How I see the world
In September 2011, when I had undergone that vast array of tests and scans, the Consultant Ophthalmologist determined that I was right on the line between VI and SVI. It was only my right eye that had been tested because my left one was, and always has been, untestable!
With my left eye, I see strongly contrasted bright lights and dark shadows, but the shapes and silhouettes are very vague. That eye is ‘off the top of the scale’ in terms of the Snellen chart; indeed, unless it is very brightly lit in a very dark room, I can’t even work out where the chart is, let alone read any of it! That is how it has always been for me. It was first noted when I was a tiny tot. Back then though, it was deemed to be a ‘lazy eye’. So I endured a period of having my right eye covered with a patch of sticky plaster to try to make the lazy eye work. It didn’t! The only result was damaged front teeth from walking into a parking meter! As explained previously though, this never really caused me any problems and certainly didn’t earn me any registration or certification. Until, that is, this point when my right eye decided to go on strike!
In July 2011, as shown in the last blog entry, the Field Of Vision (FOV) printout showed a straight line division, vertically splitting my visual field in half with the lateral (outside) half completely defunct. At this stage, I was only beginning to experience fluctuations in acuity of that semi-circle of sight. On a good day, I would most definitely have ‘qualified’ to be registered Vision Impaired (VI)/Partially Sighted, but, on a less good day, I would tip into the Severely Vision Impaired (SVI) range. The Consultant decided that it would be in my best interests to err on the side of the worst case scenario and so filled in the forms to dub me Severely Vision Impaired. At the time, of course, this was a bit of a shock. Now though, I realise that he was actually very kind and helpful in doing that. The registration opens up some much easier access to all sorts of help and support. (I didn’t come to appreciate this until much later – perhaps a subject for another blog entry sometime).
Over the course of the next few months, I went back to the clinic for check ups and some repeats of tests and scans. Over this time, my FOV continued to shut down further to the little central pinhole that it is now. To add to the challenge, the bad eyes days increased gradually in frequency and severity, and became accompanied by pain behind the eyes. Mr Consultant really had erred on the right side of caution.
The cause of my sight loss? Well… The official entry on my Certificate of Vision Impairment says ‘Optic Nerve Atrophy’. This, in non-medical-speak, is because my optic nerves (the very specialist nerve fibres that carry visual input from eye to brain) have died and withered. The actual reason for this is a mystery. It seems that strongest theory in my case is Optic Neuropathy or inflammation of the optic nerves. The cause of this theory is equally unknown. The medical speak is ‘ideopathic’ aka ‘cause unknown’ or ‘it just happened’. I have my own very strong theory, all about artificial sweeteners, which I will address in a separate blog.
I shall now try to complete the picture (Haha – the English language is soooooo sight-centred!) of the way I see the world now. At least – in the literal sense – future blog entries will attempt to explain a little about the more metaphorical senses of this term.
When I deliver talks about my sight loss, I try to give a little demonstration as best I can. I hand out half-a-centimetre pieces of thin drinking straws for audience members to look through. In a smaller gathering, I might take a small drawing pin, or the stem of an earring, and pop the point through a post-it note or similar. That gives a reasonable idea of the restricted Field Of Vision. To try to represent a bad eyes day, I would suggest to take a piece of sticky tape and use it to dab some dust from a corner of the room (There is always a corner somewhere that the vacuum cleaner doesn’t reach!), then stick that over the pinhole.
None of these gives a true and total representation of my vision, but it is about as near as I can achieve when people are curious.
In reality, my eye moves, unlike the straw of pierced post-it. Scanning allows me to take in more of a scene than is easily done with the demo methods. However, the faster I scan around, the more blurred the scene is. It is impossible to fully describe it, let alone demonstrate it!
These three photos give an approximation of the perception of a room upon entering. A fully sighted person would take in the full view as in the first picture. For me, when I first walk in and do a quick scan around, I would see something like the second picture – ie a vague layout of the room but with everything very blurred and muted. My attention would naturally be drawn to focus on the bright light (in this case, the TV screen). As the photo attempts to depict, with this focal point, the rest of the room would simply be ‘not there’.
Bright lights really hurt and cause extreme starring effects, but dull light renders the view too dark to perceive. Beyond mid-dusk-level-light, I am totally blind except for the painful dazzle of bright lights (car headlights, for example, are excruciating and obliterating).
On a bad eyes day, the best analogy I can draw is that of viewing the world through rippling, murky water – rather like a canal as a boat propeller churns it up, or the edge of a rough ocean when the sand and silt is stirred up from beneath.
On a good eyes day, I can still read – but only with adapted display. My laptop is set so that all text appears to me (regardless of how it is sent) as either yellow or cyan text, verdana size 16 or greater, on a dark blue or dark purple background. This is expanded to fill the full 17” screen width.
I now also have software to magnify this further if needed (potentially up to 60 times zoom), plus a screen reader that speaks all the text to me. If I try to read ‘normal’ text, no matter how big, the black font on white paper or screen has weird shadows around it and it seems to swim about on the page. If really hard pressed, I might be able to read a sentence or two this way (but only in a large font), but it would be very hard work, painful and not reliably accurate. Newspapers, magazines, printed paperwork and proper books have long gone from my capabilities.
I have no sense of perspective or depth perception, so, when walking along a pavement, for example, a line across it could be a simple harmless crack in the tarmac, or it could be the edge of an abyss. Walking toward an ‘up-step’ (eg a kerb or doorstep) is better as I can at least gauge the facing edge. A ‘down-step’ however, is totally inestimable.
With no peripheral vision, I will often walk into anything outside of the very centre of where I am looking, which is usually downwards, assessing the ground as I walk; overhanging tree branches, street signs, advertising boards, bollards, rubbish bins, people, letterboxes, walls, door frames… If it is anywhere other than in my tiny window of vision, then I will inevitably collide with it. I quite like skin decorations and bruises are cheaper than tattoos!!
So this is the best description I can muster to give some idea of how I see my world now. This is ONLY my experience though. As I’ve said before, the range of ‘views’ is as broad and as long as the variety of people concerned. For some, their impaired vision may take the form of exactly the opposite of mine; in other words, they may have peripheral vision only and no central sight. For some, it may be a general uncorrectable blurring, for others there may be warpings and distortions, for yet others a splattering of blank areas, or black dots. Very few blind people experience absolute total blackness. Even total blindness can vary in how it is perceived. For some it is blackness, others would describe it as simply ‘not there’. I guess this is akin to a fully sighted person’s perception of anything outside of their normal field of vision: Most fully sighted people can see things to the side of their head as far back as approximately level with the front of the ear. Behind this point, if you are one of these fortunate folk, do you perceive everything as black or just as non-existent in your range of sight?
So, as I started by saying at the beginning of part one of this blog, blindness, or indeed sightedness, is a spectrum. It ranges from better than ’20/20’ or ’perfect vision’ to total absolute blindness, but within that range, there is an infinite variation.