Editor’s note: Information about Charles Bonnet Syndrome is of major interest to our visitors. It is often misunderstood by people experiencing the visual hallucinations and by professionals. So Mary D’Apice, VisionAware peer adviser, decided to share Dolores’s story to enlighten readers.
One night, 75-year-old Dolores woke up to find a huge tree growing beside her bed. Dolores is not a character out of a fiction story but one of many individuals who experience visual hallucinations brought on by vision loss. Dolores later learned the name for this phenomenon, “Charles Bonnet Syndrome”. At the time she had no idea what was happening when the tree made her jump. “The image was very real to me, like it was in 3-D. I can still picture it.” Soon she was regularly seeing pretty flowers popping up out of walls but none of her visions scared her. “I never saw anything frightening, like creepy crawlies.”
When she told her retinal specialist about the experience, the concerned doctor ordered an MRI and referred her to a psychologist who later reported that “her brain was just fine.” Not until Dolores attended her low vision support group did she discover the hallucinations were linked to her worsening eyesight caused by macular degeneration. Charles Bonnet Syndrome was named for the Swiss naturalist and philosopher who first described his grandfather’s visions of carriages, birds and buildings in 1760. Dolores later returned to her retinal specialist with literature on Charles Bonnet. “He’s an excellent doctor, but he had never heard anything about it.”
Importance of Understanding Charles Bonnet
Dr. Susan Hirshfield, clinical psychologist and Living Skills Specialist at the Earle Baum Center, is not surprised that much of the medical community is unaware of the syndrome. “I had a family thinking their mother was psychotic.” Thanks to her intervention, the woman was weaned off the unnecessary anti-psychotic medications that were making her sick. While such misdiagnoses may be rare, it’s no wonder people are reluctant to admit that they’ve seen monkeys in the kitchen or skyscrapers in the backyard.
Twelve years ago, Dr. Hirshfield was unfamiliar with the syndrome, but as a clinical psychologist, she had an intuitive understanding that some visual hallucinations were not necessarily a sign of mental illness or dementia. She met Martha, an older, totally blind woman, who was seeing images of maps floating in the air. Martha’s eyes had been enucleated (surgically removed) due to an illness. When asked what the maps meant to her, Martha said that she and her husband used to drive across- country and she navigated. Hirshfield got to the heart of the matter by discovering that maps symbolized happiness and adventure. “I realized that her brain was trying to understand not seeing,” says Hirshfield. “It was offering something familiar and enjoyable to look at in the absence of any real visual input.” Martha also enjoyed other visions, such as an image of sunlight dancing on the colors of a rug, which hung on a clothesline. “It’s much better than the blackness,” Martha told Hirshfield.
Martha’s experience inspired Hirshfield to research and confirm that this was a neurological anomaly akin to phantom limb syndrome. “The brain cannot accommodate having the feeling that the eyes are open, the individual is out and about, fully awake but not seeing.” Hirshfield points out that this does not happen to people who were born blind because the hallucinations are fed by visual memories.
Participants in Hirshfield’s Living with Vision Loss class are forewarned that they may be visited by Charles Bonnet. For those who have already had surreal experiences, the news comes as a relief. Just last week, Hirshfield said 5 out of 15 attendees reported having had visual hallucinations. “One woman literally put her hand to her heart and said, ‘I am so glad that you told us about this because I thought I was going nuts!'”
Because Hirshfield ensures that everyone at her agency is aware of Charles Bonnet, an Orientation and Mobility Instructor was able to put her client at ease when she had a visual hallucination during a training session. Cindy, who has glaucoma, had been learning to rely less on her diminished eyesight and to trust her white cane instead. One particular day, Cindy was terribly distracted by plants and rocks in the middle of the sidewalk. Though her instructor encouraged her not to use her vision she couldn’t seem to navigate around the unexpected obstacles. “I was so stressed out that I ended up in tears.” Cindy recalls. They walked to a cafe where Cindy was able to calm herself and have lunch with her instructor. Though she couldn’t see clearly, Cindy could tell there were musical instruments, flags and other decorations on the vibrant, red walls. Relaxed, Cindy left the restaurant with her instructor.After walking a few blocks the festooned red walls of the restaurant suddenly appeared in front of her like a mirage. To Cindy’s relief, the instructor told her about Charles Bonnet which explained not only the restaurant walls but the rocks and plants that her cane had been unable to detect earlier.
It was only in retrospect that Cindy realized she’d been having visual hallucinations for some time but because the were in the realm of normal experience, she hadn’t paid much attention. At last, it made sense that she saw green hillsides covered with vineyards out the car window when she was actually driving through the suburbs. “There was only one time I felt betrayed by the visions,” said Cindy. She returned to Pier One to buy a lamp she had seen previously but no one in the store could recall such a lamp. “I realized it was a Charles Bonnet moment.” She laughs, “He tricked me!”
When the visions are disturbing, Hirshfield teaches people how to live with them. She tells the story of Ann, who would walk into her living room and find it full of strangers. Hirshfield had Ann make a large sign in bold, black ink that read “Touch them.” She instructed her client to tape the sign to her bedroom door, her refrigerator, her bathroom mirror and all over the house. “Once she could reach out and had tactile connection with the fact that there wasn’t anything there the image went away. Eventually she was able to comfort herself knowing there only she and her dog were in the house.”
Advice on the Experience of Charles Bonnet
Vision loss disproportionately affects seniors, so many people with Charles Bonnet are older. Neither age nor type of visual impairment makes an individual more or less prone to seeing visions. “Bonnet is an equal opportunity trickster,” says Hirshfield, who tries to normalize the experience. With knowledge, most handle the visions and even find them pleasurable. “Like something that was provided to entertain me,” Cindy says.
“The syndrome is harmless so don’t panic,” Dolores advises. “The visions may come and go. Mine lasted a few months and stopped,” an experience typical of many with Charles Bonnet. “The flowers and trees I see now are real and out in the yard!”