Melanie Shee currently works PT for Creative & Cultural Skills also works as a freelance trainer/educator supporting the cultural sector in workforce development, skills, recruitment and apprenticeships. She has 23 years working in education, skills and career guidance. She lives in the North East .

Art and film is a great passion of mine and I studied art, film and design history at degree level and has a Masters in Cultural Studies. I have also stared making visual art once again after an absence of many years rising a range of media. In 2016 I was a member of the 26:28 Collective. The 26:86 Collective included both established and emerging artists and designers who travelled to Kiev and Chernobyl, Ukraine during the 30th anniversary year of the world’s biggest and most devastating nuclear disaster. Exhibited works were produced in response to the trip highlighting weighty and significant issues around nuclear energy. During lockdown I began to sketch again and is currently creating pieces from found items on the local beach.

Conditions affecting my eyes:

• Detached Retina x 2 Right eye - silicone oil, Eye plus 20 holes. Extensive lasering for retinal tears in both eyes.

• Inner retinal dysfunction 2017 - current right eye and Macular Pucker

• Uveitis right eye 2017, chronic 2019 to present  & Left eye December 2020 (HLA-B27 positive). Droopy eyelid right eyes which droops more when uveitis flares up. Synaechie right eye 2019 - pupil misshapen. Photophobia 

• Dense Cataracts - introcular lens replacement 2017 right eye and 2020 left eye, both eyes posterior capsular opacification

• Charles Bonnet Syndrome - July 2017 to current 

• Acute Glaucoma - Summer 2020 Right Eye. Possible normal Glaucoma - 2020, probable Steroid responder 

• Possible optic nerve damage /potential loss of peripheral upper right hand side 

• Retinal migraines 

• Blepharitis both eyes

My vision and how I see the world:

I have complex vision which varies. It was almost 20 20 when corrected initially, but not now (due to inner retinal dysfunction and central vision disruption). Below describes my vision in each eye in more detail.

Right Eye

Since the silicone oil was removed I have constant movement in my inner Retina /central vision. I have constant fluttering in left side top of right eye which gets worse in dim light. It is almost like kaleidoscope effect in central vision. I see colours as very faded. I have a silicone oil bubble floating around, this breaks up into mini oil-slick when warm, when it’s cold I develop a 'grey opaque circle'. I often think it looks like a bee flying around. In my central vision, I see a grey blob if my left eye is covered. This means I see no fine detail with my right eye. Often I see through a light purple/lilac haze.

Left Eye

I have floaters from Posterior Vitreous Detachment (PVD). I also see white rolling lava-lamp type lights rolling across my left eye.

Both Eyes:

I have little black moving floaters from uveitis. I have blurry vision. I get retinal migraines few times a year. I have Photophobia (sensitivity to light). I get flashing in both eyes. I have halos and starbursts both eyes.  I find reading difficult now, especially when when uveitis flares up. I struggle to work on the screen or phone (I have dark mode on my PC) as light and white paper can be painful.

I find that walking on patterned floor, in rain, in sun with shadows, or in snow can be difficult with the movement. I also find it difficult to see when walking on a slope or uneven ground. My vision also seems to hold onto light/dark at times and I hate being in the sun now as it’s too bright and painful which is a shame as I used to love it! I find the same when I walk on the beach or in blue skies because I have too many floaters. I have painted all the walls in my house grey to disguise the floaters, because they are too distracting. My salvation is polarised glasses!! 

I've actually found it quite therapeutic doing the drawings for the exhibition and showing one or two friends /family what has happened /is happening to my vision. They too have gained a better understanding of what I see. I hope this exhibition does the same to ophthalmologists, other doctors, nurses, and to family or friends of others who have vision problems. 

My experience of Charles Bonnet Syndrome:

Four days after silicone oil removal for retinal detachment repair in one eye and extensive lasering in both eyes for multiple holes and tears, I awoke and saw the dreaded 'swarm of flies' in my vision. 'Dreaded' because you are told by the the nurses & ophthalmologists you see at the eye infirmary to watch out for this in your vision, as it can be a sign of another retinal detachment or tear. However my swarm disappeared after a few minutes. Each morning when I awoke I saw these images & had decided I better telephone the eye infirmary for advice. I was so relieved when I saw the team that both retinas were flat with no holes or tears.

Roll on that evening, I woke in the pitch black and FREAKED out when I saw two large gargoyle-type creatures at the bottom of my bed with mist blowing from their mouths. I even pinched myself to check I was awake!!  Yep, I was wide-awake, so wondered what was going on.

The next day I spoke to my mother about what had happened and we came to the conclusion that these hallucinations could only be to do with my eyes! I had some sort of visual hallucination, so of course I headed over to Google and typed in eyes visual hallucinations, Charles Bonnet Syndrome appeared.

The description made sense so I began to read more about visual hallucinations as well as drawing the images I saw. For one month when I awoke and before I moved my eyes I drew the various repeat black patterns I saw to take to my next appointment with the retinal consultant. At the appointment, I was told to look up positive visual phenomenon, which I did. Wow, I had no idea that your brain and eyes were so connected. Through the vision issues I had, my brain had decided that it would me a favour and create and send images back to my eyes to fill in the gaps where my vision was missing. How amazing is that!  A little bit like a phantom limb. 

Once I did more research, I found it quite fascinating and took part in research into Charles Bonnet Syndrome with Dr Kat da Silva Morgan at Newcastle Univeristy. As part of this research a very brief magnetic pulse was applied to the back of my head.  This is designed to test what is referred  to as the ‘resting excitability’ of the visual part of my brain in the occipital lobe (which is located at the back of your head). The magnetic pulse causes a brief increase in the activity in that part of the brain and this causes people to see lights or fireworks, and the lower the intensity of the stimulation that can prompt these flashes, the more ‘excitable’ the visual part of the brain is.

The research hypothesised that this may be something that contributes to CBS (Charles Bonnet Syndrome) and the team did find a link between a more ‘excitable visual cortex’ and more intense or severe visual hallucinations in CBS. The research also found that people with CBS tended to have a more excitable visual cortex than people with sight loss who didn’t experience visual hallucinations. That evening, all I saw in my bedroom was an incredible spectacle of fireworks, just without the bangs!! 

I've seen hindu gods, skeletons, massive wasps, huge hyper real birds to list just a few of the hallucinations. I get vivid, rich colours rolling across my vision until the moment I close my eyes. 

I still get repeat moving patterns when I wake every morning and the occasional more detailed image when I wake on the pitch black. My last hallucination was of a pirate who looking at me in the corner of the room. Who knows where that came from because although I live on the sea I haven't seen any pirates lately or ever!! 

Animations by Gateshead College Level 3 Emerging Technology Students

In March 2021, I approached a contact at Gateshead College (https://www.gateshead.ac.uk/) about developing a potential live brief for students to create animations representing Charles Bonnet Syndrome. I had a chat with Andrew Dochery, Curriculum Leader of the Level 3 Emerging Technology course. He agreed to fit this into the curriculum, linking it to a specific learning outcome using Unity software.

I briefed the students in a remote session in CBS and my experience, as well as sharing some of my images and taking questions. They went off to carry their own research and developed their initial individual responses. The students then pitched their initial thoughts and ideas to me and I fedback some brief thoughts and comments. They then created the animations, a number of which are viewed here. Although not final finished products, each animation gives their representation of CBS. You can even spot some of my art work in the images! 

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