written by Victoria Elliot, Podiatrist at LLSC in January 2006
Sushila, is a 70-year-old lady, who tells a sad story and one that challenges our rehabilitation skills to the maximum. Her ethnic caste is not a common one; Jhapa district has only 58,024
Rajbansi people. (CBS 03)
She is from Itta-Bhatta in Jhapa. The Rajbansi people have their own language and customs. Her caste are farmers, well known for building houses.
As a young child, the older of two girls, she married young at around ten years old. Her mother was already dead and just after her marriage, her father also died. Child brides were not uncommon in that time.
According to the custom she moved to her husband’s family home and gave birth to a son and a daughter. Sushila recalls this as the happiest time of her life. Marriage and having children are vital social norms to fit into a south-eastern Nepali village.
Her main role was cooking, cleaning and helping on the family farm. Most households with small holdings have goats and cows.
Sadly, both her children died and at that time she discovered a large patch on her left arm.
By the time the leprosy bacteria was discovered her feet had already started to ulcerate.
The loss of feeling in the feet meant that she lost her toes. On seeing Sushila’s wounds, her husband built a separate tin-roofed, one-room building to house Sushila. Her husband then took a second wife, to bear him children. At first her husband continued to feed her but she suffered from leprosy alone.
The progression of leprosy left Sushila with no fingers and an amputated right leg. Her left leg has a stump foot.
It is difficult to determine when it happened, but her husband also died, leaving Sushila without help. The second wife’s son was too young to help at that stage.
Sushila’s younger sister had previously died during child birth (her son lived), but currently her nephew is not in touch with Sushila. Her nephew also lost a baby girl – Nepal is a country with maternity healthcare problems.
At the height of her sadness Sushila cried for ten months and worried about her future as she had no family left to feed her and look after her.
She became an outcast, going from house to house begging for whatever food they could give her. By that time she was becoming older. The locals took pity on her and told her stepson to feed her. He was shamed into giving her food.
She came to Lalgadh after attending a field camp in her area. Eileen Didi referred her to the Centre at Lalgadh to receive medical care of her wounds.
Six years earlier, in 2000, her wounds had become serious. A series of minor operations did not improve the growing ulcer on the right leg stump. In 2005 at The Leprosy Mission hospital she had had further treatment when her stump was cut back. Although now healed Sushila cannot use a false limb. She uses an adapted wheel chair for mobility, but does not go far for fear of falling.
She was very happy for her story to be written. When asked what her favourite food is and her favourite colour, she does not know. “All is OK”, she replies. When asked “What do you want to do in the future?” Her answer is: “Sit and eat with others”.
To “sit and eat with others” is not a big request in our eyes, but after being shunned by the few people she has left, it is a good reason to want that. Her story so reflects the stigma experienced by a leprosy-affected person, and by a woman unable to bear a healthy son. A village man in rural Nepal may still take a second wife, and put away the first. The importance of family is paramount in this society, hence Sushila crying for ten months.
Recently her step-son was contacted to arrange a meeting. It is hoped to be able plan to meet Sushila’s needs. She needs food prepared for her, as her mitten hands cannot hold anything. She has a leather strap with a pocket for a spoon.
This is just one case, where Lalgadh services are essential. Though challenging it is hoped that Sushila will be given the chance to “sit and eat with her people again”.
Today, despite what this lady has lived through, she smiles as I enter the ward, and I feel I could never understand the level of suffering she has been through.