Special Feature

Living and Dying with AIDS

Karen Margrethe Ali

Globally there are roughly 40 million people living with HIV/AIDS. The estimated people living with HIV at the end of 2004 in Bangladesh, was 7500. As of December 2004, a total cumulative number of 465 HIV/ AIDS cases have been confirmed and reported by the Ministry of Health and Family Welfare, 87 have developed AIDS, and 44 have died.(1) Although there are reasons to believe that there is significant underreporting of cases, and they will be increasing in number, there should not be any reason to fear that Bangladesh will be one of the most affected countries in the nearest future. There have been many steps taken in the right direction to improve the situation for those who have HIV/AIDS in Bangladesh, and considering the small number of people affected, the issue has been given a lot of attention. However, after talking with affected people, I came to realise that whatever is done is not enough from their perspective. I write this story in the hope that the depth of the suffering this group is facing because of social stigmatization and isolation can be deeply felt, and that there should be no doubt that people who are suffering from HIV/AIDS are the most vulnerable group in Bangladesh today. The low figure of affected people gives us some expectation that adequate efforts can be made to improve the quality of the daily lives for these people. The medication is only adding a few years to their lives, but these people need to go beyond living longer, they need a reason for wanting to live longer…

The new untouchables in Dhaka
"Hasan"(2) has agreed to meet us to tell us what it means to lead the life of a person with AIDS. He arrives almost two hours after the scheduled time to the restaurant we have agreed to meet in. Already from a distance it is obvious that he is a very sick man. His limping, hesitant way of walking and the uncontrollable shaking of his body give the impression of an old man. He must have been very good-looking once, but the disease has added years to his face: His teeth are in bad condition, his face unshaved and his mouth seems dry. If I did not know, I would have taken him for a drug addict. At least until I look into his eyes. His eyes seem untouched by the disease. They are clear, expressive, and even beautiful, but at the same time looking so sad. These eyes look straight at me when I approach him. Later on that day, I will discover the expression of helplessness in these eyes and from time to time they will be filled with tears when he tells us his life story.

He apologises for being late. He was not sure that he would be well enough to make it today. He tells us in a whispering voice that he has problems with his throat that it is painful to talk, but that he has decided to make an effort to talk with us today. He wants people to know how it is to live with HIV/AIDS in a country like Bangladesh. I suddenly feel intimidated in front of this man. What question can I ask a dying man? Can I try to probe how he is finding solace and resignation? How his faith is backing him up?

No these questions cannot be asked, he has agreed to an interview, not to a therapy session….

My mind goes blank for a while; I have to be careful not to talk about the future, his future, because most likely he does not have any… I do not see the point of asking how he got infected either. Interesting for some people maybe, but does it matter now? We soon realise that Hasan is getting negative attention from other people in the restaurant and, when we leave the restaurant he draws it from people passing by in the street. Some people stare shamelessly at him, maybe wondering how a guy looking so sick is able to walk. We move to a place that will be quiet at this time of the day, a flower exhibition: Hasan's great passion is flowers and trees. For the first time a smile appears on his face, as he looks at the beautiful flowers. He approaches the most colourful ones, looking at them from different angles, smelling them, treating them with so much care. I cannot help it; I take my own camera out and take a picture to capture the moment… While packing down the camera, he whispers to me in a voice that hardly can be heard: "Sister, please do not take any pictures of me without telling me first…"

I looked at him, surprised; he had been informed that I am learning photography and that I would be taking a few pictures for my practice. What was this? Mahmud, the photographer from Map(3), was freely shooting pictures from all angles, and I could not take a single one? Had I blown the whole interview by offending him before we got started?

I told him that I was sorry; that I would not print the picture I just took, and asked him if he did not want me to take his pictures. He said that it was ok, but repeated that I should tell him when I wanted to take his picture so he could be ready, and I agreed. I reflected upon his reactions, was this some kind of vanity? What was the difference between the photographer and me? Did he react in this way because I am a woman?

So it is here, among trees and flowers, that Hasan in his whispering voice, covering his mouth with a handkerchief from time to time, gives me glimpses of a life of a human being with AIDS. At the same time, he remembers to tell me the name of each of the flowers we pass. I may not remember the names of all the flowers, but when I see them again I will remember Hasan, a lonely person with AIDS, maybe the loneliest that I have met, an outcast, totally isolated from most people in a crowded city of Dhaka.

In 2000 Hasan worked in Dubai for four years as an unskilled worker. From there he sent home money regularly to help his family. When he was tested HIV positive, Hasan was sent to prison in Dubai where he was kept together with three other Bangladeshis and another foreigner, also tested HIV positive in the prison-hospital. Their feet were chained 24 hours a day and the chains were only taken off at prayer time. After some days, the feet got swollen and painful from the chains, which left big marks.

After two weeks in prison, he was expelled from Dubai. When he was taken to the airport like a criminal to return to Dhaka, he was the last passenger to enter the plane. Just before he entered the plane, the chains were removed from his feet in front of the employees at the airport. Finally, a gracious act, by somebody smart enough to understand that he would not run away once he had boarded the plane…

Hasan listened to the excited voices of the other passengers, most of them unskilled workers returning after years of hard work. They were talking about the reunion with their families, the gifts they had brought, how they were going to spend their hard-earned money etc.

He kept quiet hoping that nobody would speak to him or ask questions. He was wondering what would happen to him once he returned to Dhaka, and how he was going to tell his family about his being HIV positive. Nobody picked him up at the airport; he had not had the courage to inform his family that he was returning home.

After his return to Bangladesh, he stayed in with his wife, parents, brothers and their families. He did not tell them that he was HIV infected. His older brother was suspicious. He had himself worked as an unskilled worker abroad, and he knew that Hasan could not have been suspended from his job without a serious reason. After one month, Hasan admitted to his brother that he was HIV infected. His brother assured him that it was nothing to worry about, everything would be normal like before. But Hasan soon came to realise that his brother's assurances were only words, and that nothing ever would be the same again.

"As long as our mother was alive," Hasan says in his whispering voice, "I was able to live a normal life with my family. But when she died, their behaviour changed."

It is painful for Hasan to talk about this. How his family's behaviour changed towards him. In an attempt to conceal his tears, he walks a few steps away from us. After some time, he returns, makes an attempt to continue this part of his story, but seems to give up again and between sobs and attempts to control his emotions he just shakes his head and repeats in his whispering voice, "It wouldn't have been this way if mother was alive, it wouldn't."

Some time passes. Is he going to continue? Yes, he wants to continue, he wants people to know, he wants to give AIDS a face: "So nobody will have to go through the same kind of sufferings that I'm going through…" he tells us.

Hasan soon came to realise that his family, even after getting information about how HIV gets transmitted, would continue behaving differently towards him. "I don't know what was worse", he says." I had to accept that my family had special cups and plates for me so I would use only them when I came to visit. But it broke my heart when I understood that my nephew was no longer allowed to sit on my lap as he always used to do. I do not know what they told him, but I remember the look in his eyes when he was taken away from my lap and I knew that he would never be allowed to sit there again"

A couple of months after Hasan's return to Dhaka, he felt as if his body was burning inside. He was given a prescription by a doctor, but the medicine was expensive, almost two US dollars per day, and he could only afford them for a shorter period. He got the name of another doctor who agreed to see him, that is, he would be allowed to come when all the other patients had left. But Hasan had problems hearing the doctor's questions, as the doctor would not get close to him but was talking from a great distance, in fear of getting infected…

In a large hospital in Dhaka, he met with a team of five young doctors under training in order to specialise in HIV. Their main interest seemed to be to find out and discuss how Hasan got infected, and he found their questions personal, disrespectful and impolite.

- How could you do this? One doctor exclaimed, and the others joined in and started laughing and making tasteless jokes on his behalf. "You know you are going to die from AIDS, and there is actually no treatment" was the information he got.

Hasan and his wife went to an NGO for testing her, and it was a great relief when she was tested and found HIV negative.

His sister-in-law had told his wife to be careful around Hasan, and that she should try to keep a distance from him when he had fever, and to be careful not to get close to his breath.

HASAN'S health becomes worse. He is sick with fever once or twice a month, and nobody comes to see him during these periods. He has to stay for longer periods in hospital. He notices that his wife does not spend so much time with him as she used to, making all kinds of excuses for going out, leaving him alone in the hospital. The nurses feel sympathy for this man lying there alone for hours and hours everyday. One day his wife just vanishes, divorces him and claims the divorce money.

"- I don't know why she left, Hasan says; she and my family have received so much information about HIV and AIDS and how to live a safe life with an infected person."

Hasan is now registered at Ashar Alo, a NGO in Dhaka. He gets free medication. He has met other people there who are HIV positive or have AIDS. He is also a member of a newly established self-help and support group for people in the same situation. He thinks it is good to meet other infected people, as they understand each other. This group has a credit programme where they are trying to save money in order to start a small business on their own.

"If I die, it is better," he suddenly says, "My family is behaving as if I'm dead. They have taken most of my belongings from me already."

"How do you function now?" I ask him." Can you do most of the things you did before?"

"I think I can work, but I don't have a job, and I have sold my furniture to get money to survive. I can't carry heavy things, I get tired fast, but I can take care of myself in terms of washing, shaving and so on. I take sleeping pills in order to sleep."

I hesitate before I ask the last question. It is getting late, and he must be tired having us around. But he assures us that he is ok, and repeats "I want people to know how it is to live with this disease, maybe if people understand, nobody has to suffer the way I do."

So I ask him what is the worst thing in his situation living with AIDS.

"It is the loneliness" he says, "having all the time in the world to sit and think about what is going to happen to me. It is being excluded from almost everything and feeling that I am being punished by so many people. It is living like an outcast."

"I live in our house as before" he continued, "but in the past I used to feel that I belonged to our neighbourhood. People know me and my family here, and we used to greet each other. But not any longer. Everybody here knows that I have AIDS. That means that I can't do my shopping here. The shopkeepers used to lie and say they were out of the items I needed, or they would refuse to take money from my hand, telling me to put it on the top of the counter."

"The kids in the neighbourhood sometimes run after me and tease me. I want to move away from my family and have kept a "TO LET" sign for months, but nobody wants to rent from a person with AIDS."

"I do my shopping from places far from my house where nobody knows me; I do it late at night when there are fewer children outside to tease me."

"I can't even do my Friday prayers in our local Mosque; I can't stand the staring and whispering."

"Nothing is like before, it will never be. That is the worst for people who are HIV or AIDS infected" he says at last.

To be continued next week

1. Dr. A.Z.M. Zahidur Rahman
Advocacy Adviser, UNAIDS
Article in The Daily Star, Dec 1, 2005
2. Hasan is not his real name.
3. Map Photo Agency, Dhaka is a team of photographers working since 1993 with developing agencies in the field of social documentation and awareness through photography, photo exhibitions, workshops and publication of books.
Special thanks to "Hasan" for being so brave and telling his story, and to Photographer Mahmud at Map Photo Agency for giving me the opportunity to meet people with AIDS.

Copyright (R) thedailystar.net 2006