“Nystagmus? Oh, you mean like astigmatism!” – revision 26ish – 14 July 2010

Nystagmus?

Some background?

Nystagmus is an involuntary movement of one or both eyes. Statistics are not definitive but it appears to affect between one and two in a thousand people. The BBC web pages on health suggest the only significant thing under “N” is nosebleeds.

There are increasing suggestions that undiagnosed nystagmus can progress to middle age and beyond. You probably know of someone with nystagmus but never recognised its distinctive symptoms. It should not be confused with astigmatism, which is an entirely different condition.

You would not be alone in confusing the two. Nystagmus leads to a tendency to turn the head to one side in order to find a null point where the shake is at its least and focus is easier. Often it’s that turn that creates problems rather than the nystagmus itself.

Astigmatism on the other hand is a blurring of vision. If I get blurry vision it is caused either by tiredness or the wind blowing in my eyes and making them water. I associate both blurring and tiredness with my nystagmus if only because having a null point about ten degrees off centre (to the right) does tend to put more stress on one eye when I am, for example, reading. Also, turning slightly sideways into a wind does tend to let it get behind the specs a little better and throw stuff at your eyes.

This article is no more than my personal version of a story you can find elsewhere on t’internet from others in the same, and often a far worse, position than I. It is a work in constant progress. At my last look I think it had undergone around twenty six significant revisions. You can surmise from this that perfection is some way away!

The “Shifty Eyes” blog is a good place to start if you want accuracy and brevity with a positive and informative slant. Like this article it is founded in personal experience more than scientific knowledge. This here article is not a place you will find brevity!

Editorial thoughts

What follows is extremely detailed as I have tried to do a number of things I haven’t seen elsewhere.

Firstly, I have covered my entire life from diagnosis upon starting school (or so I thought) to date. That’s (ahem) four decades. I could have skimped but the act of writing itself triggers memories and new insights and I want this to be my one and only (eventual) definitive statement.

Secondly, I made a conscious decision to put in as much detail as possible. You may notice this!

Basic descriptions of nystagmus are easy to find. Detailed descriptions of the effects are less so. The effects vary between individuals so there never will be a party line but many people pass through life with no diagnosis, or a diagnosis but no insight into the impact, so I wanted to highlight those things I attributed to other things like short-sight but which should rightfully be attributed to nystagmus.

Thirdly, I wanted to try and capture how the many tiny aspects of it can vary over time. What seems major as a child is inconsequential now but vice verse.

Fourthly, I made a conscious decision to make this a work in progress. However, the idea was to get it out there and tidy it up later. It may well turn out to be akin to painting the Forth bridge. As you’ll see later on quite a lot has changed for me on the eye front in the months since I started this so it’s nice to have a place to record it all.

Finally, I have yet to enable “Comments” for this post. I wanted to see where my thoughts took me. Once I am satisfied I have something near finished and I have linked appropriately elsewhere then I will welcome comment.

More background

Nystagmus is ultimately a minor condition with a disproportionate impact. Once you start looking its easy to find out about it. It’s less easy to articulate the impact as it often comes bundled with low vision and there are few ways to compare notes. You might never meet another person with the same thing. To date I have met a grand total of one to the best of my knowledge.

Mental ill health is often referred to as a hidden disability. In many ways that remains true. There is a stigma attached and you would not necessarily be able to judge that a person was in any way different to yourself just through meeting them. As a result of the stigma attached when it is revealed, or when it does manifest itself in public, many people also choose to keep mental ill health hidden. I’m not so sure it’s true any longer to refer to it in terns of being truly hidden though. It’s a high profile area for research, treatment and comment albeit that the latter often veers between uninformed to hysterical.

Nystagmus on the other hand remains hidden in a truer sense of the word. It often manifests itself in public but, especially if you have a distinct null point, shifty eye syndrome takes over. People assume that what you have, interestingly, is a different personality – suspicious looking, surly or, at best, distracted, ignorant, sceptical or quizzical. if you will – rather than a medical condition!

So, my story…

The 60s and 70s

Most versions of this article have stated that I was diagnosed with nystagmus not long after I had started school at around the age of five. I don’t recall the exact circumstances and I cared a lot less at the time than I do now.

It transpires that this was rubbish. A recent visit to the Department of Optometry at the University of Cardiff triggered a whole sequence of events documented in the “Noughties” section much later in this article. This included a conversation with my parents wherein I established that there was a problem from the off which was diagnosed as Nystagmus when I was about six months old.

I also had it in my head that i had been told that when I was born my eyes didn’t open for two or three days and that, in combination with very blonde hair (ah, those were the days) and pale skin, I came very close to being classified as albino. A myth or a misunderstanding apparently. My sister was apparently the one who refused to open her eyes.

That misunderstanding looks slightly different nowadays given that after 46 years I have since discovered via the University of Leicester that I actually also have ocular albinism; a lack of 3D vision and slightly more colourblindness than just the plain red/green I had thought.

Nevertheless, it remains the case there was no immediate effect obvious to me beyond wearing glasses between the ages of five and, I think, fourteen, and having various routine eye tests as frequently as every three months at the long since demolished Chester Royal Infirmary. My mothers version of this is that they were monthly for a short period; moved to six weekly and then less frequent over the years. That sounds about right.

I have a vague recall of some fairly strong eye drops but that’s pretty much it really. The visits became less frequent over the years and the glasses plus the visits went as I hit puberty. So, not so bad apparently!

Well, that’s putting aside the small matter of those wonderful NHS frames and the occasional niggly childish verbal abuse that suggested all was not as it should be. Certainly I could live with “Joe 90″ and it’s witty, more traditionalist cousin, “four eyes”. Mind you, “living with” is not quite the same as “enjoying”. My response was to be a sort of smart arse with a resigned air.

Joe 90 was something I had undoubtedly seen on television. Can’t say I was a fan but even minimal knowledge allowed me the come back that being compared to someone blonde and intelligent was no bad thing. This was generally an appreciated tactic. The slightly thicker aspirant bullies didn’t have a ready made retort and off I tootled. Analogy as weapon! Not to be underestimated!

Not all aspirant bullies are so especially thick as to let you off so easily as I found out years later. NHS frames had their uses though.

“Four eyes” was no greater challenge either although the assertion, doubtless picked up from someone else on the end of the same thing, that “four eyes were better than two” does seem to suggest that school bullying nowadays is far more traumatic.

Nowadays they’d be back at you within a second having Googled on their phone to establish that there was no actual biological or other evidence for your assertion before taunting you for such a spectacularly inept response. In those days though it was just about enough.

Beyond that there was nothing much really. All there was to remind me of my nystagmus was the occasional discussion with someone to the effect that I couldn’t see something because, well, because I couldn’t see it, and yes, I was looking where they were pointing! It was just that my head wasn’t.

Retrospectively of course I can now see that my lifelong struggle to read the handwriting of other people was not just a minor foible. It was simply the case that someone with nystagmus can struggle to focus for long enough to discern the difference between a, o and e and probably some other letters too in the same way that we often struggle to work with a Snellen chart when forced to look at it through lenses that don’t allow for our null point. Obvious when I think about it now but it took me thirty plus years to realise that so what chance that the medical profession get this kind of stuff?

That head turn makes me wince when I see it in old photographs now and yet in much the same way as ignorance is a boon for those with mild tinnitus but unexpectedly annoying in others, so a null point is critical for those of us with nystagmus and yet causes the most grief from others.

Periodically I was hauled off around the country to some specialist or other who would confirm after the same old tests and much appropriately quizzical staring into my eyes that I had nystagmus and there was nothing to be done. Don’t ask me where or when. It may have only been the once. I just recall a trip to Mansfield and the ceremonial handing over of a dead rabbit or something as some sort of arcane payment of a debt to a friend of a friend. Clearly there was something badly wrong in many many ways if game had to be used as bribery for a medical appointment! I’ve always had a bad vibe about the NHS since then!

As an amusing aside I decided to raise the above with my Dad to see if I could firm up the facts on the above. There was a short debate over the telephone about whether the rabbits were in fact rainbow trout before it was agreed that they were in fact a pair of rabbits. I think my Mum had some input on this (the debate not the bribe) but who knows. He then explained that his Sri Lankan friend, Nada, had a family friend in the Nottingham area who worked in the Mansfield hospital alongside a colleague, who may or may not have been Indian in origin. We managed to establish the name of the latter for the purposes of this article but I promptly forgot it. The latter was the eye specialist. I suspect i forgot their name simply because the former, amusingly, appears to have been called Dr. Poops! One can only hope this was some 197os “Love Thy Neighbour” type approximation of his name rather than the real thing. I rather hope his specialty was not what it appears it ought to have been. Anyway…

Whereas the tinnitus I acquired late in life had am immediate negative effect, the nystagmus, which has pretty much been a lifelong companion, has tended to creep up on me periodically and then get rationalised away.

In part I suspect this was because the short-sightedness that came with it was far more debilitating and immediate in its effect both for me and the reaction it provoked in others. Even the occasional memorable incident couldn’t force me to deviate from this belief.

So, the doctor who suggested I’d never play sport with anything below the size of a football, truly stuck in my head for years and eventually came to be the vindictive hate figure I finally proved “wrong” in my thirties when I won a winners medal in a small end of season eight a side football tournament.

The truth of the matter is it was an annoying comment at the time but more for what it represented than as a lifelong challenge. It was a convenient totem to hang my moment of glory upon when it finally arrived. I hope you will allow me to further gloss over the fact that triumphing over a mix of middle aged fat blokes, deluded teenagers and the occasional ex-pro is quite rightly not going to be seen as the triumph of good over evil I would love it to be. I was pretty good that day though!

Sport in general is a struggle for anyone with nystagmus. Maybe I am just not very good at sport but over the years I have learnt that whereas I have absolutely no chance of participating in squash I can get by in a game of table tennis. Same size ball you may be thinking to yourself. So what can be the difference? Well, in squash it travels a much greater distance and requires constant refocusing. In table tennis it might move quick but it requires very little refocusing. It moves over a much smaller distance. This might not apply to everyone but it certainly applied to me.

Similarly with badminton. I was fine up to a certain level and could also live on instinct to a degree but, there came a point when generally I lost sight of the shuttlecock and that was that.

Football was interesting in as much as I could get away with being a five-a-side keeper as I was defending a small space and hardly needed to move or refocus. Playing outfield was different though. You quickly acquire a reputation for being a dirty player for late tackles often, admittedly not always, caused by slow focus and the consequent slow reactions. Unfair perhaps but also inevitable.

Interestingly, I was generally right footed but my preferred position was left back. In other words, my null point, ten degrees to the right as I mentioned earlier, instinctively made me want to move left and have everything on my right. It’s an instinct I successfully fought on occasion in later years but fundamentally it was probably the best option.

Running looked easy but only on a single road where you didn’t have to cross over. Better in the gym perhaps but bear in mind these are retrospective observations. At the time I had next to no insight. Anyway, I digress. Back to medical things…

The trip to Mansfield, I think, also yielded one of those sharp jolts when it was noted that I could have been significantly improving the bad squint and turn of my head if I had only been given exercises when I was first diagnosed. Well, thanks for that. All those apparently wasted years of name calling. That makes me feel good.

The 1980s

Actually, the exercises amounted to no more than “try and straighten your head when you remember and can be arsed to do so” (I paraphrase). This is not easy in public as your eyes water badly and then you get into that whole new realm of taunting around the idea that you are clearly crying and thus a “cry baby”. In practice, the exercise translates itself into “holding your chin in line with your shirt buttons whilst watching a film in a darkened cinema”.

Thus was achieved the triple whammy of making your eyes water; missing possibly key parts of the film and irritating fellow cinema goers as you attempted to stop the watering with increasingly frantic and exaggerated eye rubbing. Additional complications were added by the fact that an arcane explanation was always requires for solo cinema attendance when a teenager. Oh and the fact it didn’t bloody work anyway. I have probably set great store by it over the years but equally likely I tried it on no more than three occasions and simply became aware that I could, with some effort and some very real eye watering, look straight at things. Sort of. Nowadays there seems plenty of obvious evidence such exercises don’t work. What price that rabbit eh?

One of the things that sitting in a darkened cinema did clarify for me was a specific side effect of having a null point. This was the moment I realised that, as already mentioned, I prefer to be on the left!

What I mean is that my null point is apparently ten degrees off centre to the right so I turn my head to the left. Interestingly, this means that no matter what I am doing I prefer to be on the left hand side. I suppose this is logical but it manifests itself in very odd ways. I am never comfortable sitting immediately behind the driver. Now I know why! I prefer to sit slightly to the left of my PC screen. I prefer to sit slightly to the left of centre in the cinema and even when I am sat on a sofa I find myself preferring the left. I suspect I would have problems with Feng Shui!

Finally, no surprise, although it surprises me when I think about it, I sleep on the left hand side of the bed! Who’d have thought! Annoyingly, when I finally got the big TV that on the wall that enabled me to position the hi-fi speakers where I wanted them for perfect stereo I found myself not only buying the Beatles In Mono boxed set but also sitting, unconsciously, to the bloody left!!! However, a little more of that later.

The RNIB stuff suggests that sitting to one side somewhere like a classroom is of no assistance and can lead to a crowding effect in whatever you’re looking at. This is logically undoubtedly true. All I can add is that, in my case, it has always helped. It may be a false positive or a placebo but placebo is a very powerful and much misunderstood thing.

Massive diversion alert – look away now if you don’t wish to go off on the first of many large tangents.

I recently read an article about how people with dyslexia found the absence of the crowding effect on iPhones aided the reading of books. Given my recent discovery that reading the Observer on the Guardian iPhone app is actually easier because of, i assumed, the ability to increase the font size I’m now wondering whether in fact it has more to do with the lack of a crowding effect when using a flat screen.

After all, whilst I can move a book as near to me as I need it to be, it seems sensible to assume that I can never get it entirely perpendicular to my line of vision despite the act of bringing it closer effectively increasing the font size.

Oddly, despite a lifelong dislike of hardback books, I have started to buy them in increasing numbers. In part this is undoubtedly because of an increasing impatience on my part caused by the gap between reviews of hardbooks and the issue of the paperbacks. However, I do wonder if it’s also because it’s a little easier to get a stiff hardback page at a right angle to my line of vision in comparison to a paperback.

At sixteen I did O levels and had little real difficulty as I recall. Doing my A Levels two years later I was offered and accepted ten minutes extra per map reading question in geography. A total of thirty minutes in all. Totally unneeded because neither I nor the school nor my parents had a grip on what was actually needed, if anything. I enjoyed the chit chat with the geography teacher during the extra time my eyes should have apparently been watering onto a magnifying glass.

I got a C. I’d love to tell you that the extra time was the difference between that and the D I would otherwise have obtained but I simply don’t believe it to be true. I suspect i was a C student anyway. I moved on.

Even at eighteen with all my friends passing their driving tests whilst I languished unable to read a number plate at twenty something yards I couldn’t rouse myself to even think it was the nystagmus. I was short-sighted. So were lots of other people. Such is life.

Underneath the surface something else may have been going on as I found myself massively irritated by friends driving their new vehicles barely three hundred yards down the street instead of walking (presumably self-righteously) like me. I should clearly have been grateful given that it was me they were coming to collect! Instead I was irritated by some aspect of it. Maybe I just didn’t want to admit I was resentful.

Public transport became ecologically sound in my eyes long before it became a fashionable view. That I had little choice could always be glossed over with the assertion that I would have used it anyway even if I was able to drive. More true to say I came to appreciate its merits – which are many, much maligned and misunderstood – having been given no choice.

Also true to say that I would not wish to drive even if I could pass the test. My judgement is that, regardless of any test, my eyes are not up to the task. The need to focus on the road, check mirrors, signs and deal with stuff in the car requires focusing skills I simply don’t posess.

In our household the word used was nystagmus. The words in my head though were “short-sighted”. Even when I began to take a much keener interest in my condition it took me until my forties before I realised the two were not entirely connected. Why was I always the person sat on the floor a few feet closer to the television so I could read Ceefax? I was short-sighted. Of course.

Indeed, in terms of reading I have always thought of myself as predominantly short-sighted. I’m sure lots of people worry about this but basically, bearing in mind the need for sensible breaks, I read all day during the working week and on the bus to and from work. It’s just that my reading involves a sideways squint at a book or document that I tend to hold fairly close to my face. That makes me a secret agent or just weird in the eyes of many people. That though is their problem. Provided I look after myself reading is not a problem for me in itself. There are aspects that complicate this such as the interaction with numbers or close and small type but more on that later. So, how come such a minor thing merits so many words? What changed?

I think, and I honestly cannot be sure, that it was simply that the series of incidents simply began to point me towards some inevitable realisations. A tipping point if you like although, as tipping points go though there was hardly a “Eureka” moment. More a bit of a “Doh, how could I have been that stupid?”.

The 1990s

First of all, sometime in the early 1990s, I represented someone at a social security appeal tribunal who was trying to get the Mobility Component of Disability Living Allowance. Their basis for appealing was that they had nystagmus.

I should at this point highlight the fact that, yes, I do work and have done so in a paid capacity since the mid 1980s. How long this scenario will last in the current climate is anyones guess but in order to retain my career I had to look away from my home area of North Wales because, whilst not especially rural by some standard, public transport is simply not comprehensive enough to facilitate an endless choice of careers. Thus I found myself pursuing my chosen career in the Greater Manchester area.

After eighteen years I am still amazed at the number of people who insist that they have to have a car for work as it’s impossible to get to some parts of where we work without one. Really? A little inconvenient maybe? Requiring of some planning? Yes. Impossible? I don’t think so.

Work does make you think very hard about how you look after your eyes. People who are worried about whether their child with nystagmus will ever work generally need not be. However, it’s fair to say that a disorganised person with nystagmus is not a good mix. Again though, the penny drops with a lot of these things after a long time. In my case, for example, it has taken me until now to appreciate that the reason that my desk is incredibly tidy has little to do with being anal about it or having mastered the art of delegation (well, er, maybe) but plenty to do with the fact that if I spread documents all over my desk in the manner that most people do my eyes simply can’t focus efficiently enough to retrieve what I’m looking for.

Anyway, back on topic!

On one level it had simply never crossed my mind that it was a disabling condition to a degree that it might be an option. Don’t ask me why not. I truly have no idea.

I mentioned that I too had nystagmus and began to reel off the ways in which it affected me more to get a dialogue going than out of any great empathy. I started with a list of things that were more around short-sight but soon found myself with someone nodding their head and egging me on as I worked my way through slow focus, social awkwardness, the need for good light and so articulating on their behalf things which they, until now, could not and which I, until now, had not.

Oh, did I mention the nodding head thing? People with nystagmus often have some kind of nodding head syndrome whereby they are unconsciously in a constant battle to correct their wobbling eyes. Combined with the struggle to make and keep eye contact it makes social interaction a battleground occasionally rather than a pleasure. “Surly” rather than “concentrating much harder than you could possibly imagine”!

Even now I have vivid memories of describing spontaneously to a tribunal how I, as a person with that very condition, could see just as far as the average person with short sight and using as my example the plane flying past in the distance above the tower blocks we could see out of the window just at that moment. I could see the plane but, if you’d been looking, you’d have seen it before me as it takes me much longer to focus. You’d have pointed to it and complained I wasn’t looking in the same direction as you and that’s why I couldn’t see it. You’d have been able to follow it for some considerable time until perhaps it went out of view. I would be struggling to keep my focus on it now I’d found it. You’d be wondering why I appeared disinterested in what you were pointing to. Now, translate that into trying to cross a busy road with which you have no familiarity!

Suffice to say the appeal was won with minimal preparation and I had been given some food for thought!

I mentioned the appeal and my condition to a colleague. Successes are always attributable to individual prowess, so brag whilst you can. Whilst failures are always someone else’s fault, they are also always around the corner.

“Nystagmus? Oh, you mean like astigmatism? I’ve got that.”…

I’m not sure what took me most by surprise. Was it the confusion of the two conditions or was it that I stood there and nodded my head in meek agreement. “Yes, that’s what I meant. Silly me.”. At the back of my mind I suspected, no, I knew, it was wrong. We were talking about two entirely different things. So why didn’t I simply say so?

How embarrassing. I was in my mid thirties and for all the work I’d just done on that appeal I realised I knew barely more about my own condition than others and that the social awkwardness I and others put down to my personality actually ran much deeper than that.

Sometime after this I made some enquiries via my GP and was referred on to opth… oh whatever they’re called. The eye people. They apparently like rabbits! Highly appropriate for those of us who have been referred to as having “rabbit eyes”!

I can’t recall the exact (bad pun approaching) driver for this but I recall it as an attempt to establish once and for all whether I would ever be able to drive.

Why it had an air of finality I have no idea. Why it was centred on driving at all is a subject on which I can cast little light. Maybe someone who knows me can cast some light. I’d had twenty years or more to get used to the idea of not driving so why the last grasp at it just then is a source of intrigue to me now.

My best guess is this was, in part, related to a job application with a requirement to drive. Regardless the answer was a resounding “No, you are not going to be able to drive” and I kind of knew that already. Theoretically nothing had changed but for some reason it did and I had another small leap in terms of awareness of all the ways nystagmus had impacted on me, my lifestyle, my work, my personality, my tiredness and so on. In todays’ parlance, and this was still pre internet, I became an “expert patient”. How little of an expert patient I actually was has only been revealed during the course of 2010 although to be fair that was also the point when I discovered just how little expert medical assistance I had been given over the years.

The world would obviously be a better place if more people truly understood the intricacies of any of their health conditions. No more conversations confusing one thing with another for starters!

Unsurprisingly though the real impact lies in getting a further understanding of the things you need to function. This manifests itself in demanding things from yourself albeit no more than supposed common sense. However, what we all know and what we then do on a daily basis are often completely different so, as much as anything, they’re worth listing here for my own benefit as much as others. I guess the reality is that years of lacking both the knowledge and confidence to advocate on my own behalf mean that even though I now have both there is still a psychological barrier to be leapt.

My relatively short and undemanding list included an appreciation that I really couldn’t function when my eyes were tired as the shake worsened and made the slowness to focus much worse. An understanding that this really did mean taking the regular breaks experts demand we take from our computers. The need for natural but indirect light i.e. not in my face as the eyes water and the attempts to stop this actually bring eye function to a halt for quite a while. In the absence of natural light then really strong artificial light. You’d laugh if you saw my house on this latter point. If I was following this to the letter then I’d move the study into the toilet.

Then we have the stuff around font sizes. Make it big and I won’t strain. Keep it small and, until this year, I would rarely complain (I am a very, very slow learner but I do at least stay learnt!). I will oblige by simply squinting around six inches from the screen. Yeah that works!

Did I mention I struggle with strings of zeroes? Have to turn them vertically to read them. Probably just as well I’m not a millionaire. I wouldn’t be able to keep up! Surly and occasionally innumerate. I guess that would make me an economist in the current climate! The RNIB suggest that spreading out or separating long strings of digits can assist – using commas is the most obvious thing – but personally I’m good when there are lots of zeroes with or without commas, at least I think I am, up to a thousand. It’s when the numbers get bigger and include zeroes that it all goes wrong, commas or not.

Combine the problem with fonts with the number problem. Put it in a romantically lit (or dim as I would put it) restaurant and i hope you can see the potential problem with something as simple as reading a menu. Now add in a lack of eye contact and the general impracticality of sharing any document when you have a null point and, hey presto, a simple social situation is at best irritating – I’ll have what you’re having if only because you can read the menu! – and at worst a mini trauma where the customer is not always right. They are annoying and a little odd.

Now imagine a day in work. Getting to work involves stopping a bus even though you can’t always guarantee it’s the right one! I moved home seven years ago and this was nicely timed with a deterioration in my eye prescription which required a certain amount of adaptation on my part.

Heading to work I have a choice of two buses. One is a double decker and fast. The other is a single decker and takes a circuitous route. I generally prefer the latter as, however enjoyable the working week may be, I don’t want to rush there, and, I get more reading time too. So, heading into work in the light Summer months there’s really no issue. I can’t read the bus numbers until the bus is virtually upon me but I don’t need to.

Coming home is slightly different. Again, light Summer months, no problem but, as the mornings and evenings go darker, it becomes increasingly harder to distinguish between buses. When it’s light I can wait at the one bus stop which has about five different buses stopping there because I can relatively easily identify mine from a distance.

As the light grows dimmer though through Autumn and into Winter I have to move to the bus stop around the corner where only two buses stop. The latter are single deckers but generally easily distinguished as being from two different companies. Granted the latter stop has no shelter but that could applies to anyone using it, and to the network in general, not just me.

I think this is nicely illustrative of nystagmus. The above is a small thing. A tweak to my routine and no more, but, I do have to think about it. The world of someone with nystagmus is full of such small adjustments. Thus my comment earlier about the disproportionate effect. Small things add up and pervade every aspect of your day. It’s often just a matter of capturing and defining your routines but it still has to be done.

Once in work, there are conversations where you can see people think you’re thinking other than what you’re saying because your eye contact is nil. Better still they think you’re not even listening. Thirty emails a day or more where you need to lean in ludicrously or resize all the text before you can read it. Meetings where you have to ensure you’re the one with the minutes else you have to pretend to share.

Typing is interesting also. I am no qualified typist. Self-taught and fast, my instinct is to copy what others do when they type. Watch a typist and you will see them casually flick between a document; the screen and their keyboard. I can do that too. When I stare at thwe screen as I am now doin doing as I tupe this, then the foregoing is the reys this spelling is the result. Apologies if you didn’t quite follow that. It’s a completely unedited version of what happens. That was my point!

Now, if I try to type whilst staring exclusively at the keyboard what you get is ptretty much spot on or at least less time-consuming to fix. The spellchecker is much derided. For someone with nystagmus, they may not even realise it, but it’s a crucial support to everyday life.

In fact, in typing this I have probably analysed what takes place when I type more than ever before. I suspect what I do is to type whilst looking at the keyboard and then look at the screen at the end of sentences or paragraphs. In other words I behave like other typists but cannot glance upwards with the same frequency.

Clearly this should not be an issue and yet situations do occur where it is as well to understand what is taking place.

Any situation where I need someone else to see what I’m typing as I type – for example staff supervisions or joint preparation of things like presentations or minutes – means something has to give. Talking to someone means facing them. Typing means facing the keyboard. Inevitably my typing falls to pieces. It took me a while to figure it out. I hope the above explains it.

If this sounds bleak or negative that isn’t the intent. People don’t know this stuff unless you tell them. There aren’t many of us telling you so it’s going to be a long haul. The context must always be though that I work full time in a well paid job that I generally enjoy and have a commitment to. I spend five days a week in front of a computer and there will always be people a damn sight less productive than me. It can be hard and it can be exhausting when all these small things add up but the fact is most people with nystagmus do just fine in many, many ways.

Anyway, back on track…

Getting around to reading the NHS booklet undoubtedly pointed me in the right direction at this time too. Actually, it might have been from the RNIB! I can certainly find no current booklet from the NHS.

You’ll gather that one of the reasons I’m documenting all this stuff is that my memory is screwed.

There’s lots more like this. I’ll come back to it some other time. Suffice to say that my self awareness on the subject of nystagmus was further heightened by the tinnitus acquired in the late nineteen nineties, which I detail elsewhere. No idea what took me so long but for a while I was a veritable whirling dervish of knowledge acquisition. Not that it initially got put to much use beyond self awareness as I previously noted.

The Noughties

A relative then rang out of the blue to ask if I would mind giving up the relevant bits of my medical records as he suspected his son had nystagmus and had a geneticist on the case. I was happy to agree. Wow, genetics. That’s taking it seriously I thought. I barely gave it another thought. I could at least reel off the potential long term implications I thought, proud of my new bottomless well of knowledge.

It was irrelevant. He had something else.

Then the headaches restarted.

I’d had them as a child. I now know that it was when my eyes were over-tired. I adapted seamlessly and unconsciously then by becoming an indoor, bookish sort of child minimising physical exercise. I also used to fall asleep in cars quite a lot as the headaches started. Now I understand that was because even the effort of watching the world go by for an hour out of a car window requires an amount of focus that can easily wear you out. Focusing on a book or something in the car instead was no less of an issue.

Now however I really had no idea what the problem might be. A quick visit to Boots sorted that. I had nystagmus. I was middle-aged (yeah, thanks for that one!) and my short-sight had become long-sight. I needed glasses once again.

No problem with the latter bar the cost but whoah there on the long-sight. Now I couldn’t wish the nystagmus away. The last pretence had gone. My problems weren’t driven by short-sight. It truly was the nystagmus.

Again a small leap in consciousness as I began using my now, relatively old, knowledge to ask for a little more from others.

I asked for the best lit room whenever there was an office move. I quietly, for me, suggested that a larger PC screen would be helpful to minimise my need to refocus when I had to scroll documents left to right or up and down. More recently I have started tio email out in sixteen point. Some day soon someone will wonder why and will email back in similar.

Hey, once I got the bigger screen it was a matter of time (oh okay, several more years if you insist upon accuracy!) before I discovered there were others like me out there. How scary, for you anyway! Entire networks of us, waiting to mobilise. No, I digress. That’s my screenplay! More accurate to describe the information out there in cyberspace as minimal but useful.

It was through this route that I began to truly realise the impact nystagmus has had upon me by reading about the effect it had on others for the first time and contemplating the further ways I could improve my day to day existence.

I had, for example, spent several years craving a large TV screen on the lounge wall if only to be able to finally locate my hi-fi speakers to fire down the room instead of across. An annoyance caused solely by the effect of said speakers on an ancient but excellent Sony CRT television. Magnetic fields are fascinating things.

Now, the thought of such a TV does tend to provoke extreme reactions in people. Some are filled with horror at the sheer size and ostentatious nature of them. Not an unreasonable response in some cases I must say although i do think that large screen televisions are just the VHS of the noughties if we were having a discussion about relative poverty. The more extreme version of this is the lovely description of them as “chav technology”.

I suspect few people register the fact that for many people these modern technological behemoths also serve another purpose. Some of us can finally see the damn thing!

Indeed, whilst I was busily craving my TV merely for lounge rearrangement purposes it did suddenly occur that it presented a solution to another of those problems I had once attributed to short-sight – watching teletext.

Now, this might seem a minor thing. It is a minor thing like almost everything connected with nystagmus, but I have spent my entire life on the floor, at least when watching television that is! I can, at a push, sit on a sofa and watch a drama. That would be watching in the loosest sense, where following the dialogue and having a general sense of who said what, can get you by.

It all comes undone if you mention some detail outside of that. So, if there was a hairstyle to be remarked upon I was probably not your man. It comes well and truly undone when it came to watching sport. Football especially was like watching a kaleidoscope. Lots of moving colour. Not a lot of detail.

The icing on the cake – teletext. I started with analogue in the happy days when Oracle was much more than a programming language, albeit not really much more. If I wanted a quick summary of the news or to comprehend any of those subtitles on The Wire then it was simple. I had to sit or lie on the floor about four or five feet away from the telly.

One of many little quirks that makes you different to the rest of the world. Strange as it night sound, and it certainly did to me, I was quite emotional the day when the very large box clogging up the lounge became a very large digital picture frame. I had to check a few times but, yes, I really could now sit on the sofa and read teletext just like the rest of the world. Football and hairstyles? No longer an issue.

The rest of the world does read teletext doesn’t it?

Discussion of watching television brings up two other interesting angles (and let’s face it this is all about angles).

Firstly, the issue of wearing glasses or spectacles. In my early years, and even when resuming in recent years, I have been used to wearing one pair of spectacles. Now this year for the first time it was suggested that I needed a reading prescription and a general not bumping into the furniture prescription.

This could be be resolved by use of varifocals but for a person with nystagmus that is not necessarily an option. Put simply, my eyes cannot refocus quick enough or hold one position long enough to be able to use varifocals. So, I wander around with two pairs of spectacles.

The cost of this is annoying. Even more annoying is the fact I scratched a lens after dropping the reading pair yet again as I swapped them over.

I can still read with them so, whilst they look a little odd, I refuse to replace them. I have a nagging suspicion dropping them as I swap them will become a relatively frequent occurance so I find myself perpetuating the perception I’m a little odd.

Of course I have to swap with great frequency. Time to brew up for my office and I need to swap specs. Forget to do so, or think I can get away with either pair, and a collision with the furniture is inevitable. It often has a comic element – people wonder why you keep making the same mistake, how stupid are you? – but ultimately it’s a function of the gift of slow focus from mystagmus

There are other by-products. I use a clip on thing so that I have one pair hanging from my shirt and one pair on my face rather than constantly getting a pair out of a case. This prompts questions along the lines of “what’s that badge you’re wearing?”. An explanation, however brief, produces the sort of look that anyone with nystagmus will recognise sooner or later. A sort of “No, that can’t be right can it?” look! Another thing to hang the “he really is a little odd” perception on.

I also have difficulty deciding between the two. Only when I stare into the distance and swap between them can I definitively tell the difference. Again, you get that bewildered look. There can’t be a need for two prescriptions can there if they’re so close together?

The other interesting thing about television watching is that I have the sound coming through my hi-fi. My hi-fi and my love of music are important to me. Music came first and always will. Hi-fi only came when money arrived but it begs a few questions.

I would be interested to know how other people with nystagmus find this, but there’s no great history of musical obsession in my family so I have often wondered where my love of it came from. I can offer up many explanations and justifications but the one that I find interesting is the view that I have sometimes seen expressed elsewhere that people who are deficient in one sense place a greater reliance on another but also find their other senses heightened in some way.

Given the title of this blog I am reluctant to say this but whilst I suspect “elsewhere” means in a tabloid newspaper I also see some common sense to the argument. Clearly if I were blind I would rely far more on my hearing and that would fine tune itself. At least I hope it would! Theoretically it could be the case that slight loss of sight might lead to a not just a slight increase in reliance upon my hearing.

I don’t buy into that, as an increased reliance doesn’t directly relate to developing a love of music, but I have given this much thought to this over the years and have long ago concluded that at least one of the reasons I put such great store by what people say is that my lack of eye contact means I cannot rely on visual cues to judge mood, aggression, honesty and so on.

Becoming more finely tuned to what I hear could perhaps have led to my better recognising the emotional cues in music but then other people are perfectly capable of doing that. Therefore, my evidence for this is basically my own experience and so no evidence at all. It’s a nice idea though!

Bringing things up to date, it was from these online networks I mentioned earlier that I began to take a keen interest in the current research taking place in the UK and elsewhere. The forums are barely alive in terms of numbers but crucial information lurks within. More medical research is going on out there than I imagined. It also appears to attract less quackery than say tinnitus but then it’s a minority sport so far. A bit like Apple Macs and their supposed resistance to virus attacks. You just know the potential is there.

That kind of explains how I ended up in Cardiff in April of this year being effectively cattle prodded in the name of research by a TENS machine and Philip Jones within the grounds of the university.

There has always been an assumption based, I am told, on limited previous research that nystagmus worsens with stress. This research aims to confirm the link. It’s not over yet but I’m confident the outcome will mirror my experience. I hope it does. That hurt!

It cannot be a coincidence that subsequent reading matter has led me to Dr. Ewan Cameron and the CIA learning how to torture!

Of equal interest is the surgery that can for the first time be undertaken and which appears, if not always, to make perhaps not the greatest difference but significant enough to change lives. It’s called a tenotomy and, whilst the thought of having anyone operate on my eyes triggers a certain amount of fear, it is offset by my amusement that the worst outcome is either total failure or a complete reversal of the null point. Squinting one way instead of another hardly seems the worst thing that could happen and could make for an interesting social experiment with those who have only known the previous sideways look!

Inevitably I went back to Cardiff later in 2009 to assist with further research into which letters of the alphabet are best used to test Nystagmus (at least that’s what I think I was helping with. It may have just been a very abbreviated spelling test!) and now in 2010 (are the noughties now officially over by the way?) I have just visited once more to have some 3D scans of my retina taken for research purposes. This, to say the least, has opened something of a can of worms!

Should the opportunity arise I may well put myself forward to participate in further research. I’d certainly like the surgery. Not sure about drugs though. Is there a logic to that? Probably not.

It’s been a long journey but I currently find myself comfortable with handling my nystagmus and able to analyse and write about it. Talking about it has always seemed difficult as attempts to do so can be met with indifference or incomprehension. Maybe I’m just a dull conversationalist? However, for the first time I am even considering attending a conference on the subject at some point in the future so perhaps some like minds will finally overcome this one for me. This assumes I can find a conference! I have started to occasionally hang around and (even more occasionally) contribute to online forums on the subject and find an increasing awareness of precisely the sort of small issues I have detailed here. Does having nystagmus influence back pain caused by buttering toast was a good one. It looks bizarre but, yes, actually it is a good point.

So, you can see that nystagmus pervades almost every aspect of my life but all the things I have described are in themselves small negatives. There is nothing that say the parent of a newly diagnosed child should feel anxious about. It takes some thought to manage it, and emotional and physical support in areas of life that really aren’t obvious unless you understand the practicalities, but I got by even before I gave it that thought and acquired that understanding. I just get by better now. Hopefully the resources and personal stories like this one that are now available will go some way to informing of the many issues and convincing others that they can do the same.

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