Listening to Those Who Live It
Death Stories
What Does It Mean to Die of AIDS
When someone "dies of AIDS", how exactly does she or he die? Who was supporting her during her last days? What treatments was he using? What illnesses had she had? What were his care providers doing? Who are they? Was she alone? Was he able to eat? Did she have any food in her kitchen? What were the available care systems doing for him? Had she given up and let go or did she really want to stay alive? Nothing puts our attempts to save life and our failures to do so more starkly into focus than these stories. When we learn that this positive infant "failed to thrive", what exactly does this mean? How was her condition, her home environment, her support system, part of the story of her death?
Stories of Death
What does it mean to "die of hunger and neglect," as did Fatuma, one of our friends from Mombasa, Kenya? How could this have happened? Fatuma had been positive for over ten years, until very recently doing very well using herbal medicines and trying to eat well. Six months before her death, Fatuma went on ARVs. She quickly went into decline and her family abandoned her. She could not work, so she had nothing to eat. She died alone, her four children frightened to go near her and her mother-in-law refusing to take her in. Her care provider says Fatuma "died of hunger and neglect." What does this really mean?
Then there is Eunice, using herbal medicines successfully for years. Eunice was happy, healthy, and strong one day, in a coma two days later, and dead the third day of no obvious cause. Or Emma, who at the time of her death was on TB drugs. Her chest pain and malaria were chronic, but there was no indication before her death of any new condition or infection. What happened? Her nurse believes she "died of malnutrition and stigma." Or Njeri, who learned of her status during her pregnancy, five months after her marriage? Njeri's husband emptied their matrimonial home as soon as he learned of her status. All she had left was her wedding ring, not even a bed or stick of furniture was left. Her sisters came to care for her, but she quickly developed pneumonia, bedsores, and meningitis. She just told everyone who tried to help to "Leave me alone."
What Can We Learn?
Is there anything that could have been done to save these women? If so, what, exactly? How much of this is about the right medicines at the right times, and how much of it is about other kinds of support and care? What do our cultures have to offer? How do our death stories differ from community to community, from country to country? What can we learn from this? Can we say anything definitive about those who die within six months of initiating anti-retroviral therapy? Can we say anything about positive children and the ways they pass away in one community versus another community? One household versus another? What are the patterns we can see and what are the ways in which we might better anticipate or address them?