I had been with the younger girls' father for
about five years when I was hit with tuberculosis. I went to the doctor who -
after doing some general tests - asked my permission to do the HIV test. At the
next appointment, they had the results and I was positive. It's been three
years now since I found out I was HIV positive. Two months later we did the test on Marbella, who was five years old. Her results also came out positive. I felt as though the world had ended, I felt as though I had died. A few months later, I spoke to the children. I knew I was going to die and knew my children had to know that I was going to die. I got them all together and told them, except for one, Bryan. My twelve year old still doesn't know. I had terrible depression.My doctor at the time helped me get over the depression. I was asking him for an injection to end my problems, to end my life, and he said to me 'But you have your children?' and I said 'Yes I have my children'. 'Well think about them' he told me 'You have to finish bringing up your children.' The doctor had a children's project and asked me to help give them classes. The project was for children infected and affected. They gave me training and then I started working with them.We were also doing home visits to the parents of the children and I started coming out of my critical depression. I thought I was going to die soon and that I was going to leave my children as orphans. But I learnt to think differently, that I was going to bring my children up and help others. The doctor also invited me to the self-help group, which he had formed about three years previously. He said my group was called 'Together for Life' and invited me to join so that I was with people who live with the same problem and who understand and can help us feel better about things. I joined and now, thanks to the group I've had the opportunity to learn much more, so that I can help other people with HIV, so that I can live better with my children and to have the strength to push ahead. “Edwin,my 14 year old, reacted badly and left home to live on the streets. This has really hurt me. … he said that as I was going to die, he was going to learn how to defend himself on the streets.”He wanted to learn to survive, despite how much I told him, 'No son, you don't have to do this.' At the time Brian was away with his grandmother. He's the most sensitive one of the lot and I don't want him to get depressed for me. He still doesn't know, he knows I am involved in HIV but he thinks I'm a volunteer. After that I started on my treatment thanks to the doctor who, after a big fight, managed to get ARVs for us. I was one of the first of 84 patients that the doctor managed to get medicines for. Since that moment I started to see life differently and thought more about my son and how the psychologist could help, so the doctor said: 'I'm going to make you and your son an appointment with the psychologist to make him understand that we are all going to die one day and that although you're HIV positive you're not going to die now. You have the medicines and as long as you know how to administer them properly nothing is going to happen to you.' So I started learning how to administer the medicines properly; learnt about nutrition; everything I could find out about how to live with this illness. But then the doctor was killed. In his surgery. It's said that two men went in and shot him in the consultancy room. That was on 11 April 2003. I had been with the doctor a whole year and I felt as if my hand had been cut off when they killed him. No one ever found out who killed him. He didn't know he had enemies. He was an excellent person; a gentleman who didn't hurt people, he helped them. He got me ahead both physically and spiritually and also psychologically. He helped me so much. I felt like my arm had been cut off, like I was going to die as well. The group fell apart as well, but from there we had to tell ourselves that the doctor wouldn't have wanted the group to fall apart; he'd have wanted to see us staying together. We had lots of problems trying to continue working with the doctor's children's projects: they tried to close us down. They took away the children's food and didn't pay us. But we later got other support and continued. Edwin is here living with me. But he still thinks the same, that one day the treatment will stop working and I'll die suddenly. The critical thing for me is when I fall ill, when I'm in bed. Whilst I'm healthy things are fine, I'm busy, I can feed the children and I don't think about things too much, except for Marbella. I think too much about her too: that she's going to die. I've spent months crying - for her not for me. You know, I've lived my life, but her, she's just beginning her life. Last year I didn't want to send Marbella to school, but I thought about it and now I realise that if she studies, she can also value herself like I now value myself. So far Joany is testing negative.We've just done a test with the Red Cross and she was negative. In the hospital the three month test also came out negative but it won't be until she's two years old that we'll know for sure that she's negative. I've never breastfed her. She has powdered milk. I was monitored during the pregnancy. They gave me some tablets - I've forgotten what they're called - but they were to protect her. At 32 weeks of pregnancy you start taking the tablet every day. Then for a month after she's born she takes liquid. Now she's taking preventative medicine but she's been vomiting so the doctor said to stop, so I just give it to her now and again. It's a good guard against any type of illness, fever. Marbella takes medicines.We have to pay for tests and medications: 50 lempiras each (30p) for me and her every month. Sometimes it's a bit more. Marbella is 7 years old. She is HIV positive. She likes school a lot and wants to study so as to read and write. In the future she wants to get a degree in law so she can defend the rights of people like her and her mum. Above all ASONPAPVSIDAH give us training and supports our self-help groups. For me all the training we've received on HIV/AIDS was important - nutrition, administration of medicines, advice and counselling, learning our rights: everything that will help us defend ourselves. I'm very grateful to them and to my self help group and my colleagues who I adore. I was at Casa Aurora for a year with Marbella. But as time is limited, I spend most of my time in my group and working as a facilitator. I'm also on the board of ASONAPVSIDAH. There are eleven on the board: I'm the director. Two of us - me and Oscar the Secretary - are from the self help group “Together for Life”. ASONAPVSIDAH was born out of all the groups: it's like the mother of all the groups across Honduras. “People in the group don't have anyone to rely on. We use the money to help each other so we have a fund: if someone is ill, we can go and help them. If someone wants to come to the group but can't afford the bus, then we'll pay for them to come.” Some of the other groups have support from churches or other groups but we don't. We are completely self-sufficient. ASONAPVSIDAH takes charge of the workshops, and once we're trained then we can train others. It's a great union . We're self sustainable.We make and sell sandwiches and pickled vegetables to pay the rent for our room. There's a restaurant below and we rent the room above. It's owned by the father of Dr Trejo. It was the surgery before it became a restaurant:We also rent the room out to other groups for training or meetings.We have about 57 people in the group, just adults. Luis is a member of the group. (Luis is HIV negative as the groups are open to people infected and affected by HIV).We meet every Saturday at 2pm until about 5pm or later if we're doing things. I learnt to manage and to understand how important it is to take the medicines at the right time - one you take after eating, another with lots of water and the other you take when you're going to sleep. I also learnt about the risks you run if you don't take it properly. I learnt to manage it but above all I was interested in learning how my daughter should take her medicines. Also I learnt about how the virus can become resistant to some of the medicines if you stop taking it, if you take it today but not tomorrow. We also learnt about nutrition; about what types of food we should eat; about the vitamins our bodies need... I learnt to cook more vegetables and eat more fruit. I didn't use to bother with fruit, but I have learnt to eat it now. And fruit is nutritious. It seems insignificant, how much fruit really helps maintain our health. I've also learnt how to act around others, how to support and talk to people when they are desperate. My neighbours don't know of our HIV. They are very gossipy. I don't tell them because of discrimination. I'm afraid that they will talk about me and that they will tease my daughter. The woman whose baby my older daughter looks after doesn't know.We can't tell her because people are scared of us, as they don't have the correct information about how HIV is spread. There is a self help group here but it's too close to home so I go to the centre for my group. If I went here, then people would find out and discriminate against us. I have been living here seven years. I'm lucky:my landlord knows and is sympathetic.My rent costs 450 lempiras (£13.65) a month.We can't get work in factories or with the big companies.We'd have to do the test and then what are they going to say? They think we'll have lots of time off, that we'll infect others, that we're inefficient. We know about the law but we'd just suffer more discrimination if we put in a complaint.We know our rights, but how do we implement them? The children when they're at school, they don't talk to their friends about it. They know that me and Marbella have it, but they know not to tell anyone. I used to help an evangelist group and they helped me pay for the medicines, when I was ill in bed, so they helped me. But one day I saw one of the children of the Sisters talking to my daughter, and Marbella was crying. The girl said,“Neither me nor my mum have AIDS, but you and your mum do”. The girl was about 10 years old. Marbella was crying and said to the girl “I don't have AIDS: what I have is a virus in the blood.” When I went over to see what was wrong, I said to the girl “You don't know whether I have HIV, why are you saying this? And if we have what's it to do with you? I'm going to talk to your mother and the Sister and see what they think about what you're saying.” In the school, no one says anything. The teacher knows my daughter's problem, so when it's raining I don't have to send Marbella. I would prefer it if she got there late or came home late rather than get covered in water - which could kill her. Her teacher last year was good: she understood and made sure that things were fine. I can't ensure that no one hurts her. But the teacher knows in case she falls over and is bleeding to make sure that she can't infect the other children. She can go to the bathroom to look after herself but the bathroom needs to be clean because any bacteria can kill her. The teacher is in agreement and doesn't let anyone else know so that she can't be picked on. I have one sister who I haven't told. She knows the work I do and she tells me I should me more careful with those AIDS people. I've never thought about telling her: at best she would pity me. I'm scared of her attitude: I think I'll die before telling her. My other brothers and sisters know, but they are poor so can't really help me. One of them has ulcers and they have big families. I look after one of my nieces after my brother died.My mother was killed fifteen years ago. A man who was HIV positive killed her with a machete. He raped and killed her. He died in the prison. He'd killed 24 women. The declaration he gave said if he loved a woman and she wouldn't give him love, he'd take it.What I'm praying for is that my baby is 100% negative. And for the future - before I die - I want to own my house, so that I can leave it to my children. That's something that seems a long way off, but I don't lose hope that one day I'll be able to buy a house for my children before I die. That's my greatest wish. The message that I would give, as a person living with HIV, is to carry on, think ahead and that life continues.With your medication, there is hope that one day a cure might be invented, but carry on with your medication, make sure you learn all about HIV, about how to look after yourself, learn to accept the illness and learn to live more than anything with the problem. |
