A Lesson Learned.

A note about this post: I wrote it when I was very sad. In the spirit of authenticity, I’ve decided not to change anything but spelling errors. But please don’t worry about me. This is what I signed up for, I knew this experience would make my heart hurt in many ways. And trust me. Despite the fact that, as many of you know, I’m an easy crier, I’m actually stronger than I look and I’m getting stronger by the day.

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I know I haven’t yet written about Tanzania, but I just got back from the wards and there is a torrent of emotions coursing through me that I really don’t want to vent as tears right now, given that I’m at work. I’m choosing instead to try to find release through words, through a blank page, even if it is electronic. After all, this is part of the reason I came here, right? To learn how to control the million and one difficult emotions children in pain elicit in me? Or at least how to transform them into something productive? Ok so here goes.

Let me start with some background. Contrary to what this blog may make it seem like, I don’t just spend my time cavorting around Durban and Africa, meeting people, throwing dinner parties and finding my inner yogi. I do work in an office, much like many of you. It’s just that my office work is so…flavorless most of the time that I choose not to spend time talking about it. I mean there’s only so much you can say about reviewing journal articles, sifting through musty old patient charts and filling out excel spreadsheets. As I mentioned once before, I’ve discovered I’m not really meant to spend my future in an office conducting research, so I have nearly zero motivation to write about my office work in this blog.

Given the near claustrophobia I sometimes feel in the office, I decided a few weeks back to spend some time daily in the pediatric ward of the hospital. Some days I listen to the infectious disease doctors round on their patients (“round” is just medical lingo which means go around discussing their patients). Sometimes, I watch one of the doctors perform whatever procedures her patients need that day, whether it’s a blood draw or spinal tap to sample the fluid bathing the spinal cord (or cerebrospinal fluid). But most of the time, I spend an hour or so just playing with the children. Why is this? Well the reasons are twofold. First, I STILL don’t have formal permission to perform procedures on patients. (I don’t even want to go into how frustrating this has been, waiting for the bureaucratic process to play out in Johannesburg.) So I can only shadow, just like I used to do back in my premed and early medical school years. Funny enough, where before I used to die of boredom shadowing, my hands aching to grab the needles or talk to the patients myself, now it is a breath of fresh air. I found this out about a week ago, when two hours flew by and all I’d done was watch this amazing physician draw blood from some of the most difficult to stick patients ever: bony, dehydrated children with nearly empty veins.

Anyways so that’s the first reason I spend most of my time just playing with the children. The doctor I shadow has told me she’ll let me draw blood, do biopsies and even perform spinal taps…as soon as my HPCSA registration comes through. In the meantime, I watch and play. The second reason I spend so much time just playing is because I’ve never seen children so in need of human attention and direct physical affection. I’ve volunteered in remote, rural underserved areas of Latin America before where children begged for attention as well, but at least in those places, they weren’t slowly dying of AIDS. Here the children are plagued by some of the most severe forms of disease I’ve ever seen, not to mention some terrible environmental tortures (swarms of mosquitoes descend on the sleeping children at night…nearly every child in the ward looks like he or she has chicken pox or measles but it’s all mosquito bites). For some reason, I can handle all that. It’s tragic, it’s devastating and quite frankly it’s unforgivable to have children dying of AIDS in this day and age, when on other side of the world, in America, we’ve managed to essentially eradicate pediatric HIV by aggressively treating pregnant women and newborns. So the pediatric death rate here due to malnutrition, tuberculosis and HIV is horrific and painful. Yet, I can emotionally take it in stride. But the problem I’m facing is that these children face one last barrier to well-being: some of them are also dying of emotional starvation.

I will tell you all the story of the one child who prompted me to write today and that’s all I think I can handle at the moment. As I mentioned, I’ve gone to the wards to play with the children several times in the past few weeks. While there, I met a little boy (I will call him Siyabonga, which means “We are thankful” in Zulu. That is not his name of course, to protect his privacy, but it’s one of my favorite Zulu names and fits him perfectly.) Siyabonga is a sweet four year old with a gentle disposition and severe medical problems; he is currently on treatment for disseminated tuberculosis, which means TB has infected various parts and organs of his body. His belly looks like that of a lifelong alcoholic with cirrhosis; it is painfully distended with fluid, a condition we call “ascites” and which in his case is due to the TB. (A side note for the medically inclined: This child actually had TB-related anasarca, or full-body fluid swelling, but with treatment, this has been reduced to just plain ascites.). Siyabonga is also HIV-positive but has not been started on treatment. According to the chart, anti-retroviral treatment is pending resolution of his “social problems.” In a word, his medical story is painfully typical of so many of the children admitted to this hospital. Sick, with advanced disease, yet not necessarily on all the medications he or she needs because of social problems or barriers.

So why am I writing about him? Well his medical story might be typical, but what struck me most about him was his personality, which somehow manages to shine through the encephalopathy (or brain damage) induced by four years of untreated HIV. Siyabonga is one of the most generous little patients I’ve met here. Many of the children are understandably a bit territorial with whatever “toy” they’re playing with. It’s not hard to understand that if you don’t have much, you’ll cling to what you do have. But when I first got to the ward with a toy I’d bought in the store, Siyabonga impressed me by always being willing to share. If I rolled the ball to him, he’d look at me questioningly and gesture to another child, as if asking me whether he should roll the ball to him too. When I’d nod encouragingly, Siyabonga would immediately relinquish the ball to the other child and patiently wait for it to return to him. (Compare this to some of the other children who would sometimes come at Siyabonga with bared teeth if he took too long to roll the ball to them.)

This is the kind of little boy we’re talking about, the little boy I met on one of my first play trips down there. Today, I saw him again. But today, he reminded me of the second reason why I am glad for the opportunity to spend time in the wards simply playing.

When I’m down there, I try to share my time and attention as fairly as possible, spending no more than 20 minutes with each child or engaging in as much group play as possible, especially with the ones who don’t seem to get visitors very often. I’d already been down there for about an hour, when I noticed Siyabonga, clinging to the pant leg of one of the doctors as she tried to complete her rounds with the medical students and registrars (or residents). He seemed to remember me from the last time I was in the wards, because with very little cajoling, I managed to transfer him into my arms and give the doctor some space to work. For some reason, today he seemed especially needy, clinging to my neck, my arms, my shirt…whatever he could wrap his hand around. I rocked him for about 15 minutes and he fell asleep, at which point, I tried to place him back in his crib. And that’s when this little one broke my heart into a million pieces. He woke up when he sensed being put down and started tearing up, then began crying as I repeated “I will see you tomorrow.” I gave in and let him hold me for another ten minutes after which I realized, I really needed to get back to the office. As I literally pried his hands off my neck, he burst out wailing. Thankfully a nurse came to my rescue and held his hand so he couldn’t run after me, then shooed me out, saying, “Go, go, I’ll hold him.” I didn’t need to be told twice; I nearly ran out of there before all my practiced efforts at keeping tears in my eye sockets gave out.

This child has no idea who I am; he’s met me once before and I sincerely doubt he remembers who I am. So what does this tell you? It means that despite all the physical pain he’s going through with his complicated disease picture, what he’s hurting most from is emotional loneliness. The way he burrowed his face in this stranger’s chest and dug his fingers into my neck spoke volumes to me about his unquenched thirst to be held. He just wanted to be held.

I desperately want to be a doctor. I want to be the one drawing blood or guiding tiny needles into tiny spaces between vertebrae in search for some spinal fluid. I want to diagnose and treat. But if all I take home from this experience is that some children just need to be held, then by God, I promise to never forget this lesson. I will be there to just hold my patients.

Damn it, I just lost the battle against my tears. I guess I’ll stop there since I can barely see the computer screen right now.