Wednesday, December 01, 2004

Dying a death each day

The story of Sudha Jain, a 30 year old lady in Jaipur, who lives with HIV/AIDS:

AIDS has not cracked my spirit. Even my health would seem perfect to you at first glance. But the worst that it has done to me is that it has cleaved and scattered my family. After my husband succumbed to AIDS, I had no money or income to support my three sons and had to send them away.

Eleven-year-old Bhavesh, also HIV positive and the only one of my sons to be so, is now a resident at a care home in New Delhi managed by the Naz Foundation. Parvesh, aged seven, is with my in-laws at a village near Bagru. Only Rahul, who is five, stays with me. I keep him with me so that I have someone by my side to give me water and medicines when I am ill. Someone to soothe my hurting legs for I often get fever and my legs start aching.

As the world observes World Aids Day on Wednesday, I am hoping to have my sons together. I want the government to create a care home where children like mine can be hosted. I want my family to be together more than anything else. The children often ask me why did I bear them if we had to live like this. I have no answer for that.

As someone living with HIV since 2000, I have grown used to the discrimination. People might not be overt but behind my back they act as if I were to die today. Yet, I have brushed all that aside and am focused on my voluntary work as a peer counsellor at the SMS Hospital and my membership of the Rajasthan Network for People Living with HIV/AIDS (RNP+), where I get a honorarium of Rs 1,000 each month.

I hope to do something so that other ladies do not find themselves in such a situation. There are fifteen women with us at RNP+ who have been thrown put of their homes for carrying the virus. If cancer and tuberculosis patients can live together, why cannot those infected with HIV?

The big funding organisations spend so much money but it has not affected us much. We just get Rs 20,000 each for medicines and that’s the end of financial support. How can we buy the expensive medicines that cost as much as Rs 3,000 for each month. We are still struggling to get a BPL-like card that would give us free medicines and a pass for cheaper travel, which were promised by the government earlier. Will the authorities and agencies hear me today?

(as told to Debarshi Dasgupta)


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