IN rememberance: BJW 1981-1997

Bryan, I can't believe it has been 13 years since you left us.

In the days after, as we clung to each other, holding on, wiping each other's tears, you gave us a final gift. Nothing else mattered - just holding onto the precious, delicate, gifts of life in each of us.

Bryan, as it has been 13 years, I pray I remember that gift today, in honor of you.

A post about a San Diego experience

Today was a long day at work.

Made longest by a very difficult family meeting. A woman who is terminally ill, who has cancer in every cell of her body, and bleeds in her brain. A fight, civil, but ready to explode between 2 players. A husband who wants to keep "fighting" the cancer (despite the fact that there is no treatment left), and refuses to see that she is dying. A sister who is tortured by her sister dying, but believes they cannot fight the inevitable, and that her sister wouldn't want this much medical care at this point - she would only want to be comfortable. I happen to agree with the sister, that we torture people too much at end of life, because we live under the illusion of invincibility, but that is besides the point here.

The sister's thoughts and actions were so full of grace and beauty that I was brought to tears and was thankful for a break of truth in my day. Despite her brother in law yelling at her in the meeting, saying she was killing her sister, that she was not respecting her wishes, she retained her composure, did not engage in argument, and kept her cool, although I could see behind her eyes the hurt and anger. When we finished the official part of the meeting, she told us that she didn't want her sister to die and leave her, but she felt they had done everything they could do, and now it was time to let her go. She said that her sister is a strong believer in Jesus, and she knew she would meet him soon. She said that she just wanted her sister to feel the love of their family in these last days of her life - that love was kind, and gentle, and that it drove out fear. And that she knew her sister already experienced this kind of love in Jesus. That in experiencing love, she would not fear death. It was so profound and wonderful.

I loved that in the middle of a difficult, chaotic day, where I doubted my own skills, my own leadership, where I doubted humanity, that God gave me a reminder of the beauty of who he is.

Some thoughts on Cape Town and how it fits into my impressions of south africa

A few posts ago, I talked about how South Africa was super segregated, was a culture of the conquerors and the conquered. And I still stand by a lot of those views, but my visit to cape town definitely gave me a different perspective on South African race relations.

In Cape Town, you see biracial couples and children everywhere. Moreso than in the US. I was confused to see that in comparison to what I had seen on the other side of the country. They even have a name for people who are half black and half white: “coloured” (and it is not a derogatory term there). As I went to a few museums and learned more about the history of cape town, I was even more fascinated.
It seems that in cape town, back before apartheid came to play in the 50s or 60s, that white and black people lived together in relative harmony (not to overpaint it as all peachy keen, and I am sure people stuck to their own, more or less, but people interacted and lived in each other’s neighborhoods). Then, when the government passed the district acts, the whole city was torn up into districts which were labeled as “black” or “white” or “coloured.” In one famous district, district 6 (where there is now a museum), black people were forcibly removed from their homes, and the homes were bulldozed, because it was zoned as a “white” district. And the forcible separation of people definitely created more tension between them. As I was in the district 6 museum, looking at pictures of pre-apartheid era in district 6, I was shocked to see sports teams, social clubs, etc, with a mix of black and white people.

As I took all this in, I was thinking, “can I be interpreting this correctly? That people of different races and cultures were living in harmony, socializing together, intermarrying, until the government came and messed it up?” So foreign to me, as I felt like our experience in race relations is so different/opposite in the US. As I walked around and read more, it seemed that that was more or less the case (without sounding too extreme or making it that simple). I know that now in cape town, people mix, but there is still racial tension and inequality, and I am sure there was some pre-apartheid as well.

That said, I was trying to take in why it was so foreign to me that different races would so easily. IN the US, so much violent crime and hate has focused around racism. The government has had to intervene to DE-segregate. But here, African-Americans arrived as slaves, arrived captured, so from the start, there presence was brought with it a sense of inferiority and power balance. In Cape Town, whites invaded into black territory, I am sure there were years of turmoil and tension and power struggle, but somehow they worked it out…What makes that difference? What makes people learn to get along? Is it breeding? Cultural training? Or do we all secretly want peace around us, and as the historical conflicts and power struggles of government and society fade away, we are allowed the freedom to see that as a possibility? Big questions I really can’t answer… And I don’t think anywhere in the world has completely abolished racism. Sometimes, in the US, I wonder how much racism has changed. We are in an increasingly mixed society (and mixed world for that matter), but do we just push racism below the surface so we can be “PC” and appear “civilized?”

It is also interesting to me that the race issues and segregation seem so different in South Africa based on your province (as previously described my experiences in Gauteng and Mpumpalanga provinces). Maybe it isn’t that different than here? That race issues might be different if you lived in Alabama or California or Michigan? And I just wonder if no matter how you got to where you are, no matter how the government has been involved or not, is the end product the same?

If anyone has any answers, let me know (just kidding).

Back in the states...

I have been back one week now, and jumped right back into things.
An emergency last minute site review the day I got back, then starting on wards, 63 hours in 5 days, barely time to think or sleep.

I am not sure how I feel. Rushed back in so fast I didn’t have time to feel. Today was my day off, and I think I feel a little displaced. I have enjoyed reconnecting with friends, taking care of patients more directly, but definitely something in me feels different. I feel like Africa changed my subconscious if nothing else. I went to target today to get some necessities. Normally I like to wander in target, spend a lot of time, and normally spend too much money. Today, no desire. It’s weird, I am not directly thinking about Africa, thinking about the things I have seen, but somehow my subconscious is different.

I have been having dreams about people in Africa. In my dreams, I am crying for them, my heart is breaking for them. I wonder if in sleep, when I am allowed to let go of the day, I am connecting more meaningfully with my emotions. Am I mourning for Africa?

I spoke with my dad today on the phone, for the first time since I have been back. As I talked about Africa and the things I had experienced, and my perspective, I realized something else that struck me about the whole thing…The country is losing it’s young. The young are fatally ill. This is so strange to see, I don’t think I was able to put words to it before. It’s this disease that starts so insidiously, so slowly, that nobody knows it is happening, it is ignored, until Boom, you are in the hospital, critically ill. Too often it is not caught in the early stages because people aren’t testing. The highest group that is getting infected is those who are in their teens and 20s. Normal development at that time states you are invincible, you take risks, you experiment. And the consequences of experimentation are ignored, because still, you believe it can’t happen to you.

How dermoralizing, during the phase of your life when you are “invincible,” to be grounded and incapacitated! And how strange to see the young generation die, while it is being ignored.

One woman comes to mind when I think of this. She was about 22, and was hospitalized for life threatening infections due to AIDS. She was thin, gorgeous, high cheekbones. If I saw her in a different context, I would believe she was a supermodel. She lay in bed, her excrement all over her gown, because she couldn’t control it anymore. Her mind was still all there. My mind struggled to adjust to this picture. A 22 year old, with bright eyes, a beautiful face, and so much potential. Incapacitated, dependent, out of control of her body. Things like that aren’t supposed to happen until you are elderly, and even then I imagine it is quite demoralizing. How can a country see it’s young people, it’s potential, it’s future, it’s work force, die off one by one, and stand idly by? I have heard the phrase “the missing generation” to describe the countries where AIDS has ravaged. Now there is a picture in my mind to give a story to that phrase.

One more person whose story I must document.
Enos was my cab driver coming back from the airport when I returned from the Port Elizabeth conference. He was very friendly, and open about his life. He was from Limpopo, which is the province north of Gauteng province (where Pretoria and Johannesberg are – it is the smallest province, but the most densely populated). His wife and 4 children were still in Limpopo, but he had had to move to Gauteng for work, as there was not enough in Limpopo. I asked where he lived in Pretoria, and then wished I hadn’t. He named one of the townships – acres of land that are essentially squatter camps. Miles and miles of corrugated tin sheds that people set up and live in. No running water, no electricity. He lives there while he works, and his 2 days off a month he goes to Limpopo to see his family. This story is not uncommon here. He spoke of his youngest daughter, how smart she was, how good in school. His eyes lit up with pride when he talked about her. He said that she was sick that day, and his wife had had to take her to the doctor. He said he knew it was probably something minor, but it was hard being away when you knew your child was sick. This story broke my heart. Here he is, a man driving foreigners in this Mercedes to and from their destination, at night he returns to his shed where he is missing the comfort of his family. This story is not uncommon, and I admired this man for his strength of character. For doing what he had to do to support his family, for his love for his family, and his desire to be with them. For the pay-by-the-minute cell phone he had so that he could call them every day.

Now that I am back, I am not worried about forgetting. I am sure I will get more used to the luxuries of my everyday life, stop feeling guilty about them, and getting back into the groove. But I have realized now that there is no way I can stop doing international work. I don’t know what this will look like in the future – if it will continue in Africa, or in Latin America, if it will be long term, or a month at a time. But I can no longer imagine never doing it again, or putting a big part of myself into it.

A quote from today...

"Strangely, the foreigner lives within us: he is the hidden face of our identity, the Space that wrecks our abode, the time in which understanding and affinity founder. By recognizing him within ourselves, we are spared detesting him in himself. A symptom that precisely turns 'we' into a problem, perhaps makes it impossible. The foreigner comes in when the consciousness of my difference arises and he disappears when we all acknowledge ourselves as foreigners." -Julia Kristeva.

An appropriate quote to think about as I spent the day learning about south african history and seeing it expressed in art.

Last day in Pretoria

Today I leave the “work” part of South Africa. I will spend a few days in Cape Town for my “vacation” time, and then fly back to the states.

As I am packing up the studio, I am feeling a little choked up and teary for sure. And needing to record, for the final time, some of my thoughts about South Africa (I expect that when I get to cape town, it is going to be a very different experience than it is here).

South Africa is a country of great contrasts. It is a country of great diversity, but that diversity seems polarized. Half the country is living in wealth, in areas that you would not be able to tell are NOT in the United States, and half lives in abject poverty. You can drive just a few kilometers and go from seeing gorgeous, mansion-like houses, to viewing the “townships” – basically squatter camps where people live in shacks with corrugated tin roofs, without running water or electricity.

In addition to the divide between rich and poor, there is the divide between modern and traditional. Parts of South Africa have very modernized medicine, yet many patients still mix this with traditional medicine men/women. There is an advanced system of roads and freeways, yet you often find to get to the poorer people you are suddenly on dirt roads. Many of the people in South Africa have cars, but the majority of the people in the lower socioeconomic class still walks to work (or rides in packed vans/backs of trucks). And as you are driving down the freeway, you may, in the same line of vision, see a brand new, luxurious BMW driving, as you see a woman walking, in traditional African dress, balancing her load on her head.

I love that there are still glimpses of the traditional culture here- the way women wrap their heads, the way they carry their babies, the way they carry their loads balanced on their heads, and I hope that these things are not lost if the economic divide begins to shrink (IF it does, I am being a tad optimistic here).

The country is one of the conquerors and the conquered, and you see evidence of that everywhere. First, there were the native blacks. Then the Dutch, who colonized cape point (and somewhat drove out the blacks) when they were looking to create a stopping point for the ship lines of the Dutch India Tea Company. Later, the British colonized this point, and drove the Dutch further inland. Isolated, and second class citizens, their dutch developed into its own dialect, “Afrikaans,” and they developed their own isolated culture. In their own minds (and probably in the structure of society at the time), they were inferior to the british, yet superior towards the blacks. So everyone lived in their own, enclosed communities, with their own rank in mind, and their own structure of society.

Then, in more recent years, with the ending of apartheid, the black culture is being again recognized. Town names are reverting from their Afrikaans names to African names (which honestly, is a bit confusing when you are driving somewhere, and trying to keep your directions straight. They don’t label their freeways north/south/east/west here, it is labeled by which city you are going towards). These constant changes continue to give one the impression that the power structure is constantly shifting – the conquerors and the conquered.

It seems that little has changed in this segregation. The neighborhood in Pretoria where the UCSD studio is located, is largely Afrikaans. Gorgeous homes, yet each is enclosed by automatic gates, topped with an electric fence. Security guards patrol the streets. And in between the locked fortresses, black people roam – going from job to job, selling brooms, etc. And I wonder – how must that feel to be a black person wandering the streets, distanced from homes by electric fences – is the implication that the Afrikaaners are trying to keep them out? Yet they are let in for short periods of time to clean or garden. It is so striking to see, and so disturbing. One of my co-workers said something to the effect of “the racial tension is so dense and near the surface, you feel like it is going to break out at any second.” Although I feel that is a tad dramatic, I know what she means. People are civil to each other, but live in their own isolated bubbles, with visible structures to keep it that way.

I don’t mean to over-generalize and say that there is no mixing between cultures, or that every black is pushed down by the man into a lower socioeconomic status. There are plenty of black African physicians, some of whom work in I-TECH, but even in that, I sense a cultural divide within the company. Not even necessarily a hateful or prejudiced one, but definitely people coming from completely different racial/cultural worlds, and sometimes not knowing how to interact or communicate effectively with each other.

There is also the “coloured” race here- further evidence of mixing. Here, “coloured” is not a derogatory term, as it may be in the United States. It is a description of a “new race” – people who are half white and half black. Almost as the “mestizo” or Mexican people group developed.

But yes, certainly a mix of things, certainly a country of contrasts. Makes you feel a tad schizophrenic while you are here, not being able to reconcile the 2 worlds you are seeing.

A Single Thread...

There is a little boy I can’t get out of my head. I saw him one afternoon at an extremely rural clinic on the paper mill. The nurse there asked me to see him because she was uncomfortable treating children. The boy was 6, HIV + since birth, never on medication. He was being seen in clinic that day because he had been exposed to TB at home, and they were concerned that he may also have TB.

The boy walked into the clinic behind his grandmother. She looked exhausted, worn down, and hopeless, the child looked downcast. From the door, I could see his cheeks puffed out bigger than they should. When he came in, I realized they were his greatly swollen parotid glands (saliva glands at the back of your cheeks). I examined him and found evidence that he has had lung disease for years…Likely not getting enough oxygen for a long time. I evaluated his chest xrays, one from 2008, one from a week before his visit, and confirmed my suspicion that he has had lung disease for some time, likely secondary to his HIV. I also suspect he had TB.

I told the grandmother we were going to have to treat him for TB, and about 2 weeks after that, we were going to have to start him on antiretrovirals. She sighed, and her face fell further, if that was possible. She admitted she was overwhelmed. One of her daughters was dead, one was hospitalized a day before with advanced AIDS complications, and she was left to care for all the grandchildren. As I talked to her further, she noted that she had another 7 month old baby at home who had also been abandoned, and likely exposed to TB. She sighed and said she would walk home and get the baby, so we could check him out as well. It took her about 30 minutes to walk there and back with the baby. In the meanwhile, the 6 year old sat with us. He stared straight forward, face expressionless, nothing we did could make him smile. How many 6 year olds do you know that can sit still without entertainment for half an hour? It broke my heart, and made me fear his young spirit was already broken. His deep, wide, dark eyes seemed that they had already seen much darkness and disappointment, and this had aged him. Finally, Vivian found a mint in her purse, and offered it to the boy. He took it and put it in his mouth, and I thought I saw a tiny smile as he sucked on it. It encouraged me to see a little light back in his eyes. I can only hope that as he receives treatment, he will have somewhat of a new beginning; that as his health improves he will feel life returning to his body and have hope for his future potential. Sadly, I know his health is not the only obstacle he must overcome.

A day later, we visited his mother in the hospital. She had the same wide, dark eyes, sunken with the pain and what she has seen. We updated her on her son, and a bit of worry crossed her expressionless face. Towards the end of our conversation, she suddenly perked up and demanded to be put on antiretrovirals. She had been refusing them in the past, and I think her hospitalization and the sickness of her son made her want to take control of her health. Again, my cautious optimism made me hope that she would follow through so that she could take care of her son, and not become another thing to fail him.

As I mentioned in my previous post, I am struggling a little with knowing in a week I will have to transition back to a completely different world. I thought about this as I took a walk around my neighborhood in Pretoria this afternoon. Although I have never done anything quite like this before, I have definitely had experiences where I have gone out of my comfort zone and had a difficult transition back. And I think I need to remember that every experience is a part of the bigger picture of our lives…And that in the short term, it is sometimes hard to see how a short term experience will fit in to the bigger picture. But it always does. Every experience leaves impressions on us and ultimately becomes seamlessly woven into the whole – as much as we feel so fragmented by our experiences in the short term.

So I hope and pray that as I leave, I will not feel fragmented or disillusioned or disconnected. I pray that I will have faith that this trip has been another thread in the story of my life, and as it continues to be woven together on the loom, this thread will also become woven in, and become a part of the bigger design.

I am deeply grateful for this experience, and humbled by it. I know I am changed, and I hope that I will stay changed, and not forget the lessons I have learned. I hope that this experience will become integrated into the person I am, that it won’t have to be compartmentalized or sequestered or become isolating.

"Home"

I have one week left of my time in South Africa.
I spent my first week or 2 here crying, feeling so homesick, aching to come home. Then week 3, there was a transition. Something changed, shifted in my brain, almost as if something had permanently remodeled so that I am no longer able to think the same way. Now I feel I will have a hard time coming back.

I think the thing I struggle with here, is that I am in, and not of. I have worked every day with now 4 different tribes of people, with 4 different languages, and me struggling through understanding their culture and trying to communicate effectively in the things that are not said. I have been so touched by the people here, so humbled by their experiences and stoicism…Despite this, I am definitely still an outsider. So many times I have wanted to take a child into my arms, to hold them in their loneliness…I have wanted to reach across the huge cultural lengths with my adult patients and tell them that deep down, despite our experiences, we are the same…But I am definitely still an outsider. And honestly, I am still much more comfortable in my own cultural setting…It is hard to see so much pain, concurrently so much beauty, to want to reach in, and to still be so distanced.

At the same time, I feel that something in me has shifted and I don’t know that I will still be “of” home when I get back. I now feel removed from my home culture. And I am just anticipating not adjusting well to being home, not fitting back in. And part of that doesn’t make sense to me. There are people at home that I love and miss and why wouldn’t that itself be something to make me fit back in, to feel back at home?

I feel between two worlds, not fitting in either, and it feels lonely.

I struggle with the concept of “home.” There was college and starting to feel at home there, starting to develop a community and friends. And then I moved to Detroit very quickly. Same thing in Detroit, struggled to fit in, find a place of belonging in a really temporary job where you are constantly re-learning, switching things up, and never getting into a groove anywhere…And started to develop community there and feel at home, feel passionate about the location and my integration there, and then felt called to San Diego.

I was really excited about San Diego, especially as I grew to love it and develop community. And I had more of a constant group of coworkers and work situations (although of course, I pick a dual specialty which causes more switch ups and making it harder to feel at home). That said, I bought a home, it was exciting to develop community, to love the place of San diego, to love the work I am doing, to love to feel integrated into the world around me. Exciting to think I could stay there after residency if I got a job…That I wouldn’t have to necessarily relocate and throw up my whole world again. Finally, was starting to feel at “home.” After years of writing about this concept, trying to understand it, I felt the potential of having it.

And now I am in this strange limbo. Being changed, being different, having seen, having felt, and I wonder how much I will be able to feel “home” anywhere.

Perhaps all this is a bit dramatic, but I am definitely struggling with the tug of being in a weird place emotionally.

What keeps going through my head are the lyrics to one of my favorite songs by Cinematic Orchestra (enough that I am afraid I am going to get tired of the song). "There is a place I call home...There is a place that I'm no longer alone."

Starting week 4

Today starts week 4 in South Africa!

This past week was pretty awesome. SO BUSY and crazy (I was pretty exhausted), but satisfying. We were working again near Nelspruit, in a small town call Barberton. We were working at a rural hospital there, and also traveled to the outlying community clinics in that area. I respect so much what they do there, they work so hard, and with so few resources...

The rural clinics were really the best part. Before I came here, I had read about the initiative towards decentralizing health care, especially for HIV care. Basically before a few months ago, you could only get HIV drugs in big hospital centers. Which is a problem when 20% of the population is infected, and when many of the patients who need drugs are not within traveling distances of the big medical centers. In addition, there are not enough physicians to staff areas outside of the big medical centers to start people on treatment. So there was this government initiative to fund training for nurses to initiate antiretrovirals (ARV) on less complicated patients, and refer more complicated patients to medical centers.

While I was reading about this initiative, I couldnt help thinking: "wow, that sounds great, but how long is that going to take to make that happen? And will it? Or is it just a lofty pipe dream that sounds great on paper and makes some politicians sound humanistic?" Well, not that it is without it's faults, or is working perfectly, but it is happening!

I think my favorite clinic we visited this week was Glenthorpe. It was about an hour from Barberton, which is already pretty rural, and we had to drive probably 10 miles on a ruddy dirt road to get there. This clinic is inside of a paper mill, which is one of the biggest employers in the area. It is literally in the middle of nowhere, and the workers live in barracks in the paper mill along with their kids and wives.

It seemed pretty bleak as we drove in for the first time. Small tin barracks, a small school with the roof coming off...You know the people are rarely able to get out of this tiny world given the lack of transportation.

Inside the clinic I met "sister" emily (they call nurses "sisters" here). She is overworked, dedicated, and drives up to this remote area every day because she cares about testing people for HIV and starting them on treatment. When we got there, there were some crossed lines of communication (not unusual here), and she thought our purpose was to teach the patients about health, and so she had invited all her mothers to come in for "education." Something we were unprepared for, but decided to roll with it. We moved probably 30 moms and their kids into this tiny room, shoulder to shoulder, kids crawling around all over the floor. So I am trying to give a "talk" to people who are largely illeterate and speak only minimal English. It ended up being really fun, and the women had a lot of good questions (I think my favorite was "You said that we should eat fruits and vegetables. The fruits and vegetables we have here are mostly bananas and avocados. I was told I can't eat bananas and avocados while I am pregnant. What should I eat?"). I wished I could have taken a picture of all these beautiful women and children packed into the room, but in those situations you can't...There is this mistrust when you take people's pictures in a situation like that that you are going to use the photo to advertise they have HIV, which is still very taboo here.

As usual, lots of heartbreaking situations....
The pediatric ward in the hospital had a number of HIV+ children who were abandoned at the hospital. My favorite was "Niki" a little boy who was 22 months old, would wear old man pajamas and a robe, and sit in a chair in the middle of the peds ward, watching everyone with his head in his hand, like he was in charge of the place. After about an hour, I finally got him to smile :) But his expressions and the way he carried himself told how much older he was, and how heavy his heart was.

A week ago, I was counting the days until i could go home. This week, although I miss home, it is harder to imagine going back...

Week 2

(again, some political content, please do not forward or share without my permission)

I have now officially been here 2 weeks.

I didn't expect to become so overwhelmed by the situation here. I didn't expect for it to affect me as deeply as it has...I expected that I would see a lot of hard things, and I would do what I could. But my heart is heavy, and I feel helpless in a gigantic situation.

This past week was hard. The first week, I saw lots of hard situations, but an attitude of hope and encouragement along with the hard situations.

The second week I was presented with a much bleaker picture.

I attended a staff meeting last week at the hospital I was working at. The big topic of the meeting was that the pharmacy was about to run out of anti-retrovirals (lifesaving drugs for people with HIV/AIDS). THey had received a letter from the local medical government official that the new shipment of drugs was going to be delayed indefinitely. Someone from the government had forgotten to pay the bill, and thus, the drug company refused to send the drugs.



Two steps forward and one step back. I want to be hopeful for the situation of HIV/AIDS in this country. This is a disease that is killing people, creating orphans, spreading like wildfire, and infecting 21+% of the population. I want to believe that the people in politics are starting to pay attention. I want to be hopeful about the fact that Jacob Zuma is acknowledging the disease, increasing funding towards treatment, and encouraging the population to be tested. I want to be encouraged by this and feel this is moving things forward.

So here is the process:
someone finally decides to get up the courage to be tested -> they test positive -> they get a CD4 count to determine how advanced their immune depletion is ->if their immune depletion qualifies them, they start on antiretrovirals (ARV).

So when you have a block in the drug supply, here is the problem:
1. For people who are already on ARVs, if they stop while they are waiting for the drug supply to come back, their virus has a chance to replicate and mutate, and potentially become resistnat to the drugs they are taking (and in SA, there are only 2 cocktails available - in the US there are more...But if you become resistant to one, you only have one other option).

2. Do you continue to test people when the drug supply is down? It is good for people to know, so that people can potentially prevent spread. But say you find out you are positive. And a follow-up CD4 count is very low, showing you have likely had HIV/AIDS for a long time, and your immune system is very compromised...Then you are told the drug supplies are out, and you will have to wait until they are replenished before you can start treatment. In the meanwhile, you may develop and overwhelming infection and die. So people are encouraged to test, but if they do, you are telling them you can do nothing about the results?

I had heard before I started, and observed since I have been here, that there is a lot of resistance to change. Resistance to change hospital policies on infection control, resistance for healthcare providers to care for people with HIV, resistance for the people of the country to accept the disease, resistant for people to get tested and acknowledge it is a possibility they are infected...And I have noted this resistance to change, which is both frustrating, and something I don't want to acknowledge is there. All the same, I can understand why the resistance to change occurs now...Why should you care about testing if there is nothing you can do about the results? Why should drs take care of HIV patients when they run into situations where their hands are tied and they have to stop treating? I feel almost as if it is a learned helplessness.

I must say, I admire very much the doctors and nurses at Rob Ferriera Hospital. They have a very difficult job to do, they persevere, and they handled this situation with a lot of grace. Everyone was frustrated, but knew there was no use in blaming or focusing on why the situation is the way it is. They focused on how they were going to deal with it. This is an attitude I have found very rare, even in the US where we run into situations that aren't quite as impossible.

And as usual, some patients stood out to be this week.

One woman was almost exactly my age...Born within a few weeks of me. It is weird to think of how different our births would have been, how different our paths would have been over our 29 years. And both of us born the year HIV was described/identified...Her world, going to be completely changed by this epidemic, mine, only if I choose for it to be.

Anyhow, she had been on therapy for 3 or 4 years. She had never had a good response, her viral load had never been supressed (the mark of effective treatment is that your viral load - the amount of HIV in your body, goes down). And because of this, her immune system was quite impaired. When the doctors were deciding whether to put her on a new cocktail (which has huge implications - if she fails the first, and then fails the second, in this country she has no other options), they discovered that she was only taking her treatment 1 or 2 times a week. Which will make the treatment ineffective, and also potentially create virus that is resistant to the treatment. So the decision was made to take her off treatment until she could "sort herself out."

I saw her later in the waiting room. Just sitting there, expressionless. And I can't even begin to wonder what her experience is, and why she was where she was. Was she depressed? The patients here are so stoic that it is not often a possibility that is considered. Was she hopeless? Did she feel like she was going to die anyway and there was no reason to take the treatment? Did she not have anyone in her life encouraging her to live? I am sad to say that I didnt have the communciation skills in her langugae to be able to ask these questions. Nor do I know if there is a cultural concept for these things. But all I could see was someone born within weeks of myself, on the other side of the world, whose course and environment were so different from mine...And I felt guilty, that in my world, I had parents unaffected by HIV, that they are still alive and available to encourage me...That I haven't seen friends and family die of HIV, while sitting by helplessly...That I have had the opportunity to go to college and med school and have a steady career which is fulfilling...That I haven't had to battle this disease myself - with it's stigma, with it's chronic treatment that may cause side effects, with it's blame, it's ability to change (or fail to start) relationships...

Ack.

Quote from staff meeting

only in Africa could this comment at a staff meeting not be inappropriate & cause someone to meet with HR (stop reading if you are easily offended): "I am the mother of this unit. And I have large breasts, engorged with the milk to feed and nurture you (while grabbing her breasts)"

Tired!

I am so so tired!
Have you ever been in a country where you knew just a little bit of the language? And you spent all day trying to communicate and trying to understand? And it took up all of your mental energy? And at the end of the day, regardless of how you spent your day, you are exhausted? That is how I feel now. Except that it is English I am speaking...And I have a translator for Swazi-speaking patients. But that is how big I feel the cultural divide is currently.

But alas, I have decided to dedicate a post to the positive things here:

1. It is raining tonight, despite the fact that it "never" rains here during the winter.

2. There is a wonderful woman who runs this hotel, named Coba. She mothers everyone from staff to visitors. She if effusive, energetic, friendly, and is always trilling about with her Afrikaans accent. When I get home from work, tired, and must finish up my reporting for the day (which I have to do in the hotel lobby because it is the only place my 3G card works here), she fusses over me and brings me coffee and tells me to take a break so that my eyes don't ignite.

3. The bed and breakfast we are staying at right now is beautiful and comfortable, and is suprisingly cheap because of the area we are in. The cooks, Sannie and Della, cook wonderful, DELICIOUS food with fresh ingredients. They made me a lunch today to take to work (I can't remember the last time someone packed me a lunch), and it was wonderful.

4. I have received great encouragement from friends and family via email, from those who have been in this program and those who haven't.

5. Upon arriving at work today, in a public hospital, I was greeted with the nurses singing the morning prayers with the patients before clinic got started. It was just about the most beautiful thing I have heard, and although it was in Swazi, I understood it. Maybe the emotion in the tone of it's deliverance, or the soul-rawness of it. At any rate, it was a moment of connection before starting my day.

6. I love the way the women carry their babies here. The babies are placed on their backs, legs wrapped around them (sort of like if you were giving a kid a piggy back ride), and they tie a blanket or shawl around the both of them to keep the baby in place. Not suprisingly, South Africans have the best adherence rate for slings for congenital hip dysplasia (because the way they carry them is sort of like that sling). Anyhow, today a mother came in for her treatment, with her one year old tied to her back. While we were talking to her, the child was playing peek-a-boo with me around his mother's shoulders and smiling an adorable smile. I asked the mom about him, and because of prenatal treatment, he did not convert, and is HIV-. An encouraging way to end the day!

Urban Hospital, Cultural Clash

Today I started working at Rob Ferriera hospital, an urban public hospital in Nelspruit. It is quite a contrast to last week. Moreso than I have felt yet while I have been here, I sense my “otherness.”

In the ACTS clinic last week, the patient population was totally foreign to me. A people whose lifestyle I understood poorly, and a language I didn’t speak. And although I think the doctors there have done an excellent job learning the language and the cultural practices so that they can be effective physicians, they are still very Westernized, and it was very comfortable for me to work with them. In addition, they wanted us to come, asked for us to come, and were eager for us to be there and teach.

Yesterday we arrived at the hospital, and the minister of health of this province had not sent a letter or given advanced notice that we would be there or that we had permission to be there. So yesterday we could not work, and subsequently, our position and role has been ill-defined. Today the minister of health appeared in person to give her permissions. Although all the staff have been quite kind, I can imagine it is not a great way to start your week to find people who you perceive as “auditors” to be spending the week with you.

This week, I am working with all South African physicians, which is wonderful, but I definitely feel like more of an outsider, and am feeling the cultural rub. When they shake your hand here, when you greet, it is a bit of an involved handshake, releasing, repositioning, and then releasing and going back to normal handshake position. It felt like a secret handshake to me the first day, I know I still can’t do it quite right, and I am practicing in my room out of their vision. The patients all speak another language as well, but mostly Swazi, not the SwiZulu that was spoken last week. I have picked up that “Dokotela” means doctor.

Not knowing the culture, I speak and act with more cautiousness this week, wanting to not overstep boundaries or do or say something culturally unacceptable.

In addition, today I was paired with an older male, a general practicioner (many of the physicians here, especially in the public sector do not specialize), who does most of the peds work. Upon being introduced to me, I could tell he was uncomfortable hearing that he was going to be taking advice from someone who appeared to be about 20, was a woman, and was white. While we were waiting for the first patient, he was talking about why he hadn’t specialized, why he had never been to America, etc. Almost felt like he was defending himself. I felt awful. I didn’t want him to feel emasculated or threatened by me or made to feel inferior by me. It was a challenge all morning, when I saw things being done incorrectly, to make suggestions without feeling like I was bossing him or criticizing. At one point, he left the room to see a screaming patient…I suspect he took longer than he needed to, because he told the nurse to keep sending me patients and I could see them and dismiss them without him being in the room…Maybe I am overanalyzing that. It is hard, when my main job is to teach out of what is not working and what is missing, to not FEEL like an auditor.

I have to keep encouraging myself that I can just do the best I can. I can just be as gentle as I can, as understanding as I can, to have as much wisdom as I can in the settings I am in. I hope and pray, that my heart is open, my eyes are open, and I am seeing and hearing without putting too much of my own cultural superiority on things. And that in the meanwhile, in the midst of the chaos, in the midst of trying to speak and understand a totally different cultural language, I am seeing and understanding the beauty of what is around me.

I continue to be struck by the numbers of orphans here. I think half of the pediatric patients I saw this morning were AIDS orphans. In the Mpumalanga province, approx 28% of the population is infected with HIV. That sounds like an enormous number, one that you can’t quite get your head around, but when you start to see all the orphans, a generation of children abandoned, your head starts to get around it.

I was also made aware today of how much denial and stigma exists around the disease, even a disease that is now getting political attention, that is getting national festivals around curing and preventing, that is infecting almost a THIRD of the population. Stigma and denial still exist. We saw a woman today who was 36 weeks pregnant. She is an educated woman (which is not true of the entire population). During her prenatal care for her last child in 2006, she was diagnosed with HIV. She has not since seen a dr about HIV. She did not come to the dr during this pregnancy until today, almost at her due date, knowing that medicines were necessary throughout her first pregnancy to help prevent mother to child transmission. In addition, her CD4 count is now 22, which is SEVERE immune suppression. It could have been prevented from getting that low had she presented to care at some point between 2006 and today. The only way I can explain this is denial. Denial that this disease was in her, that she was part of the stigma…Because otherwise, there is no logical explanation for why she would not come.

The beginning of Week 2

(please especially don't forward this post onto anyone without my permission, political content ahead)

Back in Nelspruit today. This week will be working in Rob Ferriera Hospital, a fairly urban public hospital here, as compared to the rural clinic we were in last week.

Last night before we left the unincorporated township where the rural clinic is, we had dinner at the home of Dr Ian Proudfoot and his wife Joan. With the luxury of sitting over a lovely dinner in a warm room (I don;t believe there was another warm spot in all of the township. As soon as we got "home" every night, I had to go to bed because I was too cold to be anywhere else), I was able to hear more of Ian's story about how he ended up in this rural area, and it was so extraordinary and touching, I had to share it.

So as I mentioned before, Ian had spent his whole life (up until 18 months ago) in Cape Town, and had spent the first 20 years of his practice there in the private sector. In South Africa there is a public system and a private system. The private system is for well-off people with insurance and money. It is a high quality system, indistinguishable from what you would find in a good US hospital. The public system is government run and known to be overtaxed, underresourced, etc. 80% of physicians work in the private sector, 20% of people in the country can afford private insurance. So the other 20% of physicians are taking care of 80% of the patients, with lesser salaries. Can you do the math and see why the public system is over-taxed?

Anyhow, Ian was working in the private sector, was feeling like he wanted to move to the public sector the more he heard and understood the need. He was exploring different options, and concurrently he and his wife traveled to the eastern part of the country to visit their favorite spot, Kruger national Park, for a weekend holiday. In looking for accomodations during their trip, they found that this clinic, ACTS, had very cheap accomodations close to the park, so they decided to stay there. While checking in there, they found out Ian was a dr and started trying to sell him on working in the clinic, as they were looking for another dr. He was skeptical at first, but he and his wife started discussing it as he had been looking for options in the public sector.

So they are driving through the park, and see 3 people sitting on the edge of the road. For those of you who haven't been to Kruger, you DON'T get out of the car. There are wild animals everywhere, and they walk in and out of the roads, and it is seriously dangerous to not follow the rules. Getting out is dangerous, sitting on the side of the road more so. They assumed the people were refugees from one of the countries northward. Apparently many refugees cross through the park, as it is not gated very well on it's northern border, but it is VERY VERY dangerous and many are killed in the process.

They drive a kilometer further down the road, and see a pride of Lions, close to the road, staring back in the direction they had come, where the refugees were. They had a very intent stare. They continued driving, and Joan became more and more uneasy, and said, "we have to go back and get those refugees, I have a bad feeling." So they went back to the refugees. They tried to talk with them, the refugees did not understand their language. So they gestured into the car. Meanwhile, they can see the lions in the distance, stalking closer and closer. The refugees refused to get in the car, likely nervous because of their "illegal" status. Finally, Joan and Ian pulled out their game book and showed a picture of a lion, pointed to the road where the lions were in the distance, and the refugees got in the car. They then weren't sure what to do with the refugees, but found a ranger to take them out of the park.

Later, while they were getting ready for bed, both of them felt simultaneously like it was meant to be for them to move to the Mpumalanga province and for Ian to work at the ACTS clinic. And as they put this out in the open, and realized they were on the same wavelength, Joan remembered a dream that a friend had shared with them. She had told them that she had had a dream about Ian and Joan recently, and that the imagery of the dream was abstract, but the way she had understood the dream was "once you save someone's life, the path of your life will change." And this further solidified their decision to stay.

And 18 months later, they are at total peace with the decision. Even with daily drives down an unpaved, muddy road, car getting stuck often, black mamba snakes (the most deadly snake in the world) on their front porch, etc.

I just thought that story was so touching and beautiful, I had to share it.

More later on my thoughts about being back in Rob Ferriera and an urban setting, tired now and must go to bed.

Week 1 in Africa

Just finished my first week in South Africa, and my first week of clinical mentoring.

Initially had some computer trouble, and wrote like 10 pages in my journal about how I felt the first couple of days…I will spare you all the details. But basically, I was alternatingly excited and nervous about being here. As I watched the “moving map” on the plane, I got more and more nervous as I saw us approaching Johannesburg. Who was I to be doing this? I am a resident, practically the lowest on the totem pole. And I am here to teach?! Humbling…

So I arrive in Jo-burg on Saturday night. A nice man named Hetmen picked me up from the airport and took me to Pretoria. We chatted on our way to Pretoria. I was struck as we talked at how clearly non-American he was (bear with me, I don’t expect people in other countries to be “American.” In my head I was just comparing things). It wasn’t just his accent, but also the way he carried himself. There was a bit more joy in him than I see in America, generally…And I think also a bit less anxiety. He dropped me at the hotel I was staying in for the night, and said “and now you are home.” I found that so comforting. At first I thought it was just his English translation (but nonetheless found it endearing), but I have subsequently realized that that is a common expression here. Somehow makes things feel more hospitable. And the actions to back up this piece of warm fuzzy dialog. When I arrived at the hotel, the clerk made me a pot of tea before I could even check in, and my experience with service and hospitality has been the same since.

On Monday, Vivian (a woman who is here working for the program for a year), Rolando (a UCSD pediatrician/infectious disease specialist whose last week was my first week) and I drove to Nelspruit, about 4 hours due east from Pretoria, in the Mpumalanga province. Vivian soon returned to Pretoria, so she could fly to England for her vaca.

Rolando and I spent the week working in a clinic called the ACTS clinic. It is a faith-based clinic, whose vision is: “to provide quality care & support to all those infected & affected by HIV/AIDS & to model this in the Masoyi Tribal Area.” Our main contact at this clinic was a man named Ian Proudfoot (not native American, in case you were wondering, because I did). He is a lovely, welcoming, gentle, and inspiring physician. His training was in “general practice” and he had spent all his life and the first 20 years of his practice in Cape Town, in the private sector (essentially rich people). About 2 years ago, did some soul searching, decided he needed to address the AIDS crisis in his country, moved across the country and joined this public clinic. He had never done AIDS/HIV work before, and had rarely seen children. He also didn’t speak Swa-Zulu which is the predominant language in this region. He has proved to be a quick learner of all of the above, and his enthusiasm is inspiring.

The clinic was great. They took what used to be a tobacco farm, solicited funds (partly from Swedish churches, some from PEPFAR – the US government funding of African HIV work), and basically rose from the ashes. An old shipping container was recycled into an on-site lab. Timber buildings with corregated tin roofs house the clinics, a 12 bed inpatient facility, and a counseling center. They have an on-site pharmacy to dispense patients meds, as most patients are too poor to buy meds on the outside. And I can see, they are SAVING LIVES. Just a year or 2 ago, all of their patients would be knocking on death’s door. Despite that, I am struck how many resources we waste in the US, and how we take for granted the billions of tests we order with the click of a button. The providers here didn’t have access to a CT scanner with the exception of a hospital about an hour away. And even then, as I was told “one CT scan would blow our testing budget for the entire year.” So something we order without even thinking in the US is a COMPLETE luxury. And they make do with very basic labs and chest Xrays, and a limited supply of meds.

The children here are so stoic. I was looking at a tiny 8 year old’s anti-retrovirals. They were HUGE. Like, I would have trouble swallowing them. And that was just one pill of three, and she has to take 2 tabs twice a day. I asked her mother how she gave the pills, assuming that she crushed them in food or something. The mom looked at me, surprised, and said “well, she swallows them with water.” The children don’t complain, their parents are not thrown into anxiety about their symptoms. One boy I saw had a rash all over his chest and back. We decided it was either fungal or a complication of his HIV. In the US, he would have along the way been labeled as an “allergy to amoxicillin” (which all the kids here get at some point for their frequent pneumonias due to compromised immune systems). Here, nobody seems to be allergic to amoxicillin. In the US, it is all over the place – “rash” “GI upset,” etc. There, amoxicillin is almost the only antibiotic you can receive for pneumonia, not taking it can result in death at worst, lung damage at best, in many cases, lungs that have already had HIV complications and/or tuberculosis.

I don’t mean to bag on the US. I hope to be a parent some day, and know (esp with my medical knowledge), that I will freak out about every symptom my child has and probably make their doctors nuts. But my point is just that abundant resources allow us to be more picky, more demanding, and more whiny (myself included). I was struck this week how many of the children we saw were AIDS orphans. They were being raised by grandparents, older siblings, or themselves. You hear the statistics, and then you hear a 9 year old recite his own meds because there is nobody to be responsible for the meds except him. I was struck by the number of children who were “failure to thrive” – in other words malnourished. Their HIV is treated, they are screened for TB, treated for worms, and asked about their symtoms. If no obvious cause is then found, the children are watched, sometimes given a fortification powder. In the US, we admit these children to hospitals. I suspect, based on the town I subsequently drove through, more of these children don’t have enough to eat than their caretakers are willing to admit. In addition to there being extreme poverty, a child’s metabolism increases by 30% when they have HIV.

One story stands out to me this week. We saw a 22 month old girl who has HIV. She is the size of a 6 month old (6kg), and has the development of about the same (can only sit up, makes no cooing or babbling noises, poor social contact). Her mother is mentally retarded, and the social situation is complicated. It is unclear whether the child is receiving her antiretrovirals, and how well she is being fed. In addition, on exam, we are suspecting she has some other genetic problems. We talked later with the social worker about her. The social worker expressed her extreme concern about the child’s development. She stated that some members of the clinic wanted to take the child off ARVs and “let her die.” She felt they should do a big effort at advocacy for the child before resorting to this. I was struck by this. The whole situation is heartbreaking, however you look at it. And I guess you can look at “letting her die” in 2 ways. You can see it as compassionate, in a child who will likely not survive much longer, or you can see it as a tragedy in a setting where resources are limited. I am not sure where I stand. In the US, I would like to be able to work her up a bit more and try her in a different social situation (we are doing a bit more work-up here, but it is limited – there is no “organic acid” panel we can get). But after that, I think “letting her die” may be the most compassionate thing. In the US, she would get a G-tube, tube feeds, seizure meds, and would be in and out of the hospital all the time…Is this better? Isn’t it a bit of torture to continue to force medical procedures on a child who will never understand their benefit?

I was also struck by the story of a woman in their “inpatient” unit who had died of coughing up blood, while she had TB, and a superimposed pneumonia. All I could think of was imagining in the US her being whisked off to IR, to get her lung embolized…Here, they handed her a bucket as she coughed, and held her as she died. Would the ultimate outcome have been the same in the US? After an invasive procedure? Is it better to die in the arms of someone or on a cold operating table?

But I have been shocked at the ability of people in the US to rally after what should have been a life ending complication of disease. And they have more time, if even a month or so, to hold and be held in the arms of people they love. So I don’t think everything we do is futile, some of it is definitely life saving, and life-quality saving.

These are just questions I am wrestling with

Thankfulness

I went on a walk today. I started off just going to the mailbox to drop in a movie from netflix, and then I pulled a Forrest Gump and felt the need to just keep walking. At first, I thought I would just go around the block, and an hour later I ended up back home. It was a nice walk, I would normally run to get some exercise, but my body wasn't feeling it, and it gave me a chance to be reflective and pray (whereas running, most of my thoughts are things like "must...push...past...pain..."). I realized I needed to focus on thanksfulness and delighting in God's provision. Some things I am thankful for this week:

1. Ms Aretha not having cancer and recovering from her mouth surgery.
2. Having kind of a profound moment with God over my cat being sick.
3. Being able to ride my bike to a lot of places and not use my car.
4. For people like the Brewsters who look at their beautiful house as a gift from God and something to be shared.
5. My community of friends and fellow mentors in San Diego.
6. A meeting with my research boss this week that went well and made me feel like all my analysis has not been for naught.
7. God using my brokeness to mentor a girl many years ago, and getting to see her this weekend and getting to hear how God is working through her in Thailand.
8. My parents who love me and my dad who lights a candle for me at church every sunday, for my health and well-being, and to find the right husband for me.