles in the neck and back spasm involuntarily. Without successful treatment, it can leave the sufferer in a wheelchair, permanently paralysed. The only trouble is, 'successful' treatment means being periodically injected with botulism (sorry, Botox); there is no hard and fast rule governing the optimum dose; all the neurologist can do is make an observation of the affected muscles and stick them with the odious bacteria - at a 70% success rate. But I only found this out much later down the line when the NHS finally capitulated and signed me up for outpatients' appointments for the rest of my life.

I couldn't stay on that ward though. Most of the other patients had been there for months because no one knew, precisely, what was wrong with any of them. The tipping point came when, me being the only other smoker on the ward, one of the younger patients came over and asked me for a cigarette. Well, who was I to refuse? Outside, I asked how she ended up in hospital: 19 years old; over a year in that God forsaken place; and still no proper diagnosis. Then, being removed from the ward, and her one and only friend - the woman in the next bed over - because HER bed was needed for another admission. My head began to swirl; my speech, once again, became constrained; and my breathing, non-existent. Were it not for the girl screaming for someone to come and help I would have collapsed, right there, on the concrete.

So I discharged myself. I had worked so hard and for so long to be someone; I wasn't about the relinquish it all and end up as I was when I was 17: on the dole and living in bedsits. Thus, having arranged for John to collect me, and after spending an entire day and night sleeping, he took to the beach at Cleavdon. We sat on the promendade, eating my favourite: black cherry ice-cream, and I tried to take some photographs. But my neck and hands were not playing ball so John took them for me. Only he wasn't very good; he'd missed the light I was trying to capture. In the end, because I was tired and depressed, we decided to go home. I could barely manage the hill to the bus stop - a mere one hundred metres - and had to keep stopping to catch my breath. We got there eventually though; it only took me twenty minutes.

Twenty minutes to walk one hundred metres! I used to be able to cover at least a mile in that time before THIS happened. But today is not the day to be thinking about what I USED to be able to do; it is about what I am GOING to do. When we eventually arrived back in Bristol, I insisted on buying a new dress for the first day in my new job. John wasn't happy about this because he could see I was struggling. Only he just had to watch; I was the one who went round the shops, head permanently held in my hands so I could see in front of me, while the rest of the world looked on at this new curiousity which was now me. Nevertheless, I found my perfect dress: a brightly coloured, floral pattern against a white background; and perhaps a little too short to be used as office attire. You could spot from a mile away on that thing but I figured, if people were going to stare at me, it may as well be for something other than my unusual gait!

And so, sitting on the wall, in my new dress and playing over the events of the weekend in my head; watching the bees and wishing it was warmer, I can sense it is time to go. My life has been reset to zero, now that I know my brain will forever be misfiring. I am something quite different - I have to be something quite different if I am going to survive - but that is, or what it will become, I do not know. My one hope is that it will somehow make me a better person.

John has come out to say 'goodbye' to me and wish me luck. Judging by the look on his face, it seems as though he thinks I am really going to need it. Perhaps he is right, but I say it to him anyway:

"Time to show the world what I am made of...!"