home visits

so, my job at fbs is not very defined. this fact has resulted in confusion, frustration and boredom at times. however, it also allows me more freedom to choose how i want to spend my time. this last week was really exciting as i got to accompany the home based care coordinator, make ndzimandze, on home visits.

i really love getting out of the office, and getting to see what the every day experience of living with hiv/aids is like. it's such a privilege to be able to enter someone's home, sit down at their bedside or on their couch or outside on the grass, and listen to their story. i've probably been on about 15 visits so far, and there's been such a range of everything: ages, severity of symptoms, level of wealth, friendliness, family situations... it's just helping me to realize that the hiv virus is just a sickness, like any other disease. people live for years with it, and many people are still going about their daily lives as before, keeping their status a secret - if they even know it themselves. most of the patients we saw were unable to work though, and stay at home, some of them confined to bed and too weak to even walk.

i've learned some of the warning signs, so that i'm beginning to be able to guess who is positive before they reveal it. the open sores on the legs and feet, that attract buzzing flies that the patient is so accustomed to that they don't even bother to swat them away anymore. the white tongue, a symptom of thrush, which coats the whole digestive tract, weakening the taste buds on the tongue to suppress the appetite, and lessening the ability of the intestines to extract needed nutrients from food.

many of the patients have another condition as well as being positive. one of the most common opportunistic infections to accompany hiv is tb. the amount of drugs patients need to take for this is ridiculous. at one patient's house, a soft-spoken, bed-ridden young man, he reached to his bedside table for a box containing 10 different packets of pills. managing this cocktail of drugs when you barely eat in a day is a challenge. there's an equally staggering number of drugs in the combination of antibiotics and vitamins given to prepare the patient to receive anti-retroviral drugs (arv's). many of the people we visited were at this stage. this treatment is supposed to get rid of any infections and strengthen the body before beginning the arv treatment, which is very harsh on the body.

however, the sad thing is that many people get to this stage, their bodies get stronger and they feel much better, and since they don't feel sick, they don't go back to the hospital to get the arv's. then after a while, their bodies will get run down again, giving hiv more of a chance to reproduce and get stronger. the arv's function to keep the virus at bay, allowing the disease to exist in the body but stopping it from reproducing, which allows the body to gain back strength and function as normally as possible.

there are also people that know they are positive, and so they go to get tested for their CD4 cell count. these are white blood cells that fight hiv - here they're called emasolja (soldiers). but then they never go back to get the results of the test, and without knowing your CD4 cell count, you can't begin treatment for arv's. the government will give you arv's once your count drops below 200. a healthy count is roughly 1500 - 2000.

so i've learned a lot from these visits, as you can see. all of these details of hiv are things that i probably read at some point in a textbook or magazine article, but could never manage to remember. how easy it is to recall them now that i've visited person after person whose futures depend on these numbers! my teacher has been make ndzimandze, a retired government nurse who is now the hbc coordinator at fbs. her wealth of knowledge about hiv, nutrition and basic healthcare combined with her huge network of relatives and acquaintances and her friendly and caring personality make her the perfect person for this daunting job. i feel so lucky to be able to have such a wonderful companion on these difficult visits.

the visits are mostly to homesteads in rural areas, and are conducted entirely in siswati. this has been excellent for developing my siswati. it's so rewarding that i am now able to follow the general gist of a conversation. then afterwards, as we head to the next patient, i get the details and explanations from make. at times my language "handicap" is also an advantage. we visted one middle-aged man who greeted us from bed as his relatives showed us into his room. however, as soon as the interview started, his family and even another care-giver who were accompanying us were required to get up and leave the room. he was positive, but had not come out to his family yet, and so the meeting had to be confidential. i tried not to let on how much i understood of the conversation, looking around instead at the magazine pictures that plastered the walls.

out of all the patients i've seen so far though, ncobile (i changed her name) stands out in my mind. she welcomed us into her one-room apartment that she shares with her 12-year old son and her grandbaby. she looked far too young to have a grandchild. she had received a food parcel from fbs last month, and expressed her warm gratitude for the gift. as she began talking though, her beautiful big eyes filled with tears and her thin frame bent over with sorrow as she told us her story. her first child is a daughter, who at 12 years old had been raped by an uncle. because of this, they left their family home and went to live with some friends in a nearby town. here, the daughter fell in love and had her child with one of the young men from the family they were staying with. however, she then left him for his twin brother, which caused hard feelings in the family and they had to move again, to where they live now. the family also denied any responsibility for the child. the mother, ncobile's daughter, now works in another town, living with another man, and her mother only ever sees her when she's drunk and needs money. however, ncobile has nothing to give her, and can't afford to send her son to school, rent her flat and feed the three of them. she hates the thought of it, but is looking for an orphanage for her granddaughter, since the child's mother doesn't take any responsibility for her. ncobile used to take in sewing, but she is hiv positive now and has been unable to work for a long time. last week when she went looking for work, she found she had lost all of her old customers. they hadn't eaten anything yet on the day we visted, at 2 in the afternoon.

i caught this story in bits and pieces, and sat there in silence, watching her cry as she held her granddaughter on her lap, who was also crying. make and i listened to her story, which spilled out as if it had been bottled up for a long time. at the end, when make asked me to pray for ncobile, i didn't even know what to pray for. i don't remember what i said, and i couldn't think of anything to say to ncobile as we walked out the door. i could only think to give her a hug, but couldn't even express my full sympathy and love in this way because she felt too frail to squeeze very hard. back at the truck, make and i dug into our purses for enough money for a meal, and when we left this with ncobile, she smiled and waved as we pulled out onto the road.

in the truck, i had no questions for make this time, and i thought that maybe she would be used to the emotional stress of home visits by now. but make, normally very chatty, was subdued, and said only, "this is why i hate home visits." we talked about providing help for school fees for ncobile's son through a partner organization, and make said she knew of a good christian orphanage that she would look into. this was the first home visit of the day, and i very much just wanted to curl up into a ball on the seat and not face the world for a little while.

however, we still had a list of patients, and so we pulled up in front of edward's (name changed) house. this was the third time we had come; the previous two times he wasn't there, and we'd been informed by a neighbor that he was visiting the neighborhood beer hall. but he was perched on a stool under a tree with his brother. edward was a tiny, wrinkled, little man, who had a sparkle in his eye as make lectured him on eating spinach and peanut butter to give him good protein. edward gave me hope again though, because on the last visit he had been very thin and weak due to malnutrition. fbs had given him a food parcel, and you could clearly see the result, this little man sitting quietly, but showing definite sparks of life. as i sat there under the tree, looking out at the vibrant green bean field stretching down the hill side, i felt like i wanted to continue to hear people's stories, even the difficult ones. even though they don't all turn out like edward.