Melanie Shee, 55, currently works PT for Creative & Cultural Skills also freelance trainer/educator supporting the cultural sector re workforce development, skills, recruitment. 23 years working in education, skills and career guidance. Lives in the North East.

My eyes over the last 4 years:

• Posterior Vitreous Detachment 

• Detached Retina x 2 Right - silicone oil, Eye plus 20 holes

• Extensive lasering approx 1000 left eye, 800 right eye

• Left Eye 2 large tears 2017

• Inner retinal dysfunction 2017 - current right eye

• Uveitis right eye 2017, chronic 2019 to present  

• Uveitis Left eye December 2020 

• Dense Cataracts (lens replacement 2017 right eye and 2020 left eye

• Charles Bonnet Syndrome - July 2017 to current 

• Macular Pucker (current) 

• Synachie right eye 2019 - pupil misshapen

• Acute Glaucoma - Summer 2020 Right Eye

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

• Possible normal Glaucoma -- 2020 

• Probable Steroid responder 

• Hla-b27 positive (trigger food poisoning) 

• Photophobia 

• Both eyes posterior Capsular opacification - worse in one than other

• Retinal migraines 

• Blepharitis both eyes

• Droopy eyelid right eyes which droops more when uveitis flaring up 

• Also pain lots of time from uveitis 

My vision and how I see the world:

I get told I complex vision which varies was almost 20 20 vision when corrected initially but not now (other than inner retinal dysfunction central vision)

Right Eye

Since the silicone oil was removed I have constant movement in my inner Retina /central vision 

Constant fluttering in left side top of right eye which gets worse in dim light 

Almost like kaleidoscope effect in central vision 

Very faded colours 

Silicone oil bubble floating around - breaks up into mini oil slick when warm or when cold develop a 'grey opaque circle' when it's cold often think bee  flying around 

central vision grey blob if left eye covered / no fine detail

Often light purple/lilac phase around in eye around objects etc =- since silicone oil went in

Left Eye

Floaters from PVD 

White rolling lava lamp type lights rolling across left eye

Both:

Little black moving floaters from uveitis 

Blurry vision 

Retinal migraines few times a year

Photophobia 

Flashing in both eye

Different halos and starbursts both eyes.  

I find reading difficult now especially when when uveitis flares up as is working on the screen /phone (have dark mode pc etc) , through blurred vision and the drops. 

light and white paper can be painful 

Walking on patterned floor, in rain, in sun with shadows, in snow can be difficult with the movement as can walking on a slope /uneven ground 

My vision seems to hold onto light/dark at time. 

Hate being in the sun now as too bright/painful which is a shame as loved it!

Same re walk on beach/blue skies as too many floaters

I have pained all the walls in my house to grey or darker as floaters to distracting  

My salvation is polarised glasses!! 

I've actually found it quite therapeutic doing the drawings 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, Dr's, nurses etc and family /friends of others who have vision issues. 

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 as 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 could be a sign of another retinal detachment or tear. However myswarm disappeared after a few minutes. Each morning when I awoke I saw these images & had decided I better ring the eye infirmary for advice. I was so relieved both retinas were flat and no holes or tears. Roll on that evening and 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 their mouths so  I even pinched to check I was awake!!  Yep I was wide awake so what the hell was going on. Next day I spoke to my mother about what had happened and we came to the conclusion that these  hallucinations that 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 and the Charles Bonnet Syndrome appeared. The description made sense so I began to read more about visual hallucinations as well as drawing my 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 where I was told to look up positive visual phenomenon which I did. Wow, I had no idea they that your brain and eyes were so connected and through the vision issues I had my brain had decided that it d me a favour and create and send images back to my eyes to fill in the gaps. How amazing is that!  A little bit like a phantom limb. 

Once I did more research I found it quite fascinating & 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 ny 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 your brain is. The research hypothesised that this may be something that contributes to CBS and the study 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 that's all I saw in my bedroom an incredible spectacle of fireworks in my bedroom and hall but 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 too 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 1 Games Design 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. After a chat with Andrew Dochery, Curriculum Leader of the Level 1 Games Development course.

 he agreed to fit in 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 of CBS as well as sharing some of my images and taking questions. They went off to carry their own research and develop their initial individual responses. The students then pitched their initial thoughts/ideas to me and I feed back some brief thoughts/comments and 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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