By Thiyam Ningol, Dr. Nalini, Africa
The children had been waiting for this moment. They had been watching TV, the “National Channel” to see their mother, to hear her speech.
When their mother’s name was called out, the 2 two girls screamed, they saw their mother approaching the stage amidst the applause of the audience. The youngest girl became crazy, screamed louder and louder “Mummy I love you, we all love you very much, we are seeing you on the TV.” The elder sister also cried with tears of joy rolling down on her cheeks.
The two boys controlled their emotion as their mother had trained them.
The audience in the Congress have quitened down, but the two girls were still screaming.
The boys shouted to them in unison to shut up and ordered them to allow them to listen to their mother. They missed the beginning part of her speech.
“…..I am a mother of four children. I am on ARVs for the past five years.
We have lost four family members - my husband, my brother in law, his wife and their last born baby.
All of them started suffering when there was no ARVs available at the affordable prices.
On top of that, there was this concept of stigma.
Today I am going to tell you from my own practical experience about stigmatization and what I have lost from that.
My husband was diagnosed to have HIV infection for quite some time before he decided to tell me. He could not tell me earlier because he thought I would react to him badly, I would neglect him. We would stigmatize him. He delayed to get my attention and care for him.
My brother in law and his wife had the same situation. We never knew about their health situation till when my sister in law became very sick and was in her last days.
After I was checked and found HIV infected, for the first few days I segregated myself from my friend circle. When I saw people whispering something to each other, I suspected they were talking about me. If anybody asked whether I was feeling alright, I answered them rudely. When they offered help of any type, I straight away refused their offer. Seeing my negative attitude, my friends and colleagues started avoiding me. When I was avoiding them, I thought I was doing myself a favour. When they avoided me, I accused them of stigmatizing me even though I came to know later that none of them knew I was HIV infected. To my surprise and relief, since I openly started attending the clinic and taking part in the HIV/AIDS counseling and educational programs, I have more friends and well wishers than I ever had. I am back to my old friend circle.
They make me feel stronger and needed. They value my efforts. They talk about me as a role model and I feel proud. That is when I realized, the stigmatization was within me, from me to myself, making myself miserable.
We talked to our children when they were still young about our condition. With whatever knowledge we had about HIV infection at that time, we explained to them and gave them the message of importance of its avoidance.
Even though they were still very young, they saw and remembered the sufferings and the lost our family have had so far. Today they see me active and living like any other mother, loving them, caring them. My children are my inspirations.
All these have become possible because of the tireless efforts of our government, the doctors, scientists, the donor countries and above all the openness and willingness to participate voluntarily by the people who are affected with HIV.
So, my dear friends and children who are listening to me, come out and join hands with us to fight against this dreadful disease. There are a lot of people out here who care about you, about us
Thank you all.”
When her speech was over, all the children embraced together and wept together, each swearing in silence to be strong and supportive to their mother.
They waited eagerly for the phone call from their mother.
Mama Caroli was HIV activist.
She was on the ARV drugs for the past 5 years.
She became a widow 10 years ago. Her husband left her with two beautifull children, the elder, a girl named Carolina and a boy, James. They were 12 and 9yrs old, primary school students when their father died. Mama Caroli ( Sophia) did not hide from her children the nature of the illness their father suffered.
Sophia worked as a secretary in a successful and popular travel agent office. She was popularly known as Sophi or mama Caroli to her close relatives and friends. When her husband started acting strangely, she had enquired from him whether anything was bothering him. He did not reveal anything. As his health condition started deteriorating, one day he had to apologise and made Sophia listen to him with shock and disgust.
They were working in the same company; that is where they met. He worked as the tour guide. Very often he traveled with the tourists to different destinations, mostly to the game parks. Sometimes he would go for over a week. She never suspected him of having a relation with other women. She trusted him.
When the two hotel attendants died with whom they had casual relations while on tour, Sophi’s husband and some colleagues decided to check their health status. Most of them were found to be HIV infected and her husband was one of them. Not long after the death of the two hotel attendants, one of their friends had committed suicide just weeks before getting married. Sophi’s husband had been attending different clinics but things were not going favourably. Recently he had contacted TB and for that he needed to attend the clinic daily. He had to excuse himself from the duties assigned. He did not like to reveal to his employer. He was given several warnings. Before things went worse he had to tell Sophi about his health and his job.
Sophia was in shock. She could not think properly. She was confused whether to console him or to accuse him; to thank him for being open or blame him for hiding so long. She wanted to scream, cry out. She felt like tearing her body into pieces; pull her hair and pluck out the scalp. But she did none of them, just stared at him blankly. Did not speak a word. But her husband saw and heard all the unspoken anger of Sophi. He noticed the twitching of her lips, her nostrils, heaving her chest and sighing often.
They remained seated in the same place for more than one hour without saying anything to each other. Each had devilish thoughts wandering wildly inside their minds.
When the children demanded supper, then only Sophi realized it was already late evening. The children got dry bread with tea only as supper on that night. The children noticed the tension among their parents; so they accepted the food without grudge.
Sophi did not sleep even for a wink that night.
Her husband suggested that the next day morning when he would go to the clinic, they should go together so that the doctors could check her condition also.
Sophi thought again and again if she would also be found HIV infected, then what would happen to the children.
After her thoughts of “IFS” wandered through all the possible tough lives, imagining her children being among the street children, Sophi decided whatever result come out from the tests, she would fight till her last breath. She had heard superficially from the news media that the government was going to provide free treatment soon. So there was a slim chance of surviving till their children become adults. She agreed to go with him and spent the rest of the dark night waiting to become brighter.
The next day morning, she asked her daughter to take care of her brother, as they might be late to come back.
When they reached the clinic, Sophi was surprised to see so many people. Among the people, except for some few very sick looking patients, most of the people were normal looking according to her understanding. She whispered to her husband “ Are these all sick people?” When she was told that about 95% of the people there are HIV/AIDS patients, she felt new hope coming.
She wanted to ask him why he had never told about his visits to the clinic before but decided not to. Questions would provoke more misunderstandings. Better if they concentrate more in their future.
A nurse announced if there was any new comer to the clinic.
Five of them including Sophi was taken to a different room. After few minutes each one of them were told to go inside in turn to be counseled. She was the last in the list. She became nervous. She looked around and found some leaflets. She took 3 different leaflets and started reading. She reread 3 times.
When her turn came, she was calm. The leaflets have helped her. The counselor talked to her, explained to her about the nature of the disease and consequences; how to take care of herself and her husband, how to protect non infected people.
After the thorough explanation, they took her consent for drawing blood from her veins for testing. Things were not that frightening as she imagined.
She found her husband waiting for her. He had already taken his medicines for the day.
They were told to come back the next day for the results.
They were late to reach the office but as they had already informed earlier, nobody gave them a long face. Sophi had piles of files on her table to work with. She took it as a blessing in disguise because she was not in a position to sit and gossip even little with her fellow workers as they usually do. When her friends saw the piles of her work, they left her alone. Once in a while, she was slightly distracted, she found herself wandered again in far imaginary thoughts. She tried not to but she could not help. The next day again she would be late, so she had to finish all the pending works.
Surprisingly, she coped with her work. She did not feel hungry either. So during the lunch break she continued working. She was the last one to leave the office on that day.
The next day when they went to the clinic, she saw some more new faces again. Her confidence increased. She was given her results; as expected she was announced to be infected but her condition was far better. She did not need any immediate medication.
When they reached their office, they were given the information that her brother in law, her husband’s younger brother had called and requested them to come to the hospital where his wife was admitted.
Sophi took out the leaflets from her purse and reread again. She put two into two together and started recollecting the signs and symptoms her sister in law had. She could be thinking wrong, so she waved the ideas of acting as doctor by putting a diagnosis.
After the office duties, she and her husband passed by the hospital as they were told. They had not seen each other for about a month only but during that one month’s time her sister in law had changed unrecogniseably. On the heavy metallic hospital bed was lying her frail sister in law barely able to move. She was so thin that her skin looked like glued directly to the bones without any fat layer below. Her eyes were sunken inside the eye sockets. Her lips were dry and peeling. Sophi imagined herself lying on that bed with the same appearance. She screamed aloud “ No, I wont allow it”. The nurses consoled her and escorted her outside. She cried sitting in the corner. She herself was not sure for whom she was crying-for herself or for her sister in law.
After hearing her test report, since morning she was trying to behave strong but the sight of her sister in law had made her loose control. Her husband saw her and understood her but left her alone, letting her have all the time she needed. Her brother in law approached her and explained the situation, requested her to understand the patient’s condition.
She was sick for quite some time.
She had three children. The last born was sickly from the time of birth, survived hardly 6/7 months. It was during that time, when their child was very sick and admitted in the hospital, the doctors advised them to check their health. They did and they both were found HIV infected. Soon after the death of the child, her health started deteriorating.
The husband, Sophi’s younger brother in law was a successful businessman, engineer by profession. He had his own construction company and was quite popular. As quickly as possible, they started taking care of their health but outside the country. They could afford to go regularly and get checked. As the days go by, his business started getting affected. Slowly, unnoticeably they started neglecting about the trips abroad. So she decided to go back to her parents in the neighbouring country.
When he visited her last, he found her in the critical condition and despite the protest from the parents and relatives he had to bring her back home to be with him and the other two children.
The patient did not live long. She passed away on the 4th day.
Sophie and her husband decided to be supportive of each other and fight with the disease together. But she found out later that they were a bit late, her husband had many other complications which the doctors explained to them as opportunistic disease.
Even before completing the TB treatment, he developed fever and sever cough. He was admitted in the hospital. He was terminated from Job with benefits but the money was all spent in his treatment.
Whenever Sophi came to the office, she thought people were acting strangely to her. The friends with whom she was sharing jokes and gossips were no more friendly with her. They greeted her very casually and once in a while asked if she needed any help. Sophi thought she did not need people’s pity, she could manage on her own. She declined any help offered.
Slowly she distanced herself from people and friends. She did not like to be asked about her husband’s health. To avoid the endless enquiries, she segregated herself from the society. She preferred to remain busy, occupied with work. She was also afraid of loosing the job. As a senior worker of the company, she was drawing a comfortable salary. Her employer liked her work. Her recent extra attention to her work made the employer even happier. She was the only bread earner now and her responsibilities have increased.
She loved the children of her brother in law. Very often she passed their house and made sure the children felt comfortable. Whenever possible, children of the two families were allowed to be together.
Her husband started loosing hope. He started becoming un- cooperative. He would defy doctors’ advices. Instead of spending money wisely, he would booze local liquors, get drunk and disturb the family members. Sometimes he would miss his clinic appointments. Sophi tried her best to persuade him to come with her to the clinic but he would not listen.
One day when Sophi came back from office, it was raining and late evening. She did not find her husband home. The children did not know where he had gone. They assumed as usual he must have gone to drink. They waited for him till late night. He never came back. The rain had not stopped also. She was about to inform her brother in law, when somebody knocked loudly on their house. Apparently, the man who was knocking was drunk also but he could relay the message at least. They were drinking together in the local bar when Sophi’s husband complained of chest pain and started coughing. He coughed blood, a lot.
Sophie rushed to the bar with the drunken man, asked her daughter to inform her uncle and stay with the brother calm. She would be back soon with their father. Sophi found her husband lying cold and unconscious on the dirty floor of the bar, his face, neck and body smeared with blood. They took him in a taxi to the nearby clinic. On arrival, the doctor informed them that he collapsed some time ago. They turned back with the same taxi to the mortuary.
After the formal ceremonies of the funeral, Sophi requested the family members to sit down and discuss the serious issue.
Sophi’s husband had an elder brother also. Unfortunately, he did not have any children but he and his wife lived in the village happily.
Sophi was the first one to talk openly about her health. She omitted the minor details how she contacted the disease but gave detailed information when and how she came to know about her HIV status. She informed them also that she regularly attended her clinic and she would continue doing so. She understood her responsibilities and as long as she could, she would continue working and taking care of her children.
Her openness moved the hearts of her in laws. They all promised to remain one family and support each other.
After all the visitors have gone, one evening very unexpectedly, her younger brother in law dropped by to their house. He looked confused and lost. He was nearly breaking down. He requested Sophi to help him.
Sophi knew something was disturbing him but not connected with his job. He was a master of business and had lots of friends to help him in financial difficulties. It had to be something personal. She had a little hitch that he too might have come to disclose his secrets. She remembered the kind and encouraging words of the counselors in the hospital. She acted like one.
Slowly she noticed his cloudy mood changing, looked at her with hope.
He told her everything.
He had come to discuss about the childrens’ future. He requested her to move in his house and help him to take care of his children.
They had an open and thorough discussion. She was correct. He was on treatment for HIV/AIDS. As the things were open for discussion, they felt comfortable to discuss, plan for the better of their children. But Sophi still refused to move in his house. Instead she suggested that every Sundays and public holidays the two families should be together.
The following Sunday, when they met, Gerald, Sophi’s brother in law suggested that Sophi should work in his company. In that way even if anything would happen to him, at least Sophi would have known about the nature of the business and would be able to continue the business after him. Even though Sophi worked with a travel agent, as a secretary, she knew, she would catch up easily with Gerald’s help. She accepted the offer.
The next day, she submitted her resignation from her work with a months’s notice.
They started working together. As she expected, within two months time, Sophi had learnt a lot. She took personal interest in the company. With her help, Gerald found out some of the loopholes used by his workers to steal from him. Gerald promoted her from secretary to assistant managing director.
For three solid years they worked together. The tie between the family members were stronger. The children were happier. Sophi’s children were 17 yrs and 14years old. Gerald had two children, one boy 14 years and a girl 12 years old.
Gerald had built three houses for himself. He let out one house as a residential building to the expatriates, another one he was using as his office and in the third one they were staying.
It was already 7 years now since Gerald’s wife died. He had not thought of getting married again. Sophi knew he was seeing women. But that was not her concern. She talked freely to him about re-infection and the dangers following the re-infection. Gerald sometimes teased her as family doctor.
What Sophi was afraid of, was happening now. She started noticing Gerald loosing weight sooner then expected and he was coughing. He had just started a very important project. He wanted to supervise it himself in every way. So he was neglecting about his health. He was with the workers in the dusty field, in the sun and working 24 hrs eating whatever came in hand.
She could not afford to loose him too. She could not help her husband because she came to know about it too late. She had to act promptly.
She forced Gerald to listen to her and took him to the hospital. He was treated for an opportunistic pneumonia.
During his absence, Sophi looked for a young, energetic graduate, paid him well and put him as temporary in charge. He had to report to Sophi everything in detail first and then with Sophi’s approval, to give Gerald the technical report. Within one month, Gerald was able to be on his duty again.
They have learnt a lesson together. They cannot go on working 24 hours. Their survival was more important than the profit they would make. They discussed everything in detail and concluded to call his elder brother from the village and stay with them.
Under Sophi’s insistence Gerald wrote a “will” making his elder brother as the rightful caretaker of his properties till his son becomes an adult, 18 yrs. of age. His brother agreed to come. The whole family was happy about the arrangement. They were waiting for their arrival.
It is very truly stated that luck strikes rarely but bad luck comes in chain, one after another. The day they were waiting for their brother and wife’s arrival, in the 1-PM radio news it was announced that the bus they were traveling in had an accident and it was feared that any survivor would be found. The bus skidded in a sharp turn, overturned and plunged into the deep river 50 meters below the road.
It took two days till all the dead bodies were recovered. Gerald and Sophi collected their brother and wife’s body and buried them on the same day.
It was hard to believe but they had to face the realities. Sophi insisted that the children are grown up enough to be told about the truth and their plans.
Reluctantly Gerald agreed. Her children knew about her condition but Gerald had never told his children about their late mother’s illness and about his own condition. Sophi was prepared for this moment. Very tactfully she talked to the children about HIV, how do people get it and what happens when people get AIDS. Whatever knowledge she had, she used it in her own way and to make the little children understand it in a familiar way.
The last crucial message came when she talked about the family. They had already lost three people with AIDS and the remaining two adults were also victims of the same disease.
Sophi’s daughter and the older two boys understood everything clearly, the youngest one cried because she heard that the adults were sick also. Her cry induced the others also and all of them started crying. Gerald could not watch the situation. He stood up to walk away but Sophi stopped him and told him to stay . That was the moment when the children needed him more than any other time. He did as he was told.
After the children have cried enough, Sophi continued counseling.
She told them that even though they were affected, still their condition were good. They, the children were their inspirations; they made them courageous to look for something positive ahead and assured them that together they would do it. They would manage to make them grow up into adulthood, make them educated and settled. In turn they needed their understandings and cooperation.
She made them to promise that they would keep away from the disease by behaving decently. They had seen and felt the sufferings of their loving parents. They should make a full stop to the disease in their family. She emphasized the children to ask anything about the disease, about them openly.
She asked Gerald to brief the children about the nature of his work, how successful he was and what were the expectations; about the difficulties of running the business.
They concluded the session of the day with the promises of being together for a long, long time and everybody to work hard to make it a reality.
After the children were dismissed, Gerald thanked Sophi for relieving his burden. In the evening the whole family went out for a dinner. But Sophi still maintained the condition of staying separately with her children.
Two years passed. Gerald could not make it. Despite the promises he gave to his children and Sophi, he passed away leaving everybody and everything under Sophi’s custody.
Before he died, he made every decision legalized so that Sophi would not face any problem from the side of his late wife’s relatives. Copy of the legal papers were mailed to them prior to his death.
Sophi and his children had to move into the bigger house with the children of Gerald.
She knew that she would not be able to continue running the company. It needed a professional to manage it. After consulting with experts and friends she decided to sell the company while it was still in a good shape. She involved Gerld’s son fully in the decision making. Even though he was not physically present, he had the knowledge of all the transactions. He had just started secondary school. It was a long way for him to become an engineer and during all that long period the fate of the company was not predictable without having a professional. He understood it well. Sophi continued encouraging him to establish a better company when his time comes.
The company was sold but not the building. It was leased to the new owner. The money from the company was deposited in each child’s name for their insurance in studies.
Sophi continued working with the company for six months till they found new workers and be satisfied that the name of the company continue surviving.
After leaving the job, she joined an NGO dealing with counseling and treating HIV/AIDS.
With her practically acquired experience in counseling and professional managerial skill, she became a very good activist of AIDS. She herself had started on ARVs. She became , a living, admirable icon of HIV/AIDS patients.
Her children had overcome the fear. They all have become, everyone of them doing very well in their studies.
They all gathered together to listen to the opening speech at the International AIDs conferrence to be given by their mother, the icon activist, to be broadcasted live on the National TV.
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