CBS: an Australian academic's lived experience

 

Dr. Annmaree Watharow lives in Sydney, Australia. She has Usher syndrome (dual sensory loss) and around the time she started to lose her vision, Charles Bonnet syndrome commenced and has continued ever since. Annmaree was trained as a doctor and currently is working as a Research fellow at the University of Sydney [Centre for Disability Research and Policy]. This is her story which has been kindly shared with the Foundation. The accompanying pictures are depictions of her CBS experience.

Living with CBS  by Annmaree Watharow

For forty years I have lived with a well-dressed man. He has dark hair, an indistinct face and wears a very smart black suit with a white shirt and a burgundy tie. The dark suit is double breasted with shiny buttons that sparkle in the sunlight. He is not real. He doesn’t have a face but he has been visiting me for almost forty years.

At first, for a long time, I didn’t know what he was doing popping out at me in all sorts of places: dim, romantic restaurants, dark hallways, alleyways at night, in the street. In Sydney, in Melbourne, in Toronto, Ontario, in London, France and Hong Kong. If I travelled so did he. I knew he wasn’t real, but I didn’t know precisely what it meant. That was seeing people that weren’t real. I was reasonably confident my brain was working just fine but then people with serious mental illness believe this too, so how could I really tell?

I noticed my vision deteriorating when I was fourteen or fifteen years old. I told three ophthalmologists in one year I couldn’t see at night. They told me to eat more carrots. I told them I kept falling over and into things like ponds, jetties and rubbish bins. They said go to a physiotherapist for clumsy people, we can’t help you. The man in the dark suit kept springing out at me no matter what I did or anyone said.

When my medical training finished, I moved quickly from hospital work (night shifts were too difficult) to being a therapist in the community. The man in the dark suit came to work with me sometimes (you just never knew when). One day I read about Charles Bonnet syndrome, about how Bonnet’s grandfather had these spectacular ‘fictions of the mind’ where he saw, as if they were real, horses and carriages and fine ladies on streets. This grandfather was blinded with severe cataracts. Aha. I thought. This is it. Low vision? Check. Visual hallucinations? Check. Intact brain function? Check (I hope).  

Never have I been asked about seeing the unseen by any doctor of any sort. And that’s terrible. So much secret worry could be avoided if the professionals looking after us knew more, investigated well and reassured most of us. I am lucky my man in the dark suit isn’t frightening in himself, he gives me a brief startle when he jumps out at me but that is more because as women, we are rightly wary of strange men in dark places.

                                           

                                                                Image: Watercolour painting of man with no face in a grey suit and burgundy tie.

I have other visual hallucinations that started more recently, in times of stress such as jet lag and being unwell. The first is when I kept seeing weird times on my large font analogue watch: first it was eleven ten, then five minutes later it would be a quarter to three. The time changed (wrongly so) every time I looked at it. I could only tell the time if I looked at the digital time on my phone. So, this was easily solved. I got a digital watch and never wore an analogue one again.

The next hallucination took place in a bar in New York City. I had just arrived and was exhausted from what felt like two days of non-stop travel. At first, I thought my drink was spiked when I began seeing little palm trees everywhere; in the bar, the street, my hotel room. I knew then this was CBS. It can be tricky crossing roads when the pygmy palms take over the place but I am usually with someone who can’t see them so all is well. I don’t mind these palm trees; they are bright green and cheerful when there aren’t too many of them. In a hotel recently, I saw them again, strangely spaced out and orderly. I told my husband the palm trees were out and about again. He laughed and took a photo of the wall showing the palm tree covered wallpaper! So very occasionally CBS is not responsible.

Image: Oil pastel picture of pygmy palms scattered around a New York bar. Far right image: Photo of palm tree wallpaper

What we need are: 

1. Advance warnings that CBS can happen to any of us with low vision from whatever cause
2. Our health and wellbeing professionals need to be aware, educated and proactive in asking us are we seeing any strange things? Then carefully listening and investigating, and then reassuring us.
3. Our health care professionals also need to actively ensure we are getting the support we need to live with low vision, to enjoy life and achieve goals.  
4. For the few for whom CBS is overwhelming, terrifying, sleep interrupting and life disrupting, better research is needed to work out the best treatments. At the moment so much is trial and error. Luckily however, most of us will learn to live with our men in dark suits, funny clock faces and palm trees.

 

Annmaree has a new book coming out later in the year that focuses on dual sensory disability. One chapter from that book will focus entirely on Charles Bonnet syndrome. The Foundation will provide updates once the work is published.