Keep It Simple

My time here in South Africa has taught me to find joy in the most simple of things. Like African sunsets...


and monkeys crossing the road on power lines...


With these joys in mind, I have lots of progress to report from the Blue Roof! Home based care began our outreach to patients last week in our new vehicle! In addition to providing home care to patients, our home based care workers are going to use the vehicle to trace patients who have defaulted from treatment, in hopes of getting them back on their medication, and possibly identifying them as a patient in need of home care.

I joined the home based care workers in the field on Thursday, and it was eye-opening in a number of ways. Thulani drove, and Audrey, Brenda and myself went with him. On the ride there, Brenda commented on me collecting CVs from everyone in the clinic, which I have been doing the past week or so, because Human Health Development Trust needs them before they can begin training our team on TB-DOTS, HIV/TB counseling, and home care. Brenda explained to me that nobody had ever asked them for CVs before, and they were so grateful, because it shows that we care what their background is, what their skills are, and that we value them as Blue Roof employees. I honestly thought I was being a nuisance by asking everyone for their CVs, but apparently, in some way, they felt empowered by the ask. I have to keep this in mind as I move forward in my work here – sometimes the simplest things can make a significant difference. Most of my work is focused towards making things bigger and better at the Blue Roof, and while this is a good goal, I have to remember that it doesn’t always have to be big to make an impact. The big things will come, but there are plenty of little items to take care of along the way, that will also be helpful to the clinic’s growth.

The first three patients that we went to see in the home based care vehicle were “defaulters,” patients who had missed their doctor’s appointments or failed to pick up their medication recently. We found that the first patient we traced had passed away almost a month ago. We met with her mother and father, and one of her sons left behind. It is difficult to speak to anyone about a family member who has recently passed, but what makes it even more difficult in this situation, is often the family will not know that their mother/sister/father/brother/son/daughter had HIV. Therefore, the home based care workers have to tread carefully in their approach to our patient houses. It is one thing if they are expecting us because they have requested home care, it is quite another if we are just checking up on them because we have not been able to contact them. We had brought monthly food parcels with us, so we left a food parcel with each of the families we visited. I talked to the home based care workers about how I wish there was more we could do for the families after our patients passed, because right now, when we find out that patients have passed, there is nothing more we can do than offer our deepest sympathies.

I discussed this idea with other members of our staff, and was reminded of two very good points. Firstly, the mission of the Blue Roof Center is to provide the life-saving AIDS medication and surrounding care that people in our community need to survive. Our patients and their families are all a part of the Blue Roof family, and so it is natural that we want to continue providing support to patient families even after the patients pass. However, there is so much development that still needs to happen with all the programs that we are already running, and thankfully there are outside organizations that are already set up to address the family's needs after death. Secondly, the Blue Roof Center is a place that people come to in hopes of staying alive, and it will perhaps give the wrong impression if we begin offering grief counseling services or such to families who have lost their loved ones. It is important to recognize that death is inevitable in the line of work that we do, but all Blue Roof programming must stem from our central mission: keeping people alive.

I am developing a thicker skin for when my ideas bounce back at me. It is to be expected that not everything I think of as a solution here will work, and that not everything I think of doing will be well received by my colleagues at the clinic. I think I’m also just used to a different dialogue of ideas, where someone suggests something, and we build upon that idea, developing it until it becomes something we can use. I’m realizing though that any resistance I encounter can be constructive, and it is all part of the process of trying to make strategic change in a foreign country. I am still working on finding the balance between where I can push for change and progress in certain areas, and where I must learn to just let things be. I am so appreciative of the input from the Blue Roof staff, who are more familiar with the clinic's operations and the local community mentality than I may ever be, and they are helping me so much by filtering my ideas to identify an effective platform for change.

I think just the fact that the home based care workers are going to be tracing defaulters, many of whom we may find have passed, is actually enough. The two families that we visited on Thursday were so grateful that we even stopped by to check in on their family member who had recently passed, and we were even able to give them food parcels as well, and they were most appreciative.

The third defaulter we traced was a patient who lives in a tin shack in Malagazi, outside of Wentworth. She looks around my age, and she has just recently given birth to a baby boy. We were happy to see that she is alive and well. She said the reason for her missed appointments was because she could not get transport to the clinic, but she had arranged it for Monday, and would see us then. It was shocking to see all these tins shacks clusters in Malagazi. Her shack is about the size of my bedroom in my old St. Marks apartment, for those of you who can recall (I think the dimensions were 10 ft by 11 ft). The ceilings are low though, 6 feet maybe, and no windows. She lives in this space with her mother and new baby boy. We were able to give her a food parcel, for which she was most grateful, but we were left wanting to give more. I am going to work on getting a more readily available supply of clothes and linen and basic necessities that we can provide to our most needy patients. We can have a supply closet in house to provide items to patients at the clinic, and our home based care workers can also bring a stock of items with them to give to patients as they see necessary.

The fourth patient we visited on Thursday is actually not a Blue Roof patient yet, but his family is working on transferring him to the clinic soon. He has full blown AIDS; he is literally skin and bones, and shaky to the core. He is probably in his mid-40s, but you can’t tell his age by looking at him right now, because he is just so skeletal. And you could tell he was uncomfortable having the three of us girls there in addition to Thulani, so we excused ourselves so Thulani could bathe him. While we were waiting in the kombi (the local term for van), we spoke to his daughter who is his primary caretaker. She is 23, but she looks about 16. She wants to go to university for fashion design, but for now, must continue working and seeing to her father’s health. He has clearly been sick for quite some time. Apparently he took a turn for the worse in November, and has only been on ARV treatment for the last few months. Brenda and Audrey commended his daughter for her strength in handling the situation, and while I can only imagine what it takes for her to see her father so ill, and to be the one responsible for his wellbeing, I understand the strength she shows. It is incredible how the most terrible heartbreaking things in life can become so normative when you are constantly faced with them. After a while, it’s not so shocking any more. I exchanged numbers with her and told her that she should do her best to take care of herself in the midst of everything. If you don’t take care of yourself first, how can you expect to take care of anyone else?

The home based care workers finish their workday at 2pm, and we returned to the clinic just in time. Then, Thulani and I had drove quickly to Wentworth Hospital (which is just down the street) to drop off the second round of bloods for testing. It is incredible to see the difference in mere appearance between the public hospital and the Blue Roof. The hospital is old and dark, dingy and rundown, a far cry from the Blue Roof that is so warm and welcoming. Again, the simple things can make such a difference. The new Blue Roof building is filled with light and brilliant color that uplifts the spirit when you arrive, which is so important, especially when people are so sick. And in the context of HIV, it is even more important to provide patients an environment where they can find hope in the light, in the colors, in the greenery, and in the company of people who are doing everything possible to keep them alive.

Wentworth Hospital

The Blue Roof was blessed last week with friends in the community and patients volunteering their time and talent to help the clinic’s programs continue to grow. I also met with a number of Rhona’s friends from the community this week who are interested in helping the clinic fundraise and get items we need most urgently, like furniture, donated.

Construction of the new kitchen has finally been completed, which means we can begin providing hot meals to our daily patients! Last week, we started by making samp and beans - a mix of grain, beans and veggies that’s high in protein and a hearty meal for our patients. One of Rhona’s friends from church has volunteered to help prepare hot meals like this three days a week, and we also have a patient here who has express interested in helping cook as well! Our community garden is growing and thriving, and we are already preparing to use some of the pumpkin tops as spinach in patient meals this week.

Samp and Beans

Another of our patients, Nicol, started volunteering her time to work with me and the youth program last week. I am so grateful to have her involved! Just having someone else on my side to communicate things to the kids I think is going to make an enormous difference. I know I am working on creating these bigger empowerment initiatives, like physical fitness, income generation, and so forth, but what I’ve learned time and again this week is that even the little changes are making a difference. Nicol is going to be such a huge help to me by volunteering her time with the youth, and she feels so empowered by the role at the same time. She told me that now she feels even more so that she can indeed beat this disease, and it means so much to me to be a part of that.