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“I like to keep busy because it gives me strength and keeps away negative thoughts about my condition”

When Bhagwati Devi (34) from Upper Dadh was five years old, people noticed that she started walking on her toes. Her parents were not unduly concerned and dismissed it as a quirk. But when Rajni (that’s what she likes to call herself) entered Grade 4, her mother Kushla Devi and father, the now deceased Amichand who was a farmer, realised their daughter was struggling when trying to get up and walk. And, as rural folk in Himachal Pradesh are wont to do, they turned to traditional medicine, but when neither vaid nor hakim could provide a remedy, they turned to quacks and spiritual healers. Nothing worked.
Rajni was in Grade 8 in 2001 when they finally took her to Dayanand Hospital in Ludhiana where she was diagnosed as having limb girdle muscular dystrophy (LGMD). Muscular Dystrophy is a disease that causes progressive weakness and loss of muscle mass. Doctors there did not elaborate, only saying her problem would aggravate in future. But the positive-minded Rajni didn’t let it crush her. “What is the worst that can happen,” was her attitude.
She continued to walk two kilometres to the Government Senior Secondary School in Dadh. When she was in Grade 9, her brother, Sanjay Kumar, who is four years younger, joined her school and they started going together. They would set out from home much earlier than other kids because Rajni took her time to walk the distance. She says she didn’t have any problems in school as such but her teachers were insensitive to her condition. During the chilly winters, they would take classes outside on the ground to catch the sun but because of her disability, she found it difficult to do so, forcing her to remain inside and miss out on studies. She also did not have any friends. 
Rajni dropped out after Grade 10 because her father was ill intermittently and her mother had to look after him. However, at Sanjay’s insistence, she completed Grade 12 through distance education, and just two years ago she completed her BA through correspondence.
Rajni’s association with Chinmaya Organisation for Rural Development (CORD) in 2003 was fortuitous. Her mother was a member of the local Mahila Mandal and Rajni often accompanied her to the meetings. One of CORD’s field workers who came to these meetings invited her to join them. There she was educated about her disorder and advised to follow a strict exercise regimen. CORD motivated her and she learned skills like making rakhis. She also began to be involved in household chores.
She is grateful to CORD for bringing her out of her isolation. Ever since childhood she disliked going out, and her mother told us why. “Whenever we went for any function people would stare at Rajni because she needed help in sitting, getting up, walking and everything.” Rajni added: “If we go out my mother has to focus on me and be around me all the time and she is unable to relax in company.” Her sister, Chandresh Kumari (35), lives in her marital home, so the responsibility always falls on Kushla Devi, who is now 57.
Today, the ever positive Rajni says everyone can do something to make life better. Her wish is to have a job and be financially independent. She does not like when people try to help her without asking her whether she needs help. She likes to keep herself busy with activities such as looking after a flock of chickens at home, as that makes her feel strong and keeps out negativity.
She does not see herself married. She knows the day will come when she has to use a wheelchair or even become bedridden. She is bent on postponing that day as much as possible, exercising staunchly thrice a day. One of her exercises is being tied to a pillar for an hour. The idea is to put her body weight on her heels. This is not easy but it’s the only treatment to keep her leg muscles strong.
Her routine is pretty simple but busy. She wakes up at five and her mother gives her tea. Then it’s time for the first round of exercise before she sweeps the house. After bath and puja, she makes lunch for Sanjay and cleans the kitchen. Mid-morning is when she is tied to the pillar. After that she rests a bit before lunching with her mother. While Rajni single-mindedly follows her routine, Kushla Devi hopes that after she is gone, Sanjay and his future wife will look after her brave daughter.


Vicky Roy