Mzungu and Karibu

As I drive onto the school playground, eleven and twelve year olds everywhere stop playing and stare at me through the open truck windows. A few beats pass as I make shy eye contact with a few of them. They all break into smiles, begin chasing the truck as we drive further onto the field and shout “Mzungu! How are you mzungu!!”.

“Do you know what that means?” the driver asks.

“It’s like foreigner, right?” I say as the nurses laugh and banter with the kids.

“Well yes but it’s more specifically a white person, like an albino”

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See, I’m not THAT white. Also I like elephants.

“Albino?! I am not THAT white!” I say stunned and a little wounded. For the record I am not super white. In fact, I am pretty damn ethnic. I perpetually look like I have a tan and in the sun I get so dark you can actually tell that I’m part filipino. Of course I live a gollum-like existence these days so I am a pasty version of myself, but pasty me is still pretty tan.

But what can I say? It’s all relative. In Kenya, I am white. I was an obvious outsider and not just when I showed up at the neighborhood middle school to collect samples. I was an outsider every day in Kenya.

Being a visitor in a lab is awkward. Being a foreigner, a mzungu, is stressful to boot. You have to balance your responsibility to your work with the fact that you are a guest on someone else’s turf. Add in a little bit of tension between westerners and Africans and that’s what I walked into this summer.

As the time went on, I built a rapport with most of the people in the lab, even going out with them on the weekends. But still, there were things that consistently reminded me that I did not belong.

  1. The language- While individuals would direct questions to me in English, banter and small talk amongst labmates was almost always in Swahili, which I do not speak. It is so isolating to watch the people around you having a conversation and be unable to participate. It is beyond awkward to have to sit silently while everyone else chats with each other. It would have been one thing if people in the lab couldn’t speak English (which was the case when I worked in China). I would have understood that because it would have been unavoidable. I wouldn’t have viewed it as a slight against me. But when everyone speaks lovely English (much more proper than my very colloquial California slang) and they still choose to speak in a language you don’t know, it’s hard not to take it personally. Especially when they all start laughing. Wow does the paranoia set in. “Dear god, I hope they aren’t talking about me! Don’t be so self-absorbed Taryn. It’s not always about you. But… But what if…” And because I was already so paranoid about being the obnoxious American, I didn’t feel comfortable asking them to speak in English just so I could participate. Instead I would put in headphones and focus on my work to seem like I was too preoccupied to notice. I guess it made me really productive?
  2. My lodging- I was staying in a hotel and no matter how nice a hotel is, it will never feel like “home.” There’s something about making instant ramen in a hotel room with no microwave because you are too tired to go to a restaurant for dinner that really makes you feel like a visitor.
  3. My commute- The first two weeks of my trip a KEMRI driver was picking me up and taking me to and from lab every day. That is not the norm. Only guests get chauffeured around like that. It felt so bougie and so self-important and I hated it. Especially since someone else would have to call the drivers to fetch me at the end of each day. The minute I found out that the staff bus picked up next to my hotel, I started taking that. It felt better to be using the same transportation as everyone else.
  4. My name- I never realized how much getting your name butchered can mess with your psyche. Apparently there is something really challenging about the name Taryn for Kenyan people. When I first arrived, a lot of people were pronouncing it Tary-in, which I actually sort of got and was okay with. I would say “close!” and correct them. They’d say it was a hard one. We’d laugh and get on with our day. But somewhere along the line people just fully gave up on using my name at all. When I’d introduce myself to people, they would straight up be like “no I will not call you that” because it was too challenging. The student I was working with started calling me by a Luo word as a pet name instead. And then at some point the director called me by my middle name- Alissa- and it all went downhill from there. No one ever called me Taryn again. From that point on, everyone called me Alissa. I still get emails addressed to Alissa. I’m not going to lie. It was pretty disheartening. This wasn’t like getting a nickname you don’t like. I had plenty of nicknames in college that I wasn’t super fond of, but they were all born from familiarity and closeness. Instead, this was like being told your name doesn’t matter. And when you grow up with an unusual name, it becomes a part of your identity so that’s a tough bullet to bite. I know that there was no malicious intent behind the name debacle but getting called by a name you don’t identify with makes you feel like you are a stranger to whoever is speaking to you.

I’m not going to sit here and pretend like I thought I’d be BFFs with the Kenyans. I didn’t. And I definitely did not want them to alter their routines to accommodate my insecurities. No one owed it to me to make me feel like a local because I wasn’t a local. I was a guest and they were treating me as such.

And that, perhaps, was the strangest part of all because Kenyan hospitality is absolutely incredible. The Swahili word karibu means welcome (both as in you’re welcome and welcome home) and it is totally the status quo out there. As a guest, everyone was so so welcoming.

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Out to dinner with the guys from lab!

Everyone wanted to make sure I was seeing the sites and getting souvenirs and trying all the local foods. Even little things in lab made this evident. People paid for my meals even though I insisted Emory was footing my bill. Grown men would squish in the backseat of the transport vehicles so I could sit in front even though I’m tiny and am the obvious choice for middle nut. One chick from lab took me shopping and helped me barter prices. The student I was working with went out of his way to show me his university and take me to the equator one weekend. He even drove me around the slums because I wanted to see them. Any thing I wanted to do, someone made sure I did it. I truly was well taken care of.

People were also so willing to share their stories and their knowledge with me. I learned about the politics, the geography, the home structure, the various religious practices. Any question I had from “Why are there cows in the middle of the road” to “Explain this whole wife inheritance thing?” people answered. As a friend of mine pointed out, it was more important to the Kenyan people that, as a guest, I come away with a strong sense of Kenyan culture than with a lot of data points. And I did. I was such a know-it-all on my safari with my mom, I’m sure I drove her nuts.

Still, I couldn’t help that outsider feeling and man was that confusing. Being lonely in a place where everyone is SO nice just feels totally unjustified. But it had nothing to do with them. And really it had nothing to do with me. It’s just the way it is when you drop into a brand new place where nothing and no one is familiar.

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Me and my Filipino mom at the Great Rift Valley.

I kept having to remind myself that my feelings were justified. It was okay to feel lonely because I truly didn’t know anyone. It was okay to feel isolated because I did in fact spend about half my waking hours by myself. It was okay to feel like an outsider because I am a part asian, part white chick from America hanging out in Kenya for the first time ever. If that doesn’t say outsider, then I don’t know what does.

I realized (too late) that in order to stop feeling guilty, I had to allow the contradiction to exist. Feeling lonely did not detract from their warmth or hospitality. Appreciating their hospitality did not detract from my loneliness. As it turns out, mzungu and karibu are not mutually exclusive.

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Asante Sana

Asante sana is the Swahili word for thank you very much. That is what this post is going to be- literally just me expressing gratitude and awe for all the people who make shit happen in Kisumu. Finally a happy post! I know right?


Community Health Volunteers

A Community Health Volunteer (CHV) is just that- a volunteer from within a community. The term Community Health Volunteer (CHV) is pretty much interchangeable with the term Community Health Worker (CHW), but I prefer the former because it emphasizes that this is Not. Their. Job. They have actual shit to do to every day to make a living and support their families. This is extra work for them. There might be incentives provided to do the work, but that’s beside the point.

Think about all the “volunteering” you’ve done in your life, pat yourself on the back, and then check your ego for a hot sec. If you are a millenial in America, I’m gonna guess that most of your philanthropic work was: A. to put on a resume for college/internships/scholarships/etc., B. as a part of a group activity or C. penance. For those of you who did it purely for the betterment of the world, then good on you! I know a few of you people and you kick major ass. I look at myself and I can say, without feeling braggy, that I’ve done a fair amount of philanthropic shit in my life. And while I did very much believe in the cause for each of my activities (public health, pediatric HIV, science education), they were also fun (um hello UCLA Dance Marathon anybody?). Even if they sometimes hit a little close to home, nothing was life or death. CHVs, on the other hand, are the literal link between their own neighbors and access to care and treatment. Often times, they are also the only thing keeping a study going because of this positioning.

First and foremost, they provide rapport for participants. Even in America there is often awkward tension between patients and doctors. Being a patient is a vulnerable position. As amazing as your health care provider might be, he or she is still a stranger. A stranger that is not only witnessing you at your most vulnerable, but is also responsible for your well being. It’s a total power differential. Layer that dynamic into the relationship between scientist and study participant, add in lack of trust towards authority figures, a little bit of illiteracy, a lot of superstition and a whole mess of medical stigma. That’s what scientists and study participants have to deal with in Kenya. The CHVs span this gap giving the participants a level of comfort and familiarity. There is trust between community members. Study participants are more likely to believe what a CHV tells them about a medicine or a procedure or a study. They are also more likely to provide honest information they to a CHV than they are to a nurse or scientist. In fact they are more likely to provide information at all to a CHV.

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Second, CHVs provide a reliable line of communication between study participants and doctors. My study coordinator said that he recently called to check in on a participant who was late for an appointment- we will call him Bob. So he calls the number Bob had given him and asks for Bob. The person on the other end, not only isn’t Bob, but has no idea where Bob is. The dude with the cellphone was in Nairobi for the weekend and wouldn’t be able to check in on Bob until he got back to the village. This is normal. When you or I have a doctors appointment, we get email reminders, text reminders, voicemail reminders. We can reschedule at the last minute and even warn someone when we are running late. In Kenya, most people don’t have access to internet on the reg, let alone an email address. While cell phones are a little bit more common they are often shared amongst family members in Kisumu, and amongst entire communities in more rural areas. Cell phones get passed around, taken on trips, die for days at a time and are just generally unreliable. In these instances CHVs can intervene and open up those lines of communication. Since they are a part of the community, they know people like Bob and can physically go check on Bob to see what his deal is. If Bob just forgot they can promptly bring him to his appointment, and then bring him home, thus saving the day for science!

Which brings me to my last point. CHVs know all the dirt and do all the dirty work. CHVs are the boots on the ground. They zip around the country on motorcycles carrying people and supplies between villages, hospitals, remote health centers, schools, churches, you name it. There is a whole fleet of motorbikes at the CRC just for the CHVs to get around. And of course, because they are boots on the ground, they know people. They are influencers within their community and valuable sources of information to doctors. They are the Gretchen Weiners of scientific studies- which as you will see in an upcoming post is more valuable than you can possibly imagine.

So asante sane to the CHVs in Siaya County! Without you, our studies would crumble into nothingness.


Study Nurses

Let me just start by saying that nurses in general do not get nearly enough street cred.

IMG_5646Okay now on to the study nurses! Ugh, so much respect! Let’s start here… Because of the high incidence of TB and the existence of KEMRI, there are consistently a number of studies enrolling participants in Kisumu. Every single one of these studies officially enrolls at the CRC following an initial screening conducted by, you guessed it, the study nurses. To maximize the information that can be obtained from an individual participant and to increase an individual participant’s access to resources (treatment, counseling, incentives etc.), individuals can co-enroll in as many studies as they qualify for. Because of this co-enrollment process it is easier to have each nurse do all the screening tests for a given participant and then determine what they are eligible for. This differs from how we screen participants in the states where each study has a set of nurses and you must see a specific study’s nurses for screening and follow up. The CRC nurses therefore have to be trained on the study details, protocols, and screening requirements for allllll the studies. That’s a lot to juggle for any nurse, but the nurses at the CRC have gone above and beyond even that level.

When I was going through my mock study enrollment, the senior nurse on staff- Zipporah- went through all these nitty gritty details with me.  Each nurse is responsible for a big plastic box that contains the tools of her trade. Some of these tools would be familiar to anyone- gloves, thermometers, hand sanitizer. Others are familiar to me as an infectious disease scientist- rapid HIV tests, hemoglobin tests, pregnancy tests, rapid malaria tests. Interestingly though, some of the most critical items in these boxes are not scientific instruments at all. Their existence perplexed me until Zipporah explained them to me.

A stamp pad is used to obtain consent from individuals who are illiterate. A fingerprint acts as a surrogate for their signature on paperwork, indicating that they have been informed of the all the risks, benefits, and protocols of the study.

Different size jugs are strung from the roof of the tent. They are used to demonstrate the volume of blood in the body in comparison to the volume of blood drawn for: 1. a donation 2. the actual study visits and 3. this initial screening. Obviously most of us are not intimately familiar with these volumes but when we go see a nurse, we trust that they are not taking dangerous levels of our blood. Most of us probably also know that blood is replenished continuously. This level of trust and physiological awareness is not a given in Kenya. There are still a lot of superstitions and fears surrounding medical care. The nurses therefore use these physical indicators to show the safety of the process.

Brown paper bags are used to discreetly carry stool and urine samples back from the bathroom. I could write a whole blurb about poo culture in American medicine and mainstream society, but I won’t. The important part for this discussion is privacy. When you go to a doctor in the states, you end up behind closed doors, far away from the waiting room, the nursing staff, and any prying eyes. So if you have to give a urine or poo sample, other patients don’t see you. Even if you skipped through the hallway with your poo in a tub, you’d probably still only be seen by a nurse or two. The enrollment process for TB studies in Kenya, on the other hand, is all out in the open. The paper bag therefore provides the participants with a level of discretion and privacy. It goes a long way towards helping participants feel comfortable and dignified.

These are just a few of the little things we take for granted in what *should be* a very standard process. Thankfully though, the CRC team is sensitive to their participant population. They understand how to best convey information and assuage fears, and they do this with patience and empathy. This is SO important because these nurses are the first medical face that patients see. As such, this interaction can determine whether a patient becomes a participant at all.

So asante sana to the study nurses for their dedication, patience, warmth and creativity.


Data Management

You know how we marvel at how our parents ever did anything before the internet and laptops and shit? Well life is still like that in Kenya so I now know, first hand, how they did things. In Atlanta when I want enrollment information on a participant, I just ask Cheryl to log onto the magical database and download excel docs for me. I super take for granted the amount of work and manpower that goes into creating that magical database.

IMG_5793 (1)Basically, each participant in our study has a binder associated with them. Each binder has a fat stack of inserts, each of which documents one small part of their total enrollment data. Those sheets have to be filled out by hand before they can be input into the database. The kicker is that each of those sheets is filled out by a different person and each of those people are located in different labs at different sites. Soooo one sheet might be the TB microbiology data- colony counts and antibiotic resistance test results- which is collected in the TB lab and may take weeks. One sheet is the HIV lab data- viral loads, CD4 counts- which goes to the HIV lab and I have no idea how long that takes. Another may be the HIV patient data- Is this patient on antiretroviral therapy? If so, when did the start? If not, when will they start? What regimen? Another sheet still is the helminth data which goes to the helminth guy in the TB lab and takes a day but has to be done on two separate occasions. You get where I’m going with this, right?

Then all these separate physical pieces of paper have to somehow make it back to the CRC before the information gets put into the fancy online system. It got so chaotic that the document runners now have to physically sign out every piece of paper every time it leaves one location and sign each piece back in to every new location. This sort of solved the lost paperwork problem but has also added even more paperwork that has to be collected and put into the fancy online database. And of course the internet is regularly on the fritz so there’s that.

After it’s all put into the magical database, someone has to go through each binder and compare the physical documentation to the online information. This is called Source Document Verification (SDV) and is a part of Quality Control (QC). It sounds silly, but when you are on the ground, you realize that some information is being conveyed in phone calls/text messages/emails out of haste. So sometimes we have the information in some unofficial way, and it may even be correct (though not always), but the actual legit documentation is missing. This is a big no no. You need the physical document or it doesn’t count. You also need to match the physical document or it doesn’t count. And sometimes the documents aren’t even complete! People get sloppy and lazy and busy and a million other things. So when information is missing the QC person has to go back and be like “yo lab teams wtf?” It’s kind of a nightmare. This amazing chick Emily from Emory was at the CRC while I was in Kisumu. She spends like half the year in Kisumu doing these tasks and, dear lord, is it time consuming! Way more than you would think! But it’s SO important when you get to the data analysis step.

Right now I’m staring at a data table in R of enrollment data and there are a ton of missing values. Some of them are normal, but some of them I’m totally itching for. Like I knowwwww that that one cell should have a value in it! But I can rest easy knowing that people like Emily are on it. If that cell should indeed have a value in it, she will either find that value or find out why that value doesn’t exist. And she will do it by sifting through hundreds of participant binders and comparing them to the online database. Yuck.

So thank you to the data management team, and pretty much anyone anywhere who has ever had to do SDV or QC for a study. You bold souls, you!


Study Coordinator

IMG_5715My study coordinator is this guy named Felix and he is one suave dude. He is warm and personable with this deep, booming voice and easy sense of humor. I went out with him and “the boys” during my stay and he spent the whole night talking up his boys and making jokes about Kisumu and Kenya. He is easy to be around because of his humility and self assurance, which shouldn’t be able to coexist in a human, but somehow do. I tried to teach him how to salsa dance (I can’t salsa dance) and he was absolutely atrocious at it, but it didn’t get him down in the slightest. He knew he was bad but was still so freaking charming about it. You can tell from talking to him how much he loves his family, and his country. And I can tell from watching him interact with people that everyone adores him- both staff and patients. Thank fucking god, because his job is literally to coordinate humans and convince them to do things for him (and by proxy, for the study). He is excellent at his job because of the kind of human he is. That part is easy to tell. The harder part to notice was just how seriously he takes this job, and how taxing the job itself is. He just wears the responsibility so easily.

The afore-mentioned Emily referred to him as The Magician because according to her “he’s always disappearing.” At first I was annoyed by that. Homie has a job, what do you mean he’s always disappearing during the workday? Then I realized that she meant it affectionately, almost as a term of respect. Felix just has so many humans and tasks to juggle that he is constantly being pulled one way or another. If he “disappears” it really just means that another task took him away from you and since people aren’t as readily accessible in Kenya as they are in the states, you just accept it. I remember one day in particular that exemplifies this. So my car picks me up in the morning at 8:30 am (it already picked up Emily), which has, of course, been arranged by Felix. We then proceeded to drop Emily off and pick Felix up at the CRC around 8:45. He had already put in a full morning’s work. Then he had us pick up another coordinator at another hospital on the way to KEMRI, drop me off at KEMRI and then take him and the other coordinators to a field site to oversee activities there for the day. Then when I was picked up at the end of the day at KEMRI, he was magically there again coordinating sample transfer. Did I mention he is also attending night school to get a nursing degree? Like Emily said, The Magician. And he doesn’t even bat an eye.

So asante sana Felix, and to all other coordinators just as magical as he is. Without your suave multitasking fortitude, life would be utter chaos.

Identity Crisis

Imagine you are HIV+ and living in rural Kenya. Your small community will not understand nor accept this about you and so you live every day worrying that they will find out. They are the only family you know and you don’t think you have it in you to move away from the community and start a new life. You develop active TB and it is wasting your body away. Your community members implore you to participate in a TB study which will provide you with TB treatment for free! It seems like a miracle! Then you find out you have to take an HIV test in order to participate in the study. You are terrified that the results of your test will be shared with members of your community. It is very possible that if anyone finds out, they will blackmail you into keeping it a secret. The nurse in charge promises that your tests results will be kept private and explains that the contract she has in front of her guarantees this, but you can’t read so you can’t verify for yourself. You are just supposed to trust her. Since corruption is omnipresent in your country and she is a complete stranger, you just can’t put yourself in that position. With something as sensitive as HIV status, you simply can’t afford to be trusting. Faced with an impossible choice, you lie on your application for the study, providing a false name and address.

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This is an all too common scenario in Kenya.

In the states we take things like privacy and confidentiality for granted. I cannot count the number of ethics trainings and classes I have sat through reminding me not to give out patient information or discuss patient data (like duh, right?). And I’m not even a med student. I will literally never see a patient in my life. “Patients” in my career are de-identified coded numbers. That’s how important values like confidentiality and privacy are in the medical field. While there have obviously been breaches in this ethics system throughout United States history, the day to day healthcare infrastructure lends itself to familiarity and trust. It is because of this, that study participants feel comfortable with providing sensitive information and/or samples. There is trust in the relationship between scientist and “test subject,” not to mention a fat contract stating that privacy will be respected. I’m in a study right now and I have zero concerns that my data will be leaked or shared with anyone. Kenyan scientists and doctors are similarly trained and there are similar contracts in place but the resulting trust that we take for granted in the states just doesn’t exist. This gap can be boiled down to a few things:

1. Medical care is generally uncommon.

People in Kenya don’t get regular checkups. They don’t build a rapport with a family practitioner. A doctor is just another stranger to them.

2. Western medical practices are misunderstood.

On top of that, superstition feeds into a mistrust of medical practitioners, especially in remote communities. To this day, scientists have to combat the notion that healthcare workers are vampires for drawing blood. Fucking vampires. Let that sink in.

3. Lack of familiarity with the concepts of Confidentiality and Privacy, with a capital C and P.

Okay let’s be honest for a sec… most of us have probably watched one of the following shows at least semi-regularly at some point in our lives: ER, Grey’s Anatomy, House, or General Hospital. If not, you’ve probably at least seen some Law and Order or Judge Judy. Familiarity with medical and legal jargon means that something like “confidentiality” as a binding contractual term makes sense to us. It’s such an obvious thing that when presented with the whole spiel, I’m just like “Yea, yea I know. Give me the contract to sign.”  But those words don’t have the same weight in Kenya.

And most imporantly…

4. Corruption.

Higher authorities in Kenya are SUPER corrupt! Just go take a gander at the events preceding the most recent presidential election in Kenya. (TL;DR – Their supreme court had to nullify the whole damn thing because it was just so corrupt. An election official was fucking tortured to death.) And it’s not like corruption exists only at that scale. It seeps into regular people’s day to day lives. The number of people who told me stories about “that one time they had to bribe the police” was astounding. And they talk about it like it’s a totally normal part of their lives. BECAUSE IT IS! Even my mom and I were held up by cops while on a safari. A FUCKING SAFARI. Lucky for us, our driver/guide handled it, but it was still so sketchy. They took him behind a semi truck on the side of the road in the middle of rural Kenya for about a half hour. Because they could. And we just had to sit there, and wait, and stare at these dudes with rifles pacing around our Landcruiser. Because what else were we supposed to do? It’s the freaking police. You do what you are told. Needless to say, the Kenyans are justifiably worried about being taken advantage of by people in authority positions and that fear gets projected onto healthcare workers.

 

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The police made me delete pictures of the shakedown but this is my mom and the vehicle we got pulled over in.

So the scientists and doctors adjust their practices to accommodate this concern from the participant. For example, no form of physical identification is required to participate in a TB study. That would be too reminiscent of the police and would scare people off. So in order to increase participation, we don’t require it. That also, however, means that people don’t have to provide honest information because no one is going to check. And many don’t, because again, they don’t quite get that the information will indeed be kept secret. It makes them feel safer to lie.

So they lie. And who can blame them?

Of course that makes our job way more difficult because we sometimes have to go find these people, give them medication, do follow up surveys, take additional samples, etc.

But this is the reality. Superstition is a thing. HIV stigma is a thing. Illiteracy, coercion, fear and dishonesty are all very real components of the healthcare system (if you can call it that) in Kenya. As scientists, it is our task to find ways to work within this broken system. A huge part of how we do this, is to tap into community resources and relationships through Community Health Volunteers (whom I will talk about in my next post). Of course this means taking a back seat in terms of patient interaction, which, for me, is yet one more barrier between me and the people I’m supposed to be “helping.” At first that gap sort of bummed me out. Then I realized that my feelings didn’t matter because this also adds one more layer of protection for our participants’ identities. At the end of the day, improving the well being of the Kenyan people is THE GOAL of my thesis project, which should include security and peace of mind. So fuck it, they can keep their secrets. We’ll deal.

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Your Results Are In

We sit in our ivory towers thinking very abstractly about the places we collect our samples. We give presentations tossing out numbers of people infected like we know what it means. We have access to all the supplies and equipment we could possibly need to solve scientific problems on the other side of the world. But we have no idea what that problem even looks like. That is, not unless we leave the comfort of our labs and venture out. That was my goal this summer more than anything else. Sure, I wanted to collect some data, train some scientists, build capacity- the usual talking points. But more than that I wanted to understand. I wanted to get an idea of where the little cryovials I thaw and stain come from and what the pages of excel data I plug into R mean. So I made a point to go to the Clinical Research Center (CRC) one day and follow our study director- Felix- around.

The day I visited the CRC was a slow one. There were no follow up appointments scheduled and, because the doctors were on strike again (apparently this is common), no primary visits were expected. As such, Felix decided to show me what an enrollment appointment would look like by having me go through the motions as a participant. He started at the “front desk” but I’m going to backtrack to the entrance to the hospital.


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The Odinga Teaching Hospital is located on a four(ish) lane dirt road. Two of those lanes are shut down and have been for months to be “repaved.” The other two lanes act as a major thoroughfare through Kisumu. They are perpetually teeming with cars, motorcycles, bicycles and pedestrians. To get to the gate of the hospital, you have to cross two lanes of traffic and then drive along the crumbling pavement of the closed lanes, navigating other vehicles, construction workers and the posse of police officers that normally loiter in front of the gate. For me this is no big deal. I’m staying nearby and get shuttled around in KEMRI-issued, suped-up jeeps. It’s a bit bumpy, but woe is me. If I was a study participant though, I might be arriving on foot or on the back of a Community Health Worker’s (CHW’s) motorcycle (probably holding on for dear life). And who knows how long I have traveled or what I had to leave in order to be at the clinic for. I may have missed a valuable day of work. I may have left children or parents behind. You just don’t know.

I would then go through two sets of guarded gates to arrive at the CRC. The guards are there to check IDs for all the lab staff and referral cards for unaccompanied study participants. The guards direct participants to the appropriate part of the compound for that study. This is as much for security as it is for privacy of the participants. However, because of the general distrust towards the government and the police force, these security checkpoints can be very unsettling to participants.

[This is when Felix steps in and starts pretending to be my tour guide/CHW.] Felix guides me to where the TB studies are being conducted, which is literally just a bunch of tents in the courtyard of the compound. Because it’s the Kenyan way to be positive about things, Felix justifies the tent courtyard by explaining that the TB teams actually should be in the open air considering the mode of transmission for TB is aerosol. As such, confined spaces may increase the risk of health care workers contracting TB when interacting with TB patients. Even the chairs at the “front desk” of the tents have the participant facing a 90 degree angle from the study coordinator such that aerosols are directed away from the health care worker. I’m not sure I buy this entirely but if it makes them feel better about their situation who am I to judge?

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So I first walk up to the “front desk” tent where Felix explains I would turn in my referral card. It would state what kind of participant I was- an actual TB patient or a household contact- and where I had come from- Kisumu, Kombewa or some other remote health clinic. I would fill out my contact information for follow up appointments as well as the names and info for all of my household contacts so that they can, perhaps, be recruited to the study as well.

I am then directed to a “waiting room” which is actually just a couple of wooden benches under one of the larger tent canopies. Felix explains that sometimes these benches are completely full. People may wait hours for their screening, just sitting on these benches, staring at each other, and pondering their life. Think about how awkward the waiting room in a doctor’s office is- especially if it’s like a gynecologist. That’s how this is, but even more uncomfortable because you can watch everyone else’s “appointment.” Plus it’s hot and there are bugs. No fun. Felix tells me that they try to make this part as comfortable as possible to demonstrate their appreciation for the participants. I would therefore be offered a beverage or even a hot lunch from the cafeteria, which, depending on my circumstances, might be the best meal I eat all week!

IMG_5646Since there are no participants today, it’s automatically my turn though so I go to one of the nurses’ tents and begin the screening process. If this was a real visit, the nurse would take my vitals and patient history and administer rapid screening tests for things like hemoglobin, malaria and pregnancy. The first two require a finger prick to get a drop of blood and the last one is a basic urine test. I would go to the bathroom for this last one where I would also (hopefully) provide a stool sample. In order to preserve resources though, we just do the malaria test (negative of course). While we wait for the results to come in, we chat about malaria prevalence in the region, but if this was a proper visit the nurse would use this time to explain all of the different studies to me. She would go through the risks, the procedures, the requirements and how it would benefit me. (This dialogue is super critical and I am so beyond impressed by everything the nurses have done to make this conversation more straight forward for the participant.) When she has all of my initial screening information complete she would check the boxes of the studies I qualify for and I would go on to the next phase. For our particular study we exclude individuals who come up positive for any of the three initial tests mentioned. I would still be in the running, but this is not the case for a large proportion of participants who come through this site. Luckily many other studies are not as stringent and can still enroll these individuals.

Felix then walks me to the phlebotomy (blood draw) room which he explains used to be shared with the janitorial staff. He regales me with a story about how the TB team basically bamboozled the janitorial staff into giving up their half of this room by offering them a bigger unshared space. The catch is, they didn’t tell them the new space lacked air conditioning. The phlebotomy room, thankfully, does. I can’t imagine getting blood drawn outside in the heat. Plus it’s better for the samples. Anyways, I would first sit in another make shift waiting area since the phlebotomy room really only has space for two technicians and one participant. Much of the space is taken up by incubators and refrigerators to preserve the integrity of samples before they are transported to other labs. Here they would draw my blood for any and all studies that I still qualify for. The screening draw is usually small- a few vials to test TB reactivity, one for HIV, another for general immunology assays, and maybe one for other doctor-y stuff that I don’t ever think about.

After this, I will consult with a proper doctor behind closed doors in one of many tiny rooms located next to the phlebotomy room. Each one has barely enough space for a small table and two chairs. On the wall there is a light board to display chest x-rays for active TB participants. He will go through my results thus far with me. If I had been recruited as an active TB patient he will explain my diagnosis and the treatment regimen, which I will receive at no cost. If I turned up positive for malaria, I will similarly be provided with medication. This will likely be my first private moment of the day to contemplate my health.

IMG_5650After this, I am finally free to go. At least for the day. I would get taken home on the back of a motorcycle by a CHW. Once back with my family and my community, I would process the day and decide for myself if I actually want to participate in this study, now that I know all the details. The rest of my results may take days or weeks to come back in, so I have time. When the results do come in, I will be officially enrolled in whatever studies I qualify for. The study coordinators will contact me to arrange for follow up visits and I will continue to receive care and provide samples as long as necessary. Of course, I may decide “fuck that” and drop out of the study, as so many do. And so it goes.

It may seem strange that so many participants end up falling out of a study, especially for those individuals receiving free antibiotics to treat TB. From a first world perspective it seems like they aren’t prioritizing their health. As a scientist, I was often annoyed by the proportion of individuals “lost to follow up.” Ughhhhh the missing data points!!! But after going through this process with Felix and realizing the strain of even the initial screening visit, I sort of get it. It was a fun little exercise for me. Surprise you don’t have malaria! What a shock! But that’s not how this goes down most of the time. There is a lot of information being tossed at you all at once, some of which you don’t want to hear and don’t know what to do with. There is absolutely no privacy. And then there is just plain old fear. The medical/scientific literacy of the general public of Kenya is not super high and so participating in a study just kind of freaks people out. I get it. What a tumultuous experience. I guess the bottom line is there are so many factors that go into terms like “non-compliant” and “lost to follow up” that you just don’t process until you see it first hand. I can sort of understand why someone wouldn’t want to go through more blood draws, more shame, more lost time, more anxiety. Which brings me to my final thought on this exercise- Damn am I grateful for everyone who is able to set aside all of that negativity and still participate in my study. The scientific community thanks you.

Guilt Trip

“Oh my god! Welcome back! How was Kenya? Was it soooo amazing?”

 

What a loaded and unavoidable question. For the last month every single person has greeted me with that question and I still haven’t come up with a good answer. “It was… weird” doesn’t really cut it, does it? Especially when everyone just wants to hear some derivation of “It was magical and I am a better human now!”

But since I am pretty much incapable of sugar coating things just to satisfy people, it’s hard for me to choke out a “It was magical!” because it wasn’t. It was frustrating, disheartening, lonely, and emotionally turbulent. To be fair, it was also beautifulinspiring, and grounding and I do indeed think I am a better human now. I have a much greater appreciation of the scientific topic I am studying, the people it impacts and the work that goes into collecting the samples I utilize. It’s just that the positives and big picture takeaways don’t erase my feelings. They do however make it “worth it” whatever that means.

Being an American scientist in Kenya was frustrating in more ways than I can begin to explain. Aside from the obvious social, economic, and health injustices that I was only pseudo prepared to encounter, the work cultures of Americans and Kenyans are just so incredibly different. And of course being a woman in science just sucks all the time- though I’ve now discovered that it sucks for different reasons across the globe (awesome). I have tried in safe spaces to talk about my feeling and experiences in order to tease them apart. It’s so hard to be critical of another culture without sounding like a god-damn racist. But what it comes down to is that science operates as it’s own community and being critical is an integral part of our cultural norms. So in Kenya I was basically dealing with an ongoing culture clash between American, Kenyan, and scientific cultural norms. I’ve tried to explain this below because I think it’s important to consider for the posterity of international collaboration but the tl;dr is: Science abroad is confusing and draining if you aren’t culturally prepared. But, and this is a big but, it is so worth it. Which means that we need to figure out how to talk about it.

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I ate lunch here every day (mostly by myself) either reading or writing in my journal

I am fairly well traveled. I just need to state this for the record so that people know my level of naïveté going into this summer. I’ve been to 26 countries spanning 4ish continents. I have even worked in a non-English-speaking lab abroad before. I’m not a noob. And I genuinely like traveling! I am super interested in the customs and people of each new place I go and I try to absorb as much as possible. Usually this means shedding my American tendencies and spending more time listening than speaking. Obviously I still fuck up and say or do the wrong thing. Case in point, I didn’t realize showing your knees was such a big deal in Kisumu or I would have brought different clothes. But for the most part, I defer to locals whenever possible. The last thing I want when I travel is to be that American traipsing about reinforcing the ignorant, close-minded, patronizing archetype that has come to be so prevalent on the world stage.

As a lab guest in a country where there is already tension between Americans and locals, being sensitive and not overstepping my bounds were initially my first priorities. I was in Kenya, however, to train others in techniques that I am an “expert” on. This automatically put me in a power dynamic that directly conflicted with my general outlook as a traveler. I was constantly struggling to maintain a balance between knowledgeable teacher and gracious guest.

Situations would arise in the lab that I felt could be done “better” and each time I would have to think to myself “is correcting this necessary to protect science or can I let it slide?” That is a tough question for a young, idealistic scientist such as myself. In the core of my body I feel the need to protect the purity and sanctity of science. I am fiercely devoted to my field and I get very angsty when I feel that something may set back progress in TB research. When I saw something in Kenya that I felt could be done in a different way, every fiber in my being would tighten. I had to remind myself that just because it’s my way doesn’t mean it’s the better way. The end result may be the same. So unless something was truly scientifically wrong, I bit my tongue. I’m not going to lie. it broke my heart a little bit every time I let something slide.

Of course it wasn’t any better in the instances when science was indeed in jeopardy. First, that is a terrifying realization to make. Second, no one likes having to correct another human (Well some people do but those people are sadistic weirdos). It is uncomfortable for both parties and more often than not it ends up with hurt feelings. There is an art to correcting another person without making them feel like shit. I tutored and taught for years and I mastered that art with my students, but that’s because I had become familiar with them. I knew how they thought and how they would interpret my words and actions. Plus most sixteen year olds in America are similar enough that I could predict reactions and appropriately give guidance, even with new students. I didn’t have that same rapport with the scientists in Kenya so I couldn’t adjust myself to them. And because of cultural differences I couldn’t even begin to guess how they would react. I knew very little about Kenyan cultural norms except what I had read on the internet- which like, how reliable is that really? I felt woefully unprepared to handle such situations. I still have no idea how I was perceived by my lab mates. I may have been a total asshole the entire trip and I’d never know because they were too kind to inform me.

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So many feelings…

Trying to balance a requirement for scientific rigor and an acceptance of differing cultural norms is a gut wrenching position to be in. It was even harder for me because I was doing it on the fly with limited prior cultural awareness. I had to decide in the moment whether this was a battle to pick and how to pick it. I almost never had enough information to go on and I fucked it up more than once. There were times when I regretted speaking up because it was unnecessary and just drew lines in the sand. There were times when I wondered if I actually should have been tougher because no one listened to me. There were times when I knew I had hurt another scientist’s feelings and I wondered if it was worth it to hurt them in the name of science. Of course no one makes the right choice 100% of the time but I was wracked with guilt for weeks worrying that I had been too tough, too inconsiderate, too lax, too sensitive.

After my trip I was able to debrief with two women that I admire a great deal- my boss and a CDC director based in Kenya. I explained to them the scientific situations that had arisen and the way that I had decided to address them. I also shared my frustrations and concerns about culture clashes in the lab. They commiserated with me, encouraged the strategies that worked and gave me advice on the situations I hadn’t handled well. It was a lot of “yea that happens” and “you did the best you could” and “it’s up to them now.” It was affirming to know that I wasn’t alone in my experiences, but also a little frustrating. Like why didn’t we have this conversation before I left? I would have been so much more prepared! It’s not enough to say it’s different. You need to know how it’s different and how to deal with those differences. It would have been so much less emotionally tumultuous, and probably more productive had I known these things before hand.

I think about the fact that I’m pretty well traveled and I still sucked at this. It makes me worried because most biomedical grad students were science majors in undergrad and probably haven’t had a world cultures or world history class since high school. I guarantee that most grad students, if sent to work abroad, would be just as culturally unprepared as I was. And to be honest it scares me. It’s so detrimental to science and therefore global health! Like, what if I had just been flat out insensitive? That happens all the time when people travel! And while being an asshole on vacation is not ideal, it’s also not the end of the world. But in science being an asshole could result in a bridge burned, a collaboration lost, a cache of knowledge left untapped.

An on the flip side, what if I hadn’t been able to talk out my feelings when I returned. Would I be left with a sour taste in my mouth? What if I continued to spread that amongst the scientific community? Would people stop sending students abroad? Would scientists stop wanting to go abroad? Would the chasm between the ivory tower and the grimy real world continue to separate us?

I have no idea what the solution to this is, other than a little bit of candor. So I’m going to spend the next few weeks sharing stories and reflections from my time in Kenya. Not all of them will be pretty or uplifting. I hope people reading understand that these stories are not meant as an attack or an insult. I’m just trying to provide an authentic picture of what it means to do field work. Spoiler, I didn’t skip around fields in Kenya befriending small children and curing TB with my amazing intellect. I did however learn a lot about Kenya. I did in fact make a small dent in the scientific problem. So for all my griping, it really was an incredible and fulfilling experience and I hope to return.

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Sunset over Kisumu and Lake Victoria

Lab Snob

Kenya Medical Research Institute (KEMRI)

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People warned me about the lab facilities in Kenya. Everyone expressed some variation of  “You know it’s not the same as in the US, right?” And every time I looked at them like they were crazy, but not because I was surprised. I am not some naive, sheltered PhD student who thinks everyone gets an LSR-II and precast gels. Nor am I a lab snob- at least I try not to be. I have worked in low budget labs, low access labs, unsanitary labs, you name it. I have also worked in a lab abroad before so I’m not exactly a noob. Whatever my situation was, I made it work.

So you don’t think I’m full of shit, here’s a brief example. A few summers ago I worked in a lab in China- a land of duality with old and new co-existing everywhere you look. The lab was no different. We had a NanoDrop but were still developing Western Blots on film in a dark room (which smelled like a rotting vivarium fyi). It was a weird place to do science. At one point, the air conditioning broke in the main lab room and, because of nonsense bureaucracy, it didn’t get fixed for a couple of weeks. Beijing in the summer is easily 90 degrees Fahrenheit and humid. If I wore my gloves for more than 20 minutes, sweat would start to pool in the fingertips causing my fingers to prune. Super cute, I know. We had to do all our experiments on ice just in case. But we did it and we got beautiful data for the grad student we were assisting! Long story short, science doesn’t care about your comfort.

So when people warned me about Kenya, I looked at them like they were crazy because duh. Literally duh. Of course it’s not the same. I would never expect to have the same luxuries that I have at Emory, but it’s not like that would ever deter me from the experience. Regardless, I heeded the warning and steeled myself up for terrible lab conditions. Now that I have spent three weeks here I can safely say that everyone is a Big. Fat. Baby. The TB lab at KEMRI is SO NICE. Now maybe my opinion is biased because I was expecting a shit hole, but really the facilities are pretty awesome.

Like this is the avenue you drive down to get to the lab (after driving through two guard posts mind you). Not a bad place to spend 3 weeks.

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My first day in the lab, I got three separate tours. Everyone wanted to make sure I could orient myself and show me what kinds of projects they had going on at the site. Each one of my tour guides kept saying things like “I know it’s not much” and “It’s not like at Yerkes/Emory/The US.” And I was just staring at them blankly because in a lot of ways it is EXACTLY like the US. They have all the standard immunology stuff- hoods, incubators, centrifuges, autoclave, ELISA readers. There were even a few crazy, high tech pieces of equipment that I did not recognize. I really didn’t understand everybody’s sheepishness.

IMG_5792 (1)I later discovered that the building the TB lab is in is in fact one of the nicer ones on campus. On day two I shadowed one of the scientists doing helminth diagnostics. We went to a Neglected Tropical Disease (NTD) room in another building and it was pretty dated. But then again, so are the methods used to diagnose NTDs so I wasn’t that surprised. The only things you need for helminth diagnostics are stains, slides and a simple light microscope. Plus NTD diagnostics usually involve poo so who wants to waste a fancy clean room on that. The point is that it doesn’t really matter how nice the facility is as long as you can do your work. Does the campus here have all the hoity-toity cores that we have at Emory? No, of course not. I’m not even sure there is a vivarium. But for standard immunology and microbiology assays, they are pretty set.

I feel like it is important to disseminate this information so that other scientists think to partner with KEMRI or even come here to do their own work. I certainly didn’t have a good grasp on the lab facilities prior to working here and I cannot be the only one. Plus back home people have this misconception that if a lab isn’t state of the art, that the science conducted is sub-par. But fancy equipment isn’t as important as good scientific questions and experimental design. Eight color flow cytometry can answer A LOT of questions if you design your panel well and have the right samples. And boy does KEMRI have all the right samples for scientists like me.

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As stated in my last post, it is beyond weird that we just take these samples and run back to the US to study them. Why do we do that? Or I guess the better question is why don’t we study them here? Why not conduct science in a place where the results actually matter? Why not bridge the gap between the patient population and the bench work? I fully admit that I’m being a huge hypocrite in saying this because in fact I could not do my 13-color flow assay here, but there are a lot of things I CAN do for my project. During this trip I ran 18 ELISA plates to quantify antibodies against the worm I study. There was a moment when I was prepping plasma for a plate and a new sample came in from a study participant pertinent to my assay. The lab techs aliquoted off some plasma for me right then and there and continued on with their day. Easy as that. No freezing. No waiting for enough samples to batch in a shipment. Furthermore, while the results of this assay will be a blip in a paper when I graduate, they matter tremendously to the scientists and community here. I briefly presented my results regarding discordant diagnostic results during seminar last week and it stirred up quite a discussion between the various teams here.

I get that there are challenges in conducting certain experiments here, especially since there are issues with the supply chain and government corruption (more on that later). I concede that not everything can be done on site, but there is always a happy medium. My boss has done a great job at finding that medium. While she has a majority of samples shipped back to the states, she leaves what she can here in Kisumu for the Kenyan scientists to conduct their own experiments. She makes a point to leave at least two vials of cells from every participant here, even if there are only two to begin with. She also works with the students here to help them develop and execute masters and PhD thesis projects. This way some of the work and expertise always stays local.

This is so important because it builds capacity at places like KEMRI. By physically basing science here, it empowers local scientists here to take agency over their work. It trains these scientists in new techniques which can then be passed on to the next generation further building the scientific community. Increasing capacity in turn entices more people to base their studies here, bringing in money, supplies and expertise from around the world. And so the cycle repeats.

We shouldn’t treat KEMRI like it’s a post office. It’s not. It’s a fully functional scientific campus. And more importantly it is full of people ready and willing to work towards the same goal we (presumably) all have- to improve human health and eradicate nonsense like TB.

Optimism in the Face of Failure

-You know how some books change you? You read them, and the words burn in your mouth and your throat, making you feel like you want to scream. Even after the words start to fade from memory, they still somehow stick to you. They seep into your bones and tangle themselves in your heart, permanently residing in you, changing you. Zen And The Art of Motorcycle Maintenance is like that for me. I am therefore devastated by the loss of Robert Pirsig. Normally, I am not so undone by the loss of a literal stranger, but I truly believe that had it not been for his book I would not be in graduate school.


When I graduated high school, I went backpacking through Europe with some of my friends. Both of my parents gave me a book for the various planes, trains, and automobiles I would undoubtedly ride. My mom gave me Midnight in the Garden of Good and Evil (a wonderful book, but a story for another day) and my dad gave me Zen And The Art of Motorcycle Maintenance by the late Robert Pirsig.

Zen is roughly 500 pages of (semi) narrative philosophy and I was eighteen at the time. Needless to say, I was highly resistant to reading it. But when you run out of other stuff to do on your umpteenth train, you reconsider what qualifies as entertainment. That, and I idolize my parents, so I truly wanted to read the books they felt were valuable to me. Considering that now, at 26, I’m writing about it, you can guess that I am glad I eventually caved.

Zen challenged my ideas of value, beauty and quality and altered the way I look at technology, mental illness, and of course, middle America. But one line in particular has haunted and inspired me every day of the last 8 years. More recently, it has become a mantra for me in graduate school.

“To live only for some future goal is shallow. It’s the sides of the mountain that sustain life, not the top.”

 

I am a goal oriented person, particularly with regards to my education and career. I have known what I wanted to be when I grow up since I was in middle school. That goal has been refined over the years, but never altered. I have always had clear steps outlined for how to achieve that goal and so far, I have met almost every one of them. I’m insane, I know.

High school me was even more of a type A, schedule obsessing, control freak, than I am today. My entire self worth was based on achievements. I had a fucking meltdown when I failed my drivers tests because I had “never failed anything before.” (I fully said as much in between sobs at the DMV.)

This is why the quote haunted me. It made me question the way I lived my life. Which I kind of loved, to be honest.

There’s something about being 18 and without adult supervision in a foreign country that is exhilarating. I honestly think the setting in which I read the book broke down my barriers making me receptive to it in the first place. Layer on the fact that the messaging was coming from my parents who gave me the book (they were constantly telling me to simmer down). I just felt like it mattered, you know? So I listened. My group wanted to change our itinerary on a whim to stop in a tiny mountain town in Slovenia. And I accepted it. We went white water rafting and I just about got hypothermia but It. Was. Wonderful.

So I began college trying to open my mind, my attitude, and my outlook on life. And I was lucky enough to have a friend who challenged me to to do so. I was such a planner and a rule follower and he was constantly forcing me to be spontaneous and think outside the box. I don’t think he realized that every time I said “We can’t do that!” and he said “Why not?” that I was channeling Robert Pirsig in my eventual “I guess you’re right. Let’s do it!” Each and every experience reinforced the idea that embracing individual days is important. Embracing the process is important. Embracing the unplanned, the spontaneous, the unexpected is important.

Which brings me to science.

Literally none of my experiments in undergrad “worked.” I got nothing but negative data which is why I am still unpublished, despite years and years of toiling in lab. (I’m not bitter or anything.) And while it was obviously frustrating and I had my days where I wanted to cry and rip my hair out, I persevered. At my darkest hours, I reminded myself that the process was important and I moved on. This is how science happens.

So when I applied to grad school, I said as much and nearly every faculty member, I interviewed with agreed. I will never forget at my Emory interview one faculty member said “I think you will be successful in science because you are optimistic in the face of failure.” I fucking loved that. I thought I was going to kill grad school.

What no one tells you, is that graduate school is mostly failure. I think I fail a little bit every day in fact. And failure inevitably comes hand in hand with shame and crippling self-doubt. [So much so that the the Office of Health Promotion at Emory is hosting an event on Friday titled “Failure and Shame in the Course of a Graduate Career.” You can’t make that shit up.]  You are constantly questioning your self-worth. Am I good enough? Will I make it? Should I quit and play kickball? Is that embarrassing? What will my ______ think? For almost three years now, every time someones asks me “How’s school going?” my stomach drops out and I scramble in my head to try to find positive things to say. Usually I say something along the lines of “it’s a nightmare, but I wouldn’t give it up for anything.”

What I realize now is that I have learned to love the process– it has kept me sane. Yes, I have goals. Yes, I have plans to achieve those goals. But I no longer live each day for those goals. And believe me, I do not say that lightly. It is an effort to do so and I am not always successful. But in the midst of perpetual failure and rejection, it is so necessary. I still can’t wait to get out, but I’m surviving.  Which is saying a lot because I know that had I remained as goal oriented as I had been at 18, I would have self destructed by now. Instead, whenever I fuck up an experiment, or get negative feedback on a piece of writing or get scolded by some authority figure or another, I try to find a reason to love the process. Some days I need to be reminded to do so. Some days I can’t do it at all. It’s a work in progress, but then again so am I.