MY STORY: COPING WITH HIV/AIDS
It is with great pleasure that I take this opportunity to share my experience of living with HIV infection with you. I have come searching for those who would understand my pain and be willing to share it. I need courageous models so I will not be discouraged while calling for change that is slow in coming. I need someone to hold me when I can no longer hold myself, to tell me the fight matters when I have no strength left. Someone to say they understand, they care, they will not forget.
Whenever I am selected to talk about my experience with HIV infection I always wonder: Is it because others do not believe or is it because I have a story to tell? I believe it is because I have a story to share.
The single hardest day of my life was when I heard with my own ears, Asunta I am sorry you have AIDS. Twelve years down the line, this voice still lingers in my ears as if its only yesterday.
As stunning as that was at that moment, I did not fear dying from the disease, but I feared living with the truth. It took me several months to come to terms with the bitter truth and the reality. I kept saying to myself this isnt possible! This cant be real! It cant be me. Many times I wished I were in a dream.
We often think of grief as a brief stage of mourning, but living with HIV extends the duration of grief to the length of lifetime. Most of us infected with HIV are healthy and live infected, wondering what will happen next; unsure what promise to make to our children or wondering when the distance bell will suddenly toll more closely. We do not so much recover from this grief but live with it; it is the naked truth affecting over two million Kenyans.
For three miserable and dark years, I suffered faces of agony. At the beginning I was in shock, then I was in anger, anger mounted to heartbreak, heartbreak to grief, grief to surrender and acceptance. Then, I decided it was time to take action, action against HIV/AIDS, which destroys not only the body, but also, family and friends.
Once I had accepted the truth, I expected everyone else would accept it too. I was wrong, totally wrong. It turned out that instead I received rejection, isolation, anger and humiliation. I was not at all prepared for the reality that everyone who loved me would go through all the stages I had gone through. This however did not stop me, I had a duty to do, a duty to tell them, the Kenyans and the whole World that I did not choose to be infected with this dreaded AIDS virus.
In my endeavors to fight this virus I preached: compassion, dignity, courage, awareness of risk, the need for unity within the HIV/AIDS infected people, and the promise of hope. In doing this I want others to realize that this disease is content to infect any human being and those it chooses are not somehow less human. It is on this realization that I have gone public, and I am willing to be a living example to others.
So, here I am an ordinary person with what is rapidly becoming a most ordinary virus. I have stopped feeling sorry for myself and I have now learned to live, think and even act positively. I have come out of my hideout, and I have found a stage where I can tell the world over that I am not a victim but rather I am a messenger. A messenger of hope. All I require from you is not pity, it is not even sympathy but I want you to appreciate me as a person, as a mother, tell me I am still worthwhile. I still matter. Tell me I am not a number, a statistic but an equal partner in this struggle.
Yes, its true that I have the virus, a deadly virus: that I know, I detest the state that I am in. But I am not a case neither a number. I do not focus on dying of the virus but rather; I concentrate on living with it. No matter what others say about me, I need not make myself a victim, I detest the term AIDS Victim, which at times is used by several people to describe me.
Victims are weak and powerless. A victim is passive. A victim is no longer responsible. I am not a victim. I am powerful and a force for change. I am reaching out to others who are HIV infected like myself and changing their lives. I am still able because I am advocating for my rights and the likes of myself. I am still my self and responsible because I am taking charge of my life and also taking care of my child. The virus has only weakened my immunity but not my humanity. I will never allow that to happen.
I did not come here today to depress you, nor did I come to spare you. Those of you who are HIV positive but dare not say it, you have lost loved ones, but you cannot own up and say it was as a result of AIDS. You cant even whisper the word AIDS. You weep silently and grieve alone. Believe me, you are not to blame, you should not feel ashamed, it is us to blame; we who tolerate ignorance and practice prejudice; we who have taught you to fear; we must lift our shroud of silence, We must break the silence now making it safe for you to reach out for compassion. It is our task to seek safety for our children not in quiet denial but in effective action. We must break this silence now to save our children, our Nation and the World at large.
We must take courage now. I know that it takes courage to step forward when the cause is sometimes unpopular and you could easily be misunderstood. Believe me. I know. I know both from struggling to find the courage myself and from seeing others. But without courage then there is no compassion. Courage requires that we place others ahead of ourselves, and compassion provides the motivation. Believe me with compassion we wont infect our friends and with compassion we can seize the suffering, which is within our power to relieve those who are in pain. We can oppose injustice, discrimination and isolation, we can embrace those who suffer and defend their cause. The compassion I refer here is like the one we have gotten from Pathfinder International. Compassion beyond words. Compassion in concrete action.
I want you who have devoted yourself to the care and healing of others, to know the importance of your devotion. Not all in the HIV/AIDS arena will trust you; not all will support me; but what matters is that we act wisely, do best whatever you undertake to do.
And whoever you are, male or female; do what you do best and stop the spread of AIDS.
If you have time, please give it freely
If you have the gifts of science or administration, please put them to work.
If you can teach, teach understanding
If you can write, write about justice
If you can sing, then sing a song of hope
If you can write songs and letters, please write
If you can pray, then pray for the world
March if you can
Heal if you can
But in whatever you do, please do not give up. If knowing the agony of this disease all you can do is grief, then grief. Stand in public and sob until someone asks you why and then tell him or her: ITS AIDS that makes me grief.
Stand by me when I need you, give me that assuring hug. It is true that we have lacked political consensus and it is true that we have lacked adequate funding, but above all what we have lacked is pure compassion. We must learn as history has too often taught us that when compassion is unseen, hope fades and as hope fades anger amounts.
We need to compose a life of compassion and if we maintain compassion then when we hear the shriek protests of those who have grown hopelessly angry and weary, we will recall the decade of indifference that has driven out their hope. We will respond with wisdom not with anger. Not with condemnation. We shall say we understand.
When we see the rage of those that have buried too many friends, lost too many loved ones, heard too many excuses, we will know that they have suffered enough. We will welcome those who protest over what some of us have too easily, too silently and too long accepted.
Armed with courage and compassion, the willingness of us people living with AIDS not to spread this virus even this, the most stubborn and deadliest of viruses so far, cannot defeat us. We can keep hope alive. If we cannot grasp a cure, we can seize the suffering that is within our power to relieve. We can oppose injustice and encourage compassion, we can embrace those who suffer and defend their cause.
AIDS calls for urgency not panic
AIDS calls for compassion not blame
AIDS calls for understanding not ignorance
Give us compassion
Give us hope to live
Give us hope for a cure
Give us hope for justice and fairness
And so I join you hoping that I will be worth to you, and if there would be a moment when the voice of one HIV positive person would make a difference, I would be happy if it were mine. I cannot extend or even save my life but I can contribute it and make it fruitful.
PROJECT TITLE: ESTABLISHMENT OF KENYA NETWORK OF WOMEN
WITH AIDS (KENWA)
Since 1984 when the first case of Aids was discovered in Kenya Aids remained a mystery, a myth and make believe way of scaring people from sex. Those suspected to be infected were taken to be sexually immoral members of the community.
People were dying miserably, without support from their families, hospital staff and community at large. This was due to so much fear and stigma attached to Hiv/Aids.
Religious leaders were up in arms that people suffering from Hiv/Aids were sinners and fornicators who were responsible for other people sufferings. Infact, they had only themselves to blame for their suffering and they deserved what they were undergoing.
Meanwhile as members of community took cover and refuge in silence and ignorance Hiv/Aids was eating deep and killing people on daily basis sparing no class, sex, age and respected no boundaries or profession.
It was against this background that in 1993, four women and I, all infected with the deadly Virus, teamed up and humbly started a meeting-group. We decided time was ripe for us to do something about our Hiv status and that of the wider community. We felt, especially as infected women, that we had to do something to protect our children from undergoing what we were experiencing.
Little did we know, nor predict that we were about to start a chain reaction reaching deep into communities and creating hope to other people living with HIV infection. Consequently, we gained recognition and respect that, further boosted us to push for registration of a Non-Governmental Organization: KENYA NETWORK OF WOMEN WITH AIDS (KENWA) in 1998. Our dream had come true. For us this was not a mean achievement.
By forming this organization, we knew that at long last we had a platform to air our views, our pain of being discriminated against, stigmatized and isolated. It also served as a forum to further seek acceptance and solidarity from our families, relatives and community in coping with this infection and mitigating the spread.
Our aims then, as today, were aimed at meeting the needs of Hiv infected women and their children.
These needs include creating:
ü Hope and purpose in their lives,
ü Opportunity to contribute to their own and others welfare
ü Advocacy for respect and protection of their rights and dignity as human beings.
ü Friendlier, conducive and enabling environment.
ü Empowerment on the subject women to take charge of their lives, care and destiny.
ü Opportunity to play a front role in controlling the spread of the disease not as recipients, clients or patients but as equal partners in the struggle.
ü Forum for mothers to prepare their children well in advance for possible consequences of their health status including possibility of their death.
During this period we lost one of our founder member. The four of us who remained felt even more motivated by the death of our colleague to continue with our aim: socio-economic empowerment of our women members.
To achieve this we sold our ideas to the government, donor community (both local and international) and any other parties, religious and individuals who could listen. It was not easy.
During this period we operated from a small office, which the landlord, a medical doctor, who has since passed away, kindly gave us. May the lord rest his soul in eternal peace. Besides this, we were kept afloat by nominal funds from well-wishers and deep voluntary commitment from our women members.
As we progressed luck shone our way in 2000, when Pathfinder International and Catholic Organization for Relief and Development Aid (CORDAID) came in to support our programmes.
With the support from the two donor organizations we have been able to start two drop-in centers at two slum areas, in our capital city, Nairobi, namely, Mathare and Korogocho, which are functional. The third one, which will be in Soweto, another slum area, is due to open in April, this year. We chose these areas because that is where majority of the founder members came from. Later we started getting members from other areas. As I write this article, we are now receiving calls and demands to expand and initiate similar activities in other districts. Our membership stands at one thousand six hundred women and one hundred Aids orphans.
Since our major goal was to improve the quality of life of women living with Hiv/Aids, replace statistics and paints with real people and give Aids a human face, we had to look for strategies to do this.
INTERVENTION STRATEGIES AND IMPLIMENTATION
Offering care and support to the infected women.
Advocacy, Education and community mobilization
Aids orphans support program
Under this programme we provide:
In all our activities we aim at benefiting the infected woman and helping the girl child not to get infected.
OUTCOMES AND IMPACT
ü We have given AIDS a human face and as a result we have seen more and more women coming out in the open and joining the network without fear or shame.
ü We have earned respect and acceptance in our families, and entire community and today they involve us in any activities pertaining to HIV/AIDS.
ü We have managed to break the wall of ignorance by religious leaders and made them understand HIV did not even respect religious observers. They have now allowed us to talk about sensitive issues like sex, condom and Aids. This was a breakthrough as we see it.
ü When we called on the government to intervene, Aids was declared a national disaster in 1999.We have seen every sector involved in the fight against Aids since then. This was another breakthrough.
ü Presently our network is involved in Eight Constituency Aids Control Council Committees while one of our member represents the interests of people living with Aids at the National level. This recognition is not a mean achievement.
ü In recognition of our effort in the fight against HIV/AIDS, and as infected people, the head of state honored us by bestowing to the Executive Director of KENWA a medal: The Order of Grand Warrior (O.G.W.) On 12th December 2000, during our Independence Day celebrations.
ü We have now attracted attention of a number of donors, individuals and group well-wishers.
MAIN OBSTACLES AND HOW ADDRESSED
ü Our members required the following material support: food, essential drugs, housing, scholastic material for potential orphans, school fees, uniforms and legal intervention for abused orphans.
To overcome this we mobilized local administration and the community. The Presidents office, community and religious institutions, among others, came to our aid and soon we were receiving relief food from government, free treatment for people living with aids in special programs, while donors helped us to start a medical facility in one of our drop-in-centers
FACTORS THAT CONTRIBUTED TO OUR SUCCESS
ü Our success, as an organization, is due to the deep commitment and confidence we members have in ourselves to excel, our infection status not withstanding.
ü From the outset we have also involved community structures in decision-making and planning and this became our backbone.
ü We offered hope and became real life models to the surrounding community.
ü Our openness about our status, as an initiative, has earned us favorable considerations and we have been received with open hands and big hearts.
ü Our fearless attitude has helped demystify AIDS and has helped others focus on living with the virus rather than dying.
MONITORING AND EVALUATION
ü On monitoring and evaluation we have not had any formal exercise as our project ends at the end of this month. However, we have been having continuous monitoring and evaluation of project activities and changes are made accordingly.
ü It is evident, however, that the project has positive outcomes as witnessed by the many women from the slum areas that have come out in the open about their HIV positive status. It is our strong belief that once one has accepted that they are infected, especially the women, then they can start rebuilding their lives with their children revolving around it.
ü They can start thinking about living for another day as opposed to being in denial and waiting for death that is slow in coming. It has also emerged that these women have found solace from the group therapies that we carry on, are more confident and committed to stopping the spread of the virus.
KEY LESSONS LEARNED
ü That accepting that one is HIV infected is the starting point. Acceptance allows for positive living and the responsibilities that it carries.
ü Our members are determined to see that the infection rate is reduced. They know they have a responsibility towards the society to contain the virus in their bloodstream and not to spread it by making the effort not infect others.
ü They know they have a responsibility to themselves to take better care of themselves so as to stay healthy and longer.
ü They know that they must stay actively involved in society if not for themselves, for their children and the community.
ü We have learnt that it is our duty to educate the community, sensitize them so that the community knows its role in the fight against HIV/AIDS.
ü The community also has a role to play in offering support to PWLHAs so that they can fulfill their obligations. It is important for the community to know the ways of transmission so that the stigma still associated with AIDS is reduced thus preventing isolation of PWAs.
ü Advocacy campaigns have gone far in implementing and hopefully restoring the rights of PWAs. Our programmes have been friendly to our members. Since most of our members are living below the poverty line in the slums of Nairobi, it is important to help them become self-reliant. This we have done by initiating income-generating Activities such as soap making, among others.
ADVICE TO OTHERS
ü To put a strong statement in whatever platform which unequivocally recognizes Aids as a family disease.
ü We should all portray the will to provide national leadership in the face of this mounting tragedy.
ü Have the commitment to support accurate and candid education, which will slow the growth of this escalating epidemic.
ü Have the insight to mount an effective campaign for research.
o Deep commitment to the project.
o Strong belief in addressing the AIDS scourge.
o Community friendly programmes that will work for the good of the people, both infected and affected.
o Commitment to help people living with AIDS in, counseling, home visits, income generating activities, relief food, orphan support.
ü That we have encountered a lot of problems when carrying out this project especially where funding is involved especially when we had just founded the organization. At the beginning, we carried our programs like home visits with the most minimal of funds. We still encounter the same problems as far as funding is concerned. But despite all these problems we still have the will to continue.
RECOMMENDATION TO AFRICAN GOVERNMENTS AND POLICY MAKERS
ü Our recommendations to African governments and policy makers is to recognize the dangers of HIV/AIDS as concerns development.
ü Borrow from the Uganda example of openness in Aids education and management, which has resulted in low HIV incidences.
ü Government policy should be open and aggressive if this problem is to be addressed properly. Government policy should include:
ü Health and Sex education in schools, colleges and work places. This can be done by using all available media e.g. electronic, print, public campaigns and at the community level, barazas.
ü Care and support the governments can help already existing CBOs, NGOs and village groups by funding trainings of counselors, home caregivers and related skills. Volunteers can also be trained as AIDS workers and peer educators emphasizing on greater involvement of people living with HIV/AIDS.
ü Condom distribution and easy availability should be made a priority by governments. Educating the mass about its proper use should also be considered at the distribution centers.
ü Voluntary HIV testing should be made available and affordable by the governments. Governments could network with the existing organizations and if possible avail this testing free of charge or at very low prices. Treatment and drugs for those already infected should also be looked into by the governments as the drugs are too expensive and out of reach for most sufferers.
ü Treatment of other STDs should carry weight especially in relation to HIV/AIDS
RECOMMENDATIONS TO INTERNATIONAL DONOR COMMUNITY
ü Appreciate that they are not save if AIDS remains unchecked.
ü That they need not donate huge funds to communities but work with them as equal partners, where communities provide labor and the international donor community supplements in money or kind.
ü They should also appreciate that they have been at it for a long time and that they have ability to mobilize resources unlike the sub-saharan communities. In the event that they pull out they will express hopelessness while presently our endeavors is to create hope against HIV/AIDS.