Living with Charles Bonet Syndrome

A few years ago I began to question my sanity. I had been seeing things that really were not there. Yes, I was having hallucinations. But, who wants to admit this to anyone? Not me. I kept my strange visual images to myself for several months.

A friend of mine was discussing her recent loss of a chunk of her vision when we began to talk about how we adjust to vision loss. We talked about how are minds knew we couldn't trust our lack of visual acuity, but we sometimes forget this and get hurt. Having an interest in psychology, this got me to thinking about my interesting visions.

My hallucinations ranged from simple visions to very detailed pictures in my mind. Most frequently, I would see the room with the light on. I would picture the area as I remembered seeing it during the day even though I knew all the lights were off.

At times, it would appear to me that a person was standing in the room with me. I was aware that I was the only person present, but I still saw the image of someone in the room.

One of the most beautiful, yet disturbing images to me, was during a trip to Philadelphia. My family and I were traveling down a road in a bad part of town in Philly. This was the run-down neighborhood with bars on the windows, trash on the streets, etc. When I looked out the passenger window of my van, I saw beautiful two story homes lined up in a row. The homes were very close to one another. You know the type. The kind you could reach out the window and shake the hand of your neighbor. The homes were all shaped the same and decorated similarly. They were white with brown accents. Large trees lined the street with wonderful fall foliage. The small yards were well manicured.

Clearly, I was hallucinating. We were in no such neighborhood. It was spring instead of autumn. Where did such a thought come from?

I did some research online and read about Charles Bonet Syndrome. My significant loss of vision had led my brain to do its very best to make sense of what tidbits of vision were available. Sometimes, the images made sense, but typically they were strange and alarming. The information on Charles Bonet Syndrome seemed to hit home. It made sense to me, but was I just looking for an excuse to overlook mental illness with something I found on the internet?

I finally spoke to my eye specialist about the visions I experienced. He was not surprised at all. He immediately rattled off the name of Charles Bonet and told me more about it. My doctor explained that my hallucinations were just my brains way of coping and making sense of my vision loss.

The doctor reassured me that my hallucinations were very mild when compared to some of the other visions reported by his patients. Charles Bonet syndrome is well-known by eye specialists, but is typically not a familiar diagnosis for your average physician.

Although I still see strange sights from time to time that are not there, it is reassuring and comforting to know that I am not losing my mind. There are still nights that I lay in bed wide awake in my room with the light on...or so it seems to me.

Sometimes it helps to close my eyes or move, but frequently it makes no difference. I have to convince my brain that the light is off, for example. I finally began asking my husband if the light was turned off. He would tell me it was and after several minutes my mind finally believed it.