HIV and AIDS: The Global Inter-Connection

THE DISEASE THAT DARES NOT SAY ITS NAME

 By Omari Haruna Kokole

"Out there somewhere, alone and frightened." So sang my compatriot Philly Bongoley Lutaaya, describing how it felt to be a person living with HIV. Lutaaya, one of Uganda's most famous entertainers, began speaking about living with HIV in 1989. He was the first well-known Ugandan to publicly acknowledge that he was infected. His struggle during the last few months of his life, to raise Uganda's public awareness of the epidemic, became the subject of a very moving documentary, Born in Africa.

Given the stigma surrounding the disease and the tendency for society to ostracize persons with HIV, Lutaaya's was a very bold and selfless act. His public stance and subsequent death warned those who cared to listen that unless they took the necessary precautions, this could also happen to them.

When I first heard Lutaaya sing "Out there somewhere, alone and frightened," the song moved me, although the lyrics had no immediate or personal meaning. A few months later I began to understand what Lutaaya must have experienced when he first learned of his condition.

This essay is partly about the late Lutaaya, partly about myself, and partly about one of my sisters: three Ugandan nationals, relatively young adults in our twenties and thirties, whose lives have been fundamentally affected by this deadly global epidemic. Lutaaya died as a result of his infection with HIV. I once faced the possibility of being infected with HIV and found myself wrestling with the chance that I might die as a result. Yakanye, one of my three sisters, tested positive for HIV and now manifests some symptoms of AIDS.

I have not lived in Uganda since 1976, but like many of my fellow Ugandan expatriates, I knew of a few friends back home who had died from HIV-related illnesses. I also knew how widespread the epidemic had become. I occasionally visited the country and I knew theoretically that I was as vulnerable as my late musician compatriot and others had been. But I lulled myself into believing that HIV happened to other people, not to me.

Then in the spring of 1990, I spent some time at home in Uganda. Not long after I returned to the United States I went for a complete physical examination, my first in three years. After two consecutive tests indicated that my white-blood-cell-count was below normal, the doctor made it clear there was reason for concern. He suggested that we examine all possibilities, including cancer and HIV, and suggested that I consider being tested for the virus.

My response was that if I had contracted HIV, I preferred not to know. I thought of the disease as a death sentence. To know would be to deny myself the luxury of a normal life from that moment on. Instead, I would be obsessed with the idea of imminent death, and this would colour and influence each and every act, thought, and feeling of mine until my dying day. It would be sheer agony, and I was not sure I could withstand such an ordeal. Evidently my attitude was shared by others, because I have since heard it said that most people in Kampala who donate blood, for example, say they do not want to know the results.

In response, my doctor reminded me that I was still healthy and that if I did test positive for HIV there was a good chance of prolonging my life by protecting me from the opportunistic infections that often are part of this disease. Apprehensively, I agreed to be tested. My blood sample was taken and I was told that the results would arrive in two weeks. The subsequent fourteen days were the longest, toughest days I have ever lived.

I hesitated to confide in others partly because I feared I would be harshly judged and ostracized. Thus, having resolved not to confide in anyone that I had been tested and was awaiting the decisive results, loneliness was the most painful part of my ordeal. The words of that Philly Lutaaya song took on an immediacy and resonance greater than I had ever imagined possible.

Throughout that terrible waiting period I kept wondering, "what if the results turn out to be positive?" I knew of two friends, former classmates at Makerere University in Uganda, who had died of HIV-related illnesses in the 1980s. They in turn also had other relatives and friends who had succumbed. Was I going to die young, in my thirties, like Philly, like John, like Margaret, like Susan? Uganda's capital city, Kampala, has been described as a place where "a roadside coffin maker says he sells more of his product for burying young adults than the elderly." How much time was left before one of these coffins would be purchased for me? As I pondered my future in the face of HIV there was also some anger: what had I done to deserve this fate?

During that long lonely waiting period, I wondered about the broader meaning and repercussions of my death. I am the first and only member of my family to attend university. My ethnic group in Uganda, the Kakwa, comprise a small community. Scattered three ways by European colonialism when the artificial boundaries that were drawn dispersed the nation, other Kakwa are nationals of Zaire and the Sudan. Now HIV threatens to eliminate our small ethnic group and preempt the fruits of my people's achievements.

In Africa the more economically productive are more likely to be infected with HIV. Because the disease tends to strike young adults, those most likely to leave behind their children and dependents, premature death carries, among other things, serious economic, political, psychological, and sociological consequences.

The late Philly Lutaaya is survived by four young children. I have two teenage daughters who remained in Africa when I left to pursue my graduate education overseas. Both Apayi and Amori are attending school in Kenya. I am responsible for funding their education and for providing virtually all of their material needs. As the cloud of HIV hung over my head last summer, I thought about what would happen to my daughters if the test results were positive and if I were to die in the next few years. Because of extended family obligations I had not saved enough money to ensure that they would complete their education. Should I look for a guardian or prospective sponsor for my daughters? How and when would I break the news to them? Should I warn them about the danger of Daddy's fate befalling them? After all, the two girls are teenagers and vulnerable to contracting the virus.

I worried too about my parents and other siblings. After my death, who would help them financially? The political anarchy and turmoil in Uganda since the 1970s had scattered my family. My father, a refugee in Zaire, having witnessed wanton lawlessness and violence in Uganda, has sworn not to return. My mother had only recently returned to Uganda from the Sudan. Both my parents were more or less my dependents. Two of my siblings, though not completely dependent on me, were partially my wards. Then there are members of the wider extended family who look to me for help from time to time.

Dr. Sam I. Okware, Uganda's deputy director of medical services, was not overstating when he said: "Here, nobody is born an individual. If an important person dies, it is not one individual dying; it is a community." As the man who pays the school fees for almost all the children of his home village, Dr. Okware's obligations are much heavier than mine. But in a sense he was speaking for many of us when he remarked, sadly: "If I go, the whole village is gone."

The two-week waiting period for the results of my HIV test ended on a Monday. Early that morning my telephone rang. It was my doctor saying: "Dr. Kokole. I have some good news for you. You are HIV-free."

What a relief! I felt as if a ton of bricks had been lifted off my back, even though my doctor advised that I take another blood test to ensure that I was also cancer-free. But psychologically HIV was the more terrifying prospect. Maybe it had to do with society's contrasting responses to the two conditions. If I had cancer I would be less ostracized, less stigmatized than I would if I had HIV. Fortunately the results from this blood test were available the following day. Again, I received good news.

And yet my feelings of elation and relief were tinged with sorrow, for my sister had not been as lucky as I. When I saw Yakanye in Kampala in May 1990, I knew she had not been feeling very well for some time. Although the thought did occur to me that she might have contracted HIV, it did not register as a distinct possibility, because she did not look ill or emaciated. I was devastated the afternoon that Yakanye came to my hotel and told me that she had been tested and that the results were positive. I love my sister deeply and I tried to responded sympathetically and calmly. I did not ask her how she might have caught the virus. To have done so would have looked as if I were trying to apportion blame. Yakanye was in enough pain already and I did not want to add to it. Besides how she contracted HIV was not the issue. Now that we knew she had it, what were we going to do about it? The documentary about Philly Lutaaya contributed to my enlightened response to this family crisis.

I told Yakanye not to worry too much and encouraged her to continue with her education. I reminded her that doctors and scientists continue to work very hard at finding a cure, and that it was possible one would be found soon. I urged her to seek support and counselling and continue to do so after my return to the United States. I succeeded in persuading Yakanye to join several support groups, including TASO, The AIDS Support Organization, founded by Ms. Noerine Kaleeba.

But, despite my external calm, I was deeply shaken. I began to think of how to reconcile myself to the reality that Yakanye might not be alive for much longer, that Yakanye might die in her late twenties.

Had my sister's condition developed after, rather than before, my own scare, my initial response to her tragedy would have been different. Rather than pretend not to be worried and sad, I should have helped her to confront and deal with these very painful and unavoidable emotions. After my experience with fear and worry I promptly wrote to Yakanye about what I had gone through. I told her that as a result I now had a deeper and more compassionate understanding of her situation. I apologized for not having cared enough about her fate. Much to my surprise and reassurance she responded by saying that she knows I have always cared and was sure I genuinely shared her anguish.

My admiration for my sister's courage, perseverance, and her capacity to retain her sanity in such personally tragic and trying circumstances knows no bounds. The fact that Yakanye gave me permission to share her news with anyone of my choosing is but one example of her courage.

Given how scared I was during those critical weeks of waiting, my better understanding now extends to what so many others are facing, and my admiration has grown for those who test positive for HIV and who are strong enough not to go crazy afterward. I respect their fortitude and perseverance because for so many people living with HIV must be terribly trying, difficult, and very solitary. Those of us who are HIV-free should relate to people who are infected with greater compassion and understanding. In the ultimate analysis, HIV is our collective disease.

Within the family I have successfully persuaded other members to respond positively and supportively to Yakanye. As the eldest offspring and son in the family, my role has been helped by tradition, which respects age and seniority. But while I anxiously awaited my test results, I could not help but wonder how the news that both my sister and I were HIV-positive would affect them. Difficult as it is for a family to discover that one among them has this disease, think how much greater the tragedy when two or more of its members are stricken? In many parts of Uganda HIV strikes more than one member of a given family. The broader implications of such intra-familial catastrophes are very serious.

One is reminded of Beatrice Habeenzy of Hamuntamba, Zambia, who left her husband whom she believed transmitted HIV to her. Beatrice has lost one child already and her nursing baby may also be infected. One also remembers that Noerine Kaleeba's husband died of HIV-related illnesses. She also has two sisters who have been diagnosed with AIDS, one is now dead, and she says her family is not unusual. Then there is the sixty-eight-year-old woman near the Ugandan town of Masaka who has lost three of her four children to AIDS. She now lives with her one remaining son and twenty-eight grandchildren, some of whom probably carry the virus too.

What the Future May Hold

HIV has already impacted on the lives of countless people in many countries, both directly and indirectly. As the epidemic grows the situation can only get worse. The emotional, economic, social, and political toll is already enormous and is unlikely to diminish unless a cure or vaccine for the virus is discovered before the end of this century.

Health and development are intimately related. A society with vast numbers of ill members cannot be productive enough to develop itself. Now, along with the health, economic, and development problems Africa already has, HIV has arrived with a bang. Like most developing countries, Uganda did have several killer diseases before the advent of HIV. However, because the virus is targeting the most productive as well as the future leaders of society, its full impact differs radically from most known fatal diseases already challenging developing countries.

The political turmoil and violence in Uganda has had a staggering economic cost. Uganda's productive capacity diminished greatly as its modest infrastructure was neglected or, worse, demolished. In time, the economy fared so badly that the term salary became meaningless. For example, a professor at Makerere university earns less than the equivalent of U.S. $50 per month, with approximately the same purchasing power.

The African continent has lost many skilled and educated young people to the brain drain and now, ironically, in Uganda as in other countries, HIV threatens those who chose to remain. The loss of these stayees, as they are called, can only exacerbate the problems of an already ailing economy and dislocated society.

Most African countries do not yet have free elementary education. Indeed, for most parents, it is costly educate a child. Without the support provided by other educated or affluent members of the family or village, many children would never be able to attend school. Because of this, the termination of such support, and the burdening of elderly post-productive grandparents, carries alarming implications for the future.

In 1990, the population of the Republic of Uganda was estimated at approximately 17.5 million, and was expected to surpass the 30 million mark by the year 2015. If the epidemic continues to grow at its present speed, by 2015 Uganda is likely to have a population of only 20 million. Superficially this would appear to be good news because much of the developing world is endangered by its population growth rates which surpass economic growth and performance rates. This twelve million shortfall in population will be comprised of the young, economically active who will have died HIV-related illnesses, as well as those who will never be born as a consequence of HIV. Meanwhile it is estimated that by 2010 between five and six million Ugandan children will be living without families. Just as the numbers of grandparents who will be raising these grandchildren, and also burying their own children, will continue to increase. The situation economically imperils many of the elderly, for they no longer have anyone to provide for them in their old age. Placing the burden for the survival of young children on their fragile shoulders increases the children's vulnerability as well.

Uganda already has hundreds of thousands of parentless children as a result of its civil wars and violent politics. If projections of the future are accurate, the HIV epidemic will significantly swell that subpopulation. These children are likely to be underfed, underschooled, underhoused, and generally under-cared-for. Ultimately, they are likely to be less than fully integrated productive members of society. The indigenous extended-family system, already burdened by the effects and side-effects of civil wars, rural-urban migration, and economic dislocation, among many other factors, simply cannot be expected to cope with new and unprecedented demands. For a country that has already experienced so much turbulence and bloodletting, HIV represents a danger to its economy, stability, and morale.

Many indigenous customs and traditions are likely to be severely tested. Already there is evidence that mourning periods and funerals are lasting for shorter periods than before. It is also likely that, increasingly, many Ugandans will not feel guilty about failing to meet the inordinately heavy, and growing, extended-family obligations created by the epidemic. All of this adds up to a recipe for more future crises in an already troubled country.

The cumulative, long-term impact and implications of the epidemic for African countries are mind-boggling. It is impossible to calculate the damage, havoc, and anguish HIV will generate in Africa and indeed worldwide. But there is little doubt that the bottom line will be substantial.

In Africa HIV has an urban bias. But because the rural-urban connection on the continent is more of a continuum and less of a dichotomy, it is hardly surprising that the virus has begun to make inroads into the rural areas as well. The vast majority of Africans reside in rural areas and, because of the constant traffic between town and village, the virus seems to be headed in that direction.

The future looks grim and the widespread tendency not to be completely open about HIV cannot help but exacerbate the situation. Regardless of their reasons, governments in Africa and elsewhere who attempt to minimize or conceal the presence of the disease in their countries are wrong. To behave as if HIV is not a reality, a raging and growing one at that, is not only a mistake, but ultimately much more dangerous than confronting it and working to do something about it. Governments as well as private individuals must face HIV frontally.

It is clear that prevailing negative and counter-productive attitudes are difficult to change, but they are not altogether impossible to alter. In order for this to occur governments must be committed to frank discussion and invest more energy and resources into public education programmes and mass media efforts.

Society must face up to the fact that HIV is a real disease that strikes real human beings, such as you and I, and unless we confront its reality, we all stand endangered.

Biographical note

Omari Haruna Kokole is an Associate Director of Global Cultural Studies at the State University of New York at Binghamton. Dr. Kokole received his Ph.D. in political science from Dalhousie University in Canada. He is an author of "Dimentions of Africa's International Relations".