Those of you who skimmed through my ‘holiday’ blog a couple of days ago may have noted that there were lots of images but that it was also quite ‘wordy’. The images were for you – the words were for my cousin Des – he who is lucky enough to live with the endless blue skies (when it is not raining…) and infinite beaches of county Leitrim.
Des has lost 80%+ of his sight and is likely to lose more. He has ‘Inherited Retinal Dystrophy’….. ‘Inherited’, he says, ‘because I told them my mother was affected, and retinal dystrophy because the cells in the retina are dying off. Which, to me, is a good way of saying your retina are knackered but we don’t know why and as we have to put a label on it, here you go.’
For his description of exactly how he sees, see below. But effectively he doesn’t see in low light, has lost central vision in the right eye and has a small central hole that works in his left. I obviously cannot replicate this but I have tried to photoshop the image of a rose below – a cluster of four slightly overblown roses, delicate pale pink flowers shading to white at the edge, silky petals curling in on each other, individual little stamen sticks, each with a tiny blob of orange pollen balanced on the top; in the background dark green shiny rose leaves and stems, fuzzy paler green bushy trees and blue and white cloudy sky behind.
This is very rough idea of what Des can see if the light is poor. If the light is too bright the whole thing just becomes a white out. This does not really give the sandpapered effect that he talks about but is a sort of approximation. This is what he sees with his left eye –
And this is what he sees with his right –
So, obviously, sending him images is a bit of a waste of time. Now, therefore, if I am writing something that I think he might be interested in reading, I try to describe the images that I am using to illustrate the piece.
I am not sure how successful I am in creating a mind picture – I certainly hope I achieve something…. But from my point of view it is a fascinating exercise. Instead of just whacking in an image, I need to think about what it was I actually saw and photographed: the colours, the colour contrasts, the textures, the juxtaposition of the subjects, the movement, the salient details, the atmosphere.
That means that when I take pictures now, I don’t just point and shoot. Well, I do a lot of the time but I also find myself thinking about taking a view or details that will be easy to describe or which will paint a vivid picture for him.
And then I have to think about how to describe it. ‘Beautiful’, ‘colourful’, ‘exciting’ are all fine and dandy when you can see the image, but if you can’t, they tell you nothing. In fact they merely frustrate you as you want to know in what way it was ‘beautiful’, ‘colourful’ or ‘exciting’ and you cannot find out. So I am constantly searching for new words which will create mind pictures – and reminding myself that although I can perfectly clearly see, for example, the leaves behind the rose or the cloudy blue sky in the background of the picture of the rose above, Des can’t. So I need to track each detail and include it in my word picture.
Of course, writing for someone who has lost or is losing their sight is, relatively speaking, a doddle as all you have to do is trigger memories of what things look like. How you write or describe things for someone who has never had any sight, I have absolutely no idea….. I am assuming that you have to create a whole new palette from sounds, smells and textures.
Meanwhile, here is Des’ description of what he can see. And next time you wonder why I am blethering on about an image which you can see perfectly clearly, please be patient. I am doing so for those who can’t.
The symptoms are hard to explain. If I tell you how I’d adapt a pair of glasses to simulate what I see? Have you heard of polychromatic glasses which darken as the light gets stronger? Well, imagine that they work completely opposite to how they should. So the darker it gets, the darker the glasses become and the brighter it gets, the more light the glasses allow in. So you’re sightless in poor light and blinded in strong light. Then, assume these hypothetical lenses are wraparound plastic, with a piece of fine sandpaper, rub a circle around the central vision. So you can still see clearly through the middle and the extreme outside. And then slowly start filling in the central hole in the right eye. And once that’s done, start filling in the left, giving the diminishing central aperture a few brushes with the sandpaper as you go to make it a little misty. That’s where I’m at.
I think Retinosa Pigmentosa generally gives tunnel vision with a diminishing tunnel until all light is gone. I don’t think I’ll lose all light perception anytime soon so that’s good. But I feel I will lose the central vision in my left eye pretty soon.
Des and I on Dun Laoghaire pier a few years ago.