I was a journalist on the Financial Times for nearly 25 years, until I took voluntary redundancy in 2005, owing partly to sight loss. I could no longer see to do the job I had loved, so I decided to accept redundancy — in one of the many waves of cuts that swept through the newspaper industry. I am a volunteer Church of England priest. I am training to be an icon painter. 

Please tell us about your visual impairment, when it started and the name of the condition.

• Advanced glaucoma 

• Retinal detachment 

• Inherent severe short sight and astigmatism 

Advanced glaucoma Primary/secondary open angle glaucoma Right eye worse than the left eye Right eye: advanced glaucoma Left eye: more moderate glaucoma I have about 50% visual field loss in my right (dominant) eye; thankfully much less in my left eye. My glaucoma was diagnosed in 2007. It was controlled on drops until it rampaged out of control two years ago, when an eye check showed I had lost half the visual field in my right eye. Thankfully both eyes now appear to be stable, and the pressures under control with drops, after first laser treatment in my right eye and then — thankfully, successfully — a 2 combined Baerendt tube and patch and trabeculectomy in my right eye in February 2020. 

Detached retina I had a detached retina in my right (dominant) eye in 2004, suddenly. It was a big detachment. I was told at the time that: “It will be a miracle if you ever get any sight back in that eye.” And again, most thankfully, I did get sight back in that eye. I had first a sars buckle and then a vitrectomy, with a very large bubble. I then had a lens replacement in first the right eye — which had had the detached retina and the “miraculous” surgery that had also damaged the lens. I then had a lens replacement and a “piggy back” in the left eye. It was a long and, I felt, very uncertain process. After this my vision was truly extraordinary after a lifetime of extreme short sight. And it remains so, despite the loss due to glaucoma. 

Severe short sight and astigmatism I presume I was born with extreme short sight and astigmatism. I was three years old when I had my first glasses: pink, round, wire-framed. I still remember the long bullying I experienced as a result. 

Please tell us about how you see the world. Does your vision vary? 

I find it absolutely extraordinary how my eye and brain can adapt. (Or not!) Despite advanced glaucoma, I somehow normally experience or see surprisingly little visual disturbance. Unless I shut my left — less-impaired — eye, of course. Then I can really see what my eyes and brain are compensating for, as the glittering black line of sight-loss dances across the low horizon of my field of vision, with the dark, shifting patching blotchy obliteration of field-loss above it. And though I can compensate for the glaucoma sight-loss with both eyes open under normal circumstances (hence my 3 ability to work as an icon painter!), if I get very tired or anxious the ability to compensate seems to disappear. Then the black line and obliteration of field-loss affects my whole vision, unignorably. This can then start up a vicious circle of increasing stress and anxiety, and increasing inability to ignore the sight-loss. This then dominates my whole being as well as my field of vision. Sight-loss is a very scary thing. But, as I began by saying, I am absolutely amazed by the eye and brain’s ability to adapt and compensate for glaucoma related sight-loss: to the extent that I didn’t even realise how much vision I was losing when my glaucoma did get out of control. (Other than the times when I experienced and saw it when I was tired, or in difficult light, and just thought my glasses needed changing!) The effect on my vision with the detached retina was extraordinarily different. There was no way I could not see, or ignore, or compensate for, the dark disc that descended across my right eye. It was heightened by a bright ring that enhanced its, so to speak, “growing edge”. I could even see the dark eclipsing shape, clearly and constantly dominating my field of vision, with my eyes shut. Similarly, there was no way I could ignore or compensate for — or not see — the black (gas) bubble that filled my right eye after vitrectomy. The retinal detachment and post-op black bubble first obliterated the vision and then distorted it as the sight began to return. The bubble produced double, triple and inverted images as it shrank. And then it just floated around my eye like a black balloon, bouncing and further distorting my vision whenever I moved. Finally, it vanished. And then the process of lens replacement began, as the newly regained vision disappeared with the lens damage. 

A note on the Art and the Windows on the Soul Exhibition The varied and extreme visual distortions and odd phenomena resulting from the retinal detachment were when I first turned to art as a way to cope: and to celebrate “the miracle” of the sight I had. I first used memory and the vision in my left eye to paint the eclipsing disc of the detachment in the right eye. Then I used the vision in my left eye to paint the distortions in my vision with the large and changing bubble in my right eye after the detachment surgery. For example, when I was seeing a distorted double image I painted seeing double. Similarly, a triple-image painting. And, memorably, a multiple image with another floating above it. I’d like to submit some of these images — and an icon — for the Windows of the Soul exhibition, to help show what sight loss can look like. And, my goodness, they also celebrate the skill of the surgeons who made my vision possible. The images clearly show the effects of different eye conditions and the silent signless danger of glaucoma. The difference between the paintings and the icon shows clearly the difference between the obvious visual signs of the detached retina and its post-operative manifestations, and the total compensation possible with even advanced glaucoma after surgery. This actually also shows so clearly why eye checks are so important, just as the publicity says, because glaucoma really can advance unnoticed as it steadily steals away sight. Just to emphasise the point, I could also try and do a painting of my visual fields and of what the sight-loss looks like — if I can — to try to further illustrate just how well it can be compensated for, by putting them with the icon. 

In summary, variations in my vision and how I see the world as a result of different eye conditions have been a continuing theme in my art practice. Ever since I was told it would be “a miracle if I ever got any sight back in that eye” with the detached retina, I have wanted to celebrate the “miracle” of the sight I have: and the extraordinary surgery and skill that has gone into making my sight possible. 

Pantemoleimon The Healer: The icon I’m suggesting, to show not just how sight-loss can be adapted to — and healed, or controlled, but also to point to the skill of the surgeon. And I also hope it will give some idea of the patient’s experience of the treatments. So, not just the skill and care and necessary confidence of the surgeon, but also what it looks like from the point of view of the person on the other end of the scalpel. For this I’ve chosen an icon of Panteleimon the healer, a Roman-era saint who trained in medicine. To my surprise, I found that the Romans were able to do cataract surgery. So a Roman-era medically trained saint could legitimately be shown holding what the patient would think of as a scalpel. In honour of my experiences, particularly with my eye surgeon approaching me with a sharp-pointed “scalpel” post tube and trabeculectomy surgery, saying “I’ll just take some more stitches out of your eyeball” (I paraphrase, no doubt), I’ve shown Panteleimon holding a sharp pointy instrument for eye surgery, rather than a spoon for salves. And again, as part of the “patient’s experience”, I’d like to paint the salves in his salve box with some of the colours of eye treatment: blue for the pressure-measuring, orange for examination drops and green for laser light. I’d value suggestions for any other “colours of eye treatment”, please. My icon of Panteleimon the healer will be A4 on wood panel, painted in egg tempera, and gilded. 

In August, Joan couldn’t see a step due to her visual field defect as a result of glaucoma. She missed the step and fell, breaking her back. We are grateful that she is on the road to recovery. This interrupted her painting process. Her view at the time: Even if - depressingly - I can’t complete the icons in time, it seems to me the incomplete images could actually be a vivid answer to the question: “How does your visual impairment affect you?” Bleak laugh. (I broke my back falling off a step I couldn’t see..). We have included the process photos, which show - so to speak, fractured progress - of how  they were before the back-breaking Fall from a step I couldn’t see.

This - together with a companion icon of the wisdom figure Julian of Norwich holding a scroll lettered with “All Shall be Well”

Most of my other work, showing the effects of eye conditions “from the inside” is A4 or A3, watercolour on paper. I also did a series of pastel sketches, based on paintings by the artist Edvard Munch (he of the Scream). Munch also painted what he could see of the inside of his eye after surgery — for a blood clot, I think. Being Munch, his eye interiors took the form of skulls, vultures and so on. They brilliantly convey the sheer terror of eye disease. I’ll see if I can find them: they could be very instructive for the exhibition.

Describe a situation that you find particularly difficult or tricky with your vision. What could others do to help? 

I find it particularly difficult to judge depth or changes in level. My vision is flat, with little 3D perception. This makes steps, slopes and changes in level and even patterns on the ground particularly tricky. 6 It led to several falls until I started using a walking stick to help judge depths, and whether things were stripes or steps. (I ended up in casualty after falling off a kerb, and off a “doormat” that was actually a slope inside a door.) Others could help by providing handrails, and clear markers on steps and slopes, even small ones, as small changes in level can be incredibly unbalancing: see the “doormat” above. I have good night vision once my eyes have adjusted. But I find it very hard to adapt from light to dark. Consequently I also experience difficulty coping with bright lights, which can completely obliterate my vision, as can any sudden changes in light level. Cyclists’ lights, and particularly runners’ head torches, help them to see and be seen. But if they are at eye level they completely obliterate my vision. It would help if such lights pointed more to the ground, not straight ahead. Similarly, lights by paths that point upwards, especially if they include spotlights, wipe out vision. It would help if they pointed down to the ground for path lights and up, but shielded, for spotlights, to avoid dazzle. 

What do you hope to result from this exhibition? 

It will be an amazing chance to work with other artists — and eye professionals — to share experiences and help raise awareness of sight loss and how different conditions affect different people, and what they look like from the inside. It will also be an opportunity to show how art, in all its many forms, can help us cope and survive and celebrate the sight we have, and to consider all the different ways of accessing art with visual impairment. It could even help show how we can experience our treatment. And it could show just how much vision and perception we can have, if we are fortunate in our sight, care and treatment.

Related conditions: