“Spread the word!” That’s a phrase I hardly hear these days probably because between social media – the phrase makes me want to urp I regret to say but is shorter than listing them all – cell phones, email and even the old fashioned telephone and letter, everybody is spreading ample words and tales, true and fake. I wrote a previous blog on this topic but now have a new urgency and an assignment for all of you who read this. I hope you agree that it’s an effort worth making.
I have Charles Bonnet Syndrome. It’s visual hallucinations and happens to people with failing vision and a perky productive mind that is just fine but is bored when all it is fed visually to play with is blurred, out of whack or unidentifiable, perhaps even just darkness. Had my vision been as poor in 2005 as it now is, I could not have seen the incredible creativity of Helen’s garden pictured above with its multiplicity of plant varieties and colors, and intriguing foliage shapes and textures. (Thank God I took the pictures and have them to remind and instruct me.) Our brains apparently need and feed on visual stimulation and deprived of enough, create their own. I have been dealing with this off and on for about three years. Mine started as vivid floral wallpaper-like visions, appropriately starting on walls and then spreading over fireplaces, bookcases, people, trees, the world. I found them surprising but not scary. After a day or so of constantly mutating visions including neon and glittering geometric shapes but with breathers of seeing none, I called the eye doctor’s office and learned these were coming from the visual stimulation starved brain not anything happening in my eyes but developed because I had increasingly poor eyesight.
About the time my hallucinations began, I saw a story in The New York Times about a young couple, one of whom had a mother complaining of a little green man who had free access to her apartment. Fearing she was suffering dementia, they sought out a psychiatrist who after examining, questioning and just talking with the mother assured them she had a fine mind but was seeing visual hallucinations. Everyone was relieved and comforted and the green man ceased to be frightening and upsetting.
The problem I see is this. It is widely suspected that there are many Charles Bonnet sufferers who tell no one of their problem because they think they are losing their mind. If people felt they could reveal their visions and laugh at them with their friends and family, the known number of those afflicted might become large enough to encourage the medical community to spend more time and resources researching this puzzling phenomenon and possibly learn more about what triggers attacks and ways to end them faster, possibly some day even cure them. Charles Bonnet Syndrome is nothing to be ashamed of as it seems almost an assurance of a sound mind working creatively to keep itself lively and entertained.
These descriptions are my own, somewhat flip, ones but based on what I have read. There is very little published information on the subject but I have just bought a pricey volume through Amazon which (if I can wade through some of it) should soon make me a bit brighter. My increased interest was sparked by a recent nine day attack, three times as long as any previous siege, much worse, and pretty much non-stop at its peak. One day the bathroom mirror was so obscured with twining green vines that I could not see my face and hair enough to calm my cowlick or know how I looked to welcome a visitor in ten minutes. My visitor was enthralled to hear of my visions while talking to her but the cat developing a second tail which then multiplied before turning into an immense boa constrictor. I could barely read, compose, type or do anything at the height of this attack and felt debilitated by the syndrome for the first time. If others have it as badly as I did this time, the medical world needs to be nudged into action to learn more about this hardly known malady. It’s not, as we say in our family, “a biggie” like heart disease, cancer or Lou Gehrig’s disease but more knowledge would be a gladsome thing.
Please spread the word. Talk it up. Tell your friends about Soomsie’s multiple tails which became a large boa constrictor, my most complex vision to date. Ask your doctor about it, tell your doctor about it and, if you yourself have it, tweet about it and report it on Facebook. The more people who know CBS exists, the fewer sufferers will needlessly fear for their sanity. See you next c. September 26. Meanwhile, guests and help with projects I can neither handle alone nor when writing blogs! I’m not the girl I used to be! p