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musings on hansen's disease

Some years ago I read the whole series of 'Thomas Covenant' books by Stephen Donaldson. (I have to say that I found them a bit overblown - & I got seriously annoyed with the protagonist, Covenant, on more than one occasion.) Anyway, one of the plot lines was that Covenant suffered from Hansen's disease - more commonly known as leprosy - & because of this was pretty much an outcast from his community. Which was in the modern United States. I was reminded of this when I read Kathy Reich's Bones to ashes (I could never be a forensic anthropologist; I just don't think I have a sufficiently strong stomach!)

Hansen's disease gets its name from G.A.Hansen, who demonstrated that leprosy was due to infection by the bacterium Mycobacterium leprae. (Apparently scientists haven't been able to grow this bacterium in cell culture, but strangely enough they have managed to grow it in mouse foot pads & in armadillos, of all places!) The disease affects the skin, peripheral nerves, & sometimes the mucous membranes of the nose. Untreated, it leads to horrible disfigurement, with sufferers typically losing fingers, toes, & noses, & because of this people with leprosy have in the past been feared & ostracised from their communities. (You may be familiar with the image of a hooded figure, ringing a bell & quavering, 'unclean! unclean!' - it often crops up in stories about the 'Middle Ages'.) Even today there's a stigma associated with Hansen's disease, and yet it's highly treatable & not disabling/disfiguring if caught early. Nor is it highly contagious: apparently only 5% of people are susceptible to infection with M.leprae, although I guess that's cold comfort if you're among that 5%. (It seems to be spread through respiratory droplets - spread by coughing or sneezing - & not by direct contact.)

However, before the discovery of M.leprae & subsequently of effective multidrug treatments, in 1982, there really did seem to be no cure for this dreadful disease. During the Middle Ages sufferers were evicted from their homes & families, & if they were lucky ended up living in lazar houses - homes outside the towns & cities that were run by members of various religious orders. If they were unlucky they had to survive alone, by begging - or, if even unluckier, put to death. (Incidentally, the name 'lazar house' comes from Lazarus, the patron saint of lepers.) You can understand that fear - in the absence of  an understanding of how diseases were caused & spread, & with no means of a cure, it would be easy to see them as some sort of dreadful punishment for sin, or the work of a witch - often some slightly dotty old lady who lived alone, & who could easily be blamed for various misfortunes. These fears led to the infamous witch-hunts of Europe & North America during the 1600s, & still have an impact today in regions such as Africa. (Not everyone described as a leper back then would necessarily have had leprosy; with no means of accurate diagnosis, quite probably people with a range of other skin conditions were also packed off to live in lazar houses.)

More recently people with leprosy were quarantined in 'leper colonies', or leprosariums. It would be nice to think that in more modern times, patients would have been treated with more compassion. So it's sad to read that in 19th-century New Brunswick (Canada), for example, sufferers were isolated in wretched conditions on an island - poor shelter, little food, & next to no medical care until in 1868 a group of nuns took on their care. (Mind you, it's easy to forget that life could be pretty hard at times for those who didn't have leprosy, too.) And I suspect that the stigma still remains; it would be hard to 'come out' as a leper, even in developed countries where treatment is readily available.

Funny where the mind takes you, once a memory's been jolted into wakefulness...

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2 Comments

I remember devouring the Thomas Covenant books when they first came out, the prospect of a new volume was like waiting for the next Harry Potter in more recent times. I once read 700 pages at a sitting. These days I can't look at them, and I had absolutely no interest in starting on the "New Chronicles" that Stephen Donaldson started putting out more recently. But there was definitely something compulsive about the twisted personality of Covenant himself.

Several years ago we got stuck on an outlying island of Tonga due to bad weather, and with absolutely nothing else to do (this was a Sunday) went to a church service where the choirmaster was a leper. Reportedly he had lost some toes, but seemed in reasonable health if somewhat gaunt, and his musical charges were in very fine voice. So that was one place at least where lepers seemed to be relatively well integrated into society.

I've read the first Thomas Covenant series years ago. Straight after reading the Gormenghast "trilogy"! Not sure what I was doing read those two back-to-back. Neither are my usual choice of reading.

Quail Island was also a leper island in NZ. (Apparently Makogai near Fiji was set up as a leper colony for leper in the South Pacific and the lepers on Quail island moved there. I suppose at least a warm Pacific island is better.)

There is also this rather sad story about a Chinese leper in NZ: http://blandforddailyphoto.blogspot.com/2007/06/leper-island-39.html

Dave, I'm off to Tonga myself next week :-)

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