11 - Jun - 2008
How and when did you meet DREAM?
I met DREAM in August 2005, after taking an HIV test and getting a positive result.
I felt fine really. At the time, it was my husband who was seriously ill. I tried to push him to see a doctor, I encouraged him, telling him how important it was that he get treatment. But he didn’t want to, he was scared. So I decided to take the first step myself, to take matters into my hands, because I loved my husband’s life. I did it to help him. It was a way of making him understand that he could find out about the state of his health, that it wasn’t too complicated, it wasn’t a problem.
And instead that check-up was a shock for me, a terrible trial. I was HIV-positive, I had AIDS. I would be dead soon. After the check-up and the test, the only thing I could think was: “This is the end of my life!”
I informed my husband that I was HIV-positive. It wasn’t easy for me at all, nor did it prompt him to go to see a doctor himself, although he really was very ill. On the contrary, understandably, it made him even more afraid. But I didn’t lose heart, I didn’t give up. I continued to encourage him and to insist. I informed myself a bit, here and there, and so I told him some stories of people with AIDS, who had started a treatment and who were better.
Finally my husband accepted to go to do the test. I accompanied him for the appointment and I was with him when they told him he was HIV-positive. Poor man, he was desperate!
A very difficult period of our life started then. Problems of health, financial problems…
My husband was sick and we had to find money to get the antiretroviral treatment from the state hospital, medicine costing 2500 Malawian kwacha [11.50 euro as per the current exchange rate]. We did our best to save my husband’s life, but it wasn’t easy, even more so because at the same time, they told me that I had to stop breastfeeding my daughter immediately (in fact I had a girl, who was not even a year old, and I was breastfeeding her). For me, this was all extremely difficult. What could I give the baby to eat? All the meagre money we scrimped and saved, served to buy medicine for my husband.
It was at this time that one of the doctors at the state hospital told me about DREAM. I had screwed up courage and explained my, our, situation to him: the fact that we couldn’t make it, that we needed to be helped. Then he showed me the way to the DREAM centre.
What struck you about DREAM?
First of all, I was welcomed very warmly. It didn’t seem like a hospital to me there! This was both, so to speak, from the outside, the actual structure, and because of the people I met that day, in that centre. They were special somehow, people who declared they were ready to help me in anything I needed for my health.
I was registered and appointments for blood tests and medical check-ups were fixed for me. Then I started to take antiretroviral treatment too, which my husband had already started doing.
Then I found I was no longer afraid of appointments, of medical check-ups. Meeting doctors, nurses, patients, all well-disposed towards me, I started to feel encouraged, to be more serene. I started thinking that the fact that I was HIV-positive didn’t really mean a death sentence in itself. I realised more and more that if we received the proper treatment, all we people with AIDS could still have a life ahead of us.
As soon as I started taking the treatment – or, rather, after a few weeks – I saw a big change in myself. Before I was totally unable to work, I couldn’t even do the housework. Everything made me tired and seemed to be a big bother: I was tired day and night. The medicine restored my strength; it gave me back the energy to do what I needed to. But it also, I should add, restored my confidence in myself and in my capabilities.
So, when my daughter did the test too and turned out to be HIV-positive, I was worried about her – that’s obvious, only natural – and I was worried to learn that now all the members of the family were sick. But at the same time, I did not feel desperate. I had gone for counselling and so I knew that something could be done, that this was not the end.
My daughter was really very sick but in her case too, as soon as she started the treatment, she began to get better, to play and to grow normally. There was no comparison to how she had been in the past.
I would also like to add – coming back to myself – that the enormous change I noticed in myself, compared to the past, wasn’t just me, a personal thing. It could be seen from the outside too. People no longer recognised me, compared to previously, and they admired – I could almost say – the spectacle of my transformation, the fact that I was better. That is, not only the fact that I was better…. they admired the fact that I could climb out of the abyss into which I had fallen, that my recovery was profound to the extent that I was able to turn to others with words of hope, encouragement and strength.
What is it that DREAM has done for you?
I would simply say that DREAM lifted me out of nothingness and has brought me to where I am today, to what I am now. Actually, I had a simple but extraordinary experience, a fundamental one: I went from the nothingness of death to the fullness of life, life for me and for others.
It’s as if DREAM fought for me, so that all this would happen, so that life would start coursing within me once again. DREAM gave me back life, it restored my hope, it gave me all the courage a person needs. Or at least, the courage I was seeking, the courage which I had never received as yet, but which I discovered I had, even if I was – and still am – an HIV-positive person and as such marked by vulnerability.
It is my entire life that has changed because of the DREAM programme. And it is thanks to this change that yesterday I was an activist and today I am a coordinator.
What is the importance of activists within DREAM?
The activists fill a very important role in the programme.
They are the eyes and ears of our centres, but also the legs and hands of our patients. They are the people who can best pick up the problems and the requests of those who turn to our centres, because they are in close contact with the patients. And, at the same time, they are the means through which the same patients may keep in continuous contact with DREAM. If at some point that contact is disrupted, the activists undertake to re-establish it, going to search for those who no longer come, going to seek out those who are experiencing concrete difficulties, going to explain better what is not entirely clear.
This is the meaning of the work of health education undertaken by all our activists, in the centres, in people’s homes, during counselling at Mthengo, and in villages in surrounding rural areas. The activists are serving the patients when they teach them something, when they enable them to learn more about their health, about the medicine they are taking, and the appointments they should keep.
In reality, health education is one of the things that changes the life of people, and hence of our patients, most of all. Many people cannot even imagine how influential – for better and for worse – personal hygiene and nutritional choices are in the life of each one of us. Many people are unaware that it’s possible to improve their diet or the conditions of cleanliness of their home, and above all, they do not know that all this can be decisive, in a positive way, for their life. Well, all this is explained – by the activists – when patients are welcomed into the DREAM programme or while they are waiting at the centre. And this makes all the difference for very many people. By conducting health education, we have discovered that we can win the interest, respect and affection of many patients.
What does it mean to be a DREAM activist?
Being a DREAM activist means bearing witness to others, of what you have lived, of what you have seen. This is the main difference between someone who is a DREAM activist and someone who is just a DREAM patient.
When you bear witness and your testimony is effective, a patient can really start to believe that there is a future, for him or for her. He/she can start to have faith in the fact that if he/she starts the treatment, everything will be alright.
It should be said, on the other hand, that the testimony we give is aimed not only at patients. It is aimed at involving people out there too, those who are not infected, so that they may change their views about those who are HIV-positive.
I believe that we should stand up more. We should bear witness in a loud voice to what we hold within, to what we have received, to what we have understood. We should unequivocally take the first step, to be the first, before anyone else, so that others too will be able to take a step towards us.
What are the biggest difficulties facing those working as activists?
Here in Malawi, traditional beliefs persist in villages, in rural areas. Unfortunately, for example, there are people who are accused of witchcraft. This is the first and the biggest problem.
Many people need to be educated specifically about what being HIV-positive means, and what AIDS is. They don’t believe there is an HIV virus. They think people can be “cursed” by someone else, that there is a “witchcraft” that can make you sick, that this can happen when someone wishes you ill or wants to take advantage of your death to the extent that he convinces or pays a “witch” to strike you. So in a village, if someone is sick, people don’t think he may be infected in some way, but that others were envious of him, or that they think they can seize his assets once he dies.
The first consequence of such ignorance of the true causes of disease means that for treatment, instead of going to hospital, people go to a “traditional doctor”. They go to someone who will help them get better – that’s what they think – by using methods like those employed by the “witches”, to counter them. This is a very widespread practice, much more so because the “healers” are found in every village and hospitals are not; and much more so because traditional medicine costs much less than pharmaceutical drugs.
This practice, however, creates enormous difficulties for those seeking to press ahead with the struggle against AIDS – like us in the DREAM centres, for example – because it means that not a few patients come to health centres, and to us at DREAM, only when they are already experiencing extreme problems, when they are really very, very ill. Often, in the village, the option of visiting the nearest health centre is considered to be the last resort, the alternative tried only after all other paths have turned out to be dead ends.
What can be done for this world of villages?
A lot, without doubt. And we are taking up this challenge.
To counter all these problems of culture and mentality, which I have just referred to, we are carrying out a widespread health education campaign, especially in villages near the DREAM centre of Mthengo. In Mpote village, for example, where we organised proper “conferences” in the open air, in collaboration with the village leader, to explain to people what is known about HIV and how one can get infected, but also to let them know that it is possible to get better if people look to get treatment.
I believe these lessons have produced important results. After conducting much health education, we observe with joy that an ever increasing number of people are coming from villages to get tested, to find out their state of health. Before our lessons, it was quite rare for someone to come to us spontaneously. DREAM has saved many lives. Now the villagers are starting to understand, to realise. Beliefs in “witchcraft” are losing ground, and many are having faith in what can really save them.
What kind of health education do you undertake at DREAM?
Health education that involves the patients. What we are concerned with is involving the patients.
To this end, during the health education sessions, patients can intervene, discuss. Ours is a work group where patients can contribute their doubts, their concerns and their problems. What is of interest to us is that they tell us what they are feeling, what they are thinking… for example, what are those things that should be improved, or to be precise, if they have problems to come to the centre, if they are still facing discrimination in their village. What’s more, our health education is not abstract. If we see that some patients are not very interested, that they are getting distracted… well then, we change the topic scheduled for discussion for the day, because we must be sure that we make one and all want to listen. Or else we change our approach, our way of reaching these patients. Our aim is that the patients understand exactly what it is that we are trying to explain to them.
Definitely our objective – as DREAM – is not just to treat those who are sick. We want to win over the patients, to gain their attention, their life, to make them get involved and to involve them in a shared hope and work.
So this is more than just health education?
I always tell the activists with whom I work that their main efforts must go towards building a strong friendship with the patients they know, because for us, they are something more than just sick people needing support and treatment, they are friends!
Our patients must be able to put all their trust in the activists. They must be able to know that if they tell an activist something, she will keep the secret no matter what. They must be able to count on her – or on him – in any situation. They must feel that this person can give them hope, that he/she can give them all the courage they need, that he/she can sustain them in times of need. This is why the first thing to be done is to build a stronger friendship.
Thanks to such friendship, many patients end up by seeing their being treated in a DREAM centre in a very different way. They understand that beyond the medication, they have found a family; they have found friends to talk to, mothers, brothers, sisters. They understand that they have found someone with whom they can search together for the answers and solutions to their questions and difficulties. Together.
Being together is a characteristic of DREAM: together with sick people… together with the activists. How was the “I DREAM” movement of activists born, and what is it?
The movement was born as “Women for DREAM”. It was born from listening to patients, especially women, emerging as an answer to their need to be together, to support each other. It was born from listening to their opinions, their considerations, seeking to draw their points of view on different matters, and then trying to meet those same needs which came up.
At first, we had a large number of women joining, and only a few men, but with time, we saw an improvement, namely a growth in the presence of men, and now many men are members of the movement.
I believe that this is a very important fact. It is a sign that people are starting to understand what the movement really is about, they are starting to see its usefulness and its fruits.
But how do you work concretely?
First and foremost, we work very much in villages. Someone from “I DREAM” asks village leaders for permission to talk to people gathered together in assembly. Permission is given and it is from here, from these meetings, that everything is born. A particular relationship is born, established between DREAM and its activists on the one hand, and a given village and its people with HIV on the other.
Many have said they were touched and encouraged by the meetings that we organised. This is good reason for us to be proud and without doubt an enormous responsibility – because we have patients coming from around 50 villages – but, I would like to add, it is also an extraordinary opportunity. If we have a dozen patients in a village, well then, we can understand much better the reality of that village, we can get to know more about its dynamics and its difficulties, especially the dynamics and difficulties of HIV-positive people in that given reality. All this, in its turn, allows us to be able to intervene more efficiently to improve the situation, to change established attitudes or mentalities, specifically to give concrete support to people, to those who are infected.
This is because it is not only a matter of doing counselling but also and especially, of providing support when someone is sick. If there is a DREAM network in a given village, we get to know quickly if there is a certain patient who is unwell in that particular place, and so we can help him/her.
The beautiful thing is that it is the patients themselves who put in motion the process to help other patients. Then again, we have seen how our patients always want to be involved in what DREAM does. Whenever some initiative is taking place, they want to be informed and to participate, as happened, for example, on 1 December, when World AIDS Day was celebrated. A very large number of our people with HIV have let us understand, and they tell us so directly, that they want to be with us, to work with us. They don’t want just to receive news, in a passive way, from the government, they want to take part. If for example, someone from DREAM comes from abroad, from Europe, to visit our centre, many patients offer to take part in the welcome arrangements, to organise everything. What I want to say is that our people with HIV don’t just want to be told that someone is coming from abroad; they want to be concretely involved.
For them, all this means living a personal witness, it means showing their gratitude for the support that DREAM has given to all of us!
I imagine that your work is a source of great satisfaction, given that you come directly in touch with all these results…
Our work is really a bundle of good news today already, but also, I would say, in the perspective of tomorrow. Now we are seeing and touching some results, but we can discern others for the future too…
The activists of DREAM work to change the future. The men and women whom we know, call into question the traditional way of perceiving gender differences, because they get involved in the same manner, men and women, they show that they are equally interested and committed. They call into question, in a way I believe to be revolutionary, the usual resigned and acquiescent attitude to life, because they are ready to take steps themselves. And they make their village in its entirety take steps ahead, by being the first to change their own mentality and thus bringing about change, slowly, slowly, in the traditional mentality that is inhaled in the villages.
It is from this point of view that many of the men and women of the Movement have said they are ready to take on more responsibility, to take DREAM more to their villages, as well as to bring their villages more towards DREAM.
Above all, they do so by witnessing to all that the Community of Sant’Egidio is doing for them. Because many of these patients came here to Mthengo when they were really ill, and today, after have been given all the treatment and support that they needed, they are very well. They want to communicate all this to everyone they meet.
Do you have any story to share with us?
I can give the example of an activist, Veronica, who used to come here from her village on her bicycle, for treatment. She is a woman who used to come from really far, from more than 25km away [the story of Veronica is also alluded to in the video “Viva l’Africa viva” (“Long live the living Africa”) on the homepage of the DREAM site].
Well, after we saw that Veronica was among the most faithful members of the programme, that she was very scrupulous regarding the treatment, that she never missed her appointments, we talked to her, asking if it would be possible for her to use her bicycle to take care of other patients too, and to save their lives as well. Veronica was enthusiastic about the proposal, which allowed her to make herself useful, to live her gratitude concretely, and to be close to many people who face the problem of being too far away from our centre of Mthengo…
Another of the activists who I could tell you about is Alice Mogumu. After seeing how she took care of her newly born daughter really very well, we thought that she could be particularly well suited to encouraging other women to look after their newly born babies, that is to say, to teach them how to wean their babies better.
Today Alice is an example for many women belonging to our programme. Her daughter did a test and she is one of many babies who turned out to be negative. Her previous child is a source of courage for pregnant women, showing that it is possible to have an HIV-negative son. The authority of Alice comes not from her age – she is one of the youngest activists we have – but from the fact that she wants to commit herself seriously to saving lives. This is what makes her so brave and precious, what makes her a bridge of hope between the patients and us.
What work is undertaken by DREAM centres as regards mother-to-child prevention?
Since 2004-2005, when the DREAM programme started in Malawi, we have been insisting on the fact that an HIV-positive, pregnant woman can give birth to an HIV-negative child, as long as she starts therapy immediately.
But even if we have always said this, even if we have always insisted on it a good deal, at first, it wasn’t easy to convince the pregnant women who we met. There was no evidence to back what we were saying: no child, until then, had taken a test and turned out to be negative.
The first big step forward occurred when a handful of women started to trust. Their trust prompted them to take antiretroviral therapy properly, to breastfeed their children until they were six months old, as they had been told to do, and then to stop. All the pregnant women, who followed the prescriptions of the doctors to the letter, had perfectly healthy children.
These children gave us the example that we needed. Thanks to them, to the fact that they are well, we can tell other women, who are really desperate at times, that if they take properly all the medicines assigned to them, morning and evening, their child won’t have any problems.
What does all this bring to your mind now, looking not only at today, but also at the future of DREAM?
The future of DREAM – as I see it – lies in becoming ever more deeply rooted in and covering all of Malawi, in opening centres in many villages, so that more people like Pacem, Veronica, Alice, will be able to have access to hope and to therapy. This, after all, is the commitment that DREAM is already carrying out as we speak.
But now, discussing the present and future of DREAM, and its past too, starting from the fact that we were talking about mother-child prevention, I was remembering that some days ago, we organised a party to celebrate together because a group of babies tested negative for HIV.
For many women, this was a very beautiful day, the proof that they had done well to start therapy, a prize for their trust and their courage (because still today, unfortunately, some women opt to leave, they do not accept to start treatment). This party was a celebration of the victory of trust. Many women would have said to themselves: “I really fought hard, I did my best to save the life of my child, and he/she actually didn’t get the virus, he/she is free!” There is a beautiful, absolute power of truth, in this trust, in this joy.
And then I think of myself, the mother of a girl of who is HIV-positive. A few years ago, it was really bad for me. But the other day, I celebrated with joy together with my friends, because their children tested negative. When I was pregnant, there weren’t the opportunities that there are today, the DREAM programme wasn’t so entrenched yet… But now that the DREAM programme is here, we must fight for many women and for many children, for their lives.
After all, DREAM is a guarantee of life even for our HIV-positive children, because they are treated, they receive therapy and decent care. Thanks to the Community of Sant’Egidio, we know that our children will have a future, that there is as yet life for them; that for them everything is possible.
And so it’s the same, we must celebrate the children who tested negative and those who, although they are positive, enjoy life and good health. And we must be aware of two things: of the strength of many women, because they have really done so much for their children, and of the power of the love of DREAM, because our work has really improved and we can say that we have attained great successes.
When I see patients who are very ill, or really desperate, what comes to mind is the beginning, when I too turned up, very sick, for a medical appointment at the DREAM centre. And so what I can wish for these patients – with considerable understanding, with great sincerity – is that they may become as I am today. And as for the suffering and the despair that they are experiencing, I wish for them that it may disappear, so that, as we are celebrating and tasting the good fruit of DREAM, the same may happen to them too. That we may enjoy the fruits, all together, because DREAM has truly taken on our lives, it has given us much.
So may all those who are sick rise up and bear witness, and struggle for others. Because I don’t see the reason why many in Malawi should die when there is treatment available, when they have the opportunity to have more care. Thus, all that I know is that we can and we must fight for them.