Toward the end of his life, John began to experience Charles Bonnet Syndrome (CBS). Common among people who have lost a significant amount of sight, CBS causes visual hallucinations. Researchers believe it is the result of the brain trying to “fill in” information the eyes are no longer sending to it.
CBS Can Be Frightening
Many people who develop CBS are afraid they are developing mental illness or Alzheimer’s disease, which can be anxiety producing. If you know someone who is losing their sight and they are starting to see geometric shapes and/or people, animals, or places that are not really there, it might be CBS.
John described CBS as being quite disturbing when it first started for him. Fortunately, he was open about the situation and had understanding people around him to help him cope. Many people don’t speak up when they start to have CBS hallucinations, because of concerns they will be considered “crazy.”
In this video, a woman named Bee describes her experiences with CBS:
Don’t Keep CBS a Secret
If you think you or someone you love might have CBS, don’t let fear stop you. Speak up, talk to your doctor, learn all you can, and get support from others dealing with CBS.
VisionAware.org has some very good information, plus an online message board, links to support groups, and other useful resources for people managing CBS.
For a longer look at CBS, check out this TED talk by the Macular Degeneration Foundation.
P.S. One of the great things about the full-length documentary we are making about John Fleming is that it’s not just entertaining. It will raise awareness about the conditions that blinded him and the ways he managed after losing his sight. If you think that sounds like an important goal, give what you can to support production costs at our GoFundMe page.