The first time I saw her was as a kid, and I remember that she was very beautiful.
She was a very distant relative. She’d smile when I called her Maiju. But I didn’t know much about her then. When I started working at Possible, she was one of the patients on my list.
Her husband worked in India many years ago. He’d come home maybe once a year. At one point we heard he was sick. Her relatives in Mumbai would tell her about his illness. Later she went there herself with her daughter and stayed for about a year.
Her name is Setu. In one of my first visits to her house, I was compelled to ask her something. I said to her, “Maiju, I will ask you something, please don’t be mad at me. Does your husband look after you, is he supportive?”
She always seemed to have something weigh on her. I told her that she looked sad.
I could see she wasn’t surprised by what I had asked. She began to tell me her story.
Her daughter had died in India when they were there. It was a very bad accident, and she didn’t have her community there to console her. It troubled her greatly, and so they moved back to Nepal.
A few months after coming back home she said her husband started showing symptoms of AIDS. His health deteriorated every day. It was said that Setu also had AIDS, and that she got it from her husband.
In those days this was said to be a new disease. We couldn’t even say “AIDS”— it was considered to be an embarrassing thing to say out loud. Later on they would call it the “Bombaiya disease,” because men who’d gone to work in Bombay would bring it with them.
The brothers of Setu’s husband decided to break up the inheritance and started living in different houses. The family didn’t support them. Setu sent her son to her home, her Maiti, in the care of her father and mother. She couldn’t feed him herself.
Everybody in the village went on with their everyday life, but in Setu’s home the door was always shut.
They were inside and could hardly get out of bed. Her husband would mumble from his bed that he would kill himself, but he couldn’t even get up to get water. Then came the sudden, horrible news — their son had passed away.
At this point it was getting late, so I asked Maiju if she could finish her story another day. I told her I would come to her house again very soon. On my way home I felt guilty. I could have stayed, but the truth is I couldn’t bear to hear her story any further. It saddened me very much.
It disheartens me to think of how the community chose to react to her difficulties. I understand the fear; nobody would come near her because they thought that might cause it to spread. People didn’t know any better then. But some of their beliefs and superstitions did come in the way of their humanity, and I think it made people look at a person and forget that they were a person.
But then something incredible happened.
One day her father came to visit from Nawathaana, her village, and said he would take Setu to the nearest city for treatment, and would save her even if he had to sell off all his land. He must have been very emotional at that point, and couldn’t perhaps bear to see their condition any longer.
He took both her and her husband to an AIDS treatment center, and after two months brought them back to his own home. She started getting better.
It was also a time when the government and other organizations had many programs around AIDS. Setu’s husband got a job at an NGO where he counsels other patients with AIDS.
Now, I go to her home regularly to check on her health and provide counseling. It makes me proud to be a health worker when I think of this story. It makes me feel like we are fighting a good fight.
Editor’s Note: Achham, Nepal was the site of an AIDS crises in the 2000's and was one of the reasons why Possible started its operations here. Currently, the crises has subsided and rates for new infections, as well as death by HIV, have come down by large margins. Most importantly, access to treatment has increased 146% from just six years ago.
