Nov 2, 2020
The Way I See It Blog Series: Seeing Things
My name is Marlene Cust. I am a senior citizen, and legally blind due to retinitis pigmentosa and age-related macular degeneration. In my writing, I want to acknowledge both the challenges I face and the positive coping strategies I have developed over time. Blindness is experienced by individuals in unique and various ways. There is no ‘one size fits all!’ Always there is that hope for a cure sometime in the future. In the meantime, for me, hopefulness lies in acting with courage, competence, confidence and decisiveness every day. My blog entries present living with blindness the way I see it.
One evening, as I sat listening to TV, I noticed an unusual checkerboard pattern floating on the wall behind the set, like a curtain fluttering in a slight breeze. I blinked my eyes, looked away, looked back, closed my eyes and opened them again – it was still there, except this time it curled itself like a cat around the TV. No pain. No fright. Just curiosity and bewilderment!
In the morning I consulted with my niece who is an optician. Then over the next two days, I had a blood test (to rule out coronary artery disease), and was seen by an optometrist, a medical doctor, and my ophthalmologist. Diagnosis: Charles Bonnet Syndrome.
I continue to ‘see’ my ‘checkerboard’ pattern – frequently, but not always. At times, it is just a static pattern of elongated purple and grey squares on a wall. At other times, it flutters and wavers on the periphery of my visual field. Sometimes, when I am walking outdoors, it cascades down in front of me unto the sidewalk and it seems like I could step on it. There are occasions when it seems to take on an almost lifelike quality as it curls itself with feline fluidity around tables, chairs, people, or whatever I may be looking at.
A widely-accepted definition of Charles Bonnet Syndrome (CBS), offered by a vision rehabilitation counsellor, Maureen Duffy, is the following: “a condition that causes vivid, complex, recurring visual hallucinations, usually (but not only) in older adults with later-life vision loss.” According to Duffy, the ‘visual hallucinations’ associated with CBS can range from complex, animated, colourful, dreamlike images of people, animals, plants, vehicles, houses, etc., to simple checkerboard, grid work, and lattice work patterns or flashes of light. (Maureen A. Duffy, ‘Charles Bonnet Syndrome: Why Am I Having These Visual Hallucinations?’, 2014 – visionaware.org)
Duffy elaborates: “CBS is sometimes referred to as ‘phantom vision’ syndrome, and can be compared to ‘phantom limb’ syndrome, in which an individual can continue to receive sensation – and even pain signals – from a limb that has been amputated. Similarly, in CBS, when retinal cells no longer receive and relay visual images to the brain, due to eye disease or damage to the optic pathways, the visual system begins creating its own ‘phantom’ images.”
Sometimes the visual hallucinations abate spontaneously, sometimes not. There is no medical treatment or cure for CBS. However, it might prove helpful to have a discussion with a knowledgeable doctor or vision rehabilitation counsellor, and certainly to increase one’s own knowledge and understanding of the phenomenon.
It is estimated that as many as 20% to 30% of adults with vision loss are affected by CBS. Apparently, the incidence is under-reported because many persons experiencing the syndrome do not disclose it to family, friends, or physician, because they fear it is a sign of mental illness, or that it will be misdiagnosed as psychosis or early dementia.
But these images are ‘illusions’ not ‘delusions.’ They are solely visual and do not involve any of the other senses. They are experienced by individuals who, for the most part, are mentally healthy, and able to recognize that these perceptions are not real.
I am fortunate in that the medical professionals with whom I consulted were knowledgeable about CBS, and that I have, as well, made it a point to inform myself about this condition. These factors have dispelled any initial or ongoing concern I might have had about this experience so, for me, the images are more of a curiosity than a cause for anxiety or alarm.
Join the Fight!
Learn how your support is helping to bring a future without blindness into focus! Be the first to learn about the latest breakthroughs in vision research and events in your community by subscribing to our e-newsletter that lands in inboxes the beginning of each month.