By her own admission, Chandrika earns her living by begging in the basti (area) around the place of her residence. (In India, it is still customary for the transgender populations to sing and dance in households, where a wedding has taken place or a child has been born recently, for gifts and money in return. This, along with begging, is their livelihood).
She lives with a few other community members, comprising her grandmother and some of her disciples (juniors perhaps). They live close to each other in a group, but she insists that, “I live alone in my house. My house is separate. My kitchen and my bedroom are all separate. I do not live with others.”
In 2004 she had very severe cough, accompanied by chest pain. “I used to cough a lot with a lot of phlegm. I thought it was because of eating jujube berries (‘ber’ in Hindi language). My guru, my disciples and everyone else thought that the fruit caused chills and was responsible for my cough. I was very fond of this fruit but then I stopped eating it. But my cough did not improve. So I went to a doctor who told me that I had TB. He said that the cough was not because of the berries, but because of my TB.”
Chandrika was nonplussed. She did not have the faintest idea about TB. “I did not understand what he meant by TB? What was it? So I just stood there quietly.” Nonetheless she completed a 9 months free TB treatment from Sewree Hospital in 2004. (This is as per her records, although in her interview she said that it was a 6 months course). Yet she felt that her body did not respond to the treatment. “I would just feel very sleepy all the time. No matter how many medicines I ate, it made no difference to my condition. I would start panting while climbing stairs. I would get breathless.”
Then, in 2006 she started feeling unwell again, with giddiness and loss of appetite. At the insistence of her grandmother and her guru (teacher) she went to see a doctor who diagnosed her with HIV/AIDS. She was put on Anti Retroviral Therapy (ART) at KEM ART Centre in 2007.
But after sometime her cough returned and she started feeling very weak. She lost weight and did not feel like eating and felt like vomiting. So she went again to the hospital where a blood test was done and in 2009 she was again put on ATT for 6 months at the same hospital at Sewree. She took all the precautions advised by the doctor. They told her to eat her pills and to avoid cold things. So she stopped drinking cold water and/or any fruit or food kept in the fridge. She thought that this would control her disease, but wondered why, despite taking all precautions, her cough would not go.
Chandrika could not understand why she had to take the second course even after eating ‘such good medicines’ which did not prove to be effective. When she asked the doctor, he said that he was not sure if she had earlier eaten the medicines properly. He assured her that her cough would improve after 6-7 months. But this was not to be. Her condition did not improve and she felt very unwell. Then she went to KEM Hospital, where she had earlier been on ART. But they would only test and treat for HIV, and not for TB. From there she was referred to MSF in 2010. MSF suspected her of having DR-TB, did culture test which was positive. So she was started on DR-TB treatment.
Thus after being driven from pillar to post she could finally start on a two year long proper course of treatment for DR-TB only in 2010. In the beginning, when she started her medication of DR TB, she suffered from severe side effects. In her words, “I always felt like vomiting, there was no appetite. It was a real torture to eat 9 pills. I thought it is better to die rather than eat so many medicines. I had also to take injections every day.”
But it was the love and care of her grandmother which kept her going. She remembers that, “My grandmother would always persuade me to eat my medicines. She would say that to get well I must eat them. So after being forced to eat them, I would walk for 1-3 hours and the sleep for one hour. I would feel better after this one hour sleep.”
Chandrika has already completed the intensive phase of her treatment and is currently in its continuing phase. She is now determined to take the complete course of medicines and not leave in between. She is scared that, “If I leave them, I will die. What would be the use of taking medicines for so many years, if I leave now? If I do not complete the course, it (TB) would restart again. I would definitely continue and not leave it in between.”
She recalls the discrimination she faced in her community because of her disease. Her own people would look down upon her and shun her like an untouchable. They would all stay away from her. If she asked somebody to oil her hair, she was shooed away. She could not go and visit her village and other places. She stayed indoors and would not sit with others. She could not go out for work also.
But since she has come to MSF, her condition has improved. She feels that the pills which she gets here are so very different. There is no cough now and her appetite has returned. Above all, her community has taken her back in their fold. She is no longer despised by them. They have started talking to her nicely once again. They compliment her, ‘Now you look so beautiful, you are back to you normal self. Touch wood.’ She is very happy that now her acquaintances love her like before and she too has started taking an interest in her life. The earlier weak and despondent Chandrika is no more. There is hope and happiness in her life once again, and for this she is very grateful to all the staff of MSF.
Her message to all is that one should not neglect TB. According to her, “Some people neglect TB treatment, and don’t care for their lives. But I think it is better to live well by eating the medicines, and completing the course of treatment rather than die unnecessarily. If patients get the medicines which they need it would be very good. Then they will get cured. So, all those who are in need of it must get the treatment for TB.”
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)
Published in:
Citizen News Service(CNS), India/Thailand
Spyghananews, Accra, Ghana
Elites TV News, California, USA
