NYU Oppy Submission – October 13th, 2009
Joseph Quaderer is a student in the Langone program. On September 14th he began a sabbatical in Kampala, Uganda where he’ll be working for Educate! a non-profit organization that teaches native Ugandans and refugees from the Democratic Republic of Congo, Rwanda, Burundi and Sudan the necessary skills to start and scale social enterprises - financially sustainable organizations that also address important social problems. While abroad he’ll be writing a bi-weekly column for the Oppy.
“Are you ready to go to the pediatric cancer ward?” Baati asked.
I looked at her sideways. “Are you serious?”
We had just finished going to mass at Watoto Church, the main Pentecostal Church in Kampala. Although I’m Catholic, I agreed to go because I want to expose myself to as many diverse groups as possible while in Uganda. I was also impressed with Baati’s steadfast, unwavering faith. She spoke of it often and while I’m not overly religious it was refreshing to interact with someone with such zealous faith. Sometimes it feels like America is slowly phasing out religion, but in Uganda religion seems to be of paramount importance. There are religious undertones and innuendos everywhere. In the morning I am usually awoken by Muslim prayers broadcast over loudspeakers from a mosque not far from my compound. You don’t have to look far to see religions allusions: “God is good”; “Allah is Great”; “God is Number One” – affixed to matatu windshields…boda boda’s…mud flaps. Everywhere.
“I don’t know, Baati.” I stammered. I remembered her talking about it the night before. “I thought you were going with your church group?”
“No!” She exclaimed. “You said you’d come. Don’t you remember?”
I shrugged. Maybe one too many drinks the night before. My favorite local Ugandan beer, “Nile”, is 16 ounces and costs 2,000 USH ($1). It’s a recipe for disaster.
I searched for an excuse. I don’t do well with terminally ill people. I didn’t think I could bear to see children in that state.
“C’mon – they’d love a mzungu visitor.”
I had agreed to come to Uganda even though it meant walking away from a steady job. I had agreed to come to Uganda even though it meant putting my education on hold. I had agreed to go to Pentecostal Church even though I was a Catholic. But a children’s cancer ward? I hadn’t signed up for that. I didn’t think I was prepared but it felt like I was being asked to go for a reason.
“Okay.” I said reluctantly. “I’ll go.”
I got into Baati’s car. We picked up the rest of her family and friends and drove to Mulogo Pediatric Cancer ward - a 10-minute drive from the center of Kampala.
The hospital looked like a dilapidated longhouse perched atop a mound of earth. There were people lying outside in the dirt. As we walked closer the smell hit me. It was tough, but I kept walking.
I heard a grunt to my left. I looked over and saw a woman struggling to carry a child with a distended stomach – maybe an entire foot beyond where it should have been. The child’s upper body was weak and frail. I watched as the woman walked behind into the ward. I followed. The nurse laid the child in the first bed. I watched his chest rise and fall with each shallow, rapid breath. His skin was as thin as paper.
I had only seen one child, but already the room seemed to be shrinking. Pulling me in. I started to panic. I wanted to walk out.
Baati saw me standing in the doorway.
“Joe – come over.”
Baati was kneeling on the floor next to a child with gauze the size of softball on his face. Baati caressed the mother’s arm. I was amazed at the care and compassion in her voice, in her empathetic gaze.
“What’s wrong with your child?”
The mother looked down at her child. She pulled the gauze away to reveal a tennis-ball sized lump over the child’s left eye. The cancerous mass had distorted his face; it looked as though it had been melted.
“Can your child have surgery to remove the tumor?” Baati asked.
The mother nodded.
“How much does the operation cost?”
“One hundred thousand shillings.”
I nearly fell over. 100,000 USH is $50 USD. The day before I’d spent 150,000 USH ($75) on a new pair of skinny jeans. These are the types of things that haunt me and the rest of the volunteers – amidst so much pain there is a profound feeling of guilt when spending “frivolous” money. What is more important – another pair of skinny hipster jeans or surgery to remove a cancerous mass? We – all of us –
make decisions about how to spend our money, but here you can see the juxtaposition of the frivolous and the essential with trenchant clarity.
Part of me wanted to give the woman 100,000 USH on the spot. I had the money in my pocket – but I knew that was not the solution. I didn’t have enough money to pay for other children and I didn’t think it would be fair to single out one. There had to be a better way to do this.
I walked over to another child completely covered in lumps, big and small, all over his body. They looked hard and gnarly, like balls of granola rolled underneath the skin. He was crying. He was in pain. There was some commotion to my left and I took a step back as a group of people walked through handing out sweets. They handed one to the little boy. I watched as he peeled the wrapper off. He stopped crying long enough to eat the candy. It felt like I, and the rest of the visitors in the hospital, were like the candy - only able to provide a temporary distraction – then we went back to our lives and the cancer patients went back to theirs. I was but a small candle in the black, vast, incomprehensible void of terminal illness.
I asked the mother what her child was afflicted with. She didn’t understand me – she only spoke Lugandan.
On the other side of the child with lumps, there was a small girl lying in bed, facing the opposite direction. She looked slender and beautiful and from my perspective. I couldn’t see anything wrong with her. The mother was arched over the child’s head, rubbing her hair and whispering Lugandan in her ear. I walked to the other side of the bed and was almost knocked over by the stark reality of what I saw.
The child’s eyes had been removed. Behind deflated eyelids I could see the bright red of exposed flesh. That sight has haunted me more than anything else. It burned an indelible imprint into my brain. It will remain with me always.
The mother looked at me and looked down at her child again. Without any exchange of words her fleeting glance conveyed the hopelessness of the situation. Nothing would ever bring her daughter back to normalcy. If, and I mean IF, her daughter survived this ocular affliction, she would live her life in blackness, without vision.
It was too much. I thought I was strong but this mother caring for her diseased child in the face of hopelessness was immeasurably stronger than me.
“I’m sorry.” I said. “I will pray for you.”
I said it. I said, “I will pray for you.” Hmm. It’s not something I would have normally done. Had living in Uganda made me more religious - suddenly, magically? Or was it that there was nothing else to say? Nothing else to do. Without a belief in a higher power I’d have to submit to the unbearable thought that there was no sense of redemption in this world. I suppose it’s easy to say you don’t believe in God when you’re in Starbucks in New York City – but it’s immeasurably harder to say when standing next to a child with no options left in life. As they say, “there are no atheists in the foxhole.” Maybe when confronted with hopelessness humans return to their default settings. I don’t know. But standing there I was rapt with the conviction that there has to be a reason for this. There will be divine justice, right? This can’t all be random chaos. Can it?
I walked past a few beds and leaned against a wall. I needed a second to breathe. To regroup. I wasn’t prepared for this.
I felt a tug on my jeans. I looked down at a child, yet another with a grossly distended stomach, carrying a half naked child on his back. They both looked at me and although we couldn’t understand each other’s language they laughed and smiled at the mzungu. I was happy to be a temporary distraction with my funny-looking skin. The baby clung to the child’s back with one arm, in his other arm he shoved crackers into his mouth. He had huge brown eyes. He was adorable.
“Joe – come over here.”
I looked to my left. Baati was sitting on a bed with a teenage boy. There was a bloody gauze wrapped around his neck.
“What happened?” I asked Baati.
Baati and the woman spoke in Lugandan.
“They removed a lump from the child’s neck a few days ago.” She said. “They don’t know what type of cancer it is yet.”
I tried to say something to the teenager but felt bad when the young boy tried to respond. It was clearly painful for him to try to speak.
Baati grabbed my hand reassuringly. I got up and left the pediatric ward and wandered into the adult section. I walked around the hall, meeting various people and telling them I was thinking of them and praying for them. I met people with multiple myeloma, bone cancer, a softball-sized tumor sticking out of his chest, a father dying of an unknown ailment while his wife and child perched nervously on the side of his bed.
The father looked at me. “Thank you for being here.” He said. I couldn’t help but feel like I wasn’t doing anything at all. I was a combination of empathy, sorrow, prayer and what felt, at times, sickeningly, like voyeurism.
At one point one of Baati’s sister came over.
“Come quick.” She said.
“What?”
“Someone over there wants the mzungu to bless him.”
She grabbed my hand and walked me over to a man, breathing shallowly and rapidly. There was a white towel on his chest. His eyes were wild. He struggled to speak. He was in pain. Death was not far away.
“Pray for me.” He said.
I said a prayer in my head.
Baati’s sister nudged me. “He wants you to say one out loud.”
I didn’t know what to say. I blurted out the first thing that came to mind.
“What’s your name?” I asked.
“My name is Joseph.” He gasped.
Bombshell.
Two men – the same name – standing inches apart – who’d been dealt drastically different hands in the poker game of life. We were standing next to each other – but we were worlds apart in every conceivable facet.
“That’s my name too.” I mumbled, shocked.
“Maybe you were sent here for me. Pray for me Joseph.”
“Dear God. “ I said. “Please heal Joseph. And if you can’t heal him please take away the pain and let him be in peace.”
“What is your rationale for God healing me?” He asked me.
What an odd question. I didn’t know what to say. “I don’t have any rationale. All I can do is pray for you Joseph.”
He shook his head. “Okay – thank you.”
As I walked away I looked back at him. He was wrenching around in the bed. Someone was holding down his chest. I stumbled out of the clinic. I felt dizzy. Everyone I’d just met, children and all, were probably going to die. They were going to die and the only question was how long they’d have to suffer in that sickening place where death hung in the air like an ever-present mist.
I walked outside…away from the smells and the pain and into the parking lot. I’d had enough. The kid with the distended stomach, who was holding a baby, followed me. He had a white wire that had been bent into a circle. We rolled it back and forth in the parking lot.
Two girls with amputated legs hobbled over. Each was new to their crutches, and were getting their bearings with the clunky wooden devices. They had had opposing legs amputated and shared a pair of crocs between them. One only spoke Swahili and wore a neon green shirt. The other spoke English and wore a long white dress with a flower in the center.
The boy rolled the wire to me.
“Oh you have a pretty dress." I said.
She smiled.
“That’s the prettiest dress I’ve ever seen.”
She smiled again.
“They don’t make dresses that pretty in America.”
She looked at me confused. She showed me the tag: MADE IN USA.
I laughed. “Well – they make them, but they’re too pretty to wear there.” That answer seemed to please her.
I rolled the wire back to the little boy. It hit a rock and jumped past him. He scurried to get it.
“How are you?” I asked.
“Good.” She pointed to the boy throwing the white wire back to me. “We at least have beds. He sleeps in the back in the dirt. There is no room for him.”
The poorest of the poor (people I didn’t even visit) live behind the cancer ward. Disfigured. Helpless. Hopeless.
“When was your operation?”
“They removed my leg Thursday.”
“How do you feel?”
“I miss my leg, but the pain is gone.” She smiled. “When you come back will you bring me rings and cars and purses?”
I smiled. “Sure.”
“Will you come back?”
It seems like that’s a common question with children I’ve met in Uganda. After saying you’ll come back they make you confirm it. It’s like they have lived their whole life waiting for people to let them down.
“I’ll come back.”
Finally Baati and her family came out.
We drove away. She looked at me. “Now do you understand why I am so religious?”
I nodded.
“Do you know why I took you here today?”
I shook my head.
“You’ll know one day.”
Authors Note: In addition to my normal responsibilities as Business Coordinator at Educate! I’ve decided to start a side-project entitled, “Kristmas in Kampala.” I will fundraise from friends, family, coworkers and fellow students to pay for operations and school fees for sick children in the Mulogo pediatric cancer ward. Any remaining money will be used to purchase small Christmas presents. Details are forthcoming.
I can be reached at Joseph.Quaderer@Gmail.com
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