I’m in Kampala, Uganda this week making photos and telling stories with my co-worker Mary Engel for the Fred Hutchinson Cancer research center. The following story happened this weekend.
I met six-year-old Musobya Musa three days ago on what I hoped was the worst day of his life.
I photographed him as writer, Mary Engel interviewed his mother, and then I went into the pediatrics ward to make more pictures as his mom attempted to comfort him with morphine. I made a handful of pictures of them, and I’m ashamed to admit I couldn’t take it. Watching little Musa writhe in pain got to me, and I had to excuse myself before I completely broke down.
I would have ran away from that scene. In fact, I tried, but I couldn’t because the hallway was crowded with alternate versions of the same scene playing out with other families.
There is a moment when I’m completely trapped in the hallway, a nurse in front, another behind, each of them treating suffering children in cribs on either side. I begin quivering. My cameras are impossibly heavy. Sweat trickles down my back, as I attempt and fail at the journalist’s mind-trick of temporary emotional detachment.
“Dear God, please allow me to pass,” I whisper while looking up at the ceiling.
The smells of hot sickness, pain-fueled sweat, and human waste are on me. I can almost feel them penetrating my clothes and soaking into the pores of my skin.
There’s a fearful whimper to my right. I reflexively look down into a crib that God or the Devil won’t allow me to ignore. A child, so sick and small I can’t tell if it is male of female, whimpers again as a nurse does things no child should have to experience, and our eyes lock. She, I think it’s a she, stares into my heart with impossibly beautiful brown eyes. Tears rim those eyes and an occasional tear overflows and slips quickly down her brown cheek.
Her tiny right hand, clenched in pain, suddenly opens, and she raises her arm to me. I don’t know what I’m supposed to do. Do I reach out to comfort her? My hand moves toward hers. We are about to touch.
“PLEASE MOVE OUT OF THE WAY,” one of the nurses sternly whispers into my ear.
She needs better access to this child. So, she and I shuffle around each other in what reminds me of the close embrace of dancing tango. And suddenly my prayer is answered as I’m presented with an exit. Pausing at the threshold, I look back to get another glimpse of the child in the crib, but all I can see is the nurse’s back. Feeling weirdly guilty about something (I don’t know what) I step out into the sunshine of a cloudless African afternoon. A gentle breeze lifts the collar of my photo vest and gets into my shirt, beginning to cool me down.
I stand there for a few moments blinking in the bright light. My mind is already drifting away from the intensity of Musa’s suffering. Maybe it’s some kind of coping mechanism. I’m not sure the mind of a non-medical care provider could sustain that level of intensity.
Thirty minutes later, Mary and I are in the van. We’re headed back to the hotel where we will write, edit, produce and file our story about Musa, his mom, and the life-saving technology that will ease Musa’s pain.
Later that night I’m eating spaghetti and enjoying a glass of good whiskey when suddenly I’m wondering about Musa. I wondering if he is able to sleep tonight. I’m wondering if he’ll be able to hang on until his test results get back Monday morning. I’m wondering…
After dinner, I go out with new friends to a dance club on the dark edge of Kampala. The people I’m with are open, friendly and inviting. I’m told it’s the Uganda way, and I like it. I’m dancing with two pretty, young African girls in the middle of an open-air dance floor. Moonlight sparkles on their skin as the one on the right looks up at me. Our eyes lock. A moment that easily could have been passionate suddenly pushes my heart back into that hallway in the pediatrics ward, and right there I start to cry as dance music pulses into the darkness on the edge of town.
The girl pulls me aside, asks why I’m crying. How can I possibly tell her she reminds me of a sick child I failed to comfort? So, I lie. I tell her I’m feeling homesick. She smiles and wipes the tears from my face. She wants me to come dance with her some more, but my heart’s not in it. This scenario of not being able to enjoy moments because I’m wondering about Musa haunts me all weekend.
I’m at dinner last night with the doctors and scientists who run the program and do the research that will save Musa and those like him. Mary and I are listening to the director of the program. He is telling us how he deals with the frustration and disappointments that are part of working within a complex international system when my phone beeps. It’s the sound that tells me an email has come in. Unlocking my phone, I hit the email icon as the director continues talking. It’s an email from one of the doctors at the pediatrics ward.
“I regret to inform you that Musa passed away due to complications related to the high tumor burden he had…”
I interrupt the director to tell Mary about Musa. Silence descends on the table as the personal tragedy of this little boy’s death rolls over everyone.
Eventually, conversation returns to the big picture. After all, these amazing people have gone through this hundreds of times. But I’m done listening. I can’t hear another word about plans and annual budgets. So. I fill my glass with whiskey and wander out to the garden where I find the half-moon looking down on Africa. Frogs, bugs, birds and something that sounds like a monkey call into the darkness as tears roll down my stupid face. We’re all feeling lonely tonight. We’re all missing Musa.