As much as I am loving working for MSF and am aware of the difference that our presence makes in the lives of people here I just want to write a short post about a woman whom I encountered briefly a while back whom we couldn’t help much – at least not more than we already had. I couldn’t give her much in the way of the medical care that she needed – but I want to give her a voice, and tell the tiny part of her story that I witnessed.
Hands up who’s heard of leprosy?
That’s most of you I’ll bet. And I’ll bet that along with the word come dreaded images of deformed people in the streets of some biblical town clad in rags, shouting “unclean, unclean” as they go. Leprosy is a disease that in the minds of most people belongs in the dark ages – it’s ancient history and as far off as the days of thumb screws and when people still thought the earth was flat.
So here’s what I know about leprosy. A slow growing bacteria it is related to TB – which makes it thankfully fairly hard to catch but harder to treat. It attacks selected peripheral nerves causing them to swell within their sheaths and stop functioning – meaning that you lose some movement but crucially and most devastatingly all sensation in the areas supplied by those nerves. Hands, feet, face… This doesn’t sound particularly catastrophic at first, but we rely on these nerves for warnings of minute injuries – splinters, blisters, burns – all of which then serve to make us conscious of the tissue damage so we can treat it and allow it to heal. You stop and pick out the splinter. You change your shoes for a pair that doesn’t rub. You swear and drop the hot teapot and run cold water over your scald. Except when you have leprosy you don’t feel anything so you don’t do any of these things. The splinter festers into a sore. The blister becomes a deep ulcer. The 1st degree burn becomes a 3rd degree burn and all without you wincing or even noticing. And then infection sets in and so on and so forth in a cycle of skin, muscle, bone and eventually limb damage.
The treatment is a fairly tedious process of combination antibiotics taken daily for six months to eliminate the bacteria that caused the nerve damage in the first place. But as the late great Christopher Reeve could attest too nothing can repair a nerve that is already damaged. The disease is technically cured but nothing can restore the sensation that has been lost and end the ongoing cycle of damage and tissue loss and gradual limb erosion.
So there’s the biology bit. And here’s the person part.
It was an averagely hectic day at the hospital and I was walking past the thankfully quiet emergency department (ED) when a folded up figure on the ground outside caught my eye. The older people of this community still aren’t exactly au fait with the concept of chairs so it’s not uncommon to find them squatting on the ground next to a completely deserted bench. The ED staff however, are VERY au fait with the concept of chairs and the nurse required rousing out of his comfy plastic lawn seat inside to help translate for me. After spending six months here leprosy is easy to spot – irregularly eroded stumps where fingers used to be, a curious and distinctive pronunciation of facial features and milky scarred eyes (did I mention that you don’t feel pain and irritation from your eyes either? So you don’t make tears, or blink enough and gradually the cumulative damage turns you blind)
As the nurse starts asking the old woman what’s brought her to MSF today, I crouch down and take her leathery wrist in my hand checking for temperature and assessing her radial pulse. A few seconds assessment later it’s all seeming normal and non-urgent except now the nurse is bent down and bellowing a stream of high decibel Nuer out mere inches from this woman’s face and my own.
Ah. That answers my next question already.
One of the less pleasing side effects of the six month course of antibiotics is that they can affect your hearing. Up to the point of total loss. The translation relayed confirms what I have already worked out – the leprosy treatment was completed from MSF some four years ago.
So what’s brought her here today I ask?
By this time the woman’s relative – a sister? a co-wife? someone equally wizened and elderly at any rate – has come back from wherever she was and conversation resumes between her and the nurse at a more normal volume somewhere at head height. I stay where I am on the ground level with the patient – she has enough sight to tell at this short range that I am one of the medical “kawajas” (“foreigners”) and starts urgently gesturing at herself – her arms, her back, her knees... pretty much everywhere.
I’m baffled to begin with but with the translator a picture gradually forms. Joint pain. Deep sensation not peripheral. Knees, hip, back… getting on for over a year now. Even though this woman cannot feel pain in most of her body and this is what has crippled and blinded her to begin with, what is crippling her now is nothing more exotic than ordinary, everyday, common-or-garden arthritis.
In some great sick sort of a cosmic joke this woman has been robbed of pain for years and is now being given it all back.
Leprosy. Should. Not. Exist.
It’s up there on a list of things that people should not have to suffer in this day and age – it’s the 21st century for God’s sake – like rheumatic fever, dying in childbirth, polio, all of which are nigh unheard of back home. It sounds like ancient history and that’s where it should be, in the history books with small pox and bubonic plague, not out there shuffling around in human form and reminding us of what a god-awful mess we have made of this planet with its politics and economics and financial crisis bollocks that some countries are off the top of the scale wealth-wise and others are so impoverished that a well-functioning health system (let alone a social care one) is still a distant dream.
But that is why I’m telling this tiny, five-minute story from over a month ago. It’s been so hard to write about this woman but I want to make her story matter. She is totally anonymous, I can’t even remember her name but I will probably never forget her and I think her situation and life deserve telling. Just because I’m out here working in a developing country (and trust me half the time I don’t even feel like I’m helping much) doesn’t mean that people at home can’t make a difference too. Buy fair trade. Don’t support sweatshops retailers. Stop whining about petrol prices. Support medical research for neglected diseases like leprosy. Give an Oxfam goat for Christmas. Or if that’s too hard (and I’ve been there, I haven’t entirely shed my former life, and yes it is hard) then maybe just try this - next time you stub your toe, or skin your knuckles on a wall, or cut yourself while you’re cooking, just pause for a second and be grateful for this amazing weird healthy brilliant blessed body you’ve got that tells you when you’ve hurt yourself. Because some people don’t even have that.
(For a truly great (?) book on leprosy and the humans and healers behind the disease look up “The Gift Of Pain” by Dr Paul Brand who pioneered leprosy research and treatment in the mid twentieth century. I read it about five years ago and was so blown away by its humility and human scope that after finishing it I went on a first date with a guy I had recently met and realised part way through the evening with a faint sense of horror that I had been enthusing about leprosy treatments and centres for a full half hour over dinner. To his great credit this lad still finished his food and somewhat unaccountably still asked me for a second date afterwards. To find out more about research for neglected diseases check out www.dndi.org one of MSF’s partner organisation. I’ll get off my soap box now. Thanks for hearing me out.)