Mulago Positive Women’s Network

Agnes Nyamayarwo

Agnes Nyamayarwo is the facilitator and founding member of the MPWN and a leader in the fight against AIDS in Africa. She is also a Board member of TASO (The AIDS Support Organization) of Uganda – one of the first African-initiated HIV/AIDS organizations (established in 1987) and still regarded as one of the foremost HIV/AIDS organizations throughout Africa.

Agnes is also a spokesperson for ONE, the campaign to make extreme poverty history. In her own words, Agnes tells about her life and her hopes for the future for herself and for all those in Africa who daily struggle with the issues of HIV/AIDS and extreme poverty in their lives.

HEALING AFTER THE DEATH OF MY HUSBAND AND CHILD.

After burying her child and her husband, how does she begin to put back the pieces of her life again? What gives her the motivation to get up and go through the mourning? How does she go on living when every fibre of her body rejects the idea? What inspires her to reweave life’s tapestry and find ways to lead a meaningful existence again? Only walking her grief-journey will give her these answers and help her to put the pieces of her life back together.

On 27th June 1992, I lost my beloved husband Augustine to AIDS.

On 5th July 1993, Charles, my 17 year old son disappeared from me after being stigmatized and traumatized by his friends at school over the loss of his father to AIDS. To this day, I have never seen or heard from Charles again and I don’t know whether he is still alive.

On 9th March 1995, my youngest son Christopher died of AIDS. Nursing Chris through almost two years of sickness and pain prior to his death is one of the hardest and most painful experiences I have had to go through in my life. Through all the time of his sickness, I was consumed by guilt knowing that my son was innocent and that he was suffering for no good reason other than the fact that I had unknowingly infected him with the HIV prior to or during his birth.

I cannot begin to explain the excruciating pain that gripped my heart like a vice during those long hours, days, weeks and months prior to his death. Looking at his deteriorating condition everyday, tears would just flow from my eyes — and it is then that he would say, .Mum, why are you crying? Don’t cry I will be ok.

His innocent face and words have always remained with me and filled many of my waking hours. His innocence and the determination in his eyes to get better always return to haunt me, for I knew even then that without the proper medication he needed, Chris was fighting a losing battle. So I lost Chris and my husband Augustine to AIDS and I was not sure that I would ever see my son Charles again.

It is during that dark and bleak period of my life that I would sit alone in my bedroom and ask myself, .Where do I begin? I thanked God for my remaining children but the only question on my mind was how long I was going to live and care for them. Since I had also tested HIV positive, I wanted my children to continue with their education but where was I ever going to get the resources to support all my remaining eight children?

Some people had already starting distancing themselves from us. It was indeed a terrifying experience, trying to imagine how I and my children would continue living with the Stigma around us. I learned my first lesson one night when I was reading the Bible — that to survive, we need a companion on our grief-journey. (Let me find refuge under the shelter of your wings. Psalms 6:1:4)

I realized then that I had two simple choices; to lie down and give up or fight to stay alive and look after my remaining children. I was also concerned about doing something so that other parents don’t have to endure what I was going through. In those early days of grief, all I wanted to know was, .How do I survive? I would go searching for books and literature to try and soothe my pain, reading stories and testimonies of other people who had lost their loved ones before me.

It is then that I went to TASO (The AIDS Support Organization) to hear from other HIV/AIDS infected and affected people. I listened to one sad story after another and I was deeply touched. I then understood that I was not the only one suffering. TASO gave me free counselling and guidelines for survival and I believe this was my first step towards recovery. In those dark and uncertain days, TASO filled me with hope and positive thoughts just to help me pull through the day. I learnt to live my life a day at a time so that slowly, my days may turn into months and eventually, years!

TASO has taught me very many lessons. I learnt to tell my family and friends what I needed to survive as they didn’t automatically know. I learnt to do what gives me a peace of mind, and not necessarily what others think I should do. Sadly, I have learnt that in life we inevitably lose some of our old friends and yet find some new ones who let us grieve in our own way. I have also discovered that we can do so many things differently and make new happy memories.

Above all, I have learnt to always thank God for the good days and ask for help through the rough ones. I have learnt to keep communication lines open with my children and to respect their different ways of grieving and avoiding the pain of loneliness and isolation.

I have learnt to count my blessings and to think positive thoughts and that it’s alright to be angry with God sometimes since he will always be there to listen to the way we really feel inside.

I have discovered that I have now become a new person, never to be the same again and that my priorities will always be different now. I have found that I can dwell on the memories of my late husband and children which bring joy to my heart and enrich my life. It is these happy memories which inspire and empower me to do positive things in their honour and to keep other people aware of the HIV/AIDS problem in my family and in my country. Although my husband and two children are no longer with me, our relationship continues because love never dies.

TASO has inspired me to do the things which help others and I’m also grateful because work helps to ease my pain and brings me moments of joy. I have found that sharing my painful experiences with others helps to dilute the pain especially when I’m doing it to help others come to terms with their own painful experiences.

Sometimes you don’t have a loving listener or you may think that your feelings are too private to share. I have found that it is better to open up and talk about one’s feelings of loss, anger, guilt, confusion, fear, sadness, doubts about the future and loneliness than trying to ignore them and letting them build up inside you. It is when you talk about these feelings that they become real to you and allow you to release some of the tension and frustration.

Most people who have heard my story don’t know what to say to me. There are really no words that can explain away my pain. Only saying a little prayer gives me the inner strength to keep me going. It gives me the quiet time I need to unload the unnecessary emotional baggage and appreciate the positive things in my life while focusing on developing mechanisms to help me face my loss in my own way.

But still, there are always those tough days. The sleepless nights as my wedding anniversary and birthday anniversaries of my departed beloved ones approach.
Even when I try to forget these special days and the pain associated with them, I usually find that my mind won’t let me. I guess it is just human nature. In the days preceding such anniversaries, I usually feel the need to do something special in their honour like having a special church service or helping others in need.

I also try to use the special love for my departed beloved ones to help others by creating awareness especially among other mothers about Mother-to-Child HIV transmission so that they can get tested and make informed decisions. I’m also involved in sensitizing my community especially the youth about HIV/AIDS prevention programs.

I have also been supporting people infected and affected by HIV/AIDS especially orphans and old people who are left to support their grandchildren after the death of their children. I have also been strongly advocating for Antiretroviral Treatment (ART) for the poor communities in Uganda and Africa as a whole.

I strongly believe that the turning point in the war against HIV/AIDS is to help keep the infected parents alive so that their children may not become orphans when they are still young. If I can help save other parents from the horror and pain that I have experienced in my life, it will be one of the biggest achievements of my life and it will surely make my heart sing with joy.

I thank the Lord for keeping me alive and for being my constant companion on this journey which has filled me with the power and courage to discover life’s lessons. I hope you draw a few lessons from this story. May God Bless you.

Sylvia Namuddu

Sylvia Namuddu, a resident of Bwaise. She joined TASO when she was very sick after testing positive. After sometime, doctors carried out a CD4 screening and found that she had only 13.

They told her to start on ARVs so as to improve her body immunity and prolong life, this was around 2006. Her life started getting better when she started getting food supplements from TASO under WFP, besides her CD4 rising from 13 to 114, her body weight rose from 54 to 74.

She is grateful to TASO services and She appeals to all people to get tested as this will help them know their health status and above all avoid re-infection and infecting others.

Janet

Janet is the chairperson of one of the groups in TASO that benefits from World Food Programme (WFP) supplements and training from the Food Administration Organization (FAO). Janet is pictured working in a garden of peas and groundnuts (peanuts).

One of the areas that the MPWN and TASO focus on is the training of those that it assists in rural areas of agriculture and other farming practices to increase their marketable skills for employment and ability to provide for themselves.

Fausta Katabaire

HIV-positive women need their rights (by Angela Hill)

When Fausta Katabaire, 54, worked to found the Mulago Positive Women’s Network (MPWN) in 2004, she wanted to help HIV-positive women realise their lives were not yet over.

Now, as the treasurer of the organisation, Katabaire encourages HIV-positive women to train and get skills, work and fight for their rights.

Women are at a greater risk of contracting HIV than men because of social, cultural and biological factors like child marriages, polygamy, rape, defilement, wife inheritance, poverty, exploitation and ignorance.

Katabaire lost her husband to AIDS in 1997 and struggled to keep her children in school. She was lucky that after her husband’s death, his family did not try to take away her children or property, as is often the case in some areas in Uganda.

The Uganda Women Lawyers Association (FIDA), deals with so many issues surrounding unfair treatment of people living with HIV/AIDS and they have a project dedicated to addressing the rights of these people.

Barbara Babweteera is a lawyer working on the Legal Rights for People Affected by HIV/AIDS project and is based in Kamuli.

Babweteera says as long as a couple was legally married, when the man dies, the woman can be protected because the property belongs to both the husband and wife.

“In cases where the relationship is not recognised by the legal system, the assets go to the children. It is harder to protect the women in these cases.”

Babweteera says a major concern in her area is the practice of wife inheritance. When a man dies, his wife can be inherited by his brother, which when combined with polygamy, can lead to a greater spread of HIV.

The issues are not just surrounding the death of a spouse. When a woman is discovered to be HIV-positive she can also encounter conflict.

“Many women are sent away and their property is taken by the relatives. Some even had their children taken,” said Katabaire, about some of the women in her group.

FIDA tries to provide an avenue for these women to fight. They try to mediate between the couple to avoid using the legal system. Often times, says Babweteera, with counselling the issues can be resolved.

However, Katabaire says many women do not know where to go for help. It is these women the MPWN aims to help.

The organisation has mobilisation teams that target women who have gone to Mulago Hospital for treatment, those that have been diagnosed with HIV/AIDS and those who have been neglected at home.

The teams visit the women’s communities and meet their families to encourage positive living of those with HIV/AIDS, especially those who are facing stigma and hostility. A big part of their work relies on peer counselling, women sharing their stories and training.

The organisation offers information to women on topics such as adherence, nutrition for patients and their families, hygiene and trains them in small business book keeping.

“We encourage women living with HIV/AIDS to be active for as long as they are still strong,” Katabaire says.

MPWN is creating a training centre on Gayaza Road, seven miles from Kampala. When completed, the members plan to start mushroom growing, piggery, poultry keeping and fish farming. They will also be taught about beading, jewellery making and sewing.

The association encourages its members to plant fruits and vegetables in order to provide balanced nutrition to their families. To facilitate this, MPWN hands out seedlings.