Name: Parameswari
Age: 25 Years
HIV Status: Positive
Uday is a young and well-known electrician in his area. He had a lot of friends and is a much sought-after person. He married Parameswari, who was the only daughter and had a brother.The marriage was performed with much pomp and show.
Soon they were blessed with a son. At this point, while Parameswari was staying with her parents, Uday developed contacts with other women and developed STDs. He ignored the symptoms. When his friends advised him to go to a doctor, he resorted to herbal medicine given by a quack, because of the shame attached to disclosing his activities to the doctor. His wife returned to him, and they continued to live together once again. They had a second son.But even at this time, Uday continued to have symptoms of STD. The symptoms would disappear and appear intermittently and one of his peers advised him once again to consult an allopathic doctor.
The allopathic doctor told him to go for a blood test. Not knowing the purpose of the test,Uday did as advised and brought back the result to the doctor. He was informed that he had AIDS and would live only for a short while. The doctor also told him to get his wife and children tested. Both Parameswari and her younger son tested positive. Her elder son tested negative. The Doctor asked them to bring Rs. 20,000/- for medicines which Uday thought would cure him. He somehow managed to raise the money and gave it to the Doctor who gave him some medicines. After a month, when things did not improve, the Doctor asked for another installment of money for different medicines. Uday now demanded dowry money from his in-laws to give it to the Doctor. The harassment continued till it was decided that a house would be sold and its proceeds diverted for medicines.
Uday also visited WINS’ office in a full-blown AIDS situation. After counseling he expressed his will to continue to live. But the disease had grown to an advanced stage by then. Some of the peers of WINS admitted Uday at the Government Hospital. He stayed there for three days before he succumbed to the disease. His death saved the house from being sold.
Till his death neither Uday nor the doctors informed Parameswari that he was HIV positive,on the grounds that she was an illiterate. She continued to serve him even as he was bed-ridden. His mother also was living with them. After the death of Uday, the entire colony came to know of the cause of his death. Only he had a TV in the entire colony, and everyday someone would sit and watch TV and also eat in their house. After his death, the colony boycotted the family and stopped coming to their house.Now Parameswari had the burden of earning for a livelihood. She tried to get jobs as a maidservant in some places, but in vain. While she was trying her best for employment, WINS suggested certain options for eking a livelihood. She did not have physical strength and she was also emotionally drained out after having nursed her husband and spent traumatic moments with him during his last days. She did not wish to work in the WINS clinic, as she had no strength to meet more sick people. Frequent suggestions about nutrition and food intake helped her recoup her strength. Her brother helped her by giving her some grain every month so that the family could somehow subsist. She also rents a room in her house for which she gets Rs. 100/- a month.
At this juncture her second son who had tested positive, started falling sick. He was not gaining weight and he had an enlarged stomach. He even had problems digesting the food he consumed. Unable to help the child, she started coming to the WINS clinic and brought her son along. Her son Rajasekar was provided with some crayons and paper at the clinic, and the child started playing there. He became slightly more cheerful. The child was brought by her mother to every forum meeting for PLHA on the 24 th of each month. All the PLHAs liked the child and started playing with him, pampering him and becoming close to him. Rajasekar also said he liked coming to the forum meeting as he could meet so many people, and he enjoyed that a lot.
Since the child started getting medical complications, he was referred to a pediatrician. The Doctor in the pediatric ward admitted the child in the hospital and a surgeon was called for.The surgeon was not communicating to the parents and was insisting that they visit him in his clinic later in the evening. He did not know that the child was HIV+. Parameswari knew that the Doctor was asking for money to perform the surgery, and so she asked WINS staff toaccompany her. When WINS staff visited the doctor, and during the discussions Parameswari disclosed to the doctor that she had lost her husband to AIDS. Immediately the doctor insisted that she and the child also should be tested, and he blatantly asked them not to bring the child to the clinic anymore. He discharged them without giving anything in writing.
WINS had to intervene to find reasons why the doctor was not rendering service nor explaining any reasons for asking the patients to get discharged. When asked he said that the Govt. doctors did not have exposure to treating HIV afflicted persons as very few came.Already very few children get admitted in Govt. hospital for surgery, and he has never come across a HIV+ child in such a situation. He feared that if the child should die in the hospital and others came to know of it, they would stop coming to the Govt. hospital. He also said that even if he agreed for the surgery, his team members would refuse, and he cannot perform the job alone. He also said the child may die due to lack of immunity, especially in the post-operation period, but it would misconstrued as the inefficiency / negligence of the doctors. So he said the child should now be referred to an AIDS specialist who can put him on anti Retroviral Therapy (ART). WINS staff said at this point that the patient’s family can ill-afford even a doctor’s fee leave alone money for ART. Getting an employment for Rs. 300/- per month itself was a hard task for Parameswari. The doctor also suggested that NGOs can give free ART, which is still far-fetched in the services rendered by NGOs. The heated arguments between the doctor and WINS’ staff made Parameswari feel the stigma and discrimination related to the disease for the first time, and she withdrew further into herself. Finally WINS requested the doctor to make out a letter referring the case to a super-specialty hospital. A case could have been fought against the doctor, but for the lack of documentary evidence, and the condition of the child was critical and needed immediate attention.
WINS then encouraged Parameswari and took her along with the child to CMC, Vellore where WINS had linkage with the doctors. Accordingly the doctor at CMC Vellore was approached and was very kind while examining the child. After a thorough examination, he advised a course of treatment. The child was admitted and kept under observation and direct care of a specialist. The child responded well to the treatment. The doctor announced that there was no need for any surgery, and the problem can be taken care of through medicines.The doctor also confirmed his availability for the child at any time, and in case of any emergency.
Currently the child has recovered and continues to play. But the lessons learnt are very many.How HIV as a disease can cause havoc in a familial situation both physical and emotional, the insensitivity of the doctors and people who wish to take advantage of the situation, the stigma and discrimination that makes neighbors and friends boycott them and the pressure to go for a test with neither consent nor counseling. In the first place the communication between husband and wife had completely broken as the husband could have avoided infecting his wife had he spoken to her about his status. Only after his death did she come to know of the cause as well as the fact that he was infected even before their marriage. The consequences were devastating for her as she had neither physical nor emotional support. She was so dependent on her husband that she could not imagine an independent existence.
WINS’ support to her and her child made her realize that she had a friend and a guide to take her and her child through the rest of their lives. Her elder son, who had tested negative also get educational support from WINS. Her brother takes care of the elder child, and she has to stay and look after the younger child. She now misses her elder child, as she is unable to bewith him. The younger child also wants to see the brother, but the others in the family do not allow them to mix. But now, Parameswari has learnt to live without the support of her neighbors. She has learnt to live in a positive manner, and is willing to take care of herself and her infected child. She is a living example to others on home-based care for sero-positive persons. Hope is reinforced in her life and is an example to emulate for the rest of the People Living with HIV/AIDS (PLHA).