Abandoned by my husband – Geeta’s story

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24-year-old Geeta and her daughter © Ruth Jones

Former intern Ruth Jones remembers her trip to India to visit some of the many people who will be helped by the CREATE project, a new Leprosy Mission project in India that aims to challenge negative attitudes about leprosy and help people affected by the disease into job training and the workplace.

The opportunity to travel to India and to see the work of The Leprosy Mission and the CREATE project was so eye-opening for me. During our trip we travelled to many different places and met many leprosy-affected people; all were warm and hospitable to us despite the often sad and desperate situations they were facing.

One person I met whose story had a particular impact on me was 24-year-old Geeta.

We had only been in India a few days when we made the long journey to Geeta’s village, travelling along dusty rural roads. When we arrived at the village, Geeta and her young daughter greeted us. She was happy to see us, but also a little apprehensive as she didn’t want our arrival to draw attention to herself – and I was soon to learn why.

We entered Geeta’s home. This home was once a place that had contained joy and excitement for Geeta as she started married life with her husband and as they had their first child together. Now, however, it is a home that feels empty as she raises her daughter alone, without the love and support of her husband.

Geeta’s husband has abandoned her because she has leprosy; her mother-in-law is trying to persuade him to divorce Geeta. She first noticed something was wrong two years ago, when she started to experience tingling in her left hand. Now she’s cured of the disease, but the stigma surrounding it remains and Geeta has been rejected by the people who should love and care for her.

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Geeta’s hand affected by leprosy © Ruth Jones

What struck me is that Geeta is a similar age to me. I am engaged and excited to start married life with my husband and we are looking forward to living in our first home together. I just can’t imagine how terrible it would feel to suddenly be rejected by someone you love because you have leprosy, a disease which is curable but is still surrounded by stigma so powerful that it tears families apart.

But despite this, I have hope for Geeta. My trip showed me how Leprosy Mission staff are working hard to raise awareness in villages like hers about leprosy, showing them that leprosy is not something to fear. Training up ‘Leprosy Champions’ to advocate for an end to stigma and discrimination and for better treatment for people affected by leprosy from employers, schools and authorities will make such a huge difference to people like Geeta.

My prayer for Geeta, her daughter and every other leprosy-affected person I met, is that the CREATE project will be able to help them find acceptance from their families and communities once again, and that the fact they are leprosy-affected won’t hold them back from living happy and fulfilled lives.

You can give a gift to fund the training of a Leprosy Champion to help someone like Geeta live life to the full.

 

“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.

“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)