A child of leprosy
Komal, 17, has spent a lifetime in leprosy colonies despite not having the disease, causing her to grow up in isolation.
By Angela Gonzalez
Komal does laundry in front of her home Jan. 15. She spends most of her time at home to help her parents do what they at times cannot. Helping with chores gives her mom a chance to relax while her hands flame up from leprosy. “I’ve never felt pressured to do this,” Komal said, “but people would make fun of me for not taking care of my parents and seeking an education.” | Photo by Angela Gonzalez
Komal couldn’t believe the words that had just escaped from her teacher’s mouth.
She had been cut from school. Too many absences. She couldn’t help but let the tears spill out, and they continued to fall as she walked home. Inside the safe space of her house, her mom came up to her, concerned. Why wasn’t she at school? And why was she crying?
Her mom comforted her, telling her it was all OK. She could now learn what was really important: housework. Later, Darshan — Komal’s now-fiancé — took her out for a bit and bought her chocolates. But Komal continued to feel defeated for the next three days.
“My mom was sick and I had to help her,” Komal said. “I didn’t have time to study or go to school. Nothing is more important than my mom.”
Komal is part of the second generation of 40 families living in a leprosy colony, bricked off from the rest of Kaithal. There sits a wide cobblestoned, soccer-field sized courtyard with a few trees dotting the area. The red cement houses are connected and wrap around the courtyard. Each home consists of one room and a small kitchen. Colorful curtains are used as doors and lines are tied between trees to dry laundry.
Here, families dealing with leprosy can live away from the stigmas and receive donations to live off of. Dealing with similar backstories, those in the organization have built their own community and have become one big family. But those like Komal who have no leprosy grow up in a place not meant for them and seem to make sacrifices everyday.
A makeshift fire flickers underneath the weathered brown hands of women. They speak to one another in Hindi as they snack on peanuts, feeding the shells to the flames. Komal’s mother, Sushila, holds a metal tube with her rash-covered hands, ready to blow in if the fire begins to die.
Sushila was born in a leprosy organization in Andhra Pradesh, about 1,000 miles from Kaithal. Both her parents had the disease. At 17, her parents passed away, but not before she was arranged to marry Komal’s father, Ishwar Prasad, a son of another family in the colony. He too had leprosy. All the two have ever seemed to know are leprosy colonies.
Sushila has had leprosy since she was 14 and at times can barely use her hands due to the pain, leaving Komal to do what she can’t. Komal is used to carrying big buckets of water around when needed, washing laundry and cleaning dishes right outside her front door. She even helps her father unload his cart full of donations at the end of each day.
For five years Komal has lived in the Kaithal organization owned by a Hindu priest with her parents and 14-year-old brother Dev. Even before living there, the family lived in another leprosy organization in Delhi, but moved to Kaithal due to the rebuilding of the houses in Delhi.
On the gray cobblestones sitting in front of her small home, white powdered chalk flowers lead Komal and her family to the front door where more black swirls, shapes and blooming flowers are painted on the threshold of the door.
On Independence Day, Komal can be seen dancing for her family and the rest of the colony, moving along to both Bollywood music and traditional Haryana songs with a smile on her face. Dancing is something that makes her think of her two older sisters who taught her how to dance. They are now married and have moved out, leaving her the only teenage girl.
Komal also enjoyed wrestling. A man used to come visit the organization and teach the kids games like kho kho. Every Sunday Komal would be eager to play and wrestle with the other kids of the colony. But one day the man never came back. Wrestling was over.
“I miss it,” Komal said, her dark brown eyes falling on her mother, “but I just want to learn stitching. Wrestling was just for fun.”
“My mom was sick and I had to help her. I didn’t have time to study or go to school. Nothing is more important than my mom.”
“There is no guarantee of life,” Sushila said. “We need to teach our children the important things.”
Now, with no school to go to, Komal spends her days doing housework and being there for her mother. Soon, once she gets a stitching machine, she’ll learn how to make different designs on clothing, something her mother thinks will benefit her.
Despite Komal being cut from school, her mother thought it was best if she stayed home anyway. Sushila wanted Komal to learn the ways of being a good housewife, but also feared for Komal’s safety at school.
“There was a boy outside the school who would take drugs,” Sushila said. “He would follow Komal to school and back home. I talked to the police about it, but they did nothing.”
Along with that, Komal and her brother have faced bullying in school.
They’d endured the name “Child of Lepers” and many avoided them, thinking they had the disease and that it could spread with one touch.
“They would always remind us about our parents having leprosy,” Komal said. “But I would ignore them. I was taught to treat others like how I want to be treated.”
Komal has accepted the life she has, but that doesn’t stop her from thinking about what her life would look like without leprosy.
“I would want us to have our own house,” Komal said. “My father wouldn’t have to beg and we wouldn’t have to rely on donations.”
Each day, instead of going to a job, Komal’s father heads out on a red bike with a big cart attached to the back. He rides to nearby neighborhoods, knocking on doors, asking for any type of donation for the colony. On a good day his cart is filled with large bags of food, bundles of clothes and an assortment of rupees.
As he gets home, Komal and the boys are sent to help him unload the cart.
But what stands out the most is the tall red Hindu temple sitting at the far end of the courtyard. Colorful lights hang in the canopy and a turquoise door leads Komal inside. Blue and white statues of gods sit inside with twinkling lights and golden flowers
The temple is called Shama, which translates to “sorry.”
When a donor comes, the sound of a ringing bell alerts all the families to come and receive the donation — usually clothes and food. Many people come every day, but not many stick around to get to know the families, or sit around a fire to share tea.
The organization is seen as a place for the colony’s neighbors to receive forgiveness from the Hindu gods. When Haryana people go through hard times or feel guilty, they go to their priests, seeking guidance. They’re told that if they make a donation to the colony, the gods will be pleased and forgive them. They come to the temple and quickly leave.
“No one ever really stays,” Komal said. “They come for the temple. Only the priest comes to visit and talks to us.”
Komal draws with colored pencils inside the leprosy colony Jan. 18. She sketches floral designs next to her brother and a few other kids from the colony. “I learned how to paint on YouTube,” Komal says, “Googling photos and trying to draw them.” | Photo by Bella Haveman
With no kids around her age, not being able to go to school anymore and no one ever staying to talk, Komal mostly spends time with her family and older neighbors.
Komal lay in bed, unable to move much. Her already small body had become more skinny, her ribs unusually visible. She hadn’t been able to keep any food down for a while.
As her mother did her best to tend to her, she wondered if this sickness would ever go away. It wasn’t long till her father reached home, a bag in hand. He went over to his small Komal and pulled something tiny and colorful out.
Candy.
Komal smiled as her father handed it to her. “At least something is being eaten,” he thought.
It took Komal a while to get better, but in the meantime she was able to suck on the little candies her father brought her.
Komal and Sushila sat together, sipping chai. They laughed together, recounting all the times Komal was naughty as a child.
Once, she and her older sister were dancing. As they swished around, they took turns picking each other up for aerial moves. Komal prepared herself for another throw. Her sister gripped her sides and threw her up again, but the throw was weak. Komal fell in a heap on the hard ground, her head bursting in pain. Her sister rushed to her side and helped her up. Komal’s head throbbed in the back. She put her hand to where it hurt the most. Her eyes widened — it felt wet.
She was bleeding.
Komal began to panic with her sister. What would their mother say if she found out? Komal’s sister found a cotton cloth and did her best to clean up the wound. They had to hide it from Sushila. That didn’t go well for them.
At the time, that incident was scary, but now the two can’t help but giggle at the story.
Komal, her parents and her brother sat bunched up together on their bed, their faces lit up by the shine of the horror movie playing on the TV. Dev slid off and got in front of the TV, a smile on his face. Soon the whole family was laughing as Dev did his best snarls and growls, impersonating the monsters flashing on the screen.
“I’m not looking forward to leaving,” Komal said. “I’ll miss my family a lot.”
“This can happen to anyone, but this is a normal life. What can I say? What does God say? No one knows.”
Komal has been arranged to marry Darsham, who she’s gotten to know since they were kids and who is also her second cousin. In leprosy communities courtships are very different from regular Indian courtship, all due to the stigmas that come with leprosy. Those living in the colony hardly ever get to meet new people, much less grow a relationship with them.
“We’re okay with it,” Sushila said when talking about the matter. “We all know each other here.”
Most marriages happen with others in the organization. They are able to understand each other and have no fear of being judged or being treated differently.
Komal’s marriage was arranged, but she had already fallen in love with Darsham. He has given her gifts, knows her parents well and takes her out on walks.
“I was scared at first,” Komal said. “I was thinking once we got married he wouldn’t be nice and wouldn’t allow me to go back to studying. But he’s not like that.”
Soon she and Darsham will marry and will have to leave. Only those with leprosy are able to stay and live in the organization. Neither Komal or Darsham have leprosy.
Komal hopes to stay in Kaithal near the organization, some place she and Darsham could rent and visit her family as much as she can. She wants to continue learning how to stitch and eventually open up her own boutique. She also wants to go back and finish her education when she has the chance.
Despite living an isolated life, Komal has learned so much during her time at the colony.
“I’m learning everything about the organization and how it works,” Komal said. “This can happen to anyone, but this is a normal life. What can I say? What does God say? No one knows.”