“You’ve never lived until you’ve seen a floating crocodile”

Posted: Wednesday 16 November 2022 at 00:00

From a reptile gliding overhead to being offered beer by a woman dressed in lederhosen, Polly has seen her fair share of weird, wonderful and sometimes frightening things, from the comfort of her bedroom.

She’s even woken up to see people having a party, as well as cats jumping out of her cupboards.

But, none of it was real.

Polly, 79, has age-related macular degeneration (AMD) and is one of the many people who experience Charles Bonnet Syndrome, which causes visual hallucinations in people with sight loss.

While they can be terrifying for some people, Polly has learnt to enjoy the things she sees. “I just see it as quite humorous,” she said. “There’s nothing else you can do but laugh at times.”

Polly’s experiences happen at night, something she said was the biggest challenge of her macular disease. She recalled the first time she saw a hallucination: “It was early one morning. I woke up to go to the toilet and I moved my legs around and sat on the side of the bed to give myself a minute. Then just as I went to get up this black hooded figure.

“The head was touching the ceiling and it was massive. It came towards me and I started to back up, landed on top of my partner and suddenly it disappeared. My partner thought I was dreaming but I knew I had been awake, I was wide awake. It didn’t twig then but a month or so later it happened again and that’s when something clicked and I remembered reading something, maybe in a leaflet, about Charles Bonnet Syndrome.

“I haven’t seen my hooded figure for a long time now but that was frightening. When something suddenly appears in front of you it can startle you, but the brain does click in and I think ‘hang on, this isn’t right.’ It borders from terrifying to the most hilarious things. Sometimes I don’t want them to go if they’re so funny, or the patterns I see are so beautiful and I don’t want to lose them. Of course, they do go so it’s a very big swing from being terrified to then being in hysterics.”

Up to half of all people with macular degeneration are thought to experience visual hallucinations at some time. Charles Bonnet hallucinations are not a sign of mental illness and they are more likely to occur if both eyes are affected by sight loss. Techniques such as rapidly moving the eyes or simply moving into a different environment are recommended to make hallucinations disappear and research funded by the Macular Society is looking into how effective these are in reducing the severity of hallucinations.

Polly has her own methods to try and make them pass.

She said: “I’ve always found figures are the hardest to get rid of. I have techniques from walking through them, shouting at them, blinking my eyes or shaking my head.

“Animals are something different and can be scary. I’ve seen reptiles, mice, snakes, insects. I even had Bambi in my room one day, which was quite sweet. But the floating, stuffed crocodile was funny, seriously you have never lived until you’ve seen a floating, stuffed crocodile.

“I woke up and I first thought I was in a tent. I looked up and about a foot above me was a canvas which I tried to whack with my fist. As I did it floated across my bedroom but as it turned I realised it was actually a floating stuffed crocodile. It just morphed into it.

“Patterns are absolutely beautiful. I do a lot of art and I love these. They are so clear and beautiful that you don’t want to lose them. As a gardener seeing the flowers are so interesting. They are lovely to see.”

Polly has had time to adjust to her hallucinations after first being diagnosed with AMD in her 60s. Now they are have become part of her daily life.

She said: “I see something most nights or mornings, it’s not often I don’t see anything so they’re certainly regular. They don’t frighten me, as I say if I walk through them or blink I can get rid of them, sometimes shaking my head. They no longer bother me though and I’ve managed to handle it. Yes, some can be terrifying, but they can’t kill me.”

Polly, who worked in the fashion industry and now lives in Yorkshire, is particularly open to discussing her own Charles Bonnet Syndrome experiences, but due to a lack of awareness of the condition it is a topic many people don’t talk about, as they fear they are losing their mind.

Polly added: “We just need to hit this harder than we have done before. The research tell us that one in three people with eye problems are likely to experience Charles Bonnet and I would like to see more research into this. People need to be told more about it.

“It’s also about support for people who aren’t coping. However, you can’t help people if they don’t bring up their Charles Bonnet Syndrome in the first place, so we’ve got to push harder on eye health.

“Please don’t be frightened, adjust your life and take in as much information as you can. You’ll find things really aren’t as scary as you might think. Ask for help because there’s plenty out there from places like the Macular Society, Esme Umbrella and Fight 4 Sight.”

What support is there for people with Charles Bonnet syndrome?

The Macular Society runs a support group via our counselling service. This is done over the telephone and you can speak to other people experiencing Charles Bonnet Syndrome as well as one of our professional counsellors.

If this is something that could help you, a friend or family member, you can either call the Advice and Information Service on 0300 3030 111 to complete the referral form or Make a referral for advice and information.