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Charles Bonnet Syndrome by Derrick Boudwin Article

Charles Bonnet Syndrome. What Charles Bonnet Syndrome is and my experience with it written by Derrick Boudwin.

How would you like to be remembered for a disease? How about a disease blamed for some pretty interesting hallucinations? Is your name Charles Bonnet? Of course it is! The disease is Charles Bonnet Syndrome. (CBS)

Charles Bonnet (pronounced like a French dancing “ballet,” not a 19th century hat) was a Swiss-French naturalist and philosopher in the mid 1700s. It’s a good thing that life success isn’t measured by the length of our Wikipedia page, because our friend wiki says “Bonnet’s life was uneventful.” That’s harsh, and I beg to differ.

Bonnet had an elderly grandfather, Charles Lullin, who was almost completely blind from cataracts and operations to correct them. Yes, we’re talking eyeball cataract surgery in 1753. (Don’t worry, it scares me too.) So Bonnet informs us that Mr. Lullin has a “vision.” He saw a

“blue handkerchief [which] appeared in [his] line of vision no matter the direction of his gaze. Accompanying that vision, the drapes and furniture of his apartment appeared to be covered with a clear brown cloth embroidered with clover leaves. Also accompanying that vision were several tall young ladies who were well groomed with nice looking coiffures [hairstyles], some of whom had a small container on their heads. There was also an upside down table which moved toward and away from Mr. Lullin, while the young ladies moved to the left.”

That’s not all he saw either. Mr. Lullin described women in the room that were as tall as the house next door, paintings, pictures, pigeons, trees, carriages, men with hats, and intricate objects that changed size and moved, visible only to him. Sounds like a few pages from Alice in Wonderland. To any of us hearing the above story of a 90 year old man I’m sure we’d place our bets on the loony bin. But Bonnet remarked that his grandfather was “a respectable man, full of health …judgment and memory.” Further, Lullin knew that what he was seeing wasn’t real. None of the images spoke to him, or gave any report to his sense of smell, hearing, or touch.1

To call the visions illusions or hallucinations is a matter of semantics, but the receiver generally discovers that they aren’t real fairly quickly. Lullin wasn’t crazy. Ophthalmologists and neurologists have only drawn mildly interesting conclusions on the matter, but it seems to be related to the phenomenon called phantom pain, or pain from a phantom limb. Occasionally an amputee will experience pain, tingling, itching, or the like from a limb that physically does not exist. The brain gets all the neuro input from the body and decides what each signal is. In absence of a signal from the limb, the brain occasionally makes mistakes and…well, just makes one up. For someone without a hand it can be an itch that will never be scratched, for someone who’s going blind it can be a vision of something that does not exist, or could not even exist. (i.e. cartoons sitting on your couch)

Remember from Tunnel Vision that the brain is on all accounts amazing, and in the case of peripheral vision loss can largely make up the lost input with (relatively) few errors. But, as optical input decreases, the accuracy of the brain’s conclusions may become questionable. Sufferers may begin to see geometric shapes or patterns, faces, or anything that poor Mr. Lullin saw. The extent of the disease is only roughly estimated, especially because who in their right mind is going to voluntarily begin a conversation like “Honey, y’know today.. I uh… I saw a rabbit on the ceiling in our bedroom.” No one wants to think they are crazy, especially me! I’m lucky though, my first encounters with CBS were minor, and helped me understand that what I was seeing was a visual error, and not a loss of marbles.

I was walking with my cane down the stairs of the math building and began to walk down a hallway about 10 feet behind a black haired girl who was about my height. She was wearing a dark shirt with blue and pink pajama pants and flip flops! In my mind I immediately thought, “Well wow, I know this campus is a lot more laid back than some others I’ve been to, but seriously… wearing pajama pants at 5 in the afternoon in college?” I probably continued my mental old man rant for a few more steps before the engineer in me started to take over. Her head was in the center of my useful vision, which probably extended to right about the bottom of her shirt. That meant that anything below her waist was in my blind spot. My brain was making it up.

As I wondered I moved my useful vision down. Instantly her pajama clad legs and flip flopped feet were replaced by blue jeans and sneakers. I almost laughed out loud. I had experienced bad imagery before, like a set of stairs looking like a ramp, or a blank wall that actually had a light switch on it. But pajama pants from blue jeans? Seriously?!? Since then I’ve seen all kinds of things. I once thought a red and white mailbox was a guy in a white jogging suit and a red sweatband. So I’m really glad I gave up driving already. My “Honestly officer, I thought I was only imagining your car behind me,” story would probably go over like a lead balloon.

It was my sister who told me what the disease was actually called; turns out she has it too. The good news is that it usually only lasts about 18 months. People who are really upset by it can get on a few mild medications to curb anxiety, or slow the brain down a little to minimize incidents. So Mr. Charles Bonnet, thank you for investigating your grandfather’s illness. For me your contributions have not been uneventful. Not at all.

Author disclaimer: Feel free to link to it or republish it.

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