No, its not a band name; though it would be a good one. Charles Bonnet Syndrome is a condition that affects many people with significant eye problems and the Kalash are a unique ethnic group residing in the far north-west of Pakistan. Here is the story of how the two met.
Charles Bonnet Syndrome (CBS) is a condition that affects many people who have suffered vision loss for a variety of reasons including glaucoma, cataracts, diabetic retinopathy, damage to the optic pathway and most notably macular and retina problems. The symptoms of CBS are a series of complex visual hallucinations or phantom visions which range from coloured blobs, dots, lines, shapes, patterns such as web or lattice type images, flashing lights, flowers, figures, faces, animals, buildings and landscapes. Some people report seeing figures in hats and wearing ‘eastern dress’, not to dissimilar to the outfits worn by the Kalash. They can be abstract in nature but at times also super-real. Importantly, these hallucinations are not linked with any other senses such as sounds, taste or smell and occur in people who are mentally sound. Generally speaking, the experiencer knows that these visions are not real but the experience of them is very real.
The hallucinations seem to be a product of sensory deprivation due to significant vision loss leading to the firing of neurons within the visual system creating phantom images. More research in this area needs to be done though.
Previous, professional statements indicated that these hallucinations only lasted a short amount of time; days, months and sometimes up to four years but this idea seems to be changing as more research goes into the condition. It would be even better if health professionals actually listened to those with the condition.
It is hard to know exactly what percentage of those with vision loss experience CBS as it is under reported by sufferers as many think at first it may be linked to mental illness. Health professionals, especially specialists of the visual and psychological fields, are also often unaware of the syndrome or choose to ignore it, thus it is also under diagnosed. Thankfully the stigma around CBS is slowly melting away as health professionals and sufferers discuss it and begin to understand it better.
I have had CBS since August 2001 after a retinal haemorrhage. Thankfully I generally don’t see images of people, faces, animals etc. My experience of it is largely restricted to coloured patterns, dots, lines and geometric shapes. These images are constantly changing and moving throughout the day and their general nature has changed over the years as I have experienced more vision loss as a result of glaucoma and retina problems, some bought about by many surgeries. Initially I mainly saw a circular image with lines radiating out, a bit like a target or a psychedelic dart board. Now I see more random shapes and swirls, dots and lines. It is a very hard thing to describe with words.
The colours and shapes can be at times intense; quite ‘psychedelic’ but don’t go thinking it is a fun psychedelic experience as they can be very frustrating, especially because they further obscure already limited vision. For example, having low vision means it is already difficult to see peoples’ faces properly and very hard to read body or facial language. When the CBS visions are intense faces dissapear completely, instead appearing as a colourful,swirling mess. This can be very, very off putting whihle trying to hold a conversation. Still I try to look the person in the eye, or where I assume the eyes would be and carry on.
I have used Van Gogh’s Starry Night painting to try and convey my hallucinations due to its vibrant colours and depiction of swirling shapes and lights. Interestingly it is now believed that Van Gogh himself may have had retina problems and possibly CBS, unfortunately for him the professionals of the day merely called him mad.
Cave paintings and other forms of indigenous art such as those done by Australian Aborigines with their coloured lines and dots are similar to what I have experienced and cave art by the Chumash Indians of California are particularly akin to what I see and have seen as a result of CBS.
There are currently no recognised treatments for CBS. The best way to deal with the symptoms is to recognise and understand that they are a result of vision loss and not the loss of mental health. For this reason I hope more health professionals become aware of CBS and are prepared to discuss it with patients. I also encourage those who experience CBS to talk about it with their friends and family and to educate health professionals about the syndrome. When discussing it with health professionals, especially those in the psychological field, I recommend being armed with some literature or Internet links about it so that they can see it is a real thing. I have had the unpleasant experience of bringing it up with health professionals only for them to react in a way that made it appear they thought I was crazy. If you do have CBS and have this experience stay strong and remember that the ignorance rests with them and not with you and encourage them to read about it for themselves.
The Kalash ethnic group of north-west Pakistan are not a hallucination. They are very real and trace their origins back to members of Alexander the Great’s army who decided to stay and populate with the locals when they were in what is now the regions of northern Pakistan and Afghanistan.
The Kalash, who have their own language Kalasha, are unique in their geographic region in that they do not follow the religion of Islam (though some have converted to Islam at varying times). Their religious beliefs have variously been described as animistic, pagan and a form of ancient Hinduism however it is best to view their beliefs as Kalash. They revere numerous gods, goats and environmental places, particularly river sources. I am by no means an expert on their religious views so feel free to do further research or perhaps ask the Kalash themselves. They are very open minded in regards to religion, treating other people’s beliefs and customs with the respect they would like shown to theirs.
Unlike their Muslim neighbours, the Kalash don’t view consumption of alcohol as a taboo. In this aspect they are more akin to the Greek heritage they claim with most households making their own wine from local grapes. Red and white wine is on offer as is a stronger concoction. We were randomly invited into a house while walking to share some of the white wine which went down particularly well with the goat cheese that was offered. Of course, the conversation with the gentleman who invited us in was the highlight of the feast as he told us about the problems of living in such an isolated location but also highlighted his proudness of being part of the Kalash community. The hospitable nature of the Kalash towards visitors cannot be questioned.
The Kalash are perhaps most famous for the strikingly colourful attire worn by the females. Home made outfits featuring brightly coloured motifs on a black background is accentuated by dizzyingly colourful patterned head dresses and jewellery.
It is these outfits that for me initially linked the Kalash with Charles Bonnet Syndrome. When set amongst the dusty villages they stand out like a CBS hallucination. The brightly coloured outfits, or cheos, are adorned with imagery ranging from patterns of lines and geometric shapes to flowers and much more that escapes my eyes. The head-dresses, or kupas, in particular remind me of CBS hallucinations being adorned with seemingly abstract, but no doubt full of meaning to them, patterns of lines, dots and geometric shapes of a multitude of colours. To me, they are CBS visions come to life and celebrated in a riot of colours and patterns. Cowrie shells, beads and buttons are used to great effect to make these head-dresses.
The Kalash are also known to decorate their traditional homes, temples and other buildings with wood carvings. One I saw in a few places was an image of an eye with slanted lines on either side; this motif of an eye surrounded by lines immediately made me think of the CBS experience.
The fact that the Kalash people have managed to retain their culture despite a rapidly changing world and with the pressures that arise from living in the geographic and geopolitical region they do is testament to their strength. They are proud of their heritage and culture and don’t plan on changing to suit anyone else. The attitude of ‘live and let live’ is one which they follow and should be congratulated for. Isolation in the valleys of the rugged and seemingly inhospitable Hindu Kush mountains has helped this but even as they become more connected with the outside world they seem adamant to hold onto their culture and I sincerely hope these unique people are successful in that endeavour.
Those with CBS also need to find this inner strength to overcome the symptoms of the condition. That and understanding are the only real treatment we currently have.
As I mentioned, CBS can be a very frustrating experience and this is where my experiences with CBS and the Kalash are also linked. I was fortunate enough to visit the Kalash Valleys recently and while the people themselves were not frustrating, quite friendly actually, my experience there was.
I had hoped to take many photographs of the Kalash, not just the amazing outfits but their way of life and lives in general but this endeavour proved largely just out of reach, like CBS hallucinations themselves. I had the travellers curse of an upset stomach and the need to not venture too far from the toilet which made exploring the area difficult and uncomfortable but even more frustrating was the fact that we had to have armed security with us at all times during our visit. Being so close to Afghanistan makes this somewhat understandable but personally it seemed to be a bit of overkill. At all times in the Kalash Valleys and all over Pakistan, we were made to feel very safe and secure; the people themselves always look out for visitors making sure they are treated well. People with smiles are much better at offering a feeling of security than people with guns. Having an armed guard made us feel uncomfortable and I believe stopped locals from approaching us for a conversation. The police guards we had were both very friendly and did their best to show us the highlights of the region we may otherwise have missed but due to not having a shared language it was hard to converse, creating even more awkwardness.
I was also seemingly struck with the ‘camera curse’ in that when the best opportunities for photos emerged I stupidly didn’t have my camera at hand and when I did ask for permission to take pictures of some of the family we were staying with in one of the villages my camera didn’t want to play ball or I dialled in the wrong settings. I did however manage to snap some pictures which is great as it was hard for me to see and properly appreciate the outfits and the villages in person but I can use my photographs and computer to better see them.
Not getting the photographs I would have liked is certainly not the end of the world, in fact it is a good reminder not to view people merely as photographs and to view them as human beings. Visiting the area and talking to the people we did meet was still a rewarding experience even if it was frustrating at times. Just the same as doing my best to see past my CBS hallucinations is rewarding while also being frustrating.
If you get the chance, visit the Kalash Valleys for yourself. Don’t be put of by my frustrations as they are just that; mine. It is a unique and beautiful part of the world and well worth the effort to visit. Hopefully the security situation in that part of the world will improve so that tourists can be more independent and more importantly so that the Kalash, and everyone in the region, can continue to live their lives and practice their culture without fear.
If you get the chance to see CBS hallucinations yourself pass that opportunity up! Life is better with clear vision. If you or someone you know does have Charles Bonnet Syndrome talk about it with friends, family and health professionals, the best thing we can do is raise awareness of the condition to ensure it is better understood and diagnosed so that those with it and those around them aren’t left wondering. And remember, be strong and keep in mind that there are may of us out there with it and we are not crazy; we just see things a little bit different than most people.
A great video about Charles Bonnet Syndrome by Oliver Sacks