Celebrating life in a positive way

As we once again commemorated World AIDS Day on 1st December 2011, it is time to share the joys and sorrows of people living with HIV (PLHIV) with a positive attitude. It is also high time that instead of targeting the affected population, we sensitize the so called unaffected populations (those who are not living with the disease and do not belong to high risk groups), so that they become more aware of this once dreaded disease and stop treating those living with it as untouchables. Of course a lot of water has flown since the first case of HIV was detected in India in 1986, and the tag of ‘killer’ attached to the disease has been replaced by ‘chronic’. We now talk of people living with HIV and not people suffering from HIV.

In the darkness of ignorance that still engulfs the horizon of HIV/AIDS, there are some shining stars which rekindle our belief in the indomitable human spirit. Asha Ramaiah is one such woman, who was diagnosed of her positive status in 1995. I first met her in August 2011, and was immediately attracted by her pearly white smile, little realizing the ocean of tears it must have waded before settling on her face. Hers is a story that is an inspiration, not just for PLHIV, but more for those who are not positive (in their attitude, and/or in their HIV status).

In her own words, as told to CNS:
"I was an introvert as a child, and never dared to protest against anybody or anything that I did not want to do.  I obeyed my parents without asking any questions, who did not even take my consent when they married me off as soon as I turned 18. And I am sure even if they would have asked me I would not have voiced my opinion. I realized the need to stand up and voice my opinion much later. Within six months of my marriage, my husband took very ill and was diagnosed with AIDS. When the doctors wanted me to undergo a blood test, I did not understand why. Even when they told me that I was HIV positive, I hardly understood what it really meant. My father-in-law started beating me and blaming me for his son’s illness. Soon after, my husband expired and my parents brought me back. But they too started isolating me as they were afraid that my two younger sisters would not get married if someone knew about my HIV status. At 19, I was too young to understand the challenges that awaited me. I enrolled myself for social work training and then came to know about how HIV infection affects the immune system. I was scared for the first time. But, after the initial shock, I stood up to face life once again, thanks to the strength of my womanhood.  In 1998 my doctor directed me to Samraksha, an NGO doing pioneering work in the HIV and AIDS sector.
While working with Samraksha I was exposed to a world which I had never ever imagined. Samraksha facilitated a capacity building process for me by giving an exposure through various conferences and training programmes on HIV/ AIDS, and gave me the opportunity to complete my diploma in Counselling from Christian Counselling Centre, Vellore. I could now organize support group meetings and worked with other PLHIVs as a counsellor. I not only listened to their anxieties and concerns, but also explored with them how to progress towards living positively in a satisfactory manner. I also met Elango and entered into matrimony once again in the year 2000 - this time with my own choice and with my eyes wide open to the reality that he was also a person living with HIV. I also became one of the founder members of KNP+, a network of people living with HIV in Karnataka. These two events changed my life, both at the personal and professional level. There was no looking back now. I was extremely happy when my son Yatish Darshan was born in November 2001, but the happiest day came 18 months later when the doctors declared him HIV negative. 
Today, when I look back, I feel, I have come a long way. I am here because of my own strong will to survive and overcome, and also because of the support and encouragement of my organization, my parents, friends and other PLHIVs. Without their support, the road was dark and thorny. And it is this great sense of togetherness and hope which I enjoy with my husband and my son by my side. This hope is my way of celebrating my life. As person living with HIV for the last 16 years, I am not taken antiretroviral (ART) drugs, but simply following the doctor’s advice and taking proper treatment for opportunistic infections. A word of advice for all women—A good education and financial stability are very important along with guarding our reproductive health."

This is what our former President Dr APJ Abdul Kalam had to say about Asha in 2006: "Friends, the message we get from the experience of Smt Asha is that as human beings we may get into a problem. But we should not get defeated. We should find out ways of converting this very problem to our advantage and succeed. The courage we see how the lady defeated the disease and most importantly she withstood the onslaught of alienation from her parents, husband and the society. This I call as indomitable spirit of a HIV affected person. Many Asha Ramaiahs are needed to make the people suffering from HIV AIDS, leprosy, polio, cancer and TB feel comfortable and lead a normal productive life in our society."

Asha is not alone in her journey. There are others also who have faced similar predicaments. Manoj, of Gorakhpur, and a member of UP Network of people living with HIV (UPNP+), too faced a lot of stigma and ostracism from his family members and even from healthcare providers when he was first diagnosed with the disease. His elder brother’s family treated him as a social outcast. But a simple yet meaningful intervention of his family doctor changed everything. When Manoj bared his heart to him, the doctor made it a point to visit his house daily after lunch and lie down on Manoj’s bed, and eat the eatables taken from his hands. In this way he convinced the family that AIDS did not spread through touch or eating out of the same plate. The family took Manoj back in their fold, who has since married a widow living with HIV. He feels that apart from proper medical treatment, it is the love and support of the near ones which acts as an elixir of life to PLHIV. He is very grateful to his mentor Mr Naresh Yadav, chair of International Treatment Preparedness Coalition (ITPC) India who, according to him, is doing yeoman’s service by reaching out to the unreached PLHIV and encouraging them to lead a normal life.

The coming days may be hard for the PLHIV community with financial grants drying up, threatening the free availability of anti retroviral drugs. While donors need to relook into this matter and production of generic drugs needs to be safeguarded in all free trade agreements, the least we can do is to lend a helping hand here and a soothing word there to bring about social inclusiveness and mitigate the woes of those living with HIV/AIDS. God forbid, it could be anyone of us tomorrow who might contract it through no fault of theirs. Let us do unto others as we would want them to do to us.

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 co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" published in November 2011 and a report on Hepatitis C and HIV co-infection and treatment access issues in December 2011. Email: shobha@citizen-news.org, website: http://www.citizen-news.org)

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