It’s a strange experience watching someone have half their foot shaved off with a scalpel. Even stranger to be 2ft away with a hi-def camera filming it and seeing it all happen in ultra-tight close-up. Stranger still to know that none of the patients is taking painkillers. Strangest of all, that none of them seem to mind.
Which is more than I can say for the rest of us, spectating. The environment is horrendous. Blood, pus and skinflake sodden rags thrown into dirty buckets of water filled with a liquid resembling milkless tea.
Light bursts through the small windows of the dark operating theatre in vampire-killing shafts of light that illuminate thousands of whirling snowflakes of skin and dust. I’m not the only person in the room who wishes he had something over his mouth. In such cases it is traditional to breathe through one’s nose instead, for it is a truth universally acknowledged, that air travelling through the nose carries no germs.
The air reeks of weak disinfectant. The staff line people up 3 at a time. All the patients are swaddled in poor clothing bordering on rags. All, bar one younger man with a moustache, eyeing us with curiosity, are staring blankly into the distance.
He grins at me. He is wearing a yellow cotton shirt. It seems incredible that he manages a smile. It is his foot being shaved. His foot looks like a grotesque ham – the kind that that cartoon characters hold by the bone and munch like sweetcorn.
Just like the ham, the end of his foot is a giant open wound, showing off gelatinous red muscle. He has lost his toes. The skin that has died around the wound needs to be sliced off with the scalpel. He continues to stare at me as another slice, falls to the ground.
None of the other patients acknowledge us. It is as if a visiting group of UK tourists is merely an occupational hazard – part of the stigma-laden process of getting free treatment for their leprosy related conditions.
We are in the Leprosy Mission International Hospital in Shadhara, New Delhi and we are being given a guided tour of the operating theatre by the head nurse.
I have joined a group of cricketing Christians from Bedford in this fund-raising tour of India. I am trying to make a documentary as we go, but the conditions are against it. A 15-minute stopover at a major hospital is far from ideal for a documentary maker, so my camera is permanently switched on and I never get to be a tourist. In a bid to squeeze a few more minutes of establishing shots out of the visit, I will be the last back on the coach.
I mutter to my friend and colleague Fatima that this visit is moving too fast for our purposes and she suggests that we return in our own time. I agree and we manage to squeeze in a return trip just before we returned to England. The bookending trips to Shadhara Hospital turned out to be key elements in the resulting documentary.
The group of people I am travelling with are a wonderful bunch of people. I am there as the guest of Roger Wright, controller of Radio 3 and the Proms and his wife Rosie and charming children Will and Alice. Also on the trip is Gordon Charlton. His wife is Yvie Burnett the vocal coach from X Factor. Gordon and I both grew up in Luton and work in music/TV so we naturally got on well. Other notable people on the trip included the head of Culture at the LDA, Mark Prescott and the interfaith advisor to the diocese of St Albans, the Reverend Jay McCleod.
Altogether, there was the cricket team plus associated family’s worth of us crowding out the operating theatre. Not everyone could fit in.
Will Wright, who at 11 is already a fantastic cricketer, suddenly passes out and faints, hitting the white ceramic tiled floor with a sickening crack. I once passed out at school watching an anti-drugs film, which featured an autopsy, so I knew how he felt.
I think some of the group were glad for a chance to get out of the operating theatre on the pretext of looking after Will, but I remember thinking that this environment was one of the most naturally photogenic places I had ever been in and could easily have spent a day there.
I had been apprehensive about the trip.
Leprosy is one of those diseases that we all think we know about. Our collective knowledge in the west can be summed up as: Biblical. Disfigurement. Things dropping off. Contagious.
In fact, leprosy is one of the most treatable diseases in existence. It is a disease of poverty, which is why you seldom hear of cases in the West. Disconcertingly, the doctors told me I had almost certainly breathed in the germs that cause leprosy. I was unlikely to be affected by it because my well-nourished immune system would fight it off easily.
In countries like India, Mauritius and several African states, leprosy remains a problem. Sadly it’s not because the disease is especially virulent or dangerous, but because people are too frightened to get help when the symptoms show up.
Over the centuries, leprosy sufferers have been stigmatised and hounded out of villages across the world for being unclean.
The disease’s pathology is simple enough. First you spot a patch of dry skin. Then you realise it has become numb. Eventually, if left untreated, it travels down to the nerves and disfigures the host. Hands turn into claws etc. The worst of it is that people with numb limbs and digits injure themselves but don’t realise what they have done. For example, someone picks up a hot drink, burns themselves but feels nothing. The burn turns into an abscess and then goes down to the bone and surgeons are left with little option but to remove the limb or digit.
It develops slowly, so people put off going for treatment so that they are not thrown out of their village. The diseases takes hold and then there is nothing that can be done to prevent the surgery – which, when you think about it is crazy – as a missing limb is much harder to explain to your neighbours than a patch of dry skin.
I spoke to one doctor who told me he had patients who had begged him to cut off their arm rather than perform the corrective surgery. They would prefer to tell their village they had lost an arm in an accident than to be identified as a leprosy sufferer from their bandages.
The Leprosy Mission International team in Delhi, led by Arun Kumar, are some of the most inspirational people I have ever met. Arun told me how he got involved with LMI after losing his father who had leprosy in its worse form. In the end the father lost all his fingers and both his legs. Arun said that he wished the death on his father, as a release after years of watching the poor man drag himself along the floor.
During the trip we also made a visit or two to the biggest leper colony in the world.
LMI also provide Grameen style loans and training – micro-loans to women and communities, which they use to fund self-help initiatives, buying some chicken, stocking a small shop etc. I met several inspirational women there who had no choice but to get on with their life after suffering horrendous leprosy related problems.
One lady had two artificial legs below the knees but still managed to run a shop. When I first saw her she was carrying a huge metal bowl filled with boiling water. How she kept her balance I have no idea.
I visited a lady called Seema in her house – really a concrete shed with attached toilet. She had lost all her fingers and toes through leprosy but had learnt how to use her remaining stumps to decorate bangles with beads. We sat and filmed her on her bed. A rat ran through our feet causing Fatima and Nazli to squirm a bit. I told the girls to calm down and insisted we carried on filming.
At the end of the filming I bought as many of her bangles as she would sell me. As with all my trips to India, there was an underlying pain in my heart to see such suffering on such a scale with so little hope of it ever ending. Even the good things we saw being done by LMI were only amelioration, not cure.
Back to Shadhara, and the team are back on the bus.
I’m kneeling on the floor outside the hospital, trying to get a final shot of the hospital and its grounds before we too, board the coach.
A young man with a moustache wobbles uncertainly on a cheap old bike towards me. This will provide me with a nice wipe shot – as he passes out of frame I know I will be able to cut somewhere else and have it feel natural. However, the man has seen the camera and he tries to play silly buggers and come as close to me as he dares – sticking his feet out and making a silly face for my benefit. I was just about to turn the camera off, the shot ruined, when I recognized the cyclist as the man whose feet I had been filming 20 minutes before. He was still smiling.
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