“Friendship, community and peace.” A visit to Purulia leprosy community

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A resident of Purulia leprosy community. Photo: Hassan Nezamian

For Lent this year, we’re focusing on Purulia Hospital in India and the many people who rely on its services. Here, Head of Mission Development Zoë Bunter reflects on a visit to Purulia leprosy community.

The heat was overwhelming as we climbed out of the air-conditioned car we had travelled in. I glanced around, trying to take it all in. I had never visited a leprosy community before and this one, near Purulia hospital in India, was in a remote location. We had travelled for some time along rough tracks and makeshift roads to get here and now it felt as though we were in a tiny village in the middle of nowhere. Curious faces watched us as we arrived, and the hospital staff greeted old friends and introduced my travel companion and I.

I was on my first trip with the Leprosy Mission back in 2014, to see the work for myself. My travelling companion, Hassan, was a volunteer and a photographer, capturing scenes of our work. We had pulled up in the centre of the community, close to the men’s quarters. The people who lived here looked at us expectantly and I knew I was expected to say something to the 30 or 40 people gathered around us.

The hospital nurse translated. I said how honoured I was to visit them from thousands of miles away, how we would love to spend some time with them, and I asked permission to come into their community for a few hours. Most of all I said I carried love with me – the love and care of people in England and Wales who prayed, gave gifts, and sent messages of encouragement and care.

The community would have once been called a ‘leprosy colony’. The people lived in this isolated place, surrounded by trees, because they had been rejected from the town. Many had severe disabilities and all of them were elderly. My guess is that the youngest person here would have been in their early-seventies, the oldest well into their eighties. They were decades younger when leprosy first took hold, before there was a cure. The disease ravaged their bodies and caused irreversible damage to hands, feet, arms and legs. They were cast out of homes and families, and Purulia took them in.

Residents of Purulia leprosy community. Photo: Hassan Nezamian
Residents of Purulia leprosy community. Photo: Hassan Nezamian

The noise of bird song was almost deafening, as we trudged the five-minute walk through the long grass to where the women lived. Smiles greeted us and women with faces wearing the marks of hard lives welcomed us into their humble homes. Built of brick, each person had their own room to sleep in. But every mealtime all the residents came together in the centre of the community where food was cooked over an open fire. Mealtimes were a social occasion!

The nurse explained about the solar lamps we saw on the buildings. He told us the government had refused to provide electricity to the community so the only light at night was through solar energy. These people weren’t considered important enough to need electricity.

As we walked back to where the food was cooked and where the men lived I was struck by something; love was here in this place.

The hospital staff and residents chatted easily – there was laughter and joking, there was compassion and care. The Purulia Hospital car or minibus would come here to collect those needing hospital treatment, and return them home after they had received medication, recovered from surgery or had ulcers and wounds dressed. But there was also love among this group of very special people. They sat together talking and sharing; together they weaved mattresses or drew water from the water pump. They knew each other like brothers and sisters, a big extended family.

I asked a woman about her life here in the community and she said, with a beaming smile, that she was happy here. Here, she told me, she was with others like her. No hatred, no name-calling. This was her home.

I had come from the UK hearing stories in the news about elderly and frail people struggling with the torment of loneliness. Here there was no such thing. I don’t want to romanticise life in Purulia Leprosy Community, it was clearly a hard life with none of the luxuries that I so easily take for granted. Sores and ulcers were a constant threat, the risk of infection and sepsis was very real. But here I saw love. People thrown together by the hatred of those who didn’t understand had found friendship, community and peace.

As I remember that morning in India, I am challenged by my misconceptions of what will bring me peace. I often think it will be security, nothing to worry about, being able to switch off from anxiety.

But I have seen the ‘surpasses all understanding’ peace that is promised in the Bible alive and well in a place where there is little security and everything to worry about. But what I do know is that this little community in West Bengal, and those who live here, have been bathed in the prayers of the prayer warriors of The Leprosy Mission – in the UK, in the chapel at Purulia Hospital and across the globe.

We do not always realise the power of our prayers, but I have seen the love of God poured out on those whom the world rejected, in loving response to the prayers of the saints.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7 (NIV)

Mithu’s journey to a new life

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Mithu in 2013, as an inpatient at Anandaban Hospital, where she was treated for leprosy reaction.

When we met Mithu in 2013, it was four years since she had been diagnosed with leprosy and her journey to Anandaban Hospital had been a long and painful one.

Growing up in a very poor family in a remote area of Nepal, Mithu started work – as a cleaner in a hotel – at the age of 13. She had been working there for two years when she started to develop loss of feeling and swelling in her hands, which soon made her job difficult. The local health centre was not able to offer her any advice. Scared and not knowing who to turn to, Mithu was listening to the radio one day when she heard about a clinic in Surkhet District – and she decided to make the journey there in the hope of finding out what was wrong.

Travelling alone, it took Mithu three days to reach the clinic – two days of walking and a day’s bus journey. She didn’t tell her parents where she was going or what she thought was wrong with her. Then her worst fears were confirmed. Mithu was given multidrug therapy and sent away. She didn’t want to tell her parents about her leprosy, but in the end, she felt forced to. The signs of the disease had become visible – her nose had partially collapsed.

Because she had leprosy, Mithu was asked to leave her job at the hotel and had to return to her village. Once her neighbours found out about it, they began to stigmatise her.

“When I used the common tap or wash area, people would clean it before anyone else would use it. Sometimes I would not go out – I just stayed at home and cried.”

Mithu’s sister-in-law did not even want her in the family home and refused to let her touch her young son.

“Either Mithu leaves this house or I do. I will go home to my parents,” she told the family.

Mithu loved her nephew very much and was hurt that she couldn’t look after him any more. But she would not leave home and in the end, her sister-in-law made the decision to leave instead, only returning when Mithu became an inpatient at Anandaban. She was showing signs of leprosy reaction and was referred there for treatment in 2013.

At Anandaban, Mithu was diagnosed with severe leprosy reaction, which can cause intense pain, skin nodules, fever and nerve damage. It took more than a year to successfully treat the reaction and Mithu was scared about what the future could hold for her.

“At Anandaban I have made friends and have people to talk to. At home I will be alone,” she said. “While I have been away my sister has also been diagnosed with leprosy. I have cried a lot because I think it is my fault and that everyone will blame me. How much blame will I face at home when I go back? I don’t know what I will do.”

Mithu, who had never been to school, was learning to read and attending other education classes at Anandaban. She wasn’t sure what her future held but was reluctant to go back to her village due to the stigma she had faced, even though she missed her family.

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Mithu at Anandaban in 2016, where she now lives and works after finishing treatment.

Recently, we were thrilled to meet Mithu again and hear about the amazing transformation in her life since she first came to Anandaban. Now 22 and completely well, Mithu has had reconstructive surgery on her nose. She’s still living at the hospital, but this time as an employee, with her own home next to the self-care unit where patients learn to look after their leprosy-affected hands and feet.

“I clean, cut the grass, look after the animals and the garden,” she said. “I also help the patients with their self-care.”

Mithu shares her life at Anandaban with another person who has helped her find love and acceptance there – her husband. He is also affected by leprosy and has stayed on at the hospital following treatment to work at the self-care unit. They’ve been married for a year and Mithu smiled widely as she told us about their life together.

It’s clear that her time at the hospital has not only helped Mithu heal physically and emotionally, but has also given her a new purpose in life, new friends and much happiness. It’s what makes Anandaban Hospital such a special place – and why people like Mithu appreciate your support and prayers for The Leprosy Mission’s work in Nepal so much.

Find out more about the projects you support in Nepal.

The bridges you’re helping to build

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New accessible bridge in Kyar Daw, Myanmar.

This bridge is a lifeline for the people of Kyar Daw, Myanmar – and you helped build it.

Your gifts, together with funding from UK Aid, were instrumental in replacing a rickety, hand-made bamboo structure (pictured below) with a concrete bridge that’s fully accessible for everyone – from children to the elderly to disabled people. The bridge provides a vital link with the school, clinic and market in a nearby town meaning that people in Kyar Daw can get there without taking their lives into their own hands.

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Programmes Advisor James Pender walks along the old, unsafe bamboo bridge.

Improving accessibility is a key element of The Leprosy Mission’s work in Myanmar – a country where many people we work with live in remote areas with no public transport, proper roads or easy access to public services.

Thanks to training and community mobilisation, many people affected by leprosy and disability are being empowered to advocate for change in their own neighbourhoods. U Soe Win is just one of those people and we had the chance to talk to him recently about the changes he’s seen as a result.

U Soe will always remember the “saddest moment” of his life. It was the day his daughter Daw, 15, who was selected to represent Myanmar in the East Asian Rowing
Championships, was setting sail for Singapore.

The proud parents of all the team members were at the harbour to wave their children goodbye – apart from U Soe.

“I didn’t want to bring shame on my child,” he said. “It was one of the saddest moments of my life.”

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U Soe Win

It was U Soe’s leprosy that made him too ashamed to be there for his daughter’s special day. He was diagnosed with the disease in 1983, aged 33. But the traditional treatments he tried failed and his hands and feet became severely disabled. Fearful, because of the discrimination he suffered, he shut himself away.

A decade later, the vegetable farmer was listening to the radio when he heard about multidrug therapy – the cure for leprosy – and set off to find the clinic mentioned. He took the drugs and was cured – although the effects of leprosy on his hands and feet sadly can’t be reversed.

U Soe is now chairman of his local Self Help Group (SHG), made up of people with various disabilities. The group received training from The Leprosy Mission, learning about their rights under national and international law and how to lobby for them.

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U Soe Win’s self-help group.

Since receiving training, they have had many advocacy successes, particularly in making sure their local area is more accessible. New wells have been dug; bumpy roads repaired and widened to improve access for wheelchairs; and new wheelchair ramps installed at a hospital and a school.

Other successes include children with disabilities being readily accepted in schools for the first time and many local people learning about disability and discrimination through drama workshops – contributing to changed attitudes towards U Soe and the rest of the group.

Most recently, when the case of a man who raped a disabled woman stalled in the courts, U Soe met the judge and court officials pushing for the case to he heard. The man has now been jailed for 10 years.

Thank you for partnering with us to transform lives in Myanmar. Once too ashamed of his illness to leave the house, U Soe is now a confident advocate in his community, building bridges and improving life for people with leprosy and other disabilities.