Guest blogger and VisionAware Peer Advisor Sheila Rousey is an educator, assistive technology specialist, and certified braille transcriber. With a Master’s degree in Special Education from Clemson University, Sheila has provided Interrelated Special Education Instruction in the public school setting; Parent Advisor support for the Georgia Parent Infant Network for Educational Services (PINES); and instruction at the college level for students who require assistance with developmental studies in preparation for more advanced college-level work.
She also has Marfan syndrome, a congenital connective tissue disorder that can manifest itself in the body in many ways. In Sheila’s case, she was born with cataracts and microphthalmia [i.e., smaller eyes and eye sockets]. After surgery to remove her cataracts, Sheila developed glaucoma and – later on – retinal detachments. You can read more about Sheila’s life and work at Sheila Rousey: Parent, Educator, Technology Specialist on the VisionAware website.
For the past three years, as a consequence of her vision loss, Sheila has experienced Charles Bonnet Syndrome (CBS), a condition that causes vivid, complex, recurrent visual hallucinations, usually (but not exclusively) in adults and older adults with later-life vision loss from macular degeneration, diabetic retinopathy, and glaucoma. The visual hallucinations associated with CBS can range from animated, colorful, dreamlike images to less complicated visions of people, animals, vehicles, houses, and other everyday items. It has long been difficult, however, to determine the actual numbers of adults with vision loss who are affected by CBS, since few people who experience these hallucinations are likely to discuss them with family members, friends, or physicians.
Now, a recent Canadian study indicates that visual hallucinations are experienced by approximately 1 in 5 persons with vision loss, warranting greater awareness of the phenomenon among all vision health professionals and their clients, consumers, and patients. Says Sheila, “The research was right on target with so many of their findings. I am really pleased that the subject of CBS is finding its way into conversation. Hopefully the medical community will take a more serious look at the findings and visually impaired people will no longer only learn of it as a result of shared experiences through support groups.
This is Sheila’s story about living, and coping, with Charles Bonnet Syndrome.
Living with Charles Bonnet Syndrome
For a little more than three years now, I have experienced a most fascinating and somewhat stressful aspect of losing my vision. For most of us, the idea of losing one’s eyesight brings with it all sorts of challenges, fears, and doubts. But what happens when the physical structures of the eye no longer function, yet one still has the ability to see vivid colors, objects, shapes, complex mathematical equations, and words whose letters are reversed? For readers who are curious about this fascinating condition known as Charles Bonnet Syndrome (CBS), I would like to share my personal experience with you.
My Hallucinations Began
After experiencing years of low vision and finally three failed corneal transplant surgeries, I was left with very little remaining light perception. As my vision decreased with each passing day, I began to notice several random vividly-colored objects that appeared around me. After a day or so, the instance of these hallucinations increased to the point that they lasted all of my waking hours. These random objects constantly morphed into changing shapes that seemed to move closer and become larger and then move farther away and become smaller as they positioned themselves onto some sort of illuminated grid. As I concentrated on what my brain was showing me, I also observed very complex mathematical equations.
As I tried to think about what the images meant, they would change slowly into other vividly-colored shapes, objects, words, or single letters of the alphabet. (See an example at left.) As my mind’s eye showed me words and sentences, I noticed that the letters within words were reversed. However, single letters of the alphabet that appeared as a result of an object morphing into a letter or number was not reversed. It was as if my brain could not process entire words correctly within sentences, but could correctly process single letters or numbers.
In all of my hallucinations, the background was very dark, thus making the shapes and objects seem as though they were brightly illuminated. It was very difficult to ignore them because the colors were so vivid. And closing my eyes did not make the hallucinations go away. There is something very unsettling about having one’s eyes closed and yet still having the ability to see things clearly. Unlike hallucinations associated with dementia or some neurological disorders, the hallucinations only affected the visual processing part of my brain. I did not experience any auditory hallucinations.
Once the hallucinations began, they became a constant part of my day. From the first moments of waking until the time I finally fell asleep at night, these vivid colors and shapes were ever-present.
A Eureka! Moment in My Vision Loss Support Group
For several months after the hallucinations began, I was very hesitant about sharing my experiences with my family members. And I only did so after attending a support group meeting for visually impaired adults. During the meeting, one of the group participants mentioned her experience with Charles Bonnet Syndrome.
Although the types of hallucinations that she spoke of were not like the ones I was experiencing, she explained how they were having an impact on her life that these hallucinations were common among people who had more serious vision loss. I was so relieved. I remember sitting there thinking, Oh gosh, that is what is going on with me. Even though I knew absolutely nothing about Charles Bonnet Syndrome at that time, it felt really good knowing that what I was experiencing was something that could be shared with others – and that there was a reason for what I was experiencing.
Searching for Information
As soon as I returned home, I went to my computer immediately and began searching online to learn as much as I could about Charles Bonnet Syndrome. I found several very informative articles that provided a brief history of Charles Bonnet Syndrome, as well as some of the causes and symptoms of CBS.
I was particularly interested in knowing more about the hallucinations and learned that there are basically two types: simple hallucinations or complex hallucinations of people, animals, landscapes, and other objects.
My hallucinations were simple ones, since they were more like two-dimensional drawings and shapes with vivid colors. I also read that CBS hallucinations can reflect our life experiences. My seeing words, sentences, and complicated mathematical equations makes perfect sense, since I had taught developmental-level courses in mathematics, English, and reading through our local technical college.
The hallucinations described by the participant in my support group could be characterized as complex. She explained that she could see dogs and people walking toward her, along with deep holes within the sidewalk that she had to avoid during her daily walks. She was able to diminish the effects of her hallucinations by looking away quickly and then focusing on what she was originally looking toward.
An Appreciation and Understanding of My Constant Companion
Now that I have a better understanding of my constant companion with Charles Bonnet Syndrome, I have come to appreciate the gift of my ability to enjoy vivid colors, even though I am blind with no light perception now. However, there are times when I find the hallucinations to be very distracting and have not found a solution for getting rid of them. Bedtime is particularly frustrating when I am ready for the lights to be turned out and my brain just does not get the message. It is probably good that I can sleep with the lights on.
I have also noticed that when I am actively engaged in listening to music or listening to a good book, the hallucinations are very active and vivid. I have found that exercises such as tandem bicycling, swimming, and brisk walking do somewhat diminish the vivid colors and movements of the objects within the hallucinations.
Since there is no known cure for CBS, I have been trying to keep a personal journal entry for those days when the hallucinations are more or less active, as well as environmental factors that may affect the intensity of them. It is so very amazing how we are able to adapt to our situations and learn from them. Hopefully, sharing my experiences relating to Charles Bonnet Syndrome with others will remove the negative ideas about hallucinations that have been associated historically with other conditions – such as epilepsy, brain tumors, dementia, or mental illness – that can produce negative images and stereotyping of people with Charles Bonnet Syndrome.
Additional Information
- New Research from Canada: Approximately One in Five Persons with Vision Loss Experience Visual Hallucinations
- When the Eyes Play Tricks: Charles Bonnet Syndrome Explains Visual Hallucinations in Those with Visual Impairments
- New Research: Rethinking Charles Bonnet Syndrome and Visual Hallucinations
- Charles Bonnet Syndrome: My Personal and Professional Journey