Leprosy aid – the stories of sufferers  

Singeshwar 

In May 2009, I met again with Singeshwar, one of our former leprosy patients in Varanasi. I had already learned from other team members that he arrived a few weeks before in the city from his village. He is in poor health and came straight to our children's home, seeking medical assistance. He suffered from diarrhoea and could not stand the heat. With proper medical care, he however quickly regained his strength. Many former leprosy patients suffer greatly under the hot weather, as their transpiration is impaired so that their body temperature rises excessively. Singeshwar was one of the worst such cases.

BTL - Leprahilfe - Betroffene - SingeswharBTL - Leprahilfe - Betroffene - Singeswhar

I was delighted to see him again, as we had always been very close. He told me all the news from the village: the small girl he had brought with him to the city in 1997 as she showed first signs of leprosy had since been fully cured thanks to our medication. She had since married and just given birth to a healthy child. Singeshwar showed me a photograph of the young woman, who had suffered no visible scaring or disability from the disease. Although her treatment had taken place some years ago, the picture brought it all back to me.

BTL - Leprahilfe - Betroffene - SingeswharHe then told me that the water buffalo we purchased for him when he returned to his village eighteen months ago had been in calf and that he is now the proud owner of a second animal. This buffalo cow had definitely brought him luck, as she was in calf again for the second time. According to Singeshwar, her milk and the yoghurt made from it were simply delicious, and he promised to bring a large bowl of it to Varanasi so that we could taste it ourselves. He was delighted with this idea, and not in the least bit swayed by the fact that the journey from his village to Varanasi took him 22 hours.

Singeshwar then told me about a child in his village who had probably contracted leprosy. We arranged with him to bring the boy to Varanasi after the hot season had ended. We would then have the child tested and treated, if necessary.

BTL - Leprahilfe - Betroffene - SingeswharHe then showed me his disability pass he had applied for from the government. Looking at the document, I nearly fainted: Singeshwar was obviously severely disabled, without a single finger or toe left, walking on stumps rather than feet, without a nose bone, and with drooping lower eye lids so that his eyes dry quickly, posing a serious risk of going blind. In addition, he suffered from many other, not so obvious medical complications. However, the state considered him only disabled by 40 per cent! All I could conclude was that one had to be dead to be assessed as 100 per cent disabled. This all made me very angry. In Western Europe, a person suffering like Singeshwar would probably be considered "120 per cent" disabled, and thus entitled to full social welfare support. While I knew that such a comparison was rather pointless, I still considered the 40 per cent disability assessment as an insult to Singeshwar.

Singeshwar did not really understand why I had suddenly become so agitated. He was actually quite happy to have an official document with his name in his pocket. For him, it proved that he existed and was part of society. I was once more humbled by the strength of character and modesty of a man who had suffered so much in life.

BTL - Leprahilfe - Betroffene - SingeswharWith a big smile on his face, he then handed me a roll of film. It contained pictures of the daily life in his village, taken with a small, clapped-out camera that I had given him many years ago. In the past, he had a few occasions where he surprised me with similar pictures of rural life. At the time, we had given him the most simple camera type, given that he had no fingers to press any complicated buttons. It just came with a shutter that Singeshwar could operate with the knuckle of his hand.

BTL - Leprahilfe - Betroffene - SingeswharI was delighted to hear that he was happy with his life and had settled back into his village without great difficulty. He showed me the stumps of his feet, which, for the first time in fifteen years, were free of wounds. This was not least due to him living in a proper house in the countryside. Singeshwar then asked me whether I could grant him a favour that would make his life that little bit easier. He was looking for a manual wheelchair with manually operated pedals, similar to a hand-operated bicycle. Such a wheelchair would allow him to travel the long distances to the market and to other houses in the village. We very glad to organise such a contraption for him. After a few days in Varanasi, he returned home in his new wheelchair.