Participants visions in their own words.

Transcript

The movie is a compilation of the thirteen co-created Charles Bonnet Syndrome visions. It runs for 15 minutes. The following transcript is the participants own words gathered from conversations in interviews and focus groups.

Participant_33 Vision explanation

I came around from the eye surgery and I could see waves of colour: blue and red. I said, ‘I think they’ve saved some of my sight! I can see colours!!

It’s like a lava lamp – they bubble up and they plop down. Their forms are fluidly shifting in perpetual motion, the colours evolving: it’s really nice.

They started to form the kaleidoscope of patterns and shapes, with the characters appearing within that kaleidoscope.

There were snarling dogs from the Ghostbusters movie, they’ve got big teeth and horns and snarly red eyes.

And a tiger as well! The tiger looks so real you could see the lines on the fur and teeth with the jaw that was open.

Sometimes it can be with three layers. I also get cartoon characters. My son’s favourite teddy was Winnie the Pooh. If I’m happy and playing and laughing Winnie the Pooh will make an appearance. I do believe that that’s a connection with him – why that appears. And Danger Mouse? That was my favourite cartoon as a child. I get a lot of The Simpsons as well; I don’t know why.

Participant _39 Vision explanation

I saw a dingo at the end of my bed in the early days: a pure dingo staring with her ears pricked up.

It was just standing, looking at me: that was so potentially powerful. A dingo in my bedroom, and it just … disappeared. It was beautiful, it was a real dingo! She stood, with her gaze looking through me. Then she vanished into nothingness—this beauty, a true embodiment of nature.

Now my dog is half dingo, but she’s not alert, she’s got floppy ears. So, this one was stiff as anything looking straight at me.

How do I reset myself? I just open my eyes, I just talk, and I shout. What are you doing? I don’t think about it. I’m not scared of the visions. But at the moment when they are there, I am scared. I get a shock. I get a shock and palpitations, and I scream.

Normally I just think – oh – I see something in the doorway. So, it’s a mixture.

I’m always thinking about these things. I’m immersed in my imagination.

Participant _60 Vision explanation

Initially, I saw little 3D speech bubbles for about 6 months. They then changed into smudges for a couple months, like someone trying to erase something. Then they became electronic waves which have been around for a long time. These luminous wriggly snakes that twist and turn incessantly. They are exhausting and frustrating to deal with—just a lot of lines, multiplying from hundreds to thousands, tiring me out most of the time.

This has been happening for three or four years now. At first, I thought it was due to epilepsy medication, but stopping the medication only made my brain more active. They say losing your sight strengthens other senses; while my hearing hasn’t improved, my memory has dramatically sharpened. Why do I get these electronic visions? Perhaps it’s because I taught computing, and still use computers often. I believe my experience with technology has shaped these hallucinations.

Whenever my vision changes, everything worsens tenfold. There’s a chair in my backyard where I go to find peace and look at my garden’s green and blue hues.

Participant _23 Vision explanation

It was just an ordinary day, and I was going for a walk but there were blue bright flowers on the cactus in my yard, but Cactus do not have blue bright flowers. I looked up in the Texas Ebony tree and there were blue flowers in the Texas Ebony tree too.

Not only have I lost my vision, but now everything’s got blue flowers.

The first time I was “terrified” because I didn’t know about CBS. I ran into the house and called my retinologist thinking I was losing more vision.

Participant _50 Vision explanation

Why am I seeing this, what is happening to me, am I going daft?

I have sight loss but didn’t associate it with that, until I told my optician what was happening. Once I knew what was happening, they were beautiful little drawings. A lot like those my grandchildren and children drew when they were young. It’s usually when I wake up in the morning after I’ve got up and I’m coming back into the bedroom. Then in the room, the ceiling, the wall, the carpet, and the bed is covered from top to bottom … it was like a checkerboard. That was a bit spooky. Children’s drawings of houses, gardens, and parks. All very brightly coloured: pink, blue, yellow, green, orange, and purple. The visions where pleasant once I realised what was happening. They come in as flash cards – dogs and cats, anything! Very vivid.

It’s a peculiar scene I hadn’t anticipated at all.

I try and explain to people, but they really don’t get it. It’s frustrating, really frustrating! I just acknowledge them and talk to them and then they seem to go away.

Participant _34 Vision explanation

I’m in my bedroom and there are two other persons lying there—and they are there sleeping. That disappears and I’m seeing this camera-like Super 8 movie-and there are images of the war. There is a ditch, and two soldiers in the ditch, and they had circular hats. So, I am thinking that it’s the Second World War and these images are invading the space like ghosts.

A psychic with this spiritual church said to me that I had been given a special gift of healing: that is the Charles Bonnet images. I was in denial, and I thought I was being trained as a medium. So, what I used to do is –write it all down: I was very proactive. But when my sister visited and I showed her my notes, she went off her brain at me! She really did. That really got to her, you know. <

So, I changed to watch and don’t react. There are no specific thoughts. I listen to my radio and pay attention to the broadcaster or listen to music. The radio is my own method of coping with the CBS images.

Participant _48 Vision explanation

I’ll describe a couple. My favourite vision was the time I saw my wife wearing Groucho Marx glasses and nose putty.

We were standing three meters apart in our kitchen. I don’t remember what she was saying but, – she had her usual sparkling wit and humour. I just couldn’t concentrate and said, “I’m so sorry, I’ve got to tell you what I see going on.”

It makes me laugh.

I have no problem telling people that as fortunately, you know, it’s still hilarious to this day.

It’s like a constant struggle between brain and body. Body saying, ‘I know this isn’t real’, and your brain is going, ‘I don’t care’.

For example, it might be a lovely warm sunny day. There’s no possible way the ground is frozen. Maybe it was raining the night before, so the pavement is kind of darker, or it could be just with the lighting.

My brain will say – this is ice and it’s very slippery, even though it feels warm, and you know there’s no possible way. Irrespective of the cues and the information I’m taking in, that’s just how the information is being processed. You need to take care of yourself and protect your body like you’re walking on ice.

Participant _35 Vision explanation

I was standing in a grocery store, the first time I saw the vision of a kaleidoscope. These colours enveloped my field of vision, obscuring reality – and leaving me disoriented. The vivid vision completely overwhelmed me.

The colours moved before my eyes, and what little sight I did have – it deleted it entirely! I was paralysed, unable to move or react because my sight had been stolen.

Petrified, I did not know what was going on. I couldn’t move, I couldn’t do anything, because I couldn’t see.

You don’t know what to do. You might as well be blind because you – ARE – blind.

Blindness is a traumatic event, and the brain reacts creatively to such stress, drawing on all its resources from past, present, and future.

So, presenting this way isn’t too surprising.

Interestingly, I loved kaleidoscopes as a child! It seems that every vision relates to who I am as a person.

Understanding this connection might make it more palatable for others to accept that it’s not entirely unrelated.

Participant _28 Vision explanation

When I am sitting in the lounge the interior changes because of the Charles Bonnet syndrome. Everything is different – even the doorways. The walls which were covered in patterns and false pictures all disappear.

Everywhere I turn figures are appearing, and at night it is worse. They pile into the house. When I sit with the television in front of me, I look and there’s about three rows of people sitting behind me.

They are waiting for the tv to come on – and there are people outside which is quite “frightening” – I would look round at them and they would look back at me.

I have a gas convector heater which is two meters away from where I sit in the lounge room. That’s the one thing that never seems to change, no matter what.

Once I find that, it seems to alter everything back to normal again. Which is strange, I know. It gives me a sense of control—I know that the other side of it there’s an escape.

I don’t know why I see what I am seeing. The only thing is, I lived through the second world war and I do have visions of bomb sites.

It is a self-isolating, and “frightening” experience and I remember “crying” because I can’t live like this.

Participant _41 Vision explanation

I started to see a large monster-looking creature, but with some human characteristics, dressed in ancient Aztec or Mayan clothing. He had a distorted face, but human-like body and was at least 8 feet tall and very broad.

My thoughts were – How come I’m not overly freaked out by this? Why am I hallucinating like this? I did not tell anyone.

I really cannot make any solid connection to cause of why I’m seeing this specific image.

Am I seeing this vision because there’s a Mayan figurine on the mantle of my fireplace? They don’t actually look alike and I don’t necessarily think that there is a correlation. I mean there’s just no rhyme or reason for it whatsoever.

I mean it was, very, very vivid, but not something that really freaked me out. Nothing that I talked about either, – really – for a few reasons. I want to be clear that early on I did not know about Charles Bonnet syndrome until nine months into my phantom image experiences.

So, I just let it be and I sort of—I don’t want to use the word “enjoy” —but I just sort of went with it.

Participant _22 CBS Vision explanation

I wake up to go to the bathroom and the hallway is full of flowers covering the windows, the doors, to the point where I’ve lost it because I can’t find the doorknob through all the flowers that are on the wall. It sounds lovely but it is not, I feel trapped!

They are not nice flowers; they are threatening and overpowering!

I take my hand and slide along the wall, circling along in a way that can make the flowers go away. Also, I yell – ‘Go away, go home, get out! Then I can go back to sleep.

Now – all my hallucinations come in the middle of the night. If the lights are off, then there’s a lot of them there. So, we’ve learned to sleep with the lights on, and that helps to keep the hallucinations at bay.

Participant _43 Vision explanation

I started seeing a white spotlight, a silver globe, and tears, in my vision.

I would see them sitting in my chair at night where I watch TV in the dark. They would light up my eye. It was like a show going on with them all moving around. It would last for anywhere from 5 minutes to 20 minutes. And then they kind of just went away.

I was not having great feelings when the visions were occurring. I was processing a sisters “illness”. For me it was “grief” related. Once I realized that she’s a Buddhist, and she wasn’t upset about it, then I don’t get to be upset about it either. That’s how I kind of processed it.

Participant _65 Vision explanation

Oh my… that was a lovely walk, and now here we are at the top of the hill over looking the valley, the presence of a downtown city view.

In my mind’s eye, I know the scene is one of tall office buildings, but I cannot actually see the cityscape.

What I see is the colour blue, a deep, beautiful blue, with some hints of emerald green.

That tells me the hills that make up the valley, and surround the downtown area are lush and green to the physical eye, and the sky is deep blue. … At least this is what I “imagine”, as I am completely bathed in these vibrant colours!

My walking partner and I take time to sit on a park bench to enjoy the view, and each other’s company. He is a wonderful friend and lover. …

I feel so “grateful” to be bathed in “love” and colour.