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A personal experience with AIDS

Zambia: A billboard on AIDS awareness and discouraging multiple sex partners.

I came back from church that Sunday feeling happy and looking forward to a visit with my brother at the orphanage. I rushed to the makeshift kitchen that was attached to my grandmother’s two-roomed house to grab a quick a meal before heading to the Mother Theresa’s home where my brother had been admitted for almost a year.
No sooner had I eaten than my granny called out for me. I hurried to granny’s room thinking I was late for the visit but to my surprise I found her sitting on her old mattress sobbing. She hugged me tightly, in a way she hadn’t done in a long time and I did not understand her gesture.
Wasala weka! wasala weka! (You have remained alone! You have remained alone!) Cried my granny as she held me tightly to her chest. I could still not figure out what she meant and I loosened myself from her and she cried uncontrollably. I wondered why she was crying. It was not until my aunt came wailing mentioning my brother’s name that I understood the scenario. My only surviving brother Philip had just passed on.
The news was so devastating, I could not believe it, and I stood motionless. With indescribable pain tears rolled down my face. Memories of my late mother, of my father and of my other two siblings lingered in my mind like it had just happened. My heart was filled with so much sadness. I could not understand why death had struck my family in such a manner. I was now the only surviving member of a family of five.
My brother had first become sick at the age of two after my parents died, first my father in 1992, then my mother in 1993. The only explanation for his illness was that he was too young to cope without motherly love.
Despite granny trying to fit in mother’s shoes, we lacked many basic needs and my brother’s condition deteriorated, leaving granny with no option but to take him to Mother Theresa’s home (a Catholic orphanage which also offers medical care).
For a year I only saw my brother once every week. His condition improved for the first six months at the orphanage but it was not for long. Just when he was about to clock a year at the orphanage, he died.
At the funeral house I overhead some women talking about how AIDS had wiped out my family, questioning where my mother had contracted the virus from and accusing her of promiscuity: “Nimatenda (its AIDS), look at how the husband died and now the children, maybe even this one (signaling in my direction with her eyebrows) is dying too,” One woman said in a low tone voice.
The news greatly disturbed me. Throughout my brother’s funeral I was troubled but I kept it to myself wondering how mother of all people could have died of AIDS.
The gossip from the women instilled fear in me, I started believing I could be HIV positive and would die anytime soon. I was depressed and each time I saw I had lost some weight I thought I was nearing my death day. Out of curiosity and a desire to learn more about the disease, I started reading a lot of booklets on HIV/ AIDS, how it’s transmitted and how it has no cure.
I later approached my granny on the topic and told her what I overheard during my brother’s funeral. She looked agitated and quickly changed the topic to divert my attention. AIDS was not something that was openly discussed and I understand granny’s attitude when she avoided my questions. I let her escape the first time but I did not give up.
Weeks passed and again I asked her about the death of my family. Her explanation was that my parents and my three siblings had been bewitched by some jealous family members. It was not the first time I had heard such an explanation over someone’s death. Almost all the deaths that had occurred in the family and community were blamed on witchcraft.
I later asked granny, again, about what I overheard during my brother’s funeral. This time I cornered her so she had no way of escaping my questions. Again, she insisted it was witchcraft but after much thought she confessed that the doctor at the orphanage told her that my brother had AIDS, a thing she never believed. “I knew my daughter. She could not die of AIDS. She was too decent to die of the disease. That s what doctors do if they can’t find a disease; they always say its AIDS,’’ granny said.
She later warned me not to share the information about the doctor’s remarks with anyone and she assured me that I was not next to die because she had taken all precautions to prevent the witches from reaching me.
This was the scenario in Zambia when the HIV/AIDS pandemic was discovered in the 80s. No one openly talked about AIDS and those found with the virus were stigmatized and regarded as promiscuous. Most people died silently without knowing their HIV status for fear of discrimination and name-calling.
Politicians too were reluctant to speak out on the growing pandemic. President Kenneth Kaunda’s announcement in 1987 that his son had died of AIDS was a notable exception and a milestone in breaking the silence. However it was not enough to curb the stigma there and then.
The dawn of the new millennium came with consented effort from politicians who saw the enactment of the national AIDS bill in parliament. The National Aids Council was established to coordinate the actions of all segments of government and society in the fight against HIV/ AIDS and is in charge of guiding the implementation of the National HIV and AIDS Strategic Framework (AVERT Zambia).
Although the HIV virus is mostly transmitted through unprotected sexual acts, children who are born from infected mothers are at high risk of getting infected at birth and through breastfeeding, as was the case with my siblings.
In preventing infant infection, a pilot project of Prevention of Mother to Child Transmission (PMTCT) was launched in 1999. The project aimed at testing all expectant mothers for HIV and put those found positive on antiretroviral drugs (ARVs) to weaken the virus and prevent the babies from infection during birth. The project proved effective and today every clinic that offers prenatal care has to provide counseling and testing to all expectant mothers.
When the PMTCT started it was voluntary but most women shunned the services. When I was expecting my first born child I saw some women refuse even the counseling services. Such incidences forced the government to introduce mandatory counseling to encourage mothers to undergo testing, although testing still remains voluntary for all expectant mothers. (According to the government’s PMTCT protocol guidelines of 2003).
PMTCT programs have made headway. According to the UNICEF 2010 HIV/AIDS report the number of women testing for HIV has drastically improved from 12% in 2004 to 95 % in 2009. These statistics show that women have started appreciating the knowledge on HIV/ AIDS and PMTCT, resulting in reduced mortality rate in Zambia.
Despite the introduction of PMTCT, there are still incidences of newborn infections where expectant mothers fail to adhere to treatment during pregnancy.
In the continued HIV/AIDS battle, late Republican President Levy Mwanawasa introduced free antiretroviral drugs in 2004, including pediatric drugs, to prolong the lives of the infected children. However, there are still challenges in administering ARVs to children, lack of adherence is one of them.
Anna Mukelebai (not real name) says she has a problem ensuring that her five year old son takes medication at the appropriate time everyday because she is normally away from home. She attributes this problem to confidentiality, saying, “I can’t entrust anyone to be giving my son the drugs when I’m away. I can’t tell everyone that my son is HIV positive. I haven’t even told him about his status yet. What guarantee to I have that whoever I confide in won’t injure my son in their remarks?’’
Another parent found at a health centre, Jane Phiri, explains that resistance to drugs has been another problem. She says her son started taking ARVs when he two years and three years later, the first line therapy became resistant. What if the second line therapy also fails?
Third line treatment is sometimes used in Zambia but the drug is not available to cater for all patients and unlike the first and second line treatment it comes with a price. In response, medical personnel have resorted to reverting to the first line treatment once the second line therapy becomes resistant.
Another problem that parents face in ensuring quality care for their HIV positive children is lack of adequate medical personal and facilities. Jane says it took over a month for her son to be investigated after the first line therapy became resistant.
“We are a lot and the doctor who is specialized to see these children comes once a month and we don’t have enough laboratories for all the necessary tests to be done quickly. When you do tests you have to wait for two to three weeks sometimes even a month before you can get the results. It’s cumbersome,” she says.
Despite all the effort that government is putting in to combat the HIV virus and protect the future generation, the infection rate in Zambia has still remained high with 14 percent of the 13 million population infected. High levels of poverty where over 65 percent of people survive on less than a dollar a day, alcohol abuse and cultural pressures are the major contributors to the high infection rates. In a culture that supports gender inequality, HIV prevalence is especially high among women and young girls. Women are taught never to refuse their husbands sex nor to insist on condom use.
According to AVERT HIV and AIDS report, a Zambian behavioral survey showed around 15 percent of women reported forced sex, although this may not reflect the true number as many women do not disclose this information. Women are also forced to hang on to promiscuous husbands because they lack the financial muscle to survive independently.
Additionally women become sexually active earlier than men and with partners who are much older than they and may already have had a number of sexual partners. Apart from being vulnerable to infection women are the worst affected as they are considered to be caregivers. They are the ones that bear the burden of HIV positive children, nurse their husbands and most times look after orphans.
I personally checked a local clinic to see how many men take their children to the clinic for their routine tests, and among thirty women, only one man had taken his son to the clinic.
To curb the high prevalence rate among women, many Non-governmental Organizations (NGO’s) have embarked on empowering women, some financially and others academically. Gender equality campaigns have been launched in almost all women organizations to ensure that women take bold decisions on matters related to sex.
Government has also taken a stance in ensuring a forty percent representation of women in parliament to ensure the woman’s voice is heard. All these efforts are yet to fully materialize and I look forward to a day when women and children will be truly liberated from the HIV/AIDS scourge.
To honor my late family, I have opted to speak out on the virus. I have taken it upon myself that change begins with me, I’m on a personal campaign of encouraging women to go for testing and replace ignorance with knowledge, shame with liberty.
This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous new media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.

Comments

amiesissoho's picture

Speaking out is the beginning

Speaking out is the beginning of breaking all forms of taboos including the stigma around HIV/AIDS. I had interviewed people living positively with HIV/AIDS on radio more than 20 years ago and they are still living positively and speaking out against the stigma associated to people infected with the virus.
stay strong Chinemu.

Amie

Chinemu's picture

It is indeed

Speaking out is the beginning of changing anything, I'm glad in Zambia alot more people are now open about their status, they seek help when need arises without shame or fear, thats the way to go, all what is remaining is behavoiur change,

Thanks Amiesssoho

Stella Paul's picture

You are the change, indeed

Dear Chinemu

I missed reading many posts of Module 1. But this time I am making it a point to read all: its the first step to stay strong as a group. And I just read yours. What can I say except that you are walking on the right path. Light the corner you are in and one day the society in general will be illuminated. Much love

Stella Paul
Twitter: @stellasglobe

Chinemu's picture

Thanks Stella

Thank you sister for taking your time to read my post, i;m equally making it a point to to read all the post, hope i will make it, thanks once more

Okeny-Lucia's picture

Well said!

The world and the war of HIV/AIDS far from over as long as the resources to improve quality of life is not available.Above all individual commitment to think about others and reduction unsafe sex that fuels much of this infection.I aapreciate this campaign you will go far.

Lucia Buyanza
Reproductive Health

Chinemu's picture

It begins with me.

For me, every change begins with me, and I believe if everyone can take upon themselves to say it begins with me, then this world would be a better place, I will keep on fighting, because it begins with me.

Thank you Lucia

noreens's picture

How sad for you to loose all

How sad for you to loose all of your family to AIDS. I admire you for taking such a difficult experience and trying to turn it into something positive for others. I wish you lots of luck!

Noreen

Chinemu's picture

Thanks

Thanks Noreen I always talk about AIDS and testing like I'm mad, and sometimes I know I get on people nerves, but for me knowing ones status and protecting oneself is more important than them getting upset,What hurts me most is seeing children suffering all because of the negligence of parents,

I will keep fighting for the children, No child should die of AIDS

Celine's picture

Dear Chinemu, Reading your

Dear Chinemu,

Reading your writing, I felt sad for the loss of your mother, father and siblings, but at the same time, I read the courage in you and your determination for change. I admire your positiveness and the path you tow in tackling the pandemic. I strongly believe with you that with time, the stigma, which is the killer of HIV positives will be eroded in the societies.

Celine

Chinemu's picture

Sometimes I break

Thank you Celine but at times I breakdown thinking of how luxurious life would have been with my family around but I again I believe its for a reason that it happened so I can be strong and positive in all I do.

Juliette Maughan's picture

A long road

Hi Chimenu,

Having worked and been educated in HIV Education, I read your post and my heart swells. The Caribbean has the second highest prevalence rate in the world, second only to the continent of Africa.

Your story makes me think of where we in Barbados were at in the beginning and we still struggle to fight against discrimination. It is real and HIV is something anyone can get. I am happy that you have rid yourself of this shame and have the courage to speak out.

I urge you to continue where you are, not only for the community but for PLWHA in every corner of this earth.

Thank you for sharing your story and highlighting the myths and stigma around the disease in Africa.

Chinemu's picture

thanks

Thanks Juliette, indeed we a have along way to go in fighting the pandemic but headway of been made, and we have keep fighting,
It's something that affects us all, If you are not infected then you are affected.

Rachael Maddock-Hughes's picture

A Global Issue

Thank you for sharing your story with us. I am so sorry to hear of the loss of your family. Your activism in bringing this issue to light is commendable. What saddens me is just how frequently I hear stories similar to yours. Free ARVs, women's empowerment, and men's education are all needed to combat this horrible disease. It is positive to hear about the success of the campaigns in Zambia, and to know that the government has stipulated 40% of parliamentary seats must go to women--what percentage has actually been filled?

Keep up the good work,

Rachael

"In every human heart there are a few passions that last a lifetime. They're with us from the moment we're born, and nothing can dilute their intensity." Rob Brezny

Jan K Askin's picture

An appropriate Tribute

Dear Chinemu,

You have chosen a powerful way to honor your late family. Out of great sorrow, you have committed to doing what you can to end the pain, discrimination, and gender bias associated with AIDS.

I admire your spirit.

Jan

Jan Askin

Shirley Clark's picture

Bringing stories into the light

Dear Chinemu,

Thank you for sharing your very personal story with the world. I have a friend who frequently travels to Africa with her organization to help spread education and medical treatment. However, in her stories, I was never able to gain the perspective that you provided in your article. Thank you for making me look at this from the view of a child and for allowing me the opportunity to feel it on a personal level.

I am sad for the loss of your family and I applaud you for making it your mission to spread education and promote personal liberty. Keep up this very important work.

Blessings,

Shirley

MaDube's picture

Hey love

First of all, I am really sorry for your loss. It must have been hard for you, losing your whole immediate family in such a short space of time. I also lost my sister to AIDS and I know how tough it is to deal with that loss. I am proud of you for choosing to speak out and demystify the disease because it is in the mysteriousness of AIDS that stigma and discrimination arise. You are one strong lady and I am proud to know you. Thank you for sharing this personal experience in your life.

Love,

MaDube

vivian's picture

you are strong

Dear Chinemu,

I thought I would have read your post before now but my schedules are so time. I am glad that you have got the courage to to tell your family story and experience on HIV/AIDS. This will strengthen you the more and help you to forget the past and continue with your life. Also, I sympathy with you over the loss of the whole family. You are an overcomer.

Certainly, you have really read a lot of book on HIV/AIDS because your post has a lot of vital information which has made it rich to read.

I wish you the best for the remaining month assignment.

Meanwhile, how are you coping with the task and other activities. Always start noting your assignment for the month early so that do not be under stress to meet the deadline. You could make it if you continue with such beautiful write up.

Well done Chinemu. I wish you all the best

Vivian

''Every woman have a story at every stage of Life''

carol adams's picture

thank you

Dear Chinemu,
I offer you condolence on the loss of your family and sense their spirit moving through you. I am struck by your strong heart and fierce courage. As I read your moving piece, I thought of the Gandhi quote, "My life is my message." Your work and your life come from the deep well of experience. Blessings to you.

Carol

Carol Adams

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