A picture of a city mall, populated with multiple people. Colours are amplified with a vivid intensity, with the trees in particular fluorescing against the sky. The faces approaching me appear fractured and misaligned – halved down the middle and shifted roughly 10 centimetres up or down. This uncanny sight is unsettling and bizarre, yet I must continue on to catch my bus.Colours and shapes that appear. Pink, blue, yellow, green in a continual morphing cycle: in and out. Eyes open or closed.Image made long ago (2011) to explain to the neurosurgeons my visual symptom. A woman walking along a train station platform. Behind her, on the wall a large scale painted colourful patterned mural. This pattern transfers onto the woman’s jeans and continues to move with her as she walks along the platform.
The CBS experience is isolating, as it is so difficult to communicate the phenomena. For many years, I had no explanation for my unusual visual symptoms. After a severe assault in 2002, the visual symptoms began and they gradually increased in severity over time. Five years on from this with no found cause for the visual hallucinations, my doctor referred me to a psychiatrist. Comments from friends and family such as “Are you on drugs?”, “Are you making it up?”, and “Are you crazy?” were common.
When I found out I had a brain aneurysm pressing into where my optic nerves cross over, I even felt a little relief as I now had a concrete cause for the visual hallucinations. But when I asked my new specialists if the aneurysm was causing the visions, the response was inconclusive: “Maybe it is, maybe it isn’t”. The course of action was simply to monitor and wait.
The inability to communicate these experiences proved isolating. I developed a learned response to stop sharing my reality due to repeated comments questioning my mental state. An example: On one occasion, my friends were in the backyard with a fresh poured glass of white wine. Going to join them things start to get weird. One friend’s skin is a fluorescent blue and the other sitting opposite a bright green. Only the skin, not the clothes, nor hair, or anything surrounding: it was so striking. You would think that would be the most remarkable but I said nothing.
Photoshoped images (see below also) created back in 2011 to help explain to my medical team what my visual experiences are like: a picture is louder than words. Two friends sitting at a garden table: one has bright green skin, the other bright blue. (image 2011)
Although I stopped discussing the visions with friends and family, I persisted with my doctors. Most effective were photoshopped images of the visual hallucinations: buildings transforming into vehicles, scrambled text at bus stops, wings on the footpath, and distorted skyscrapers. These images illustrated visual experiences in a way that words couldn’t.
A newly approved brain stent (2012) allowed for surgery. Charles Bonnet Syndrome was never discussed until my final visit with my neuro-ophthalmic specialist when I asked if it could apply to me: he said yes. I consider myself lucky for receiving treatment for the aneurysm prior to rupture and express profound gratitude for the exceptional medical care. Although certain visions were terrifying, several visions were remarkably exquisite and, in some ways, I miss them, as only simple visions remain now.
Effectively conveying your experiences, whether distressing or inspiring, can help a person, their social circle, and their health care team. These images I have shared here are from long ago, even so, I can look back and remember how desperate I was to communicate my internal experiences, and the need to feel understood.
At first I thought I was about to have a migraine as there was a bright, glowing and dynamic zig-zag patch right side of my eyesight. Then all the bus signs and numbers became scrambled and completely incomprehensible. (image 2011)
Lost the left side of my eyesight and as I walked across the bridge into the city. All the tall buildings curved and warped. They were static that distorted way. (image 2011)
Walking along the riverside I see a large pair of white glowing wings in the distance: beautiful. I understand there are not real. As I get up close I notice what they are in reality – are pair of discarded socks. (image 2011)
The phenomena most common over the years I experienced visions was a heightened sense of colours. Peoples hair would change to neon blue, purple, pink, or green. This would occur every day or so, in flashes or glows. (image 2011)
This is the recreated view behind me on the road. I was driving to an appointment. Going to change lanes I first check behind me in the rear view mirror and all was clear. I then do the second check by turning my head over my shoulder. The building on the side of the road morphs and changes – at first palinopsia style, dragging across the road – then turning into a large truck!. This truck was right up behind me in the lane I was going to change into. This is quite confronting, frightening to have happen. (movie 2020)Palinopsia, or trailing of images was a daily and persistent occurrence. My medical specialists were concerned that this visual symptom may have been caused by medications I had been prescribed. This led to many explorations over the years. (movie 2020)I look out my back door, up at the sky and see the clouds rolling in. A big stormy sky is forming. First thoughts are I better go and close all the windows as any minute now the rain will start. As I am back inside I realise it does not feel at all like rain is in the air. Looking out other windows there is no sign of a storm rolling over, from any direction. To confirm I return to the back door, and it is a beautiful clear and starry sky. (movie 2020)
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The depiction of walking in the mall and seeing split or misaligned faces is a very telling encapsulation of your unusual – if not discomforting – visual experience. It is through depictions like this that one’s subjective experience can be quickly grasped: facilitating empathy and understanding for the viewer.
Vicky
January 26, 2024 10:43 pm
Hi, testing uploading an image. This jpg is 20mb.
Max upload size: The limit is 50mb and
File types are: jpg, jpeg, jpe, gif, png, bmp, tiff, tif, ico
Dianne S
January 14, 2024 10:31 pm
Yes very unsettling especially first one mine take over all vision immediately not gradual, only thing gradual is me shocked and trying to figure out what’s going on knowing it is not real but trying to make sense of it,when I did not know about CBdS!
We want to add an audio voice description to all the videos. I am hoping the videos will show the hallucinations many facets but an additional audio track will be able to describe that extra experiential part that is missing.
The depiction of walking in the mall and seeing split or misaligned faces is a very telling encapsulation of your unusual – if not discomforting – visual experience. It is through depictions like this that one’s subjective experience can be quickly grasped: facilitating empathy and understanding for the viewer.
Hi, testing uploading an image. This jpg is 20mb.
Max upload size: The limit is 50mb and
File types are: jpg, jpeg, jpe, gif, png, bmp, tiff, tif, ico
Yes very unsettling especially first one mine take over all vision immediately not gradual, only thing gradual is me shocked and trying to figure out what’s going on knowing it is not real but trying to make sense of it,when I did not know about CBdS!
We want to add an audio voice description to all the videos. I am hoping the videos will show the hallucinations many facets but an additional audio track will be able to describe that extra experiential part that is missing.