The Oral testimony tool uses the power of storytelling to bring neglected subjects to the fore and give a platform for voices and perspectives which are often rendered voiceless in the public sphere. These testimonies will also facilitate development of a training kit to aid prograame implementers to work towards inclusive HIV/AIDS policies.The book is currently available in Hindi.A translation into English is being worked on.
STORIES FROM NAGALAND
True grit in the face of AIDS lies in living life with dignity
Tharanam Mahongnao, 41
My name is Tharanam Mahongnao. I am 41 years old. I now live in Phungreitang in Ukhrul. I will begin my story by going back into my life, as far as my memory will take me. I belong to a family of five children. We are four sisters and a brother. I am the second daughter and was born in 1967 in Imphal. I hardly stayed with my family in my growing years. I studied in boarding schools and came back home only when I was done with standard eight.
I remember living a happy, carefree life. I was good with my studies and was very particular about not missing any classes. My friends, on the other hand, were constantly bunking classes. My life took a turn when I reached class nine in 1984. My class had just completed the semester and selection tests and we were set to enjoy Christmas. At this point, I befriended a boy. He was in class eleven, fair and good looking. Beyond this I did not know anything more. We began meeting each other often. My father got wind of our secret meetings and forbade me from meeting the boy. I disobeyed him and decided to spend the eve of Christmas and Christmas with my boyfriend. As my father was travelling, my mother gave me a stern talking to. She warned me that if I was determined to do this, then I should not come back home. Impetuous by nature and filled with a sense of adventure, I ran away with him that night. It changed my life forever.
My boyfriend and I had no idea what we were doing. We eloped on the spur of the moment. I did not know what love was and had no real insights on marriage or married life. I spent the first night away from home crying. My boyfriend did not know how to comfort me. I later learnt that my father broke down on hearing the news of my elopement. My father, I know had never cried openly before this. This news upset me beyond measure.
After a few days, my father confronted my boyfriend. He was harsh with him and even brandished a gun. He told him that he should let me study and only then should we decide our future. He knew how serious I was about my studies. But all though crisis, he never spoke with me. The estrangement hurt.
I stayed with my boyfriend for three months. My sister got married in the interim. When my matriculation exams began approaching, my parents were keen that I appear for them. My sister had already filled up the forms and persuaded me to take the exams. With all the upheavals in my life, I had no time to prepare for the exams. I was tense and would fall apart with constant weeping. I took the exams anyway. I was distracted and unhappy with my performance. When the results were out, I found I had got a high second division. Others expected me to get a first. But I was delighted. My happiness knew no bounds. Yet after that I was torn apart by sadness as I had no one to share my achievements with. I felt extremely lonely and cut off from the world.
My boyfriend and I decided to get married. I began having children and the responsibility of running a family weighed heavily on me. I lost my teenage years. Even before I finished my exams, I was invited to teach at school. Since 1975, this has been my main profession. I earned a salary of Rs. 350 when I began and I kept aside Rs. 200 for the micro credit group. I ran the house on a measly Rs. 150 but could not manage to pay the rent with this amount. I began to learn sewing and knitting – skills I did not possess before this – to supplement my income. I became so adept that within a week I could knit a man’s sweater that fetched me Rs. 100 per piece or a woman’s sweater that earned me Rs. 70.
I also began adding to my income through tuitions. I also became highly enterprising and began making ice cream daily after I put the children to bed. I would accompany my daughter to her school on a rickshaw and give the guard of the school my ice cream to sell. After school, my daughter would carry the empty ice cream box for me to refill. My sister’s husband who is a highly placed government official would marvel at my income. I charged Rs. 100 per student for tuitions. Then I earned from making 800 pieces of ice cream per day.
But all through my struggles, my husband let me down. He wasted all his time and did not earn. Despite coming from a large family and having eight siblings, he did not see the necessity of giving his children a decent life. The needs of our two sons and two daughters were not attended to by him. My eldest son died suddenly. I only learnt why much later. I was heartbroken when he died but I received no support from my husband.
Early in the marriage, I got to know that my husband abused drugs. He also drank a lot. I don’t recall having spent any happy times together. He was mostly under the influence of liquor or drugs. He was never in his senses. In all his lifetime, he never held a steady job. He depended on me completely. He began demanding money for drugs and when I would decline, he would physically abuse me. It led to quarrels and bitterness.
When I had to organise school picnics as a teacher, he would get irate and accuse me of infidelity. Seeing my distress, my father put him in charge of his saw mill. For the brief period that he worked, but he spent all his earnings on drink and drugs. In one moment of extravagance and misplaced generosity, he came home with a dinner set priced at Rs. 800. I have kept it as it is. What use is this when my children go hungry?
We even stayed apart for a while. This was because once my baby was grievously ill. But instead of attending to him, my husband demanded Rs. 50 for a pack of heroin. I refused to give it to him. I was carrying my baby on a back pack and working. He flew into a rage and threw a piece of metal, intending to hurt me. It missed my baby by a fraction. The incident left me rattled. I was scared for myself and my children. I fled to the village where I had left my other children. I swore I would never come back to him. Villagers told me that he went hysterical after my departure, forcibly entering people’s homes and destroying their possessions. Later when he quieted down I came back. I did this because my family and friends insisted I do.
My in laws were of no help. On the contrary, they blamed me for his dissolute ways, arguing that I had misled him. My husband died in 1999 after a brief illness. He died without any diagnosis. A doctor, who knew about his drug abuse history, did suggest that I get his blood tested. At that point I did not realise the significance of what he was saying. He obviously wanted him to be tested for the HIV virus.
I felt numb after his death. I did not feel grief. Just before he died, he abandoned us for a few months saying that he needed that time to be able to quit alcohol. He returned soon after and said that he had missed us all. In the few months that he lived thereafter, we shifted to a new home in another locality. I did all the work. When he saw how neatly the house was organised, he asked me who had done it. I told him it was all my effort. He wept inconsolably on hearing that.
Then my youngest son who was born in 1994 took ill in 2003. Seeing his failing health, I became very anxious. I consulted doctor after doctor. Finally one cousin suggested we go to RIMS. They took samples of his blood. It was after that that they broke the news that he had tested positive for HIV. We were advised to see Dr. Phimo. He prescribed a list of medicines. When my son started medication, inexplicably his health turned from ‘normal’ to ‘abnormal’. He had enormous side effects from the medicines.
It was at this point that we made a crucial connection. My husband and my elder son had died of AIDS. I now began worrying about myself as I began falling ill often. My sister urged me to go in for a similar blood test. I was aghast when my results too emerged positive. For one whole week, I was numb with agony and despair. I kept asking God why I and my child had to suffer like this. I was upset with my husband who gave me nothing but grief and disease. I had rage within me.
Then I began my course of medicines. My friends also suggested that I ingest local herbs and leaves called ‘kongreihan’ and ‘hangvathang’. My health improved considerably. My appetite became better and my CD4 count turned satisfactory. The emotional support my friends provided me also stepped up my confidence and morale.
I remember that at one time because of the medicines I broke into rashes. Ugly marks appeared on my skin and I had marks like bee stings all over. People began commenting. I felt ashamed and was afraid to face them. I went to Dr. Lokendro, a skin specialist in Imphal, hoping it was just a skin infection and that he could suggest some cure. Since the doctor knew me and my medical history, he wasted no time in referring me to Dr. Diamond. As soon as Dr Diamond examined me he concluded that I had taken the wrong ART composition.
My younger sister lent me enormous support. As an HIV counselor, she knew how to guide me in my darkest hour. She kept telling me to have faith and courage and told me I was not alone. The first time I started ART, the cost of the medicine was Rs. 1,600. Today, it costs Rs. 4000-5000. I have spent exorbitant amounts of money on my treatment. When I began the treatment, there were very few clinics with testing facilities. No government hospitals had such facilities then.
In 2004, I was also diagnosed to be infected with Hepatitis C. The injections cost me Rs. 1, 20,000. My family arranged the money. After few months, when I retested, the result was still positive. I was told that I have to spend another Rs. 2, 00,000. I felt ill equipped to gather such a large amount and suffered trauma. My CD4 count dropped drastically. On my parent’s persuasion, I did buy some medicines because after all I had to live for my children. From 2003 to 2006, I purchased the medicines on my own. In 2007, my son’s illness deteriorated from bad to worse. Within days, I too became ill again and we both lay bed-ridden. That’s when I started the second line of ART. Today, life continues to be a struggle.
I have faced a lot of social stigma. Many people are scared to come close to me. I wish to recollect one embarrassing episode. I had enrolled in Amway networking business. I was to go for a meeting along with a friend. When we arrived, the lady of the house stopped us. We assumed she did not want us to be part of the network. Later it emerged that she was upset with my condition. She feared that she would get infected. I do meet her on many occasions now and I am very pleasant with her. I do not hold grudges. I can sense she feels bad for callous behaviour.
I have now quit my teaching career in Imphal and come to Ukhrul. I run a tea shop and do lucrative business. I am far more satisfied with my life here. I am not bound by timetables and schedules. I have the freedom to work in a manner I chose to. I meet people freely and life my own life by my rules.
My life has been full of shortcomings and sadness. But I choose now not to look at it like that. Such a worldview would only lead to negativity, frustration and a sense of forlornness. I try not to think of myself as ill and dying. I am filled with compassion for my husband these days. He died without knowing what love is or having understood the true meaning of life. I now also know that that AIDS can be contracted by sharing needles and syringes and through unsafe sex. It is a new found knowledge. I wish there had been more awareness of it.
My children are the greatest source of happiness for me. From the very beginning they have been obedient, loving and very god fearing. Now, my eldest child has finished her pre-university. I have promised her that soon after this she can go in for further studies. But of late, after I started taking the second line of ART, my health is on a decline. It is becoming difficult to work and I can see her frustration building on account of this. My second daughter has passed her matriculation and the pressures are mounting. We have discovered that her status is also positive. She is very depressed as a result and talks of committing suicide.
I am divided on whether I should buy medicines for myself, spend it on my daughter’s education or my children’s failing health. I am compelled to spend Rs. 10,000 on medicines and food supplements every month. I am scared as dying and wonder what will happen to them after I am gone. I guess it is only natural. My father is desperately trying to see whether he can find a job in one of the government’s department for my daughter.
A few back, a friend asked me to enroll with an NGO to seek financial assistance. I am not keen to do this and will explore all other avenues before I approach an organisation. I was once asked by a woman in an NGO what I think about all the time. I said ‘money’. I know what it sounds like to others. But I know that I have to earn to keep afloat. It will also help me obtain my food supplement. Last week I visited friend who is affected like me. When I saw her, I was appalled at the poverty she lives in. I wish I could have bought her
4/5 intravenous drips and fruits but as I was strapped for cash, I could not.
As a person suffering from AIDS, I can tell you that I am not looking for sympathy. I need encouragement and support so that I develop the will to soldier on. Emotional support is a very valuable and vital lifeline for people like me. An AIDS patient feels crushed and helpless. An emotional decline leads to further physical debilities and the falling of the CD4 count. It helps when someone smiles, lends a helping hand and offers hope. It then does not feel like the end of the day.
Also, all victims of AIDS need money. The only external help I have received is when my sister managed to secure Rs. 15,000 for me under a government scheme. On three occasions, my sister had bought my ART second line medicines plus food supplements worth Rs. 30,000. But mostly I have been supporting myself. When I need money, I take credit or borrow from people. Whenever I approach them, they don’t disappoint or hesitate to give it to me because I always make sure that they are paid back on the appointed date.
If I were not infected, I suspect I would be leading life on the fast lane. Maybe this is a blessing! My sister’s husband often tells me that had I not been infected or run away from home, I would have been very successful in life and he would be deferring to me and calling me ‘ma’am’. I was a hot tempered girl in my earlier avatar and maybe this is nemesis. I have chosen to look at my situation like this.
I have done many things I am not proud of. What I am proud of is the fact that I have never asked my parents for help. A year before my husband died, they shifted close to where I lived. They learnt of my circumstances only then. I did not tell them because in ways I felt my suffering has been the result of what I did to them. My husband and my eldest child have died of AIDS. My two other children may suffer the same fate. It is a cross I have to bear.
Some of my friends say that all this bottling up of feelings and emotions has done me no good. But what is the use of bemoaning my fate. My father feels sad looking at me. But I do not like that. It tears my heart to see him grieve for me. No matter what people say I am proud of myself. I think I have conducted myself well and handled my life with determination and steadfast courage. I have given my children as much as I can and afforded them a secure life.
We have a harmonious home and life and I make sure it remains like that
My family belongs to the Tangkhul community. We lived in the village near Ukhrul. My parents have six children and I am the fourth of the six children. My siblings and I had a happy childhood and attended the local school. All of us were mischievous and played pranks on each other constantly. We all enjoyed going to school and mixed freely with the boys. When I got to the pre university level, I shifted to Ukhrul. I studied in the college there. My brother used to teach there and I lived with him. But I must confess that I was a disappointment to him. I was not focused on studies. I did not do particularly well in exams. I got involved with my childhood friend romantically and we decided to elope in 1999. My brother who was so keen that I complete graduation was hugely aggrieved.
I have known my husband for long. We grew up together. In fact he is a second cousin. He was always rebellious and a little different. He kept his hair long, played the guitar and aspired to be a rock star. He also sang in church and I often accompanied him in song.
There was furor in the village when we got married. The elders decreed that cousins should not marry and this was not acceptable. My family was disapproving and very upset. His parents did not say anything as he was a difficult child and never listened to them anyway. Despite stiff opposition, we defied everyone in the village and ran away from there. When the excitement died down in a few years we came back to the village. By then the villagers and our families could do nothing very much.
In the initial years of our marriage my husband worked as a labourer and earned a little money. But soon he began falling ill. So we decided to go to Ukhrul where he could find some steady job that was not so strenuous. It was then that I discovered that my husband drank heavily. I did know that he drank even before I married him as I have seen him having a drink or two. I did not, however, realise how serious his addiction to alcohol was. It scared me when I found out. He also began telling me about how he was addicted to drugs and how his family was very upset about this. He told me that he never had physical intimacy with a woman but he did drugs often. He told me that he and his friends shared needles and felt that by sharpening used needles they could be free of infection.
In 2005, the full consequences of his drug use dawned on us. It also shattered us. During this year, he kept falling ill and would be confined in bed for days. He would suffer from bouts of diarrhoea and became very weak. A friend who worked in an NGO urged him to undergo tests for HIV. After much persuasion, my husband agreed. The results emerged as HIV positive. My husband was very upset. But with counseling and medicines he regained his health. The reaction of the community was frightening. Though they were not openly hostile, they minimised social interaction with us. My husband till date gets affected by this social rejection and I often fear that he will lose hope and be tempted to turn to alcohol for succor. Then I also fear that his health will dwindle and he will have to commence ART.
I also went in for tests after my husband tested positive. I was almost sure that I would be infected as well. But the counselors assured me that this need not be the case. I worried for days on end and my thoughts were constantly focused on this. When my result was handed over to me, I felt a tremor of trepidation but I saw that I was uninfected. I was overjoyed. I ran to tell my husband. He was happy too but I sensed loneliness in him because we were not bonded in disease and grief. I did understand that and did not grudge him that feeling. I knew that from this day on I needed to strive to keep him happy and healthy.
My husband’s friend counseled us on safe sex and many other precautionary measures we needed to take. Counselors began to drop by to address our worries and concerns. We felt reassured by all this. We follow all their instructions carefully. I am very keen to have a child but I think I suffer from infertility and also his being positive deters us.
We run a small shop now as my husband is unable to go to work for anyone. We borrowed Rs. 10,000; half from my brother and the rest from other people. The shop has just about managed to break even and we have repaid these debts. We manage to look after ourselves with the income. I am able to buy food supplements for my husband. I always ensure that we have a proper diet. I know that this is important for my husband in particular. His CD4 count today is a robust 900. The doctors are happy with this. My husband is not on ART and hopefully we should be able to tide over our crisis if we don’t have additional expenses. Sometimes we are provided nutritional supplements from the NGOs and this helps greatly.
But we had been borrowing earlier to attend to my husband’s health crisis. We are now in debt to the tune of Rs. 20,000. I sometimes agonise on how we are going to return the money. My father is very old now and works as a clerk in the church. He cannot support us in any way. My youngest brother is still studying in college and my father has to support his education. But I think with hard work we can clear our debts one day. I am fairly confident of this.
We live in a rented house and pay Rs. 600 as rent. The house has a kitchen and bedroom. I ensure that my husband remains cheerful all the time. I am gentle towards him and give him constant support and encouragement. We have a harmonious home and life and I make sure it remains like that because if he falls into depression his recovery will be impeded. I wish more NGOs can come forward to offer counseling to families that are affected by HIV/AIDS. It can act as a wonderful and huge support system. Supporting children’s education is necessary too.
Living as a widow with HIV and an infected child is difficult
I come from a family of four children. Two of my brothers are no more and one brother is handicapped. We lived in Chingjaroi Village. My father worked with the State PHED. I went to a government school in the village and studied till class nine. I was not a good student but my performance at school dramatically improved in class eight because of a teacher who inspired me and encouraged me to do better. He started tutoring me for free and in class nine I stood second in class. My parents and teachers were delighted. My tutor was keen that I finish my school and pursue further studies. He was from Imphal and stayed in our home at rent. So he was like a family member. He said he would try and fund my education.
But it was not to be.
I eloped with a boy who came to our village from Ukhrul after finishing his school. When we were in class nine, most of my friends had boyfriends. I did not have one. My friends would constantly pressure me and ask me to date. I just did not find anyone interesting. Also, I was tense about the pressure of class tenth. One day a friend approached me with a letter. It was a letter from the boy who had just moved into our village asking if I would date him. I used to see him often with the local band. They would sing on Sundays, during festivals and hold concerts. When they needed a female singer, they would rope me in. Even though I was much younger than the other band members, I felt at ease with them. They also treated me well. So I was rather taken aback by this letter from this boy in the band.
That Sunday, the band requested me to come for practice. I went in as usual and noticed the boy who handed me the letter more carefully. I was unnerved by the attention he began to show me. Later he in the evening, many members of the group came to my house for tea. My parents retired for the night after a while. After some time, his friends also excused themselves. We were alone and the boy demanded a response to his letter. He said he had fallen in love with me and wished I could respond. I said I was not sure. But as we began meeting often over the months, my liking developed into love.
Our moment of truth arrived on Gloriday (a camp for the youth). It was the last day of the camp and one of my friends said that my boyfriend wished to see me. So we went away to be alone. When we came back all the campers had gone back to their tents and we were scared of what people would make of our disappearance for so long. We were afraid of their reaction and got extremely worried. Pushed by fear and uncertainty, we ran away to his place. Then we decided to marry.
My family was appalled. My teacher was very sad and my father was extremely angry for dishonouring the family. My family never contacted me for a long time and disowned me. I was saddened and felt very alone. My boyfriend’s parents, on the other hand, had separated. He was living with his grandmother. Contrary to my expectations, she was very happy and welcomed me.
My husband was good at studies. He had finished his tenth with the help of some relatives who financially supported him. After we married his results were announced and he passed with good marks. He wished to study further but his relatives could not support him any further. They suggested he work instead as he had to support me. So he began working, taking on small jobs. After a while he began falling ill. We could not understand why this was happening. We went to the doctor often but the doctor was unable to help us. We went to Ukhrul for health check-ups regularly but no one could treat him effectively. He was asked constantly if he was on drugs or if he had indulged in it and his answer always used to be a firm no.
Then the doctors started testing him for tuberculosis. He was found to be suffering from it and the doctors put him on DOTS. He lost a lot of weight and would constantly suffer from diarrhoea. He began losing spirit as well and would be dull and depressed. He said that he was frustrated at being ill and on medicines constantly. He stopped taking his medication and one day he fell seriously ill. We rushed him to the Ukhrul hospital but he died. I was left with three children.
We thought he died of tuberculosis. We soon discovered otherwise.
I found myself falling ill much too often. My youngest child too remained unwell. None of the doctors could put a finger on the illness. Some said typhoid, others malaria. I started to become weak. I was given strong antibiotics but that did not help. A friend who worked for a local NGO urged me to go for a blood test and check my HIV status. I was incredulous. I could not imagine that I could suffer from such an ailment. But I went for the test all the same. I had no idea of the shock I would receive. I was told I was HIV positive. This was at the Ukhrul hospital. I felt like I was walking in a deep dark tunnel alone and helpless. I felt like this for days. Then fresh worries began to plague me. What if my children are infected? I was petrified and rushed to have them tested. It was found that two of my children were all right while one of them was HIV positive. This was my youngest child. The news saddened me immensely. All I could ask was why?
Both my family and my in-law’s family were very supportive. They knew it was not my fault. They were not judgmental about my husband either. All I saw was love and acceptance. It was a huge blessing, like being enveloped in a blanket of love. I got to know that I was infected by my husband’s use of drugs soon after his death. He apparently indulged in it before marriage but never told me. I learnt this by crosschecking with his friends. I learnt that many of his friends had died due to drug abuse and one of them was on ART. What his friends told me was that doing heroin was a fad and that all them did it for fun. But as the stocks ran out, they discontinued the practice. His friends told me they sniffed at first and then used injections. They told me it is very likely that he died from this.
Despite his faults, my husband was a wonderful person. He was gentle, caring and very giving. He was very reticent and a very private person. He was a brilliant carpenter and never quit working on his creations till he died. I remember one afternoon that I spent with him very distinctly. I was busy cleaning the kitchen garden. He called out to me. I went to where he was. He said he would like to recover completely. He asked me if I thought he would. I told him he surely would. He seemed very pleased with that answer. Then he said he wished he was well enough to buy the children dresses for Christmas. He never lived to do this.
After he died, life became difficult. I had very little means to survive. My father helped us occasionally. I now weave shawls. With this I pay up the children’s fees. Luckily the school has allowed one of my children to study free. This year, a family friend of mine has taken eldest one to an orphanage at Bangalore. I am told he’s getting proper education there. He should be in class seven this year. My other children -- two sons and my daughter stay with me. I am grateful to God that at a time when we required help it was given to us. We do not lack for food. I am on ART but I get it free. My CD4 count is 680 – an encouraging sign.
I have a child who is infected and this is of immense worry to me. I wish to emphasise the importance of emotional support for HIV affected persons and I feel the government too must provide counselors to facilitate greater support for patients and mass awareness and empathy for those suffering. Many people are succumbing to the disease in the lack of awareness. In my village Chingjaroi, that is 87 kilometres from the Ukhrul District Headquarters and with a population of over 5,000 people, we have to all travel to Ukhrul Headquarters or Imphal to avail medical treatment. In light of this we should have health centres that are within easy reach.
My husband traded in drugs
I grew up with seven other siblings in Kamjong. We belong to the Tangkhul Naga tribe. My parents were not financially secure as they were both orphans and we grew up under very difficult circumstances. I lost my elder brother in the Kuki-Naga clash. My younger brother died of malaria. Hardship was the highlight of our lives.
I married in 1989. My husband grew up in Imphal and along with some Kuki friends got into heroin trade. This was before we married. As he knew the Kuki dialect, he did well in the drug trade. At first he just traded in it, he did not indulge in drugs. But later he was tempted into using it after experiencing the pleasures. Soon he was injecting drugs and sniffing it. There was no awareness of the dangers at that time and he and friends were rash and reckless in its use. Over the years, many of his friends have paid dearly for this. They have lost their lives. Their children have been orphaned. The same happened to our family. My husband died in 2003 and so did my youngest son and I was declared HIV positive.
The crisis in our lives began when my husband began keeping indifferent health. The doctors suspected tuberculosis at first. But many of them later suspected it could be HIV/AIDS when his recovery was slow. But my husband staunchly resisted the idea of going in for tests. This reluctance is what caused him his life. He probably knew that even if the truth was discovered and his HIV status was proved, we would not have the money for treatment. At that time ART cost Rs. 1,800. My youngest child lied in 2003 also. He fell ill and before we do anything he passed away.
After my husband and child died I was heartbroken. For three whole months after his death I lived in a state of shock. But I forced myself to come out of it as I had to raise the children and find a way to survive. My husband did not work towards the end of his life and we were always strapped for cash. We had five children to support. After he died, I was scared and did not know how to support the remaining four children.
I was also advised to undergo tests. At first, I was told I was fine and the test results were negative. So I believed myself safe. It was in December 2006 that my condition attracted the suspicion of doctors. My eyes began giving me trouble and when I went in for tests, my condition was diagnosed and I was told I was HIV positive. My husband died without the knowledge that I was afflicted.
In 2002, IFAD had come to our village. We were encouraged to start our own farms with their support. My husband had earlier stopped me from starting the farm work as he feared I would not be able to handle the workload. In 2003-04, the IFAD began supplying orange saplings for plantation. I bought 700 plants and planted them on my farm. Until 2007, I spent most of my time tending the farm until an infection in my eyes disabled me. It was then, as I said, I was told I was HIV positive. I had to start ART as my CD4 count was 285. My health problems forced me to give up orange farming. This year has been extremely difficult for me. Though my CD4 count went up to 365, it was down to 321 in March 2008.
I have almost turned blind now. My two elder children have had to quit school as I cannot afford their fees. The two younger ones study in a government school. I feel helpless and completely alone. I often ask why I am being subjected to such trauma. But I take comfort from a paragraph in the Bible in the Book of Mark, Chapter 9, verse 7, which says, “And if your eyes cause you to sin, pluck it out. It is better for you to enter the kingdom of God with one eye, rather than having two eyes, to be cast into hell fire.” This verse forces me to think of things I have and should cherish. I do realise that whenever I have needed help, I have managed to get it – in one way or the other.
My in laws have a huge building in Kamjong. As I live in rented home and the burden of paying for the rent was becoming increasingly difficult, I asked my in laws if they could spare me a room. They initially refused. They accused me and my husband of depriving them of money and said as they had disinherited my son in his lifetime so I had no rights, so to speak. My father in law is a little more tolerant but he too did not support me. But early this year he fell ill and my mother in law could not look after him as the responsibilities were getting too much for her to handle. I volunteered to help. I moved in with them and took care of my father in law’s health needs. I also did the household work, cooking and cleaning without being asked to. My in laws then let me stay with them. I also give the nutritional support I receive to my father in law. I pray for them too. All these gestures have mellowed my in laws. As I said God always lets us find a way. I do have problems with them even now but at least I have a roof over my head.
My in laws had a large family but many of the children have died. Their eldest, the second (my husband) and the third sons are dead. They all have died because of drug use. Their youngest son is also addicted to drugs. My mother in law is tolerant now towards my children yet she has not been in favour of my educating them. My eldest son is 19 and he could have got a good education had my mother in law supported us. But she did not help me and actively discouraged him from studying. This is despite my father in law being a teacher for most of his working life.
In April this year I had to go to the eye doctor as I was losing my vision completely in one eye and the other eye was also bothering me. I asked him if I could be helped in any way. He said that replacing my eye with an artificial one was possible but not in Manipur as there were no facilities. He recommended that instead I be regular with my medication. I know that many people consider these procedures as a luxury but I know for me its mandatory – the basis of survival. I have had to pay for all these doctor’s visits myself. My sisters and brother are also not able to help me. But my brother and brother in law did borrow Rs. 2,000 each to support my medical expenses at one point. I had to sell off a GI sheet I had intended to use while building my house.
My eldest son now works as a daily wage-earner in Chingai Sub-Division. The second one helps me at home. My youngest son is in class eight and his studies are being supported by an NGO. They have been checked twice at the health centre and they are not HIV positive. I am trying to revive my orange plantation and I have invested in a fish pond and fish. I have borrowed Rs. 500 for this. My mother has huge farm in the nearly village where mangoes and sugarcanes grow in abundance. I want to start a small shop where I can market all these farm products. But I do not have capital and that is a disadvantage. I have to constantly think of ways to cushion our financial crisis.
Today, prayers keep me alive. I have found happiness in my church activities. Despite what I have gone through I am happy and count my blessings. I attend religious discourses and find strength. I also am open about my status and help women who wish guidance on this issue. I feel it’s something I have to do, a role that has given to me. I feel it’s my calling.
Fear and insecurity dominate my life
Rebecca Elue, 37
I was born into a family with an agricultural background. My father worked in the army and my mother toiled in the fields. With their hard earned money they supported me and my four other siblings. I am third in the family. Two of my brothers were sent away from the village to study. It was my responsibility to tend to my other brothers while my parents were at work. I studied at a private high school in the village and was still in class four at the age of 15. It was at this age that my aunt’s son proposed to me. He worked in the army. Both families got wind of his interest in me and were delighted. Even though we were cousins, our community permits and approves of such marriages. But I was resentful because I did not like my cousin. He was far older than me, we had nothing in common and I also thought he was not good looking. I protested against the match and argued but my pleas fell on deaf ears.
One day, I was asked to come back early from school. My brother came personally to take permission from the school authorities. He lied to them saying there was an emergency at home. I believed him. But when I arrived at the house, I found the family gearing up for festivities. My mother was cooking an exotic meal and pigs were being slaughtered to feed a large number of people. I realised that they were planning my engagement and was very angry but had no choice in the matter. By the end of the day I was engaged to my cousin. Everyone in the community was informed. Even my teachers heard of it and bombarded me with questions. I was infuriated and upset by the turn of events that were beyond my control. I was so angry that I decided to go and stay for few days with my mother’s younger sister at Kasom village. I wanted a break to regain my composure. But I was seething with rage even when I got there so I ran away with a boy I met, just to spite my family. I had just turned 16. I married the boy I ran away with in 1987, much against the will of my family who were appalled at my decision and tried to halt the marriage. His parents, on the other hand, were delighted with our marriage as they thought I would lend stability to his life. But there was nothing my parents could do as I had married him officially.
Soon after my marriage I started my family and I had five children in quick succession. I now have one son and four daughters. But after marriage, things began to sour and life became unbearable as the years wore on. My husband turned out to be completely irresponsible. He worked with the PWD and his job involved repairing roads. He squandered away his salary on liquor and came home drunk most days. It also dawned on me that he did drugs on a regular basis and it was a habit carried over before our marriage. But I found out about this only much later as my husband used drugs on the sly and never in front of me. The truth emerged in a strange way. I learnt one day by accident that his frequent visits to Moreh (an Indo-Myanmar border town) and Dimapur in Nagaland was to peddle drugs and it had nothing to do with PWD official duty. He used to stay with his brother and a cousin of mine at times and it was only when they both were arrested together on charges of drug smuggling that I uncovered the truth. My cousin had to be bailed out of jail while his brother absconded from jail. My husband escaped arrest as he had returned home. But this incident alerted me to the fact that my husband not only sold drugs but also used it.
As if these miseries were not enough, my husband turned abusive towards me and had no time for the children. I had to work in the fields to supplement the income to feed the children. I would have to leave the children behind with my in laws. In 2001, matters came to a head. My husband started falling ill frequently and seriously. He went to Imphal on his own for a checkup. As he did not admit to being on drugs, the doctors prescribed medicines so as to curb his alcohol use. He recovered the first time but subsequently fell ill again. The doctor urged him to test for HIV. When he did that he found out that he was HIV positive. This time he was accompanied by his sister’s husband. A week later, he died. This was in 2003.
The family did not divulge the fact that my husband was HIV positive to me immediately. My sister in law only told me the truth many months after he died. I also overheard my in laws discussing their son’s status and that it when the truth started sinking in. I was upset that my husband and his family kept this fact away from me. My whole life seemed such a wasted effort at that time. I regretted running away from home and a marrying him. My children had no emotional links with him as he hardly parented them meaningfully. They were actually relieved when he died. I used to listen to the radio and had some inkling about the routes of transmission. This made me ashamed of my husband and I could not cope with the anger and rage that was within me. Seeing my condition, my husband’s younger brother came to my rescue and talked to me. He spoke calmly and with fortitude and it had a calming effect on me. I then began to focus on my children.
After I recovered somewhat from my husband’s death and the aftershocks I was subjected to, it struck me that I could be infected too. My family members too began to express such fears and urged me to undergo tests. I went and I was declared HIV positive. I despaired and cried. I could not bring myself to tell anyone. I went through terrible mood swings. I felt helpless, ashamed, angry, sad and fearful at the same time. I started keeping away from everyone. I went into a shell and would come straight home after working in the fields. I kept away from all social interactions. This carried on from 2003 to 2005. For two whole years, I could not adjust to the reality that I was HIV positive. In November, 2006, I fell acutely ill. I went to Imphal with my daughter and had to undergo several checkups. The doctors could not get me well. My cousin offered to take to me to doctors in Ukhrul where she lived. She knew of my condition and I took up her offer. I went to her place in 2007 and she took me to traditional doctors. I had broken into rashes on my forehead and I did recover with their medicines.
I now live in the village of Kasom Khullen with the children. I have not been back to my village. I support the children by working in the fields and receive Rs. 2,000 as pension from my husband’s office. Now my third daughter, who is just 10, has been tested as HIV positive and this news has brought back the fear and insecurity into my life all over again. My life seems a never ending spiral of grief. My daughter did not know of this fact for long but her classmates (who had learnt of it from their parents) told her of it. Since she is young and has no real knowledge of what it entails, I have managed to assuage her fears by saying that I too suffer from it and I am doing well for myself. She seems content with this explanation for now. But she often falls ill and suffers from body rashes. The result is that she misses school often and I wonder how much longer she will be able to continue with school. She is now in class four.
The other children are regular with school, except for my son. While one daughter studies in Novadaya Vidyalaya, Lambui, another one is in Kerala in an orphanage where she is studying theology. I had to let her go as I have no means of supporting all the children. I manage to support my daughter who is in college with the money I earn. I am able to buy her books and stationery and pay for her fees. As she stays with my brother her accommodation and food are taken care of.
My son is, however, very rebellious and disobeys me all the time. It makes me unhappy and I fear for his future. He says he disobeys me as I do not satisfy his demands of money. But this is the best I can do. I don’t keep too well these days. My stamina to work in the fields has diminished and I feel exhausted most days. I wonder what is going to happen in the future and it makes me tremendously fearful.
The people around me know that I am HIV positive. I gathered courage to discuss my status with them after I enrolled with the World Vision. I was counselled and I became part of a small worship group. This lent me courage and gave me the strength to go public with my condition. But telling people and bearing up with their reactions is not easy. I recall a particular instance. I was in church and the pastor had a discourse on AIDS. I felt that the community’s eyes were on me and they were looking at me accusingly. I perhaps imagined it or maybe it was real. But the end result was that I felt horrible and isolated. While I did feel unloved and unwanted at times, I must also in the same breath acknowledge the sympathy and affection that has been extended to me by my friends. I would not have managed without that. I am also grateful to World Vision and JAHA-UNP+. The World Vision conducts free health check-ups from time to time that I benefit from while the JAHA Project helps me address my children’s needs, be it educational or nutritional. The efforts of these two institutions help as I do not receive remuneration from the church or the government.
A major fear I live with that I have not told my current landlord about my status. I was scared he would not let me rent the house if he knew the truth. I live everyday in fear of eviction as I fear he will find out. I have now decided to tell him soon because the tension of living with this secrecy and dissembling is beginning to affect me adversely. I have lived here since January 2008 and I feel I need to discuss this issue with him for my own sanity. I know that my own family fears my status and use separate utensils when they cook for me. This hurts acutely but I know I have to live with this. Keeping all these issues mind and weighing the pros and cons of the situation, I have come to the conclusion that I need to tell my landlord. I think I should give him the option of deciding for himself whether he wants me as a tenant or not.
My children are my greatest strength. I have of late begun to take up embroidery contracts. I work from 8 am to 11 am everyday with two self help groups that work under the umbrella of the World Vision. I do this with the intention of saving for the children. I earn Rs. 500 a month and I have to spend on wool and invest time in selling my products. The effort tires me but I have no choice. I am keen to learn to embroider on the machine as a single sweater can fetch me Rs. 500. But I don’t have the time to learn how to do this.
I have begun reposing my faith in Christ and the church. I find peace when I visit the church. I know I am not the best of mothers but I do my best. I pray to God every day to keep them safe, especially my little one who is infected.
There is a need for attitudinal change in the way people treat HIV patients
Helling Haokip, 33
My name is Helling and I am 33 years old. I am uneducated and grew up with four siblings, two sisters and two brothers. We grew up working in the paddy fields. My father works in the police department. I married early and had two children with my first husband. We had to divorce as his parents were not in favour of our marriage and opposed it vehemently. He now lives away from the village and has married another woman. I hear he is in Saikul (near Imphal). After a few years, I married another man and bore him a child. I was 20 then and the year was 1998. My second husband was from the Tangkhul tribe and worked with the Village Volunteer Force (Home Guards). Within a few months he fell ill and it was then that he admitted to using drugs before our marriage. He died within a year of our marriage, leaving me to fend alone for three children. I tried to have him treated at Ukhrul but he died.
My trials multiplied when I learnt that I was HIV positive. I learnt of this only in 2007. I was most certainly infected by my second husband but my affliction came to light only much later when I started keeping ill health. I would fall ill with fever constantly and I would take very long to recover. My friends suspected it was tuberculosis and advised me to get my blood tested. The tests revealed something far worse. The blood tests that I got done in Imphal revealed that I was HIV positive. I then recounted my husband’s symptoms before he died to my doctor. This included high fever and constant vomiting with blood. My doctor indicated that in all probability my husband died of AIDS without him knowing it.
As my CD4 count was low, I was asked to start on ART. The saddest part is that my youngest daughter, my second husband’s child, is also HIV positive. It broke my heart to see her suffer when she fell greviously ill the first time. She is just nine. She is okay as of now and her CD4 count is also satisfactory. My health too is on the mend now. I can cope with hard physical labour.
Many in our community know of our status. I discuss it with those who ask me direct questions. I do not volunteer information to those who do not seek it. I still feel defensive and uneasy about revealing our status. There is also a lot of shame and guilt attached though I know it is not my fault or that of my child’s.
I remember one very hurtful incident that happened to us. It is still a distinct memory and I have not gotten over it. My child was extremely sick and I took her to an army camp stationed at Kamjong for a checkup. When they learnt of her status, the medical personnel turned hostile and abusive. They used bad language and refused to examine the child. They were so rude that both my child and I had to rush out sobbing. When I look back on their behaviour, I still feel bad and tears well up in my eyes. I came home and administered Cifran to my child, hoping she would get well.
I feel very strongly about the need for mass awareness programmes so that people understand what people like me go through. There is a need for attitudinal change in the way people treat HIV patients. Bad attitudes can demoralise HIV patients and lead many to lose hope whereas a supportive attitude can help them cope with their lives. I know of many people in my community who are reluctant to find out their HIV status because this harsh rejection by society. They feel it is better to die not knowing that they are HIV positive than to know the truth and face rejection by people they have lived with and known all their lives.
I support my three children through my weaving activities. I do get tired far more easily these days and sometimes don’t have the strength to go on. But I do not have a choice and have to keep working. I see educating my children as a mission. I do get a lot of support from my parents. They take care of my children’s educational expenses. I do hope I can be financially secure just for my children’s sake. I do not crave for luxuries in life. I just pray that my children can live a life above subsistence level. I receive help from the JAHA Project of the UNP + in Ukhrul. Earlier, I used to get rice, oil and peas and some nutritional supplements for the children. Now they no longer give it to me. An NGO also paid my children’s fees when they learnt that they could be rusticated from school due to non payment of fees. I am extremely grateful for their help. But I cannot bring myself to ask them for more help. I feel small and humiliated doing it. I feel it is a matter of self esteem. I get nothing from the government hospital. The only help I received was a free blood test for my daughter at Ukhrul. I go to the JN Hospital in Imphal for my ART and I pay for it myself.
I sincerely urge the government to make efforts to find livelihoods for women like me so that they can educate their children. My children are my anchors and I am sure women in my condition are struggling like me to keep their children clothed, fed and schooled. They must worry as much as I do and cry themselves to sleep every night. I pray that the government finds a way to help women living with HIV/AIDS.
We are living through a trial by fire
Aning Haokip, 43
I have three sisters and two brothers. We live in Kamjong. I am the youngest. I decided to get married in 1992 to a man in our community. We married with the blessings of both the families. I have two daughters and three sons now.
Our trials began when my husband was detected to be HIV positive after a prolonged illness. The entire family then went in for tests and I and my youngest son have been declared HIV positive. He is just five. I have no idea how we have all come to be infected. We are living through a trial by fire. My husband insists he has never indulged in drugs or unsafe sex. The cause remains a mystery. We are all devastated by this news. It has turned our lives upside down. We don’t own fields or have property to handle the expense of this illness. We live on daily wages and have a hand to mouth existence.
Our fourth child has also become very ill and we had to bring her to Kamjong for treatment as we could not afford to go to Imphal. Earlier, we were staying at Maokot. She has scars all over her face now. Of my five children, three go to school and it is a challenge to pay their fees. My eldest child has dropped out of school.
We get some support from the World Vision. They give us some nutritional supplements. We never avail of government schemes as its benefits filter down only to a select few. We feel that there is no point in even applying. I am demoralised and broken. I can only counsel my children to be brave and show fortitude. I don’t have any message for anyone. I don’t think what I say will have any effect or influence.
I have told friends about my status but never shared this fact in public gatherings
Atumnao Longleng, 39
I grew up in a large and religious family. We were ten of us and the house was always bustling with activity. My parents had six daughters and four sons. We were all active in church activities and were always involved in one thing or another. I eloped with a boy one day, much to the consternation of all the people in my family. I was involved with my husband for a long time and kept it secret. I knew my parents would not approve of him as he was from a different village. I thought I knew him intimately and was fairly confident of my choice but time proved otherwise.
We married in 1997. He had just appeared pre-university and I had also appeared my pre university final year. Once we married, our families accepted us. His parents were quite happy with me and I got along rather well with them. My husband’s family comprised four brothers and sisters who all liked me very much. My parents were worried about our future but felt it wise to just accept the marriage. I lived for a total of six years with my husband and four years with my in laws.
We began our married lives by looking after a potato farm. It produced good yields and we led a comfortable life. Our first daughter was born there. I used to carry her on my back as I worked on the farm. Then we had another child soon after. While we were there my husband took ill and I had to rush him to the district hospital in. Ukhrul. He became very ill in 2002 and one day he summoned me to his bed side and confided to me that he had done drugs before we were married. He suspected his illness to be the result of this. He admitted to sharing needles with a friend. This revelation came as a shock as I assumed I knew everything of his life. I insisted that we go to Shija hospital in Imphal to get his blood tested. He complied. The results showed that he was HIV positive.
Both of us lived in a state of shocked disbelief for some days. For me, it was the saddest day of my life when I discovered he was HIV positive. I think my husband suspected his status even before the results were handed to him. An old friend of mine told me much later that he went to visit her one day before he tested for HIV. She said my husband told her that he believed that he most certainly suffered from HIV. He said what bothered him was not his affliction but the fact that he could have inadvertently infected me and the children. She says he was extremely perturbed about it. He, however, never discussed it with me. I think he did not want to worry me.
Our families gathered around us and supported us when the news was broken to them. They were careful not to show their fear or dismay. There were there for me when my husband died in 2003. When he died I was pregnant with my third child. That child died soon after birth.
Meanwhile, I, too, was detected to be HIV positive. This was a little before my husband died. My life plunged into complete darkness.
I remember one incident that happened soon after my husband’s death. It is stamped in my memory. After his coffin was laid to rest, I collected his clothes and soaked them in a large bucket so that I could wash them. Some children in the neighbourhood began to play with the clothes when I was not around. My elder brother’s wife was furious with me. She scolded me for being careless and said these clothes could have infected the children. Her comments hurt me to the core. Also, I had this habit of cooking extra in the morning so that I could share the leftovers with the children in the neighbourhood. This was something I had done for years. My brother’s wife began telling people that I was infecting their children. She also disliked my closeness with my younger sister in law. We used to share food and cook for each other. So she tried convincing my sister in law that the food I was serving her was infected. Such incidents did affect me and I began keeping to myself.
My children have been tested and they are all negative. The child I lost did not die of HIV. I am fairly certain of this because extensive tests were conducted in the hospital during my delivery and the nurses told me the child was okay. They knew of my HIV status and were careful in their examination of the baby. In fact I was not allowed to breast feed the baby.
I came back to my parents after my husband’s demise as I could no longer do hard work or support my children. I had to abandon the farm. I feel secure here with them Varangairai village and know that after I am gone my children will have a home. Three of my brothers and a sister are still with my parents as they are unmarried. The other siblings are married and live with their own families.
My eldest child who is ten is in class three and the youngest has just started school. While I pay for the fees of the elder child, an NGO El Shaddai takes care of my younger son’s education. My parents take on the entire financial burden as I can contribute very little. The house where I live now is my parent’s. What I do is I act as a caretaker and also look after ten children who are my brother’s, uncle’s and mine. We all live together and that way I contribute to the family. I cook for them and tend to their needs. I started ART in 2006.
I have told my friends about my status but never shared this knowledge in public gatherings. I feel intimidated even now to make such a disclosure. But I think I should prepare myself and learn to deal with it.
I bring up ten children and I really do not know if I am doing a good job of it. I wonder often how I can better myself. I wish my husband were alive. Life would have been much happier. I truly loved him and was genuinely happy with him. He was gentle and would never lose his cool or composure. I miss the strolls that we would take in the evenings around the village and the easy companionship we shared. Now my only thoughts and prayers are for my children. I hope they grow into mature, happy adults and can complete their education. My husband was not a church goer and I too abandoned the habit of going to the church when married to him. Now I have resumed going back and I regale the children with many stories from the Bible during lunch and dinner time in the hope that they gain some insights and lessons. I have not told my children that their father died of AIDS. But I have told them that I suffer from HIV and that they should pray for me. The children are extremely sensitive and I do know they hurt on account of my condition. One day my little girl said she wished she were someone else. When I asked her why, she said she did not like being a child without a father and a poor mother who could not afford to get her what she wanted. This hurt me unbearably. I told my child that I would do everything in my power to keep her happy provided she was obedient, studied hard and prayed everyday to thank God for everything he gave her.
Today, I feel better equipped to handle the situation I am in. I have accepted that my husband is dead and our old way of life will not come back. I have steeled myself to cope with life and whenever I feel low and defeated I turn to the Bible. I think this positivity has kept my CD4 count at a satisfactory level. I also attend NGO meetings and through them I learn how to take decisions, live a positive life and be financially independent. Such meetings and counseling sessions have greatly empowered me and lent me enormous will power. Today, I can confidently say that there is life after HIV. But I would like to add that my plight could have avoided if I had been warned about unsafe drug use and need to practice safe sex. I also realise that sensitisation of this nature will save many lives and homes. It is mostly ignorance that leads to the spread of HIV in our region. I wish the government also makes ART available easily and free of cost. I do receive it free but the effort involved in accessing ART is enormous. The procedures need to be simplified. So far I have received some help from the church. I am sure that such institutions can do much more.
My husband changed for the better after being declared HIV positive
I am the eldest of ten children in my family. I have seven brothers and two sisters. As my mother kept poor health most times, I shouldered most of the burden of the home. I did all the housework and looked after my brothers and sisters. I was not regular with school as a result and did not do well academically. I got married at the age of 14 in the year 2001. In the years that followed I had four children.
My husband is a friend of my brother. I knew he abused drugs before I married him. I used to see his friends sitting in groups and using drugs. But I did not know the consequences of this would be so disastrous, both to his life and mine. After I married him, he used to get me to buy him drugs. He is also into alcohol.
We stayed with his family for six years and I feel maybe had we stayed away, we would have been happier. My in laws indulged my husband and wanted his every wish fulfilled. When he would use drugs or alcohol and I would object, they would intervene and come to his defense. My husband used to get extremely aggressive and belligerent under the influence of drugs and alcohol. He would scream and get into fights. He complained about everything, including the food I cooked. The result was a disturbed home front and uneasy surroundings. There was always some tension at home and our lives were fraught with unhappiness. I was also scared for my safety when he was in such dark moods.
As a result of using drugs he also became sick. His feet would get swollen and ooze blood. He sometimes used to inject drugs and other times took them orally. I would have to attend to his illness and it was extremely tedious and frustrating. He would spend all that he earned as a field worker in an NGO in drugs and what was left was spent in trying to get him treated. My husband never paid attention to the children nor gave him his love. I was beginning to lose hope and faith in him.
But he has changed now for the better. He has stopped using drugs and this has caused a turnaround in our lives. He now is always sober, kind and spends a lot of time with us. But the sad part is that he has been detected HIV positive. This happened because both my mother in law and my own father insisted that he have a check up at the District Hospital, Ukhrul. He changed after he got the results. So the transformation is bitter sweet. While I am happy he has changed for the better, the fact that he is HIV positive saddens me. I feel helpless and frightened for him and for our future. I worry about what will happen to our children. I work in the farm when I am free. I realise that if something happens to my husband, I need to fend for the family all by myself. It is a scary thought. My eldest son is in class –A and he has a long way to go as do the younger children. They are just about starting their lives and the thought that I may have to support them alone is extremely unnerving.
No one knows of my status so there is no discrimination
I belong to a family of six children. I have three elder sisters, one elder brother and one younger brother. My father was keen that I study but I remained disinterested in studies and had to keep changing schools as my performance used to be poor. Our family was not a close knit one and we never shared our experiences or thoughts with one another. The result was that I looked for support outside of the house and I ran away with my boyfriend when I was in class nine at the age of 19 in 1993. I knew my husband since we were children. He lived in the neighbouring village and we used to meet often.
A few months after our marriage, my husband confided in me that he had used drugs and shared needles with a friend who died in 1996. Around the year 2000, my husband started falling ill. By this time we had three children. He was diagnosed with typhoid. We went to the ESRC and they directed us to go to Dr. Diamond. He suggested that we both get our blood tested. I was not sure why the doctor was urging me to get my blood tested. I had no knowledge of HIV/AIDS at that time. The doctor also cautioned me against having sex with my husband. I found it strange but adhered to it. My husband got his blood tested and was told he was HIV positive. But he did not share this with me for over a year. He did not want to worry me. My husband started on ART after his results were given to him. He would go down to Imphal to get his medicines. I only found out about all this after a year.
When I found out, I began monitoring his medication. He continued with his medication till 2005, the year he died. His death could have been avoided if he had been regular with his medication. But as blood tests for HIV and AIDS cost Rs. 1,100 and the ART Rs.1,200 we found that we could not afford his medication regularly. There was a lag period when we could not get his medication for him and this I think precipitated a health crisis. With the support of my in-laws, my husband started a theatre business to earn and buy his medicine. But he had a financial tumble and could not afford to buy medicines for a month. This led to deterioration in his health. He became very weak, his CD 4 count dropped and eventually became bed ridden. He died in 2005 in CMC Chingmeirong in Imphal.
I could get myself tested only in 2004 because we simply did not have the money. When the results were ready, I was also told that I was HIV positive. I was dumbfounded and only told my husband. I feared telling anyone else. My father in law got extremely worried about my three children and took them to the hospital to be tested. One was declared infected while the other two are okay. We all despaired. My husband took the news badly. He wanted all of us to consume poison so that we all die collectively. I reasoned with him that this was not the answer. He blamed himself for our condition. As I have related he died soon after taking the secret of my infection to his grave and the grief of infecting his child.
Now I am on ART. But no one knows. I go to the district hospital for medicines every month. Now it is available free of cost and I also get nutritional supplements and medicines for my liver. This has been possible due to efforts of World Vision. I don’t attempt to buy anything more for myself. I support myself by running a small shop with a loan provided by ESRC. I also get some support from them to put my children through school. My youngest one is now in a boarding studying and is in class five. I have no idea how I will manage in the future.
As no one knows of my status, there is no discrimination as of now. But I did see my in laws use separate plates and cups while serving their son and I wonder what they will do if I tell them of my status. It is this fear that keeps me silent.
I can be a doctor if I am regular with my medicines
I am 13 years. I study in class four. The name of my school is Maringmi English School. I joined this school last year and I stay with my aunt and her children. I shifted here after my parents divorced. My father who was looking after me fell ill and had to send me way to my aunt’s place. My father has been told he is HIV positive. The fact is that I suffer from it as well and as my father is ill himself he cannot take care of me. I know he often forgets to take his medicines. When I was living with him I would get him to take it. Now I wonder how he manages.
My father is a carpenter and works from home on projects that he can handle. Earlier, he used to visit me often. But he has not come in the last five months. Ukhrul, where I stay, is far from our village and maybe he finds it difficult to come all the way with his illness. I am worried about his health and hope he is okay. I will go and visit when I finish my exams on 31 November. I wish he comes to pick me up. It will be a special treat. He has promised to buy me clothes and my aunt, too, has also promised me a pair of pants. I am looking forward to spending Christmas with him and am right now studying hard for my exams. I want to please everyone with my good marks.
My father has a bit of a problem. He sometimes drinks too much and gets drunk. It is not a pleasant sight. My grandmother and grandfather scold him and try to make him understand but he does not listen. We used to all stay with them once. Now only he does. My mother was unable to bear the strain of living with him. The drunken binges were becoming far too much for her to handle. She left him and is now married to another man. She lives in Nagaland. She calls me up often. But she begins to cry when she hears my voice. She asks me if I am doing well and whether I am taking my medicines on time. She tells me to tell my father not to drink so much. She believes he will listen to me. She tells me not to play too much and help my aunt at home. But she weeps ever so often when she speaks to me. I break down sometimes also. I try to be brave but I do miss her. I also miss living as a family. I used to be happy living with my parents and grandparents. I had many friends there and we used to play in the fields.
I have been on medicines for the last two years. I am very regular with it. I set the alarm for 7 am and never fail to take it at the time. I set the alarm on my wrist watch. I have been told that I am HIV positive like my father and my aunt. This is a disease. But my aunt tells me if I am regular with medicines I will recover. She says she too suffers from the same disease and that she and I will be okay. I do fall ill often and break out into rashes all over my body. I also suffer from nose bleeds. But my aunt attends seminars and workshops and comes back with information to help us get better. She sits me down and tells me all about it. She also tends to me when I am sick.
I hope to finish school and study to be a doctor. But that’s a long way off. Right now, I enjoy playing with my friends. We enjoy our games during breaks in school. I have a huge friend circle and they all like me very much. But there are times when I get teased because of my illness. Once we were playing a game at school. For every question, our teacher asked us we had to answer with numbers. For instance, supposed I was asked what is your name? I would have to answer ‘ones’. The second question should elicit the answer ‘twos’. The game continued like this till we reached question eight. I was asked ‘what illness do you suffer from?’ I answered ‘eights’ but as it sounded like AIDS, my friends sniggered unkindly. I was hurt.
Another time, while we were playing I injured my hand. As I started bleeding, some friends rushed to help me. But as I was forewarned by my aunt who cautioned me against anyone touching my blood, so I stopped them from doing so. I asked them to look for the leaf that helped stem the blood flow and used it myself to stop blood loss. My teacher who happened to see this incident from afar asked the students why they abandoned me. They explained to her that I had stopped them as I feared they would be infected. She told them that this was a myth and that unless they were in direct contact with blood nothing would happen. I was extremely touched by her kindness. I also felt happy when she bought a pair of shoes for me.My greatest challenge is bearing my children’s expenses
I belong to a family of five. My family was well to do and as the youngest child I was terribly pampered. I was away from home till class five and came to stay at home only after this. I had completed class ten and was just about to enter class eleven. My admission form was ready. But just before my session was to begin in October 1996, I eloped with our driver. It was an odd situation. I had slept with him on many occasions and discovered that I was three months pregnant. I became very scared of my condition and my boy friend got to know about it. He refused to let me abort the child and said if I did that he would disclose our relationship to everyone. I had no choice but to run away with him. Or that is what I believed at that point in my life. I was 19 years old then.
My family asked me to come back home but I knew that they would face acute social rejection on account of me. I, hence, stuck to my decision. I knew they were upset for marrying beneath their social status but there was no escape for me. My husband and I moved in with his family and stayed with them for three years. My in laws initially liked me a lot and showered a lot of affection on me. This roused the anger of my brother in laws who resented this. They accused the two of us of taking away their parents and their love and felt that I was being given the attention only because I belonged to a well to do family. But I withstood all this criticism silently. My husband’s earnings as a driver were very little and we had to depend on my in laws for a variety of things. I lived a life far removed from the luxury I was used to at my parent’s house. I had four children and we needed to support them. So I held on with patience and fortitude.
Soon I discovered that these were not my only problems. I learnt my husband had a glad eye. I came to know that he had got another woman pregnant the same time as I. She has a son by him who is just a month older to mine. I was soon to learn worse. My youngest son fell sick and the doctor asked my husband if he was drug user. Though he denied it at first, it emerged that he did use drugs. I was very angry when I learnt about these things. I felt dishonoured and cheated. I stopped talking to him and our married life turned strained and uneasy.
My husband fell ill around this time and after being sick for a whole week in 2005, he died. He left me alone with four children, nine years after marriage.
He was extremely unwell towards the end of his life and ran high fever and turned delirious. He kept telling me that he could see a woman terrorising him. I had no idea of what to make of these rantings. I decided to take him to Imphal. I asked my brother to help me in Imphal as I knew I could count on his help. I then asked my brother in law to arrange for a vehicle. My brother arranged for Rs. 30,000 and he gave me Rs 20,000 on loan and the rest of the amount he said was his contribution. I was extremely touched by this gesture.
My in laws, however, did not approve of my taking him to Imphal. They thought he was better off in Ukhrul and should be under the care of the local physician. They kept mounting pressure on me to bring him back. My brother advised me to listen to them as he feared their backlash. He felt they would treat me badly if I did not listen to them. He arranged for a vehicle to take my husband back to the village. Once we reached the village, I had to hear adverse and foul comments and insinuations. The family said he looked far sicker after I took him and the community elders told me that my husband may look alive but his soul had left the body and technically it was a dead man I had brought back. Such strong criticism stung and I was hysterical with weeping. My husband died three days later. I was only trying to help him and all I got in return was bitter antagonism.
In 2006, I took my youngest child for a blood test as he kept falling ill. I was told he was HIV positive. I was told to get my blood tested and my status was the same. The irony was that I did not know much about HIV/AIDS and did not take the results seriously. My awareness was so low that I only understood the full import of the ailment when I began my ART. As the tests cots a lot of money I was initially very resentful and thought that they were a waste of money. But after I joined the World Vision and they got me to understand what the disease involved, I understood the value of blood tests and medication. I was among the first of the members who came under the people living with HIV category. But the knowledge made me sad and depressed as well.
I am ART now as my CD4 count is below 200. Though I began the course with little knowledge of it, now I know how important it is. I know now that I should have started much earlier and that I would have been in better health had I had done so. I also know now the need to be regular with it.
My son is also on ART. I used to earlier go to Imphal to collect it but I have had the records transferred to Ukhrul as the travel was incredibly tiring for me. From 2007, I obtain our supplies from Ukhrul. I had begun to give my child the medication meant for children. But I think there was a mistake – either in the medication dosage or the way I was administering it. This was because my child had begun to sleep long hours after he took the medication. I have changed the dosage now and he is much better off. He is six years today. I feel very sad to see suffer like this.
I moved out of the village and my in laws house a year after my husband died. I miss my husband but I have to focus on educating my four children and ensuring that my youngest child is regular with medication. I have set up a small shop to support the family expenses. I have borrowed heavily to set this up. My brother was worried for my safety and felt that perhaps I should stay with my in laws and work in the paddy fields to support the children. But I knew that they would get resentful and would begin to find ways to getting me out of the home.
I have also begun to embroider so that I can supplement my income. I attended a six month course organized by the World Vision to learn this skill. But I get tired easily and cannot do much. The school fee for my youngest child who is HIV positive is paid by World Vision. The El Shaddai Resource Centre pays for my second’s child education. The third one stays in a boarding and my eldest son stays with my in laws. They insisted that he does. I hardly know this child of mine. I don’t get to see him and he is class five. All my children (except the one in boarding) study in The Hr. Themzan Academy. My children are aged 12,10,8 and 6. From the government, all is get is free ART. I am afraid my eldest son does not maintain links with us as my in laws have spread all kinds of lies about us. It is a hard cross for any mother to bear. Yet I have to remain stoic.
I have not disclosed my status to too many people as I know I will face rejection. I live in a place where I know everyone and I am not ready to come out in the open. My youngest child often asks me why he is sick while the others are not. I joke with him and say that it is because he eats a lot. But I know I will have to tell him one day. In fact it is my children who remind me to take my medicine. Of late, they have been discussing about HIV at home. This is because it is discussed in their school. I listen to them but say nothing. I know I cannot avoid the topic for long and it makes me uncomfortable to think about it.
There is a couple in the neighbourhood who are HIV positive. I want them to attend meetings with me. But I hesitate to ask as the lady has a small child and there is no one to babysit.
My greatest challenge is bearing my children’s expenses. I need to attend to their food, school fees and other necessities. I also need nutritional supplements for the little one. Today, I find it hard to work, tend to the children, attend meetings and also maintain social relations. But I strive to do my best.