Uganda diaries: Esther Lalam
This is part of a special IRIN series
Esther Lalam is an HIV-positive primary school teacher who also works as a counsellor at an antiretroviral clinic.
“I left Padibe IDP camp last year on 1 November. I moved to my new home outside the camp where I was renting a room for my family. I bought the plot in 2007 for 1,600,000 Shillings [US$800]. I bought it for my children; it will help them when I die.
The land is 50mx60m. I have built a four-roomed house. It’s a good home with clean sanitation. There is no noise and the environment is good.
I am still teaching at Padibe Boys Primary School. This is my 14th year. I have 19 more years till the retirement age of 60.
My health has been good for the last 20 months. I haven’t fallen sick. I am now used to the drugs and I find it normal to take them every morning. I have put on more weight. I am eating well. I have a balanced diet, take fruit every day and passion fruit juice. I have fruit trees in my compound. I planted mangoes, passion fruits, bananas, oranges. My children grow vegetables in the backyard. My children are happy that my health is okay. They are not worried. They tell me they pray every day so that I live longer.
I can do normal work, working in my garden. I have planted Simsim [sesame], beans and millet. I have planted them in my village where I was displaced during the war. My relatives have moved back there but I am staying in my new home because it’s near the health centre and primary school.
Improved HIV services
There has been a great improvement in services at the clinic in Padibe. HIV-positive people have access to drugs, care and support. Voluntary Counselling and Testing is done regularly.
I am one of the experts in the integrated management of adult illness and doing voluntary work as a counsellor in the ART clinic in Padibe Health Centre IV. I am the only lady taken for the training because I have been open about my status. I was trained in how to manage illness in adults in Lira in 2007. It was organised for HIV-positive clients from Gulu, Kitgum, Pader, Nebbi and Arua by the Child Clinical Research Centre and Northern Uganda Malaria, Aids and Tuberculosis Control Programme.
I know how one can manage illness in adults – it’s pretty simple, follow the medical prescription, take adequate meals, follow a balanced diet, good sanitation and seek medical care regularly.
Teaching children about HIV
I teach children the dangers of HIV/AIDS. I am the vice-chairperson for the Presidential Initiative Strategy and Communication on HIV/AIDS for Youths (PIASY) in Padibe Boys Primary School.
I teach them how HIV/AIDS is transmitted, the dangers of getting involved in early sex, the importance of abstaining from sex when you are young and not ready. I tell the school boys and girls to report to their parents or teacher anybody who tells them to have sex or tries luring them into sex.
I tell them never to trade sex for gifts. The children understand my HIV lessons. They ask a lot of questions. I also tell them never to stigmatise people who are living positively.
The children also debate the dangers of HIV/AIDS; abstinence; how to protect yourself from getting infected. They also recite poems and songs on HIV/AIDS during assembly.
I am working at the ART clinic without pay. There are so many clients. I work during holidays and from Monday to Friday. I also do home visits. This is very hard work because I don’t have transport. I walk everywhere. At times I ride a bicycle to reach clients who are living far away.
I do home visits three times a week. It’s good to visit the clients because you get to know how they are living and if they are adhering to their drugs. They feel very happy when they see me. They say I am doing very good work. One woman confessed that I support her more than her husband.
HIV-positive IDPs who are far away complain that walking the long distance to get drugs is very difficult for them. Some of them walk 22km to get their drugs. There should be a community distribution point for ARVs for people who are deep in the rural areas - maybe this would help.
We’ve had a great change here over the last few months. More people are leaving since the last time we spoke and some are even going to their real original place.
It happened with the harvests. People started not only digging but harvesting, and suddenly they needed to build small huts in which to keep the food. They started sleeping there to look after the food and save time and they grew more comfortable with being out there.
By October they were staying.
The children left the camp in the holidays at the beginning of December and went out to the bush to where their families were, and many stayed. Now some of the displaced schools have started moving back and that will continue in the New Year.
Many of the huts in the camp have been destroyed. People took the tarpaulins, and with no roof, the walls collapsed with the rains.
There are some who still fear going back home, particularly those who live very deep in the bush.
There is some instability - thieves who come to steal, but stealing is more of a problem from bad elements within the camp.
Most of the people who are left in the camp are the elderly, vulnerable and disabled - those who can’t build by themselves. Many of them have relatives who dig the land but come back to look after them, others are worried that they will be left behind and forgotten about when all the able-bodied have gone.
This will be a very special Christmas this year. My second born and fifth born have come back home - my second born has been away for five years before coming back for Christmas.
This is happening to many families for the first time in a long time.
We’ve hung up some Christmas decorations - a bit of glitter to make our home feel festive. At Christmas we will go to church to remember the birth of Christ - we go at midnight. Then on Christmas Day we will feast on meat and drink. There will be alcohol, soda or juice so everyone is happy. Women go and buy a new dress for the occasion but the best thing is being together as a family after such a long time apart.
World AIDS Day
On 1 December we all went to Lagora camp to celebrate World AIDS Day. Volunteers from Meeting Point, the local AIDS support organisation, and other people living with HIV, travelled from across Kitgum and Pader. We did a lot of dancing, a lot of singing, had a lot of fun. It’s a nice opportunity to make new friends from different places who are in a similar situation - also living with HIV/AIDS.
I go out to a lot of new settlement sites with Meeting Point and we do dances and plays explaining to people how HIV/AIDS works.
We explain how people can come back to life if they have ARVs and how they can do normal activities and play a full role in the family again if they get the right love and support.
There are home-based care volunteers all over and they are visiting people across the district deep into the village so even those who have returned home are getting support.
The trouble we are having now is to start new people on ARVs. There are lots of ARVs but not for new people. There is no new registration at the moment.
Also there is little of the special milk that HIV positive mothers can give their babies instead of breast milk to stop passing on the virus. We have been out for three months now. Mothers are very unhappy about it but what can they do? They have to feed their babies.
I’ve been elected vice chairman of people living with HIV/AIDS in Kitgum. We are registering the names and details of everybody living with HIV/AIDS in the area so that the district can help out with things like school fees.
Personally I’m now feeling well again. My CD4 count has bounced back and there is no problem now. I don’t need to worry about not eating fried food. This Christmas I will be able to eat just what I like and have a real feast.
We’ve seen huge changes here in Padibe. Suddenly everyone has started moving out [in August].
People who went home earlier are now harvesting their crops and selling them and others are thinking if they can do it then I can too. In fact lots of people are leaving the camp to help in the harvests and they are all talking about staying and planting their own crops. Most of them have moved to small, new resettlement camps rather than living on their own land. But people are working again and so it’s a big change.
The other factor is that the NGOs have started giving help to those in the countryside. Caritas have started seed fairs, which are popular and people aren’t seeing so much help if they stay in the camps.
People aren’t being pushed. They are making a free choice. It’s very good.
You can go into the camp and you will find children everywhere but their mothers and fathers have left for home.
But I’m not going to move yet. My land is by the camp and I’m teaching here.
My CD4 count
I went to the hospital to get my ARVs at the beginning of the month and everyone was talking about how one of the main local NGOs was planning to drop 200 people from the free food [programme] so that they could give it to those with liver problems.
That is going to be very difficult because people were relying on it and so haven’t planted anything. The problem is with the planning – people need warning of changes like that. They need stability.
I went for a test and my CD4 count is dropping fast. It’s important to have a high count so this is bad news; it means that the virus is getting stronger in my system.
Why is it happening? I don’t drink, I don’t smoke, I haven’t courted any men.
People are complaining about this new ARV drug that is being given out. It’s been introduced because it’s cheaper but the side effects are nasty. One lady lost all the skin on her face and arms. Others have developed sores all over the body.
I was supposed to be changing to it myself but they couldn’t because of my low CD4 count.
I can’t say I’m unhappy about that. People are taking them back and insisting on having their old drugs back again.
So many people have left Padibe main camps [for internally displaced people] and returned to their villages. People are determined to live in their homes, they left the camp and started a new life.
Very few people remain in the camp and most of those are the sick and the vulnerable who cannot build houses. Some people are still living in the satellite camp nearer to their villages.
People living in the village say life is so much better than in the camp because they have good sanitation and enough land to cultivate.
The biggest challenge for returnees is lack of schools, health centres and clean water sources. Most IDPs returning home are still leaving their children behind in the main camp so that they can continue with their education.
Some primary schools are relocating to their original site in village.
We have a positive-living club for the community, made up of people living with the virus. We teach people how to take care of HIV patients, the dangers of stigmatisation, and the advantage of knowing your HIV status.
Patients are praying that an office for the Aids Support Organisation should be established in Kitgum to help assist HIV patients. The number is so high.
I feel there is an improvement in my health. My CD4 count has improved because last year my CD4 count was getting so low. My weight has improved.
I get my ARV drugs from St Joseph Hospital in Kitgum town. Some people living with HIV come from as far as Orom and Namukora, near the Southern Sudan boarder. I can’t estimate the number of people missing out on ARV drugs but there are many. Some people are getting their drugs from Kitgum hospital while others get them from health units in villages but these are people who registered several years ago.
Last week I went for training on the integrated management of adult and adolescent illness for people living with HIV/Aids. This is a programme for managing HIV patients under treatment. Next week I am going to train community health workers in Padibe on how to handle HIV patients.
People are enjoying peace but there are some isolated cases of armed robberies.
Home is a very important idea for us Acholi. It isn’t just somewhere you grow up, it isn’t just the place where you’re living – it’s the place where all your ancestors are buried.
I was actually born in Kitgum town because my father was working there as a teacher and I didn’t visit the village until I was seven but that didn’t stop me knowing that the village was ‘home’.
I’d hear all the stories from my parents about Loi Bide. It means ‘Let them talk, people will get tired’. Just two words in Acholi – it’s a very efficient language.
Visitors would come carrying fruit from the village and lots of milk. But whatever people brought would never be enough and I wanted to take all the food from the source.
It didn’t disappoint. We had cattle, we had land and it was so fertile. We’d never go hungry. We had one of the big houses in the village and we had so many relatives around so I was never lonely. Now many of them have died, with the war, illness.
Those who have died recently we haven’t been able to bury at home. But most of my relatives are buried there.
Some people will bury [their dead] under a tree but we buried ours in the compound, next to the huts. You feel their presence. We believe that the spirits are still alive.
Every year in November we would have a prayer for the ancestors. My sisters come all the way up from Jinja and Kampala. It’s called nipo – ‘remembrance’ in Acholi.
We prepare lots of food, slaughtering cows and chickens.
The small children might not know who their ancestors are, they might not know their history but on that day all the children learn and find out just who their grandfather is, where they come from.
My nickname is Amot, the same as my grandmother, and that is what my family know me as. One day when my grandmother was old she pulled me to her and said that I should carry her name. It was a real honour for me because we were very close. It’s very sad that I have been kept away from her and my other ancestors because of the war.
We haven’t been able to do nipo for a long time - five years. Now this year I hope that we can all get together again. If there is still peace we will have a really big feast.
The village is close enough, just 1.5km away, and so I’ve been going to dig again since April but I haven’t moved back. Not many people have.
Some have built small huts on their land – they have one leg in the camp and the other in the village. The grass won’t be good to build huts until October and November, by which time we hope there will be some change with the peace talks in Juba.
For now people are still very fearful. In my village there are only two people out of perhaps 800 that have gone back.
People won’t really believe in the peace until they see [LRA leader Joseph] Kony and [deputy Vincent] Otti return. You have to understand what people have been through, why they are still so suspicious of the peace process.
How I came to Padibe
We came late to the camp. We saw others were leaving but we weren’t interested in coming, we hadn’t experienced trouble. But when others left the rebels started to cause trouble for us, stealing our crops. And then one day we saw our neighbour, a boy of 14, running as fast as he could and we knew something was very wrong.
We started to run but we were too slow, by then it was too late. They surrounded us and forced us down on the ground at gunpoint.
They took my eldest brother Milton along with two of my cousins. My brother came back but they killed one of my cousins – he couldn’t carry the heavy load they gave him and he was beaten so seriously that he didn’t even reach [South] Sudan.
After that we decided to come to the camp but for those who came late there was no space and so we stayed near the road. The landowner wouldn’t even let us put up a hut.
We stayed like that on the grass for the months before the Red Cross lent us a tent.
It was very difficult. We just had nothing. Nothing to live under, nothing to cook with. Nothing. But we couldn’t risk going back home.
Sometimes we’d eat just once in two days. There was no food and there was no laughter. You’d just sit and look at each other.
You couldn’t sleep properly because you’d hear the bombs and the guns going off.
The soldiers were still very few – not enough to protect us. So we’d often go and run from the camp and sleep in the bush.
And if they got you they would cut off your ears, your mouth or arms so people started moving again all the way into the town.
But in the town there was no water, no shelter, no food. So we started to move back again – at least you could eat the pawpaw from the tree and the World Food Programme started to register people.
I teach classes P2, P3 and P4 at Padibe Boy’s school. It’s called a boy’s school but it’s actually mixed and my pupils are of all ages.
I have 240 pupils in one of my classes. It is really very difficult to teach a class that big. Really very, very difficult.
Imagine how long it takes to mark the books from just one exercise! They can even fight when you are in the class – they can be so stubborn.
You cannot move in the classroom because they are just so packed in.
We try very hard as teachers but a lot of the time I don’t really think they get an education.
The quick learners learn but the slow learners are just there to sit. Everything floats over them. In real teaching you have to move around and look over their shoulders and assist those who don’t understand but in a class of that size, what can you do?
And with the birth-rate as it is in the camps we are only getting more and more children to teach.
There are supposed to be three schools in Padibe but with the war 13 schools have been moved into the camp from the surrounding villages and many of them have to share buildings with each other.
Still, things are far better than they were. When I became a teacher in 1995 there was nowhere for me to teach. I was posted to a village in the bush but the children were scattered everywhere. The school was a rebel dormitory.
I think with peace and stability we will have the foundations for a good school system but there is a long way to go.
Education is the key to our recovery – it’s especially important for my four children as it gives them a way to stand on their own feet when I’m not here.
My husband stayed with a nurse and she died. So I thought the worst and when I was giving birth to my last child I bled for two days. I knew there was something wrong, I was so weak.
And so I went for a test. Of course I was positive. My husband refused [a test] and died a short time later.
I was so weak. I could not walk much, not even in the school where I was teaching. I explained to the head-mistress after coming from the hospital. She was very understanding and reduced my workload so that I was just teaching 40 minutes a day for three years.
For three years it was getting really bad. I had so many complications like malaria and coughing. I was taken to hospital all the time. I thought I was dying and I told my mother, ‘I feel I’m so weak I will not be with you or the children for long’.
But in 2003 I started an anti-retroviral programme from the hospital in Kitgum town. People had tried to dissuade me, talking about the side effects, saying it would kill me but I found my courage. What did I have to lose?
My mother came to the clinic with me and had a lesson on how to help me through the difficult times. The night after I started I was in such a lot of pain I could barely breathe. My mother stayed with me and said if they kill you, let me die too. But after two weeks I started eating little by little. I started walking after one month. And in two months I was working again. It was really miraculous.
Though I am HIV positive now I feel as other people feel. I now have a real hope of living – more than I ever thought possible before.
Now I’m growing groundnuts and cassava and good food is something very important for people on ARVs with HIV.
I never thought that I would have a chance to dig my fields again but with the drugs and the peace it’s like I have my life back.
They’ve just started to distribute ARVs at the local health centre.
Those who are getting the ARVs are still returning to the resettlement sites; it just means that you go for one day to the health centre.
Most of the clients who need ARVs get them. People aren’t complaining that they are missing them.
But what would I say to the Health Minister if he was here? People who are getting ARVs are very discouraged when they hear there are problems of supplies and we hear that a lot. The drugs from the government are at risk of running out. But we need consistency, we need to know we can rely on the supply because for us it’s a matter of life and death. Without them we have no hope for life.
[This is part of a special IRIN series: Uganda Diaries, in which a selection of ordinary people in northern Uganda talk about their lives in their own words. The "diaries" were gathered over several interviews in Uganda starting from July 2007. Each individual's diary will be updated from time to time over the coming weeks.
Visit Living with the LRA - IRIN's rolling in-depth coverage of the stuation in northern Uganda and southern Sudan.]