“In the midst of darkness, light persists.” – Mahatma Gandhi
In the Northeastern state of Bihar, India, there is a collective of 22 leprosy colonies served by the Little Flower Leprosy Welfare Association. Little Flower is headquartered in the Sunderpur colony, tucked right on the border of Nepal. They have a small school, a microbusiness venture, and a leprosy hospital. Rising Star Outreach was asked to take over running their school until our own new campus is built, and a lovely partnership has since been formed. Due to my role as the Development Director for Rising Star Outreach, I spent some time visiting Little Flower in January of 2020.
As mentioned, Bihar is in the eastern part of India and borders on Nepal. In January, the weather is temperate on sunny days, but in the unheated, plastered, and cement rooms that we stayed in, you often felt damp and chill, especially in the mornings and evenings. Smoke, pollution, and fog can be particularly bad this time of year, and the sky was hazy and thick with it. Driving there at night, over the bumpy, pitted, often dirt roads, we laughed in disbelief as – for hours – our bus driver somehow managed to make correct turns despite the fog being so thick you could barely see a few feet in front of you; he even managed to stop in time for the lone cows that often seemed to magically appear out of the fog, right in front of us. Overall, it took us 7 hours to drive the 125 miles to reach our destination. It was a memorable start to what would be an unforgettable trip.
It was after 10 PM when we finally pulled up at our destination outside of the Little Flower complex. We expected everyone to be asleep and out of the cold, back in the school hostel or the nearby colonies. Yet out in the thick fog, we suddenly noticed a large group of smiling faces waiting for us as we stepped off the bus. The children and their teachers had waited to welcome us and came out as soon as they’d heard that we were close. They greeted us with colorful flower garlands, common in India, and broke out into a song they’d been practicing: “Happy Welcome to You!” It was touching to see their happy faces, wrapped in scarves and hats against the chilly night, so eager and excited to share their culture and home with us. We felt wrapped in their love instantly.
We spent our first few days in Bihar at the school, visiting with the students and sitting in on some classes. In the afternoons, we would leave and head to a nearby colony to work on a toilet construction project. The children trailed after us like a group of ducklings, always wanting to help or be of service and always with the largest smiles on their faces. They taught us their calisthenics routine right on the spot when they saw us stretching and insisted on carrying the bricks right alongside us – down to the smallest child – as we worked on building the wall of the community toilet. Nisha, Sagir, Basil, and the others – the memory of their huge smiles still brings a smile to my face, almost unconsciously, every time I think of them. Those children are such a light.
On our second day in Bihar, we were taken to the nearby leprosy hospital to visit with some of the patients. I didn’t know what to expect, but what we found was unlike the brightly lit, white, sterile hospitals I was used to. The women’s and men’s wards were long rooms, with beds lining each wall, down in a row. The plastered walls were unadorned, but for some wires, and stained from the condensation; in many areas, you could see the various layers of paint and plaster that had crumbled off. The small metal beds had a thin mattress and what few pieces of furniture were in the room, beyond that, were rusted and old. However, each of those thin mattresses was covered in a brightly patterned or colored sheet, bringing some level of cheer to the room. On each bed sat a patient, wrapped from head to toe in scarves and thin blankets, trying to keep warm.
We started in the women’s room and received some shy smiles as we moved along the beds, holding hands, giving hugs, and then eventually playing a little music. Our director in this area, an Indian native, originally from Delhi, had started coming to the hospital each week with a stereo and music so as to dance with the patients. Standing in that room, I’ll admit I felt pretty dubious and our dancing felt a little forced. I was worried that we would come across as patronizing to these men and women, but he insisted they loved it. Indeed, the women did seem to enjoy it.
We soon moved on to the men’s ward, and this was even more sad than the women’s. When we arrived, the power was out in this section of the hospital. Often in this region, and indeed, across India, there are power cuts and blackouts that can last for hours due to the unreliable power grid. Unfortunately, it seemed the hospital’s backup generator couldn’t light the entire facility. Entering the men’s ward, I felt chilled – not just by the cold, unheated air in this darkened room, but by the terribly dismal sight that met my eyes.
The men sat cross-legged on their beds, just as the women, wrapped in their blankets, wearing every article of clothing they had with them just to keep warm. They merely sat there, sitting silently in the dark, staring blankly ahead at the space in front of them or down at their hands. The faces that did turn to look at us as we walked in looked indescribably forlorn and resigned. There were no smiles.
When we entered, it was quite cold. Earlier in the week, I had been in a classroom similar to this room that was so cold you could see the children’s breath in the air as they breathed, listening to the instruction. It was heartbreaking. Here, there seemed to be nothing to even enlighten the patients’ minds, but instead just the cold, quiet darkness. What little light there was filtered in from the doorway at the end of the room and the few, partially-covered, barred windows at one end. To me, it felt incredibly bleak.
We all turned on the flashlights on our phones, and my group began making their way through the room, smiling, quietly saying namaste in greeting, and occasionally taking hands in ours. One of our board members, who I was traveling with, made her way around the room, hugging everyone. I followed them into the room and smiled and nodded my head at those I made eye contact with, but again self-consciously worried about how best to act. What was culturally appropriate? What was encouraging and empowering? Why, despite all I knew about the disease, did I still feel somewhat afraid? I was ashamed of my own disquiet and uncertainty.
One of those accompanying our group soon produced a small stereo and turned on the upbeat music for the dancing. Suku, our Northern Area Director, began dancing and clapping his hands in time with the beat. The women I was traveling with also began dancing and clapping as we all held our phone’s flashlights high up in the air to try to lighten the dark room. I was a bit hesitant and looked to the patient next to me to gauge his reaction. His bald head was wrapped in a checkered scarf, one of his eyes was completely glazed over (likely due to prolonged damage from being unable to blink), both eyes were tinged with red, and he’d had a vacant expression on his face when we entered. Suddenly, a small smile spread across his face, and he began to quietly clap along with the music. Just the sight of this small change in him softened my heart a little, and I chuckled at the display of my dancing group members. When he heard me laugh, he turned to look at me, and his smile widened; then, he nodded at me. That one simple act caused an instant change in my heart.
I no longer felt disconnected from the people around me; I no longer felt the worry of making a cultural offense. Instead, I felt a warmth spread through my heart, and I suddenly felt drawn to those in the room. These were my brothers.
It is sometimes amazing what little things trigger a change in us, and this moment of shared humanity was one of them. Something as simple as an honest acknowledgment and smile was all it took. We both smiled and laughed at the silly dancing before us and seemed to recognize the pure intention behind the action. Suddenly we were enjoying the moment, together. I can imagine this being what so many of the leprosy-affected crave from those they see on the streets or in their communities – to be looked at, truly, if even only for a moment. Professor and author, Brene Brown, suggests that “Connection is why we’re here… it’s what gives purpose and meaning to our lives, and without it there is suffering.” I suddenly felt grateful for the connection this man offered me and how he put to rest my own insecurities. I had come hoping to offer comfort to him but – as is often the case – felt that service in reverse.
A few moments later, a man who looked to be about middle-age got up off his bed, without a word (that I could hear), and began to dance to the music like it was nobody’s business. He waved his arms and spun and swayed around the aisle on his bandaged feet even as the bandages started to unroll! He moved his hips better than my former salsa dancing instructor and seemed to be engrossed in the music. Everyone else started to whistle and whoop along. The whole feeling of the room was enlivened and animated.
Suddenly, the lights in the room came back on. Everyone cheered. Yet the man dancing didn’t even skip a beat! He kept dancing – the electricity was inconsequential! It seemed to me almost as if he were dancing to make a statement. We continued to watch him and were moved by the life he brought to the room. Not only was there now visible light in the room, but I think we all also felt a lightening in our hearts. I know that I truly did. However, it wasn’t just thanks to the man whose dancing animated the room. The light I felt came first from the simple smile of a fellow human being – of my brother there – and of what I felt seeing his smile in that seemingly dark place. I learned something from him and looked forward to returning the next day to learn more. I was also reminded of a lesson that I have witnessed again and again and which is most dear to my heart: we all have a light within us that we can share to lighten the lives of one another. I felt that light that day, in a cold, darkened room of a leprosy hospital, thanks to the smile from a new friend and the determined courage of another.
Rising Star Outreach
Two women from two different continents and cultures who found each other and changed the course of thousands of lives.
One of the driving reasons the mission of Rising Star Outreach has been so successful is the deep friendship that formed between two very different women of vastly different cultures. Becky was All-American; Padma was Indian to her core. Padma was dedicated to political and social reform; Becky was a Mitt Romney Republican. Becky was dedicated to the beliefs of the Church of Jesus Christ of Latter-day Saints; Padma was a Hindu and just as dedicated to these beliefs and traditions. Still, their unity of purpose overrode their striking physical dissimilarities and life’s experiences.
As described by Carrie Scott
Former Development Director | Rising Star Outreach
From his boundless energy, it’s hard to guess that Jayaraj is nearly 70 years old. He is the consummate entertainer and as I walk up to him, I hear his unmistakable tenor voice enthusiastically singing, “My name is Jayaraaaaaaj” in greeting.
Like most people in the leprosy colonies, Jayaraj has had a challenging life. He worked as an accountant for a cruise line company until he was diagnosed with leprosy at the age of 20, at which point he was asked by the company to leave. After that, he taught Tamil and Math in the government’s home school even though he only has an eighth-grade education level. Jayaraj met his wife, Jayamary, while receiving treatment for leprosy. Shortly after they married, a Catholic priest in Chennai told them about the Mogalvadi colony. Both Jayaraj and Jayamary dealt with a lot of discrimination from the local people and felt it was best to isolate themselves in the colony.
I’m not naive enough to believe that he is happy all of the time or even every time I’ve been in his colony, but I think he makes a choice. He chooses to be cheerful and to joke, to dance, and to make music with us, and we love to be with him in return because there’s something perspective-shifting about being in his presence.
As described by Allison Tueller
Communications & Data Manager | Rising Star Outreach
Shanti was among the first people I met after arriving in India for the first time. A little jet lagged, I was already overwhelmed by all of the new sights, smells, and sounds of India when I caught sight of her pushing herself through the colony. I’m still amazed at how beautiful and radiant she is. Through her bright smile, she has a peaceful stillness that makes me want to be close to her.
Although it is obvious that life has been difficult for her, Shanti’s strong spirit shines through in her smile. And while she is now cured from leprosy, the disease left her with significant disabilities. Yet it is also obvious that she is more than just a leprosy patient or an amputee. She is confident and self-sufficient, happily cooking and selling food in her community.
After receiving microgrants years ago, Shanti used the money to invest in her cooking business. As it grew and became profitable, she repaid the loans and reinvested in her business. Through this process, she has found dignity and hope for a better life.
She projects confidence, competence, and grace – I watched her expertly haggle the price of vegetables with a street merchant, all while stoking her cooking fire, carefully peeling garlic cloves (essentially one-handed), and making everyone laugh and smile.
Susila lives in the Bharatapuram leprosy colony with her husband. Her husband is a leprosy affected patient and because of his disabilities, she has been the sole provider for fifteen years.
After receiving loans, training, and support to grow her business, she’s learned how to manage money, increase her sales, and support her family.
She sells perfume, incense, candles, rice cakes, and chutney. She’d like to thank all those that have supported her business which enables her family to live a better life and get an education . She does not read or write, but she has now made it possible for her children to read and write.
Jennifer was just a toddler when she began to show the signs and symptoms of leprosy. Discarded and abandoned by her parents as a baby, she was rescued by her grandfather even though he was suffering severe effects from leprosy. He was determined that she have a better life, and so he entrusted Jennifer to our care.
Luckily for Jennifer, the leprosy was caught early, so she was easily cured with just one packet of a multi-drug therapy. It is heartbreaking to think what would have become of her life without the intervention of her grandfather and that one packet of medicine.
Now Jennifer is getting ready to graduate this year. She is hoping to get one of the medical scholarships offered to our students who qualify for medical school. She wants to be an eye surgeon so that she can treat the many leprosy patients who suffer from eye problems – just like her grandfather.
Story originally told by Becky Douglas
Founder & President | Rising Star Outreach
When my friend, Padma, first visited a leprosy colony deep in the south of Tamilnadu, she had high hopes of being able to encourage the colony members to stop begging and begin small businesses by pooling their savings and then providing each other small loans, one by one.
She met with a few women who seemed to be interested, but Padma wanted to involve every woman. She began to go door to door. There were a few men who were interested and so Padma included them, as well. But she was particularly interested in the women.
The “homes” in this colony were really more like “apartments”. They had been built of cement by the government. The only difference is that these apartments had only one room. All four walls, floor and ceiling were formed by cement. There were no bathrooms, kitchens, or bedrooms. Cooking was done outside over open fires. Bathrooms were wherever you could find a private spot. The residents of the colony either slept outside or on a mat in their one room—often shoulder to shoulder.
These rooms, about six feet square, generally were not burdened by furniture, with an occasional exception of a bed. The corners of the rooms held plastic or tin pots to collect water, a tin pan or two to cook food, and perhaps a couple of tin plates for eating. Some of the homes had a rope strung overhead to dry the ragged clothes owned by the family. Other than that, the homes were barren.
Padma entered one of these “homes”. It was poorly lit but Padma could make out a lumpy shape in the corner. Intrigued, Padma looked closer and noticed that there were feet visible under the cloth. Could this be a hunched woman covered by a threadbare sari, as if someone had thrown a blanket over a piece of old furniture?
Padma gently addressed the “lump.” There was no response. She tried again without any more success, except that the protruding feet disappeared into the lump. At this point a man entered the room from the outside. He seemed surprised to see Padma in his cramped little room. “What are you doing here?” he asked suspiciously. Padma told him she had come to speak to his wife.
“Humpff”, he grunted. “Don’t waste your time. She’s mental! She can’t answer you.” He was clearly ready for Padma to depart. Reluctantly Padma turned away.
Padma was haunted by the mental image of the woman hunched down in the corner of a dark room, with a piece of material thrown over her. She tried to think of a way she could get a response from the woman and perhaps break through the silence.
A week later Padma was back in the colony to help people with their new businesses. When she finished with the Women’s Self-help Group she had started the week before, Padma made her way to the home with the woman sunk into the corner.
The husband glanced up as Padma entered. He was not pleased to see Padma back in his home. She quickly spoke up and said, “I have a gift for your wife.” She pulled a baby turkey out of the large bag that she had brought with her. The husband laughed and said, “She can’t have it—I told you—she’s mental.
Refusing to be deterred, Padma set the turkey on the floor in front of the hidden wife. She gave the turkey a little nudge toward the woman. The man glowered at Padma, irritated that she wouldn’t go away. He prepared to order her out of the house.
But the baby turkey had walked up to the woman and begun pecking at her covering. Both Padma and the husband were surprised to see the figure in the corner lift up the edge of her covering, push the turkey away, and pull the cover back down over her head.
“See, I told you so”, the man said triumphantly. “She can’t have your gift, because she’s mental.” While Padma and the husband talked, the baby turkey had walked back to the hump in the corner and began pecking at her sari. This time the woman lifted up the covering, reached out, grabbed the baby turkey, brought it into her bosom and then immediately closed the covering back down to the ground. This time it was Padma who smiled! Nothing more happened, so Padma left.
The next time Padma came to the colony an amazing sight awaited her. When Padma entered the woman’s home, she was amazed to see the woman sitting in the corner with her head uncovered, playing with the little turkey. She had apparently bonded with the little bird!
Padma was so excited with this progress that the next week when she came to the colony, she brought the woman ten baby turkeys to raise as the beginnings of a micro-business.
I later had the opportunity of visiting this woman. What a transformation had taken place. When Padma and I approached the colony we saw this woman confidently stride by, followed by a gaggle of turkeys. She looked like the Pied Piper of turkeys! Padma called out to her, “Madam, what are you doing?” She responded cheerily, “I’m walking my turkeys. I walk them for 45 minutes every morning and every night.” She confided, “They are like my children!”
As I met with her I was struck by how confident she sounded. Her turkey business had been a phenomenal success. She was now the wealthiest woman in the colony. In fact, the month previously she had been voted the colony leader! What a contrast!
It turns out that she was not “mental” at all. She had been so terribly depressed that she had just pulled the hood over her head and waited in the corner to die. Now she was a happy, confident woman.
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