By Ruth Bieber
Do you see colours, that no one else sees? Do you see geometric shapes, which you cannot explain? Do you see cartoon-like faces in ostensibly empty rooms? And have you lost a significant amount of sight? You might be experiencing Charles Bonnet Syndrome, otherwise known as CBS. During the pandemic, the CNIB started offering national Zoom calls of all shapes and sizes. I was surprised to note, that one of these Zoom calls was designed to support people with sight loss, who were experiencing CBS. Prior to joining this group, I was the only person I knew, other than Oliver Sacks, who had experience with CBS. Turns out many, if not most people losing sight, will experience some form of CBS for varied lengths of time. And there’s nothing cookie-cutter about the visions that people see. The CNIB Zoom support group was called ‘Seeing Things’ and was led by Lucia Ricardo. Being a part of this Zoom support group was an eye-opening experience. I have been loving my CBS visions for over twenty-five years, but not everyone shares my enthusiasm.
As a result of the Seeing Things group, I became aware of a PhD study out of Australia led by student, Victoria Hamilton. Victoria is creating a website, designed to show the variety of visions people see while experiencing CBS. She also includes an audio narrative with each image. I am so excited about this project and can’t wait for it to be available to the public! For the moment, enjoy this audio snippet to whet your appetite. Or better yet, just go to Victoria’s website directly.
Also you can find out everything you ever wanted to know about CBS by checking out a podcast created by Shaimond Foye from New York City (link below). Lucia, Victoria and I all have interviews on this podcast, as well as many other professionals, caretakers, and people who experience CBS.
Shaimond Foye
Host, The Charles Bonnet Syndrome Podcast
And of course, do check-out Oliver Sack’s TED Talks on the topic.
In closing, it is important to be clear, that Charles Bonnet Syndrome is not a mental health condition. Rather it is a natural response of the brain, to sight loss. Always be sure to consult with your ophthalmologist for further information. And if your ophthalmologist hasn’t heard of CBS, encourage him or her to do some very important research on the topic! For starters, you can share the links above for plenty of information about Charles Bonnet Syndrome.
Note: Currently the Seeing Things support group is on hiatus. Refer to the CNIB National website for further updates during this time of transition. Many thanks to Lucia for her inspiration, and for hosting the CBS support group for several years.
FEATURED IMAGE ALT TEXT: Photo of a building and trees in greyscale with purple flowers floating in the middle of the image.