Our Kind of People Page 4

  “Did your relationship with your husband change?” I asked. “Were you angry with him?”

  “I wasn’t harsh on him. I know that something may occur and let God give us a solution. No other thing. He was the one that worried himself, but I was not angry with him. I know that he didn’t do me anything wrong.

  “I used to advise him that he should take everything easy. He was thinking, thinking. Later-later, he just developed high blood pressure. I was feeling strong. He was still feeling strong. I feel like nothing is happening to him, no fever, no headache, but he say, ‘How can a somebody like me be included in such a thing?’ That he won’t allow such a thing to happen. He said, ‘The day the thing will occur on my body and people will just be watching me like this?’” She shook her head and looked away from me. “My husband, he stay just one year before he finally give up. Maybe he took something. I thought that he take something, because he was very healthy. He was very healthy. That’s why I say he took something.” She closed the album and replaced it beneath the table.

  “So as I am now,” she said after a long pause, “I’m not feeling any pains. The only thing that I do is to take my drugs. I started taking drugs two years ago. Two years ago, I force myself to take drugs. I just want it like that, because I feel that if I’m not taking the drugs, along the line I will break down or something like that. I take ARV. I’m living healthy. I watch the kind of food I eat. I place myself on vegetables, fruits, all these local-local foods—dry fish, crayfish. I just press myself on it. Then every month, I make sure I take malaria drugs. I deworm myself. If I stay something like three months, I will went to test and check my CD4 count. That’s how I used to do.”

  She stretched and yawned, suddenly so casual, so ordinary.

  Such is a reality of HIV/AIDS. It is an immensely transformative process that can dramatically change a life or lives—from prosperity to poverty, from popularity to a marginalized existence near the edge of a city. Yet the reality is that even with HIV, life can go on, and in the most boring of fashions. There may be a new normal to which one must adjust, but if that adjustment can be made, then chores must be completed, money must be earned, children must be cared for. There is nothing sexy or dramatic about a life lived normally. When considering HIV/AIDS, people want to see a dramatic change. They want to feel that they have rescued someone from the verge of death, but the reality of dealing with HIV/AIDS is as Rolake suggested, that effort should be put into making sure people maintain their level of existence. People from Nigeria and abroad don’t want to hear that their donations and aid work are going to support another person’s ability to do the things we all have to do, but this should be our goal in the struggle with HIV/AIDS: to mitigate its impact so that lives become livable again.

  “The only thing I know is that as I am now, I’m not going to die because of this problem,” Hope said to me shortly before we parted ways. “I know that this problem will not kill me. As of now,” she said, “I find it like malaria. When malaria comes to you, you go to hospital and take drugs; it will stop. Instead of me to have cancer or diabetes, it is better I will be into this problem because it doesn’t disturb me. Nothing. This is just like ordinary sickness.”

  STIGMA

  But HIV/AIDS is not really an ordinary sickness. It is not a cold or the flu, which, though contagious, are rarely deadly. It is not cancer or diabetes or heart disease, which are long-term and debilitating, sometimes deadly but not contagious. This is not to downplay the significance of the epidemic but rather to suggest, as Philip Alcabes does in his essay “The Ordinariness of AIDS,” that HIV/AIDS is extraordinary because it attracts so much attention from the global population, perhaps more than any other disease since the medieval plague. It causes intense fear, initially bordering on hysteria, which influences how we see both the disease and people who have it.

  As long as there has been life, there have been viruses—or so I learned in medical school. Indeed, a virus might be a primitive form of existence. Viruses are inordinately simple creatures composed of genetic material, either DNA or RNA, surrounded by a protein shell. Their sole purpose is to replicate, to make more copies of themselves by inserting their genetic material into the genetic material of a host, such as a human cell, and making that cell generate more copies of the virus. We get sick because the virus often destroys our cells in the process of replicating itself.

  In general, human immunodeficiency virus (HIV) behaves no differently from other viruses. It cannot survive on its own and must have a host organism to replicate itself and continue its life cycle. HIV is unique, however, because of the particular cell in the human body it chooses as its host. The virus’s primary target is one of the most crucial cells for human survival, the helper T cell. These cells coordinate our immune system’s response to most of the illnesses we might encounter during our lives. HIV makes millions of copies of itself inside the helper T cell and then destroys the cell to release all of its copies into the bloodstream. It is so devastating a pathogen because it attacks the body’s ability to fight infection—including HIV itself.

  AIDS (acquired immune deficiency syndrome) occurs when the HIV virus has destroyed so many helper T cells that our bodies can’t begin to mount an immune response to even a simple illness. In other words, our bodies’ immune system cells cannot talk to one another. They act in isolation, and we are left extremely vulnerable to infections our bodies wouldn’t ordinarily sneeze at.

  AIDS is not one illness but a constellation of sicknesses that can occur when our immune systems stop working. People with AIDS can get various forms of cancer, pneumonias, and fungal infections, along with bacterial and viral illnesses that our bodies might otherwise prevent. Because it takes a long time—on average about five years—for someone to lose enough helper T cells to progress to AIDS, a person with HIV may not look ill (in fact you can argue they are not ill) until the very last stages of HIV infection. It is just not possible to determine by looking who may or may not have HIV. This is perhaps one of the most important survival mechanisms for the virus. Because people who carry HIV do not necessarily appear sick, they are more likely to unknowingly pass the virus along to another person through the exchange of bodily fluids like blood, semen, or vaginal fluids. Thus, unlike other epidemics that announce themselves rather loudly, the HIV/AIDS epidemic is relatively silent.

  HIV/AIDS is made all the more extraordinary because of the intersection of its biological and social effects. “In truth,” Alcabes writes, “there is no clearly demarcated biological disease divorced from the social narrative of the epidemic. ... No matter how sophisticated our molecular virology is (and it is, today) the virus is only part of the story of the epidemic.” Dr. Chukwumuanya Igboekwu, known as Doc to his friends, would agree. His small organization, Physicians for Social Justice, operates in northern Nigeria to raise awareness about HIV/AIDS and provide services for people living with the disease. We first met in New York City on an unseasonably warm day for early March. I remember using my sweater sleeve to wipe away perspiration on my forehead after the brisk walk through a still barren Morningside Park and up the steps along its cliffs to Columbia University. Out of breath, I met Doc standing outside Nussbaum & Wu, a popular bagel shop and café, shivering in a large black winter down coat.

  “I need to go home,” he said. “Kai, this country is cold.”

  We laughed. His laugh was goofy for such a serious face, so much older than the twenty-seven years he had lived. He looks young, but his face appears thoroughly prepared for the most intense stress—a bus accident with forty casualties, a woman with a complicated pregnancy—and this gives him a sense of gravitas. After three years of friendship, I now understand. Since the age of twenty-five, Doc has been in a rural part of northern Nigeria, the lone doctor serving hundreds of thousands of people, whose language he does not speak and whose customs and religion he does not share. In his short career, he has seen nearly everything and learned to be prepared for anything.

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p; According to Doc, the spread of a disease is not just a biological event; it is also social. Our reactions to HIV/AIDS and our effectiveness at stopping its spread depend on preexisting social and political conditions that both inform and are informed by its presence in our societies.

  “I remember the case of one police officer, a sergeant, my friend,” Doc said above the buzz of conversation and spoons tinkling against coffee cups and pastry plates. “I didn’t see him for some time, so I started asking, ‘Where is this guy?’ They said he was not feeling fine. I went to his house, and when I saw him, I was shocked. He has lost weight. He couldn’t stand up again. I asked him, ‘What is wrong with you?’ The only thing he said is ‘Doctor, they said it’s AIDS.’” The policeman was in the end stages of AIDS, Doc told me. It didn’t have to get this bad, but the community’s ideas about AIDS had affected the progression of the police officer’s disease.

  Instead of seeking help, the sergeant had gone into seclusion because of his diagnosis, attempting to avoid contact with family, friends, and the community at large because of the negative opinions and community sanction that would result if people knew his diagnosis. Doc explained that he tried to mobilize for his friend, that he rushed to Minna, the capital of Niger State, about three hours south of where he lives and works, to get additional medicines like immune system boosters from the regional office of an international NGO, but it was too late. The sergeant’s illness had progressed too far.

  “By the time I came back, the guy had died. Just like that.” He clasped his hands together on the table and let them rest around the cup of tea steaming in front of him. I sipped from my own.

  “You know, I talked with his children.” Doc’s voice broke a little as he spoke. “Because later they came to collect his medical certificate. When I wrote the medical certificate for them, they didn’t let me say it was HIV. I just told them he died of immunosuppressive disease. I didn’t feel so bad because I was not lying outrightly HIV is an immunosuppressive disease, but somebody that is not a medical guy wouldn’t understand what that is. I do that a lot. There are some cases where they will not allow you to write HIV/AIDS. In fact, I don’t think I’ve ever written HIV/AIDS. I never write HIV/AIDS. I always put immunosuppressive disease. You can write any other thing. You can write heart attack, hypertension, but they will not be happy if you write HIV as the cause of death, AIDS as the cause of death.” The diagnosis of HIV/AIDS carries such weight that people are just as eager to avoid it in death as they are in life. No one wants to be a permanent outcast.

  The sergeant’s family left town soon after his death. When Doc urged the man’s wife to get tested for HIV, she refused.

  “Why did she not want to get tested?” I asked, almost involuntarily.

  The answer came later when I joined Doc in one of the rural northern Nigerian villages where he worked.

  Sahon-Rami is a remote village in predominantly Muslim Niger State, five hours north of Nigeria’s capital, Abuja—even at the speed Doc drives. He careened down the two-lane highways, passing large trucks when the road cleared, swerving to avoid potholes, and laughing as I gripped the passenger-door armrest in terror. He knows the roads well—where the police checkpoints usually pop up and when to hang his stethoscope from the rearview mirror so that the officers wouldn’t stop us and ask for bribes. As we sped further north, the signs of human life grew more intermittent. Vast open fields of scraggly bush, occasionally broken by a large tree or accumulation of boulders, stretched from the road on either side. Sahon-Rami is a small community in the middle of one of these open expanses. With a spread-out group of other hamlets, it forms the Mashegu local government area, population two hundred thousand, most of whom are Doc’s patients. Some of the areas are so remote that they are accessible only by motorbike. Even in Sahon-Rami, Doc joked, you need to climb a tree to get a signal on your mobile phone.

  Once we got settled in his small house, down the road from the clinic where he worked, Doc took me to the village square, a small clearing to the side of Sahon-Rami’s rough, red-earth main road. It was bordered on the other three sides by mud-brick houses capped with thatch or rusting corrugated tin roofing. A complement of tree stumps used as seats and smoothed by years of friction from the bottoms of villagers filled the otherwise open dusty space. Not far from us, little boys roughhoused in the meager shade of a bone-dry tree, climbing its branches in a diversion from the path between their lessons at school and their work in the fields. Little girls in various colors of headscarves walked one another home with much more order and purpose than their male counterparts. They stopped in groups before each low-standing mud-brick thatch-roofed house as their numbers slowly were whittled away. Here everyone knew everyone—indeed, many families were related by blood or marriage. Everybody also seemed to know everybody else’s business—who did or didn’t go to mosque, who did or didn’t pitch in for the community grinding mill (which spewed thick black exhaust up and over a thatch fence), the births, the deaths, and all the usual stuff of rural community life.

  It was here that I met Idris, a young self-proclaimed youth leader and community politician. Tall and lanky, he sported a red fez cap with a tassel he repeatedly waved away from his face. His long beige caftan had a ring of red dust around its lower hem. The same red dust covered his toes and leather sandals.

  “Here? Now? If we are suspecting either man or woman, if you are suspecting that they have HIV, no one will come closer to you,” he said when I asked him what people in the area thought about HIV/AIDS. “If you are a man, no woman will come closer to you. If you are a woman, no man will come closer to you. Everybody is afraid. You know community people now. Villagers—everybody does not want to lose his life.”

  I believed him. He seemed to know every inch of this community. Idris had to know this place. It was an election year, and he had spent countless hours on his motorbike or on foot traversing a vastness in which the politics, in addition to being about money, was about your family, your friends, and what they all thought of you. His community was small-village Nigeria, where the days roll over slowly and nothing seems to change.

  “I remember some years ago,” he told me. “One lady, they were suspecting her because she’s very lean and she’s always on bed—fever, all of this. We are suspecting maybe it’s HIV. They banish her. They took her away. I don’t know where they took her to. They only made sure she should leave the community.”

  He was evasive in answering my follow-up questions. What did she look like? Silence. Who pushed her out? “The youths.”

  Were you there? Silence—leaving me to imagine what a scene that might have been. What about her family, her protection? As I have been told, in some of these situations, the family is quick to abandon the ailing person. They give her a separate space in the compound, bring food and clear used dishes, but that is all. Conversation, a loving touch, reassurance—like health, these things all fade away in the face of HIV/AIDS. She would have been profoundly alone.

  “Where did she go?” I asked him.

  Idris was silent for a moment. He then said softly, “They made sure she should leave.”

  An older man overheard us speaking. He looked up from the prayer beads he was trying to string back together. He picked each one off the ground and threaded it down a long black piece of rope. Beads fell from the other end when he diverted his attention.

  “Nobody can tell you that he has it,” he chimed in. “If people knows that he has the disease, people will try to isolate themselves from him or her so that the disease will not be transmit.”

  This isolation that Doc, Idris, and the old man describe is the result of the unique stigma associated with HIV/AIDS. In his seminal work Stigma, the sociologist Erving Goffman defines stigma as a trait that can turn people away, an “undesired differentness from what we had anticipated.” He argues that stigma comes in three distinct but related forms: abominations of the body, perceived blemishes of individual character, and the stigma of race, nation, or
religion. Abominations of the body are physical deformities that set one apart. Blemishes of individual character are alleged moral, mental, or emotional flaws for which a person receives societal condemnation. Finally Goffman considers the stigma of race, nation, culture, or religion to be the result of inheritable traits that can be passed along and shared as a result of affiliation.

  Stigma has enjoyed a lasting relationship with disease. In general, disease usually associates the carrier with one or perhaps two of Goffman’s three manifestations of stigma. For example, the lepers of biblical and medieval times were cast aside because of their unsightly bacteria-eaten flesh. In the present day, heart disease can sometimes be a stigmatizing illness because it is associated with gluttony and sloth. The stigma of HIV/AIDS, however, is more profound and complicated because it combines all three categories of stigma and so brands the victim and associated community not once but three times over.

  If abominations of the body are a form of stigma, then HIV/AIDS in its end stages causes plenty. Most of my exposure to the stigmata of HIV/AIDS occurred while I was on the AIDS care team at Columbia University during my third and fourth years of medical school, and I would often find it hard to observe the physical deterioration of some of the patients we cared for. I remember one woman who suffered from persistent and painful Candida fungal infections of her mouth and throat. Each morning, despite treatment with antifungal mouthwashes and scrubbing with a toothbrush, she would have a thick white film at the back of her throat, on her tongue, cheeks, and lips. Another patient I helped to care for came to the hospital with the multiple itching, oozing sores of prurigo nodularis, which can sometimes occur in patients with HIV. These lesions made it impossible for him to lie comfortably in bed, so he squirmed and scratched constantly, picking at old scabs and opening new weeping wounds that glistened in the harsh overhead light. Other patients I saw suffered from persistent diarrhea or the AIDS-related cancer Kaposi’s sarcoma, which can cause disfiguring red tumors to form on a patient’s skin. They were clearly marked by their illnesses in ways that were hard to ignore.