Interview: Agnes Nyamayarwo: AIDS Activist - U2 Feedback

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Old 03-21-2005, 11:31 AM   #1
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Interview: Agnes Nyamayarwo: AIDS Activist

By Brenda Clemons

In May 2002 when Bono and former US Treasury Secretary Paul O'Neil toured Africa, the pair visited people helped by TASO (The AIDS Support Organization) in Uganda. One of those people was Agnes Nyamayarwo, a nurse and AIDS-infected mother who'd lost her husband and youngest son to the disease. An MTV News crew captured this meeting between Agnes, Bono and Secretary O’Neil.

I met Agnes in Philadelphia at the launch of The One Campaign in May 2004. I spotted her standing alone against a wall, watching as fans waited anxiously to get a glimpse (and hopefully an autograph) from Bono. I'd just heard her speak and she'd profoundly affected me with her honest description of what it's like to live with AIDS. I went over and introduced myself to her and we talked for a few minutes. I met her again several days later at a congressional hearing on generic AIDS drugs. We exchanged contact information and soon became e-mail buddies.

It seemed only natural to ask if she would be willing to be interviewed for She complied, wanting to take advantage of every opportunity to raise awareness. Her answers to my questions are very frank and moving, and although she has suffered much, she is full of hope for the future.

Can you please give us some information on your background?

I was born at Rwetera, a small village 15 km from Fort Portal in the Kabarole district in western Uganda, East Africa. I am the first born of 10 children of my mother and the last of three children of my father. My father died when I was 9 months old. I am Catholic and grew up in a Catholic family. I trained as a nurse. I got married to Augustine and had 10 children--six boys and four girls. As Catholics, it was not traditionally allowed to exercise family planning.

My husband was very caring and worked extra hard to provide for our family. In September 1984, he was awarded a scholarship to study agricultural economics at the University of Georgia in Atlanta. When he returned to Uganda in 1986, life improved but unfortunately he fell sick in 1991 and died from AIDS on June 27, 1992.

On July 5, 1993, Charles, my 17-year-old son, disappeared from school after being stigmatized and traumatized over the loss of his father to AIDS. To this day, I have never seen or heard from him and I do not know if he is still alive.

On March 9, 1995, my youngest son Christopher died from 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. Throughout the time of his sickness, I was consumed by guilt, knowing that my son was innocent and that I had unknowingly infected him with the HIV virus during or after his birth.

I cannot 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 tears would just flow from my eyes and it is then that he would say, "Mummy why are you crying? I will be ok."

His innocent face and words have always remained with me and filled many of my waking hours. His determination to get better always returns to haunt me, for I knew even then that without proper medication that he needed (Anti-Retrovirals/ARVs), Chris was fighting a losing battle. AIDS has therefore caused me the loss of both my son and husband, and I do not know if I will ever see Charles again.

What was it like growing up in Uganda?

Growing up in Uganda was not that easy or enjoyable. As a girl, my mother did not let me play or have as much fun as my brothers did. I was expected to stay home all the time with my then-only sister, and we missed out on stuff like climbing trees, riding bikes, playing hide and seek, and the like.

I grew up knowing that girls are not supposed to shout and run about but stay in the kitchen helping their mothers. If we really had to play, it was with dolls around the house. In short, for us the girls at home life growing up was generally more boring than for the boys.

When someone at home used to fall sick, it was usually me or one of my sisters who had to leave school and look after her while the boys continued with school. Given the difficulties that faced young girls growing in my generation, I am lucky to have been able to attain a fair level of education and I was able to join nursing school.

You have a very strong faith in God, were there ever times when you felt like giving up?

I have always had strong faith in God though there are times when I have felt as if God was no longer listening to my prayers. My church has consistently spoken of God's love and care for all people. During some of the hardest and darkest periods of my life, I would sit in my bedroom and ask God, "Where do I begin?" I was thankful to 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 I had no idea where I was going to get the resources from to support my remaining eight children.

Some people had already started distancing themselves from us. It was indeed a terrifying experience trying to imagine how my children and I would continue living this stigma around us. I used to read books looking for answers. Some of the answers to my problems came to me while reading the Bible late at night and I was inspired to continue struggling with my life for the sake of my children.

I realized that I had two simple choices—to lie down and give up or to fight to stay alive and look after my remaining children. I was also concerned about doing something so that other parents do not have to endure what I was going through.

In my early days of grief all I wanted to know was how to survive. Through searching for ways of soothing my pain, through books, stories, and testimonies of those who had lost loved ones, I ended up going to TASO to hear from others infected and affected by HIV/AIDS. I listened to one sad story after another and was deeply touched, and it is then that I realized that I was not the only one suffering.

I have learnt that God was present then and still is in my life and He works through people we meet, for example Noreen who started TASO, and also through researchers with whom He blessed the knowledge to discover the medicines that have kept us alive to date.

Describe your duties at the TASO clinic? What is your daily routine?

At the Mulago TASO center, I work as a volunteer on clinic days supporting the very weak clients who come for treatment. I also participate in health talks, giving and sharing information on HIV/AIDS prevention and ARV treatment, as well as home-visiting the sick and their families.

I represent the clients on the Mulago Centre Advisory Committee and all female clients on the board of trustees of TASO Uganda.

I am also a chair person of a group of HIV-positive women who receive services at TASO and with whom I share all information that I get about HIV/AIDS, for example about ARV treatment and dealing with challenges of single parenthood, among others.

When did you first become involved with DATA?

I first met Bono when he joined Treasury Secretary Paul O’Neil on a trip to Africa in May 2002. Uganda, my home country, was one of the countries they visited. While in Uganda, they visited TASO and I was asked to address them about my experience with AIDS in the family. The group I sometimes move with educating the public through dance and drama performed for them as well.

Bono asked if we were on life prolonging treatment, ARVs. The answer was no because it was too expensive and TASO could not afford it. He asked where we got the courage to go out and educate others yet we knew that we were going to die. Two weeks later he sent money to the TASO account for treating 25 people in this group. Since then we at TASO consider Bono a man of God who came to save our lives and keep the fire burning in our communities. That was a turning point in our lives.

Towards the end of November 2002, I was invited by DATA to join DATA staff, Bono, Ashley Judd, Lance Armstrong, Steve Brown, Chris Tucker and a group of children from Ghana for the Heart of America Tour to talk about the AIDS epidemic in Africa and to raise awareness about Africa’s problems in the United States.

What is it like to work with Bono?

I very much love working with Bono. He understands our problems and the issues in Africa and the role he can play by informing the public and getting them interested in our issues.

When he talks about Africa one would think he is from there. He is very sincere and talks from experience because he has traveled in many African countries. I feel so blessed to be part of the DATA awareness campaign. Bono usually says, "It is not about charity but justice."

I admire Bono because he is making a difference in our lives. It is through his effort that some of us are lucky to be accessing free treatment, although the numbers of those without this treatment is still very high.

In addition, Bono is committed to the fight for debt-relief for poor countries, especially in Africa, so that their resources can be better utilized, for example by introducing free primary education in Uganda.

You have traveled to the United States many times; do you enjoy your visits?

I have been to the United States four times now and every time I'm there I really get touched by the kindness and genuine interest about Africa's problems expressed by the people I have interacted with.

I now have a conviction that Africa is not a lost cause because there are many Americans who care what happens to Africa. We in Africa can only break away from the deadly grip that AIDS has on us by getting help from more developed nations, for example from the US government.

Generally, I always enjoy my visits to America and I very much look forward to them, although it is always amazing to learn how little some Americans know of the outside world.

What do you think needs to happen by international governments in order for things to improve in Uganda?

What governments and international organizations need to understand is that AIDS is a killer and it's global! It's not about politics and boundaries but the millions of people who have died and continue to die everyday leaving orphans in big numbers.

As such, governments from developed countries ought to [enact] debt-relief and practice fairer trade with the poor developing countries so that they can become self-sustaining and reduce their dependence on developed countries. This way, the poor countries will be able to cope with the AIDS scourge through building their health system, improve on their infrastructure, for example by building good roads, schools, and also improve the agricultural sector on which Uganda is mainly dependant.

I believe that these governments are as duty-bound to do this it as it is a duty for one human being to help sustain the life of another human being, and I certainly hope that they will rise to the challenge sooner than later.

I encourage the general public, like the readers of this story, to spur people from their homeland into action through letter writing to advocate a balanced policy of prevention and treatment to combat AIDS through increased assistance and debt-cancellation.

They can also work with any organizations in their communities who are working on these issues.

What are your hopes and fears for the future?

My hopes are for a world free from AIDS, where children can grow up with their parents and live to see their grandparents.

My fear is that unless a real concerted effort is mounted by the developed countries to counter the AIDS scourge, the price paid by humanity through the loss of millions of lives will be too great to bear and we will lose out on a whole generation of people, especially in Africa. This must not happen!

You have gotten the attention of celebrities and international leaders, and you have much to be proud of. How do you feel when someone comes up to you and says they are inspired by you?

If during the course of my interactions with people I have somehow inspired them to positively think about what can be done about the AIDS pandemic, I am truly happy because I then know that I am making a difference.

I know that we are not going to simply wake up tomorrow to a world free of AIDS, it is up to me and you who are reading this story to make a positive contribution toward the eradication of AIDS, if not for ourselves, then for the sake of humanity.

I hope that I have made a difference by influencing others to join in the struggle against AIDS, not only in Africa but also in the rest of the world.

For more information about what you can do to further the causes of AIDS and debt-relief in Africa, visit DATA. You can learn more about Agnes' story from The One Campaign. For more information on TASO, visit the official website.

Many thanks to Agnes Nyamayarwo and her family for their help with this article!

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Old 03-21-2005, 04:44 PM   #2
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Agnes Nyamayarwo is ONE of thousands, if not millions of living heroes and heroines who quietly live their lives fighting for their futures and the futures of their societies throughout Africa.

Since I first saw her speak on World AIDS Day, 1 December 2002, in Lincoln Nebraska on the premier night of DATA's "Heart of America" tour, she has had a special spot in my heart.

I pray for her and her countrymen and women and I wish her and her family well always.

When I and others talk about the importance of joining the struggle to stop the spread of AIDS in Africa, it is the life of Agnes Nyamayarwo and the other courageous people of TASO that I hope people will remember.

These peoples' lives and futures are worthy of being saved.

Thanks very much for this article.

And Agnes, I hope that you will continue to take good care of yourself and your family.

Some of us love you very much.

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Old 03-22-2005, 09:14 AM   #3
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Thanks, Jamila for your kind words. I hope you are doing well!
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