Transcript
Researcher Experience – Lived Experience
The CBS experience is isolating, as it is so difficult to communicate the phenomena. For many years, I had no explanation for my unusual visual symptoms. After a severe assault in 2002, the visual symptoms began and they gradually increased in severity over time. Five years on from this with no found cause for the visual hallucinations, my doctor referred me to a psychiatrist. Comments from friends and family such as “Are you on drugs?”, “Are you making it up?”, and “Are you crazy?” were common.
When I found out I had a brain aneurysm pressing into where my optic nerves cross over, I even felt a little relief as I now had a concrete cause for the visual hallucinations. But when I asked my new specialists if the aneurysm was causing the visions, the response was inconclusive: “Maybe it is, maybe it isn’t”. The course of action was simply to monitor and wait.
The inability to communicate these experiences proved isolating. I developed a learned response to stop sharing my reality due to repeated comments questioning my mental state. An example: On one occasion, my friends were in the backyard with a fresh poured glass of white wine. Going to join them things start to get weird. One friend’s skin is a fluorescent blue and the other sitting opposite a bright green. Only the skin, not the clothes, nor hair, or anything surrounding: it was so striking. You would think that would be the most remarkable but I said nothing.
Although I stopped discussing the visions with friends and family, I persisted with my doctors. Most effective were photoshopped images of the visual hallucinations: buildings transforming into vehicles, scrambled text at bus stops, wings on the footpath, and distorted skyscrapers. These images illustrated visual experiences in a way that words couldn’t.
A newly approved brain stent (2012) allowed for surgery. Charles Bonnet Syndrome was never discussed until my final visit with my neuro-ophthalmic specialist when I asked if it could apply to me: he said yes. I consider myself lucky for receiving treatment for the aneurysm prior to rupture and express profound gratitude for the exceptional medical care. Although certain visions were terrifying, several visions were remarkably exquisite and, in some ways, I miss them, as only simple visions remain now.
Effectively conveying your experiences, whether distressing or inspiring, can help a person, their social circle, and their health care team. These images I have shared here are from long ago, even so, I can look back and remember how desperate I was to communicate my internal experiences, and the need to feel understood.