Charles Bonnet Syndrome

Of all the wacky myths out there about blind people my favorite is number seven on the Lighthouse's Top 10 Misconceptions about Blind People - "Most blind people are magical or crazy."

Total misconception. Magical OR crazy, like we have to pick one. I'm magical AND crazy! Stoopid misconception trying to rob me of my hard earned adjectives!

My comfortable tan shoes are next to the bookcase. The grey tennis shoes are to the left of the tan ones. My steel toed boots are in the closet. The shoes I wear to the dance club are to the left of the boots. I wouldn't have known where they were before I went blind. I wouldn't have needed to - I could just look and see where they were.

Going blind forced me to get organized. I need to pay attention where I put stuff if I ever want to find it again. I think I surprised my parents on our last road trip by knowing which town we were closest to and which road we were on every step of the way in a place none of us had ever been before. Magical or crazy? No, spatial awareness is just a consequence of paying attention and going blind got me into the habit. But don't tell Mom and Dad - I want them to think they raised a wizard.

That's my favorite misconception but the strangest one I know is about Charles Bonnet Syndrome. The stories tell of blind people hallucinating dead relatives in their kitchens and celebrities in their bedrooms. One guy claimed he saw Donald Trump on his toilet!

My blindness causes hallucinations every day, but nothing even close to seeing famous people in my house. That's not how my Charles Bonnet Syndrome works. Not at all.

My brain likes to fill in the blanks for me. I see stuff if I know it should be there.

If I'm on the bed and the bathroom light is on I can't really see it, I just see a vague glow coming from that direction. If I turn the bathroom light off the glow goes away.

Here's the weird part - if my wife turns off the light and I don't notice her doing it I'll still see the glow coming from where it should be. My brain thinks the light is still on and fills it in for me.

In low light environments I can't see my white cane, If I look down at it I see its outline but when I turn the light on my cane is actually a few inches left or right from where I was seeing it. Because I wasn't really seeing it, my mind was filling in the blanks.

If I'm walking through a doorway in low light I can see the outline of the door frame, except I really can't. It's my mind filling in the blanks. I end up bumping into it because it wasn't where I saw it. As soon as I bump into it I see it in its correct position, except I really don't. It's just in my head.

The really weird thing is closing my eyes makes it all go away. My mind knows it's not supposed to see anything when my eyes are closed so it doesn't, but as long as they're open my mind is augmenting what I can see with memories of what's supposed to be there.

That's why I didn't realize I was losing my peripheral vision until it was past the point of legal blindness. My mind kept filling in the blanks.

I don't remember Brittney Spears in my bed so I don't see Brittney Spears in my bed--wait a minute, does this mean the people who see celebrities in their bed had more adventurous social lives than me?