The Monthly Meeting
My very first weekend with PAASAM was an especially significant one considering that it coincided with the organization’s monthly meeting, essentially a three day retreat for HIV infected individuals and their families set at the idyllic Paasa Bhoomi residential care home. Located on the outskirts of Dindigul town, Paasa Bhoomi, affectionately nicknamed the “Farmhouse,” is a charming location featuring gooseberry orchards, a rustic cattle shed, and a veritable mini zoo complete with ducks, turkeys, dogs and rabbits. The actual two-story building is meant to eventually house a 20 bed residential care center for HIV infected individuals, but until this care center is up and running, Paasa Bhoomi functions as a monthly retreat center and summer children’s camp for PAASAM clients.
Day 1 of the retreat actually begins at the PAASAM office in downtown Dindigul. Guests from various villages surrounding Dindigul congregate at the office, located conveniently just behind the Dindigul Government Hospital where all HIV infected individuals in the Dindigul region must come for testing and treatment. They spend the greater part of the day availing of the health services provided at the office (all free of cost), including filling prescriptions they received from the hospital, collecting nutrition powder, a powerful concoction of various pulses and grains meant to supplement an inadequate diet, and receiving glucose IV lines and vitamin injections to boost stamina. Although the office is open six days a week and provides these services every day with the dedicated effort of the PAASAM staff and two amazing staff nurses, the day before the weekend retreat was the first time I have ever seen the office so crowded.
That Friday afternoon at the office was the first time when I realized the full extent of the horror of living with HIV/AIDS. Sure, I had spent the last 3 days with 7 women who were all HIV positive, but the PAASAM staff are the exception to the rule in comparison with the clients who utilize PAASAM’s services. Relatively healthy, I would never have been able to guess that any of the PAASAM staff was HIV positive, had I not been told, and apart from the occasional migraine, nausea, or general weakness, they all seemed generally able to lead an active lifestyle. This was definitely not the case for the clients who came to the office. Mere skin and bones, many of them were so weak from diarrhea that their eyes seemed to bug out from the very sockets of their gaunt faces. A few of them were fighting tuberculosis, a very common opportunistic infection for people living with HIV/AIDS, especially in India, the country with the world’s highest TB prevalence. Others were battling bacterial infections that caused unsightly and painful sores on their hands and feet, which made walking and eating extremely difficult.
Once all of the clients finished their errands at the PAASAM office, vehicles were waiting in the wings to transport them to Paasa Bhoomi and the main festivities of the weekend. Essentially, each PAASAM monthly meeting is an opportunity for psychological healing. The whole point of the weekend is to provide the people living with HIV/AIDS with a chance to escape the harsh daily realities of living with the infection, including but not limited to societal rejection, poverty, and the devastating physical effects of the disease. The monthly meeting is also an attempt to provide HIV infected individuals with a platform to find support from others who are undergoing the same challenges they themselves face.
Saturday morning, day 2 of the monthly meeting, started out with loud music, raucous laughter, and lots of popped balloons as 100+ HIV positive individuals inaugurated the events of the June monthly meeting with a balloon popping contest. An ice-breaker conceived by the meeting’s resource persons, a husband and wife tag team who are Siddha medicine practitioners, a branch of ayurvedic medicine that focuses on curing illnesses with natural herbs and other plant materials, the balloon popping contest soon transitioned into a fascinating thought exercise: does your life resemble that of a broken or a whole balloon?
In the small group discussion that I sat in on, the responses that I heard to this question ended up being a pleasant surprise. Although many of the group members recounted depressing stories of unexpectedly losing spouses to the HIV infection they didn’t even know they were carrying, encountering economic hardship due to the loss of the primary bread-winners of their families, and of the need to hide their HIV positive status from their employers, neighbors, and even their own family members, the overwhelming response that everyone came up with that day was that they felt like a whole balloon, thanks to the confidence which PAASAM had instilled in them to live their lives to their fullest extent. Everyone that I saw at that meeting seemed to possess this intense conviction not to indulge in self-pity. Many people expressed the sentiment that although it was unfortunate that they had contracted the virus, their only concern now was to live for their HIV negative children and to see them become successful, happy and included members of society. Similarly, even though many of the clients had experienced unspeakable hardships themselves, they all seemed to feel that the suffering of their neighbor was all the more heart-breaking. In this vein, they all possessed the selflessness to console their neighbor, while putting their own hardships into the background. Perhaps most shockingly considering the intense suffering they experience on a daily basis, each and everyone of the people I met that day expressed the desire to approach their lives with a sense of joy, gratitude, and the resolve to make the most out of the time they had left, a conviction most evident in the vocal, collective booing that accompanied one woman who got up to share her desire to end her life after learning of her HIV infection.
Monday, August 30, 2010
Sunday, August 29, 2010
Once in a Lifetime: Part 2
The Office
A rented second story space of a residential home, located in the heart of Dindigul town, houses the PAASAM Care Center office. An unassuming location containing a tiny front office which barely fits the two desks from which the director and his immediate assistants conduct the daily business of running the office, a larger hall whose focal point is the two metal beds which patients occupy on a daily basis as they receive the free glucose drips provided by the organization, and the walls lined with shelves and shelves of iron and vitamin tonics, meticulously labeled bottles of pills for every ache and ailment imaginable, and hefty bags of rice and nutrition powder are the only evidence of the amazing work being done every day in what would otherwise appear to be just another quiet, family neighborhood.
The office is where I first met seven of the most amazing women I have ever had the privilege of knowing: the staff of PAASAM Care Center. All HIV positive widows ranging in age from their early 20s to mid 30s, the PAASAM staff welcomed me like a younger sister from the very first moment I met them. Extremely affectionate and generous in nature, my fondest memories of them to date are of the bonding we would do every afternoon over lunch, a raucous occasion conducted on any available floor space in the cramped office. Food is an integral component of expressing love in the Indian culture, a custom I am well-versed in from experiences with my own family, but the family I gained at PAASAM took this symbolism to a whole new level for me. At every meal that I shared with these generous women, everyone would always set aside a portion of their own meager lunchboxes to be shared with the group, even before they had even taken a whiff of, let alone a bite of, their own food. Whatever little there was to go around was always offered to the other first and in their own resonating words “Food is the one thing we wouldn’t deny even our greatest enemy.”
If Fr. Arul Samy is the creative head of PAASAM, the staff is the backbone which ensures the organization functions like clock-work. The staff’s first and foremost duty is to be a leader by example for the HIV/AIDS community that PAASAM services. The staff at PAASAM are the first fruits of the organization’s goal to empower people living with HIV/AIDS to accept their health condition, come out with confidence and express that they are HIV positive, and to develop the conviction that HIV/AIDS is not a death sentence, but rather, that a high quality of life is still possible after an HIV positive diagnosis. Living in a male-dominated societal order, where a woman’s life after her husband’s demise is expected to end in seclusion in the home in a state of perpetual mourning, symbolized by the stipulations that she wear only white saris and forgo the use of jewelry, flowers in her hair, and even the bindi, the quintessential birth-right of every Indian woman, the women of PAASAM have summoned up the courage to make the statement that their lives did not end with the passing of their husbands or with the discovery that their husbands had given them this debilitating disease. Risking societal accusations of being loose women who are dishonoring the memories of their dead husbands, the PAASAM staff have found the courage to leave the home and enter the workforce in order to support their families. They have refused to let the joint sorrows of the loss of their life partners and their infection with the HIV virus dampen their spirits or their resolve to fight the disease. They take diligent care of their bodies, reporting without fail for their bi-annual CD4 count tests, which track the progression of the infection, apportioning a substantial portion of their meager earnings towards purchasing and preparing nutritious foods to preserve their health, and taking their prescribed medications religiously. Most commendably, however, the women at PAASAM have refused to surrender themselves to the centuries old stigma of widowhood levied upon them by their Indian culture. Defiantly dressed in colorful saris, bindis on their foreheads and flowers in their hair, these dauntless women refused to be marginalized by a society which often hurls violent abuse at revolutionaries like them who protest the injustices levied against them.
The women who work at PAASAM are amazing in still other ways. Ranging in educational level from eighth grade dropouts to the sole woman who attended college and even went on to complete a masters degree in economics, the PAASAM women have learned to become self-sufficient and are teaching these skills to the clients that frequent the organization. Each of the staff heads up a Self-Help Group where members work together to accumulate savings which are then returned to the members themselves as internal revolving loans. Over the course of three years, 7 Self-Help Groups with a total membership of 83 HIV positive women have managed to save Rs. 81,768 ($1, 744) and open bank accounts at South Indian Bank. With this development, the bank manager of South Indian Bank has promised to give loans to the HIV positive women, a major godsend to a population dependent on meager day labor wages to make ends meet. In a similar vein, the Self-Help Groups have also formed a federation of 11 office-bearing members culled from each of the individual Self-Help Groups. The duties of the federation are to petition government officials for various assistances to HIV infected and affected individuals, including old age and widow pensions, scholarships, and income generation vehicles such as free sewing machines. With no background in accounting and a minimal education, the staff at PAASAM and the HIV positive women whom they mentor manage to maintain the accounts of their respective Self-Help Groups, draft formal applications for loans, and negotiate services from bank and government officials.
A rented second story space of a residential home, located in the heart of Dindigul town, houses the PAASAM Care Center office. An unassuming location containing a tiny front office which barely fits the two desks from which the director and his immediate assistants conduct the daily business of running the office, a larger hall whose focal point is the two metal beds which patients occupy on a daily basis as they receive the free glucose drips provided by the organization, and the walls lined with shelves and shelves of iron and vitamin tonics, meticulously labeled bottles of pills for every ache and ailment imaginable, and hefty bags of rice and nutrition powder are the only evidence of the amazing work being done every day in what would otherwise appear to be just another quiet, family neighborhood.
The office is where I first met seven of the most amazing women I have ever had the privilege of knowing: the staff of PAASAM Care Center. All HIV positive widows ranging in age from their early 20s to mid 30s, the PAASAM staff welcomed me like a younger sister from the very first moment I met them. Extremely affectionate and generous in nature, my fondest memories of them to date are of the bonding we would do every afternoon over lunch, a raucous occasion conducted on any available floor space in the cramped office. Food is an integral component of expressing love in the Indian culture, a custom I am well-versed in from experiences with my own family, but the family I gained at PAASAM took this symbolism to a whole new level for me. At every meal that I shared with these generous women, everyone would always set aside a portion of their own meager lunchboxes to be shared with the group, even before they had even taken a whiff of, let alone a bite of, their own food. Whatever little there was to go around was always offered to the other first and in their own resonating words “Food is the one thing we wouldn’t deny even our greatest enemy.”
If Fr. Arul Samy is the creative head of PAASAM, the staff is the backbone which ensures the organization functions like clock-work. The staff’s first and foremost duty is to be a leader by example for the HIV/AIDS community that PAASAM services. The staff at PAASAM are the first fruits of the organization’s goal to empower people living with HIV/AIDS to accept their health condition, come out with confidence and express that they are HIV positive, and to develop the conviction that HIV/AIDS is not a death sentence, but rather, that a high quality of life is still possible after an HIV positive diagnosis. Living in a male-dominated societal order, where a woman’s life after her husband’s demise is expected to end in seclusion in the home in a state of perpetual mourning, symbolized by the stipulations that she wear only white saris and forgo the use of jewelry, flowers in her hair, and even the bindi, the quintessential birth-right of every Indian woman, the women of PAASAM have summoned up the courage to make the statement that their lives did not end with the passing of their husbands or with the discovery that their husbands had given them this debilitating disease. Risking societal accusations of being loose women who are dishonoring the memories of their dead husbands, the PAASAM staff have found the courage to leave the home and enter the workforce in order to support their families. They have refused to let the joint sorrows of the loss of their life partners and their infection with the HIV virus dampen their spirits or their resolve to fight the disease. They take diligent care of their bodies, reporting without fail for their bi-annual CD4 count tests, which track the progression of the infection, apportioning a substantial portion of their meager earnings towards purchasing and preparing nutritious foods to preserve their health, and taking their prescribed medications religiously. Most commendably, however, the women at PAASAM have refused to surrender themselves to the centuries old stigma of widowhood levied upon them by their Indian culture. Defiantly dressed in colorful saris, bindis on their foreheads and flowers in their hair, these dauntless women refused to be marginalized by a society which often hurls violent abuse at revolutionaries like them who protest the injustices levied against them.
The women who work at PAASAM are amazing in still other ways. Ranging in educational level from eighth grade dropouts to the sole woman who attended college and even went on to complete a masters degree in economics, the PAASAM women have learned to become self-sufficient and are teaching these skills to the clients that frequent the organization. Each of the staff heads up a Self-Help Group where members work together to accumulate savings which are then returned to the members themselves as internal revolving loans. Over the course of three years, 7 Self-Help Groups with a total membership of 83 HIV positive women have managed to save Rs. 81,768 ($1, 744) and open bank accounts at South Indian Bank. With this development, the bank manager of South Indian Bank has promised to give loans to the HIV positive women, a major godsend to a population dependent on meager day labor wages to make ends meet. In a similar vein, the Self-Help Groups have also formed a federation of 11 office-bearing members culled from each of the individual Self-Help Groups. The duties of the federation are to petition government officials for various assistances to HIV infected and affected individuals, including old age and widow pensions, scholarships, and income generation vehicles such as free sewing machines. With no background in accounting and a minimal education, the staff at PAASAM and the HIV positive women whom they mentor manage to maintain the accounts of their respective Self-Help Groups, draft formal applications for loans, and negotiate services from bank and government officials.
Once in a Lifetime: Part 1
This summer I had the amazing opportunity to volunteer at PAASAM (Plan of Action for AIDS-victims and Social Action Movement), an NGO working to service the needs of HIV/AIDS patients in Dindigul, Tamil Nadu, South India. What I observed and experienced during my time with the organization was nothing short of a life-changing experience. This series is an attempt to document these experiences and to spread awareness of the plight of people living with HIV/AIDS in South India.
PAASAM, translated from the original Tamil, means motherly love and affection, an apt description of PAASAM’s mission to provide HIV infected and affected persons with the love and care of a mother. Under the guidance of its director, Fr. Arul Samy, O.F.M, PAASAM provides its 459 members with various support services including educational assistance, counseling services, free medications, and nutritional support.
PAASAM, translated from the original Tamil, means motherly love and affection, an apt description of PAASAM’s mission to provide HIV infected and affected persons with the love and care of a mother. Under the guidance of its director, Fr. Arul Samy, O.F.M, PAASAM provides its 459 members with various support services including educational assistance, counseling services, free medications, and nutritional support.
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