This is the story of Vani (name changed), a 43 years old mother of two bubbly kids—Kajal and Tarun (names changed) aged 13 years and 10 years respectively. She is one of the lucky few who could eventually manage to access and successfully complete her treatment of MDR TB, outside the woefully inadequate government DOTS Plus programme. It is the story of the grit and determination of a mother who conquered all odds for the sake of her children. Her concern and love for them gave her strength to not only grapple with her infection of HIV/AIDS and drug resistant TB (MDR TB) but also to face singlehandedly the stigma and discrimination at the hands of her apathetic family and society.
Shobha Shukla - CNS
(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 authored a book on childhood TB (2012), 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)
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Vani’s happy domesticated life got a jolt ten years ago in 2002, when her husband died of AIDS. He had been suffering from the disease since 2000, but could not be diagnosed by any of the several clinics they went to in Mumbai. In desperation the family went to their home town in Gujarat in 2002 where his condition deteriorated rapidly and when a few days later he was admitted to a hospital he was diagnosed with AIDS. He died a few days later. On his death the doctor asked Vani to get herself and her two children tested. The test revealed that she too was HIV positive, but luckily her kids were negative.
Thus in 2002 Vani came to know of her HIV positive status. At that time HIV/AIDS was considered a very dreaded disease. Visibly shaken up, she returned to Mumbai in a state of shock and tension. Once in Mumbai she got all of them checked again in two or three places--all within a span of one month, just to make sure that her kids were negative. All the reports confirmed the earlier diagnosis that she was positive, but her children were negative.
Vani has three siblings—two sisters and one brother. Her in-laws had died before her marriage, and her husband’s two sisters cut off all relations after their brother’s death. With no support at her in laws’ place, she moved to her parents’ house in Mumbai which and was financially dependent on them for one-two years. Then she started working to earn a living. Although she was positive she was quite healthy then and was able to fend for herself and her children. In her words, ‘Once I tested positive that chapter was closed. For three, four years my condition was okay and so I did not pay much attention. I was happy that at least my kids were okay’.
But around 2005-2006 she became sick with fever, diarrhea and cough. She approached an NGO Udaan and they sent her to some other organization, which helped her with rations and medicines. They gave her pills to improve her CD4 count and also some vitamins, which kept her going for the next two years after which she again started suffering from fever, weakness, and weight loss. And this time it was very bad. Her CD4 count had become very low and she was also diagnosed with TB. So she took TB medication from a government community hospital regularly for two months and felt better. Then suddenly in 2008 she had an unbearably acute and severe pain in her legs and she could barely walk with the help of a stick. She was referred to MSF, where she was diagnosed with MDR TB of the bones and a very low CD4 count. So she was put on both DR TB medicine and HIV medicine.
This was perhaps the worst period of her life. There were problems galore. She shudders to remember those days-- ‘I still lose my sleep when I remember those days. I was almost on my death bed. For ten months I could hardly eat anything. I would throw up everything. I began to lose weight as my body could not digest any food and I would vomit after every two minutes. I had to eat the medicines under supervision only, and would start vomiting right after eating them. This made my condition worse. Moreover, as I could not walk, I would sit on a plastic sheet and drag it to move from one place to another in the house. Even the doctors were not very hopeful of my survival.’
On top of these severe side effects of the medicines, her own parents stopped supporting her. They were scared that they too would get the infection from her. It was actually her brother who instigated them to either leave the house and move to the village or send her away; threatening that if any of them got the disease he would not look after them. So they wanted her to leave the house and stay in some hospice or institution along with the kids. They would cover their mouths with masks, although there was no need of it as she had MDR TB of the bones and not pulmonary TB.
‘I thought that if this is their behavior when I am alive, how I could expect them to look after my children when I am not there. I knew I had to live for my kids as there would be nobody to take care of them if I was gone. So, I continued and managed to finish my 18 months’ treatment of MDR TB for the sake of my children because I wanted to live for my kids. Once my MDR treatment was over, I immediately started feeling better. My appetite returned and my weight started increasing. My thinking also became positive. I had got a new lease of life, and I was determined to live it fully. I could now live for my children and do some work.’
Vani has had to face not only a serious disease but also the apathetic attitude of society. She did not have any family support to deal with the crisis. Her own parents did not support her and deserted her in her time of need. Vani feels that if they really loved her they would not have listened to her brother but stayed with her and her kids. This negative family atmosphere put her under severe depression. But her neighbours gave her a lot of moral support. She has good friends in the neighbourhood who support her and take good care of her despite knowing that she is living with HIV/AIDS.
Her children too have had to face the brunt of her positive status. Her son used to go to school on a shared cycle rickshaw, but the parents of the other kids objected to this once they came to know about her HIV+ status. They thought that as she was infected, her son must also be having the infection which would pass on to their children. So now the son has to walk daily to his school. When the rickshaw man and the parents informed the school of her positive status, her kids faced some problems in school. But she pleaded with the Principal to keep them in school as they were HIV negative. She told her that she was on HIV medication and had been cured of DR TB. A proactive school administration resolved the issue amicably and after that there was no discrimination at school.
Vani is grateful to Medicins Sans Frontiere (MSF) for helping her in more than one way. Apart from giving her a new lease of life by providing quality treatment for curing DR TB, they also counseled her and her parents who were ready to kick her off. MSF made an arrangement with some hospice that in case she was turned out of the house she could go and live there. But Lorraine from MSF eventually succeeded in dissuading her parents from throwing the daughter out, even though they refused to stay with her and went to their village. But Veena could at least have a roof over her head.
She has come out of a horrid past and does not want to look back. She has since been successfully cured of DR TB although she has to remain life-long on ART. MSF has given her a sewing machine which has become her source of income. She does stitching and tailoring work. People of her colony support her and she gets work from her neighbourhood, thus managing to earn good money.
Now her life is back on track and revolves around the well being of her two kids, of whom she is very proud. Daily morning prayers in a nearby temple give her a lot of positive energy to continue through the day. She believes in the power of meditation which she practices regularly with her children. Then she meditates along with her children, reciting mantras with positive thoughts in her mind, as she thinks that the thoughts we have in our mind while meditating turn into reality. She is happy that now she is healthy and can take good care of her kids, and wants to see them happily settled in life with a proper education and a good job. She has taught her children not to ever feel disheartened in life but to face all situations bravely and fight it out in the same way as she has fought own her battle.
(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 authored a book on childhood TB (2012), 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)
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