“People kept their distance” – Jaseem’s story

Alisia O’Sullivan reflects on her trip to India to meet the CREATE project team and some of the people they will be helping in the future – including Jaseem.

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A man affected by leprosy in one of the villages in India I visited. Photo: Ruth Jones

On my last day of my first trip to India to visit the work of The Leprosy Mission there, I tried to capture some of the many thoughts and feelings whirling around my head in writing:

‘Poverty, humility, despair, hope, pride, change, beauty, contrast, noise, pollution, exciting, exhilarating, HUGE.

‘How can I encapsulate all I’ve seen? It’s been so busy and such a jam-packed schedule to visit examples of our work and see the needs of leprosy affected people in India.

‘It’s been difficult to process everything – and now I’m here on the last morning before flying back to the UK and I finally have time to pause and reflect.

‘I thank God for the clean bed I’m staying in. As the monsoon rain pours down I’m dry, mud-free and there’s no stench of animals and their waste (an ever-present odour as we visited leprosy-affected families and communities).

‘I thank God that I’m going home to a family who love me – and whilst I’m not perfect, they would never throw me out because I contracted a curable disease.

‘I thank God that I have a good job and can help people affected by leprosy, so when I tell the stories of people in need, I pray that I do honour them – that I can say what I saw and convey the need, but also that I can show what a difference can be made in their lives.’

Here’s a story I want to share about 22-year-old Jaseem, who was facing an uncertain future on the day we met him.

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Jaseem, a young man affected by leprosy. Photo: Ruth Jones

Early on in our busy trip to see the CREATE project, we arrived in a remote Indian village where the streets were so narrow that we had to abandon our car and walk the final part of the journey on foot, causing quite a stir as people noticed our CREATE t-shirts.

Throughout the trip I was especially conscious that meeting young people affected by leprosy and interviewing them is quite a responsibility, asking personal questions about such a difficult subject. With Jaseem, much of his story was articulated not through words but rather through his sad stare and nervous hand wringing.

It tugged at my heart that when Jaseem was being photographed, I noticed how one of his younger brothers slipped away out of the frame – maybe because he was shy or perhaps because he was too embarrassed by the crowd and the attention being given to his family, who have been through so much. I really felt his sense of rejection and uncertainty that day.

Jaseem shared with us that when he discovered he had leprosy, he felt worried and that his life was not worth living. He said he only started to feel better once he was under the care of the hospital where he received reconstructive surgery on his hand and foot.

Unfortunately, despite being cured and with his mobility improved, he experienced ongoing discrimination in his village. People would not sit with him or kept their distance and he took care to hide his hand. It was heartwrenching to hear that such a handsome and bright young  man was being shunned by his neighbours. Living in a remote community, he had nowhere else to go.

It was a stark reminder that even when people have been cured of leprosy, their lives are not necessarily transformed. It’s a much bigger challenge to educate and change the hearts and minds of isolated communities where age-old prejudices are rife. That’s why the CREATE project, which will tackle discrimination in four states across India, is so badly needed.

Later, I discovered that Jaseem has been looking for work after completing training as a mobile phone technician but frustratingly, he had not been offered a job, again due to the stigma associated with leprosy.

When I asked him if he thought things could change for people like him affected by leprosy, he said that people would not listen to him, but would listen to people like us,  by which he meant the CREATE team and doctors.

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CREATE project staff raising awareness about leprosy in rural India. Photo: Ruth Jones

As we left I wanted to encourage him and said we were looking to help and would be praying for him and his situation. Jaseem thanked us profusely and CREATE project staff assured me that they will now be involved in advocating for him as he looks for work and to tackle stigma in his village.

There are many more young people in India just like Jaseem, facing uncertainty and anxiety about their futures because of their leprosy. By supporting the CREATE project, you could play your part in making sure stigma is stamped out and that people affected by leprosy will have the opportunity to complete their education, work and look forward to brighter futures.

Find out how a gift from you could help stop leprosy discrimination in India. You can also watch a video of Jaseem talking to Alisia about his experiences.

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“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.