'You have just six months to live'

The following article was first published on March 22 2003 in the East African Standard. Asunta Wagura is a co-founder of KENWA, one of two Kenyan NGOs that have signed a grant agreement with the Global Fund.

This story does not belong to any one person. It is not Asunta Wagura’s story. But Asunta will wear its face for the purpose of it being told.

She was only 22 years old, fresh and green from a sheltered life in rural Nyeri. She landed in the glittering city of contrasts that is Nairobi to pursue a diploma in nursing. It wasn’t long before she got caught up in the flow of the “city girl” lifestyle which demanded that she kept up with the pace. This meant dressing en vogue, wearing make-up, hanging out in the right places and finding the means to support it all. Her cash dispenser comes in the form of a man who, apart from cash, also offered her love for free.

But some deals come with too high a price. The price she is paying now was to come later - two weeks after a routine medical check-up at the college.

“Asunta, I’m sorry to tell you that you are HIV-positive. We can’t keep you here because you are dying and you are a risk to the other students.” Then, as if to console her, the principal of the college added: “It does not mean that you are going to die right away … you have at least six months left to live.”

Just like that. There was no time to prepare for the worst. No time to rearrange her face and put on a composed expression. No time to re-think the implications and quickly retract a mistake. No time to say good-bye to “normal” life. No time to see the natural end to one’s dreams, no time to even afford to dream. No time to deny or accept the verdict; no time at all.

“They led me back to the dormitories. It seemed the whole college was there, staring at this strange person with Aids. The people escorting me had protective clothing on, like those people in the Dumu Mabati advert (she chuckles). They did not want to come near me. In the room, they collected my “contaminated” belongings in their gloved hands with exaggerated care and dumped them into a black polythene bag. I think they later burned them lest they spread the virus.”

But the worst was yet to come. Back home, Asunta was to receive another shock. Her mother demanded payment for the school fees she had spent on her daughter. Then the discrimination began. Asunta’s sister removed all her belongings from the bedroom they had always shared. When Asunta complained, her mother said she did not have any worth (since she was dying anyway) and she did not care how she slept. Her younger siblings too, regarded her with suspicion and caution. They kept a safe distance lest she infected them with the disease. She had a special room, special utensils, ate alone and hardly talked to anyone.

“Quiet and alone with your thoughts, you begin to test your mouth just to make sure it still works because you have been quiet for so long,” Asunta recalls.

Even the neighbours crossed the ridges to come and have a glimpse of this strange creature suffering from the dreaded Aids disease.

The first month passed, then the second, third … fifth … Then just one more to go and she would be dead. Her family knew that the time was drawing near. Her mother was mentally marking off the days on the calendar - bracing herself for her daughter’s death. With only one month to go, she did the “practical” thing and arranged to have a final prayer vigil at home. It was attended by the mothers’ guild from her church.

“We were at home when the crowds began arriving. They were all ceremoniously dressed and ready to pray for me before I died. The pastor even preached about the wages of sin being death. From him, I got the confirmation that I was indeed going to die.”

And indeed, in the six months since she was diagnosed, Asunta died. Physically, she was still alive but spiritually, emotionally and psychologically, she was dead.

“I ran away from home and went back to my boyfriend, the only man I had ever known sexually the one who infected me. I learnt that he knew all along about his status; he even went ahead and had other girlfriends. He did not want to die alone, he later said.

“He took me back and told me to forget about the ‘lies’ told to me about my status. I agreed and we started living together. Then I got pregnant and went for a routine pre-natal examination. Once again my HIV status was revealed to me. I was positive. When I told my boyfriend, he looked at me with disdain and said: ‘What did you expect? You mean you did not believe it the first time?’”

A completely dejected Asunta walked out of the house, never to return. He had already guaranteed her death, what else was there left to say?

“He died a few years later. I knew some of the women in his life. Five have also died. There were probably more I never knew. They remain nameless and faceless although we have one thing in common - we were poisoned from the same source!”

Pregnant, jobless and homeless, and with the dark Aids cloud hovering over her, Asunta adapted the life of a recluse. She has been through the whole drill - loitering in the streets, eating from garbage pits, doing odd jobs including domestic work and sorting out grain for farmers. But for some reason, she laboured on.

By the time the baby came, Asunta had read somewhere that babies born of HIV-positive mothers had a very low survival rate. But she wanted her son to survive. She wanted this so badly that she made the decision to live for no one else but her son.

She worked like a donkey to feed the baby. And she never disclosed her HIV status to anyone; she saw no reason to. And nobody was likely to find out unless of course, somebody who knew her disclosed it maliciously.

She didn’t have to wait long. Once her neighbours learnt of her HIV status, they immediately declared war on her and her son. “Once, when I was living in Kayole, I went to work only to return in the evening to find that the landlady had thrown us out after learning about my status. I did what I had done so many times before - picked up my belongings and started all over again.”

It was not only strangers who discriminated against and demonised Asunta. It seemed her family too, would not spare her. Once, when living in Limuru, her younger sister traced her and made it her business to alert the neighbours of her “contagious” status. Once again, Asunta had to pack and leave.

And the months went on and on. Asunta did not die and neither did her son. “By the time my son was one-and-a-half, I made the decision to “forget” the fact that he could possibly be infected. Deep inside, I knew he was going to live.” And live he did, right up to this day, and he is now 12 years old. Is he HIV-positive? “I don’t know. He has never been tested. It is better this way. He is the only hope I have left. I have talked to him and he understands my situation. There was a time when it was hard for him because other children teased him. But now he knows the truth and he is the one who keeps me on my toes about taking my medication on time, eating well, getting out of bed and going to work … everything!”

In 1996, still lost in the abyss of impending death, Asunta met four women who were also HIV-positive. As they encouraged each other to face the challenges of the disease, the idea came to form an organisation for women in similar circumstances. Hence the birth of the Kenya Network of Women with Aids (KENWA). Beginning with only 36 members, today KENWA has grown to 2,430 members country-wide whose majority are in Nairobi. The organisation also has 704 orphans under its care.

All those who work at KENWA are bound together by their HIV-positive status. And they are all volunteers. Many of them are very sick but the organisation tries to keep them busy and appreciates the fact that they are still alive; that they are still here.

“Most of the women are poor and cannot even afford drinking water, let alone food and drugs. They are weak and dejected and it is a slow process, sometimes a futile effort to begin to get them back on their feet. The workers here try their best. Whenever we lose a patient, it breaks their spirit, especially when they know they are also heading the same way. If only we could afford more drugs to keep them going. If only we could feed them all, and ensure that when they die, they get a decent burial.”

Help is what KENWA needs and Asunta is thankful that organisations like GlaxoSmithKline (GSK) have been supplying them with the Trizivir drug for at least four patients each month. This drug is a combination of three - abacavir, lamivudine and ziclorudine - and it takes care of a number of opportunistic infections that would otherwise put a patient down. The drug is what is keeping Asunta on her feet. “GlaxoSmithKline have been so good to us. We are indebted to them with our lives,” she says with feeling.

And so the story continues. This woman, with her unique strength of character, is a living testimony of what one’s inner resolve can achieve. Asunta is alive; in fact, so alive that a stranger meeting her for the first time would find it hard to believe she is indeed, HIV-positive and has been for the last 14 years. And to think that she had been given only six months to live!

Press release: Global Fund signs agreements worth US$2.8 million with Kenya NGOs to fund HIV programs (28 March 2003)