The Courageous

The first morning I entered the ward for child cancer patients, all eyes turned towards me.  Apprehensive.  Curious.  Unsure.  The doctors definitely weren’t keen of my presence.  It seemed that I was expected to walk in, snap some pictures of sick children, the most grotesque wounds most eagerly directed to me.  But instead of snapping photos, I huddled in the corner near the doorway leading outside, and watched.  And smiled.  Shyly.  And weakly nodded my greetings to wide eyes.  Among me were fighters.  Courageous fighters in the battle against cancer.  Children too young to suffer such horrendous conditions, silently suffered.  Swollen hands from permanent IV tubes, sad eyes and gentle smiles.  Equally courageous, their caregivers – mostly parents, mothers primarily, and sisters. 

 Most children don’t receive a proper diagnosis until the cancer is in an advanced state, often identified by large, inoperable tumors. When a child initially becomes sick, malaria is too often considered the culprit.  In a society that has limited access to reputable healthcare and even less knowledge of cancer, it makes sense that the disease goes undetected. Unlike hospital wards in the US where each room only has one or two beds, dozens of beds and cribs were crammed into a single room.  There were no nurses to care for the children, to bathe them, to feed them.  Those jobs fall upon the caregivers.  With limited funds, simply providing treatment is a struggle for UCCF and the families with sick children themselves.  Families struggle to simply find enough money for transport to bring their devastatingly sick child to UCCF and then they face the continued challenge of paying for medicine, food and other basic needs.  UCCF tries to fill the gaps, but the gaps are just too big.

Together, these children and their caregivers fight the battle for survival.  Sadly, too many lose that battle.

One afternoon, I arrive to greet some of my new friends.  I notice one bed is empty.  The bed that Rose, cared for by her sister, Harriet, slept in.  I remembered Rose well.  That first morning I entered the ward, my heart lurched as a nurse assisted Rose onto a scale.  Frail, an understatement.  Brittle. Fragile.  How her thin legs were able to bear the weight of her swollen belly mesmerized me.  Her sister, Harriet, had sat by her side. 

Early that morning, Rose had died.  Bittersweet.  At least her suffering was over.  Now, hours later, Rose’s body lay on a bed outside the entrance to the ward with a sheet protecting and comforting her.  And Harriet wandered around the compound looking for money for transport, the equivalent of about $10, to bring Rose’s body home.  Ten dollars.  Just another indignity suffered by these courageous fighters.

On my last day before leaving Uganda, I brought photos of the children to distribute as a gesture of my appreciation for their willingness to open their hearts and their sorrow to me.  It reminded me of my first trip to Uganda back in 2006.  I had only been photographing in the Acholi Quarter for about a week when one Saturday morning I came to greet my “surrogate” mother, Esther. As I approached her house, I knew something was terribly wrong.  Dozens of shoes were on her doorstep.  I slipped mine off and added them to the mass.  Inside a tiny body lay on a woven mat, wrapped in a sheet.  Women sat quietly, tearfully murmuring. This was Esther’s grandson.  4 years old.  A victim of malaria.

I sat with the women silently for some time.  Soon a tiny coffin appeared.  The photojournalist inside of me could no longer be stilled.  I was in Uganda, in the Acholi Quarter to tell a story.  Their story.  Their story of struggle and survival.  This was part of their story.  I finally worked up the courage to ask Esther if I could take a photograph.  She was silent.  In the extended silence, my heart pounded so loudly I thought the walls were vibrating.  Here I was, a visitor, a guest, asking to photograph the unexpected death of a child.  New to the community, but trying to create a strong enough bond which would enable me to tell their stories.  Had I just ruined this newlywed relationship?

Finally Esther looked up at me and broke the silence.  Directly and clearly she spoke.  “Will you bring me back a copy of the photograph?”  I paused in disbelief.  In the US we have albums and framed photos chronicling our lives.  It never occurred to me that someone might die and there would never remain a photo to immortalize a life.  I nodded, assuringly.

So now, here I am at UCCF saying farewells, knowing most of these children will die before I return and they will be replaced with more children who will also likely die, and will most definitely suffer.  So these photos, these will be the reminder to the family of all the Roses.  As I give them out, there are two children I can’t find.  I go to their beds.  Empty.  I show the photos to others, seeking their assistance.  But they are no longer there.  They have both died.  In just 4 days, 3 of these children have died.  I keep passing the photos around, “But what were their names?” 

This is my humble effort to give life to the nameless faces.

Hope Cures

Our UCCF Partnership