Going, going, gone – how I lost my sight (part 1)

Hooray, it’s the weekend, so I thought I’d post something a little longer than usual. People are usually dieing to ask how I lost my sight; certainly, hardly a taxi journey goes by without it being discussed, and I take a lot of taxi journeys!! So, if you’re sitting comfortably, allow me to explain.

I had known that there was a chance that I could go blind from the age of 14, but blindness, like many other conditions, was something that I considered to happen to other people, not me. As a result, I didn’t give it more than the odd occasional passing consideration. When I did think about the possibility, I didn’t like the prospect very much at all, so I tried not to think about it. Reaching not too deep into the bag of stereotypes as portrayed by the media, I had thought that blind people could play piano’s and were good at basket weaving, but apart from that blind people just sat in chairs all day reading Braille books, listening to radio 4 and losing their dress sense. In short, as far as I was concerned, the prospect of going blind was unbearable with nothing to look forward to at all – no pun intended.

It probably sounds a bit unbelievable – I wouldn’t believe it if it hadn’t happened to me – but I didn’t realise that I was blind in my right eye for years. I often wonder if I was in denial or truly didn’t know. The problem with such a debate is how do you differentiate between denial and lack of awareness when you are talking about the mindset of a child?

I clearly remember from an early age being extremely self conscious, and the last thing this self conscious person wanted was to have to wear glasses. I knew how cruel kids could be to their bespectacled counterparts, and I was just as cruel as the rest of my school mates. Maybe my fear of wearing glasses was heightened due to the fact that my dad wears glasses and as far as I was aware always had. That might not be enough in itself, but my Grandma Lily also used to tell me stories of how my dad used to get bullied by older boys. Whether or not this had anything to do with him wearing glasses I do not know, but the image of a glasses wearing boy being bullied and being made fun of was well and truly planted in my mind. Therefore, I was only too glad to accept the school nurse’s verdict that I did not need to wear glasses when I had my eyes tested every year. I accepted what she said, even though my gut feeling was that she was wrong.

My first recollection of the school eye test was being able to see everything with my left eye and also with my right eye. The next year I could only see the top 4 lines or so with my right eye, and then the next year it was down to the top letter. By the following year I could only see a light with no distinguishing letters on it at all. Every year the usual suspects gathered for their eye tests. The nerdy kid with the lazy eye, the kid with the lisp and his national health glasses sellotaped up at the corner like Jack Duckworth, and the girl with her “sexy” pink national health glasses. These were not the kind of kids I would normally associate with at school. My mates would have eaten me alive if I was ever caught wearing national health monstrosities. So even though I knew the nurse was wrong, I accepted what she said like the self conscious immature fool that I was. I asked the usual suspects if they could see better out of one eye, and they said they could, which supported my choice of mindset that there was nothing to worry about. Every year I left the nurses room with a huge sigh of relief, “another years reprieve” I thought to myself, and returned to the classroom where I would copy from my desk mates book as I couldn’t see the black board from the back row.

The older Andy would say to the younger Andy, “why sit at the back then if you can’t see the board?” The young Andy would reply “don’t be an old fart, its more fun! ”, and I know the younger one was right. I wouldn’t have changed a thing. Not being able to see the black board was a small price to pay for not being labeled a nerd.

A limited field of vision often presented threats to my physical safety. One morning break, when I was 12 or 13, I was playing football on the school field, despite several inches of snow. Half way through the game, the goalkeeper kicked the ball out high into the sky. As the ball plummeted to earth, I decided to volley it straight back, top left hand corner would do nicely. I kept my eye locked firmly on the ball’s trajectory as I ran towards it. I planted my left foot, still focussing on the dropping orb, and swung my right leg with as much force as I could generate. The contact was powerful, but it wasn’t with the ball, it was with the face of CO’C who had stooped to head the target of my foot. The first time his presence appeared from my blindside into my field of vision was as his nose exploded all over my foot. Normally I would have apologised and made sure that the recipient of such a blow was alright. However, CO’C was regarded as the hardest boy in our year, often involved in fights with boy’s older than him and it didn’t usually take much to make him angry. The sight of the quickly spreading patch of brilliant red on the snow made me turn and run as fast as my legs could carry me. I spent days waiting for CO’C to wreak his revenge, but thankfully it never came. Perhaps this demonstrates the adage of if you’re going to hit somebody, make sure you hit them hard.

The exact time that I found out that I had serious problems with my eyesight was when I was about 13 and round at my friend CB’s house watching Tomorrow’s World featuring 3D television. CB tried out the 3D specs before passing them to me to have a go. They didn’t work for me, which his family all found surprising. They suggested that I might be using them wrongly, but everything just looked red, which was hardly surprising I explained as I didn’t see that much out of my right eye anyway. CB’s mum couldn’t believe me and retrieved a calendar from her kitchen, which she proceeded to use as a makeshift eye chart. The same old story played out in the living room as had been played out annually in the school nurse’s room: reading reasonably well with my left eye, before saying that I couldn’t make out any letters at all with my right eye. The atmosphere in the room changed immediately: they realised the gravity of this even if I didn’t. CB’s dad immediately drove me home after I promised that I’d tell my mum. It was like being chauffeur driven to the headmasters office. All I could think was that I was going to get done.

My mum repeated the simple eye test. On the spectrum of responses, I would place my parents response as swinging to and fro between ballistic and tragedy. A trip to our local optician and then Scarborough Hospital confirmed a problem, but they had never seen such a condition before.

Mr Martin at Leeds General Infirmiary had seen it before; non-vitreo fermilial exudative retinopathy, a condition which, apparently, four other people in the world had similarly suffered from, was his diagnosis. Mr Martin was able to tell me that those other four people had retained whatever sight they had at 18 for the rest of their lives, so not all bad news. Apart from the unspoken threat of further problems to come with my other eye, nothing had really changed; my sight was the same as it had been for years, so I didn’t really see the problem.

My three-monthly trips to the eye hospital were not enjoyable experiences though, for a variety of reasons. Firstly, it took forever to be seen; appointments were made at 9:30 am, but what with having to do an eye test, then have dilating drops dispensed, it was not unusual to still be waiting to see a doctor at 11:30 am. Secondly, having had dilating eye drops, it was not possible to read anything as your eyes could not focus, and as IPods hadn’t been invented and Sony Walkmen being expensive, this meant there was nothing to do to pass the boredom. Thirdly, having a very rare condition meant that all and sundry were invited to inspect my eyes. Seven or eight different doctors over a couple of hours became somewhat tiresome after a few visits.

One of the first tests I recall at the eye department in Leeds was a machine where I was required to look through two different lenses, the left eye looking at a picture of a kennel and my right eye looking at a picture of a dog. Using a series of knobs, I had to make the dog sit in the kennel. Although I had sufficient sight to just about make out what I thought to be the dog in my right eye, almost immediately after I had managed to place the dog in the kennel, it would start wondering off. I’d bring it back again, but after sitting obediently for a few seconds, it would start exploring the area to the right of the kennel.

The other test that stands out in my memory was having photographs taken of my retinas. In order to highlight the blood vessels in my retinas, these being the problematic parts of my eyes, I was injected in my arm with a luminous yellow liquid. Once this had circulated around my blood stream, the pictures would be taken. That part of the procedure was as unremarkable as the after effects were remarkable. On leaving the clinic, prior to the long drive home to Bridlington, I would visit the urinal. The effects of the injection were clear as soon as I started to go; the brightest most luminous yellow that I have ever seen. It was just as much fun as writing your name in the snow in the traditional male way, and due to its apparent gravity defying qualities, the results stayed visible for ages.

As my right retina was severely damaged, apparently my right eye unilaterally decided to squint so as to try to focus the light on an area of my retina which still had some function, rather than the focal point which was damaged. This was a very clever trick, but an unwelcomed one for a 14 year old boy, as it resulted in a boz eye!

I soon realized that having a boz eye was not something to be broadcast, and it was definitely not what girls were looking for in prospective boy friends, or at least that was what I thought. The result was a morbid fear of looking people, and especially girls, directly in the eyes as this was when it became obvious that only one eye was looking at them. The trouble was, nobody ever knew just which one it was that was looking at them, and which one was lazily wondering around the room on a mission of its own. If I’d of known what I know now, I could have spent many wonderful years overtly staring at certain parts of girls whilst protesting my innocence, but hindsight, like real sight, is a wonderful thing.

Instead, from the time I realised I had a boz eye until I went totally blind I attempted to avoid direct eye contact with anyone. I must have looked a right shifty character. If I had to make eye contact with anyone, the result was more often than not the same – people glancing over their left shoulder to see what I was looking at. I think that most people who knew me must have developed a crick in their neck. I’m surprised none of them tried to sue me for personal injury.

Between the ages of 14 and 17 I worked in a chip shop on the harbour edge in Bridlington, wittily named Harbour Fisheries. It was so busy that we had on occasions 7 or 8 of us behind the counter serving “Wessies” as the holiday makers were not so lovingly called. As an ex-West Yorkshire resident (from where the name originates) I wasn’t as anti Wessie as the rest of my work mates, but they still used to annoy me when I worked there. It wasn’t there insistence on continually complaining about the prices as it was a complete rip-off – the prices charged today are roughly the same as they were in the mid 80s, the only difference being that you now get more chips – or their ability to make the simplest of orders seem like quantum physics, but the fact that they were all cursed with the glancing over the left shoulder condition that seemed to beset anyone who came into contact with me. The reason for this was that as the distance between me and my victim increased, so did the likelihood that they would be struck down with the glancing over the left shoulder disease, and as the chip shop was so busy the queues tended to stretch to some distance from the till where we shouted out “Next please”. I always had to follow up my “Next please” with a finger point and a shout of “Yes, I’m talking to you!” Hopefully none of my victims have developed a morbid fear of queuing for fish and chips at the seaside as a result of my finger pointing and growling voice.

Whilst I wasn’t exactly an angel at school, I managed to avoid trouble with the teachers for the majority of the time. On the one occasion when I was seriously busted by the teachers, it was due purely to my lack of sight in my right eye; that and behaving like a yob. I can’t recall the lesson, but the teacher was not cut out to teach. Whilst I can’t recall her name, I do remember wondering why no-one was humming, or asking stupid questions, or talking constantly whilst she was trying to teach us, as was the usual way with such teachers. I thought I’d gee everyone up by cracking a few wise cracks and chatting with my friends on our table. My friends wouldn’t answer and kept glaring at me. I was only doing what they did every week, or to be precise, not even as much as they did every week in that class. I just couldn’t understand what was going on. As my head flew forwards, my glasses flew across the table and my brain rattled against my skull, I began to realise why they were all behaving themselves. Mr JCB, our year head who had been sat just behind me on my blind right-hand side, stood over me with a massive text book in his hand bellowing “for goodness sake, shut up boy”. I think I stayed bright red for the remainder of that lesson.

Despite all this, I didn’t regard myself as disabled in any way; I just got on with my life, playing all sports and having a fun time.

The threat of going blind was real, but it didn’t seem real to me; well, not for a few years anyway.

Check back here tomorrow for the second part ….

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