I met Zam this evening. At 6pm.
Zam had called me last week. She had gotten my phone number from Ian Ortega. “Is this Edward?” A voice, almost faint, asked on the line. “Yes, this is Edward,” I responded.
She said she had this…this disease. “What disease?” I asked her, curious. She said she would want to meet me and she explains it in person. She needs my help. I said, well, I rarely meet random people, but I agreed to meet her on Tuesday, evening. Today.
We kept in touch. No, she kept in touch.
I met her this evening in town. At Mega Supermarket Restaurant (her choice). I snaked through the gridlock human traffic and, finally, I was there. The restaurant is stuffy. Packed to the rafters with tired business people queuing up for a meal (their first in the day, perhaps).
I pulled a metallic chair and waited for her. A few minutes later, she called. That she had arrived. I told her to walk in and I will wave my hand.
There she was, Zam.
Veiled from head to toe. Big eyes. Wide smile. In fact, she was always smiling. That smile that says, “Well, I have no choice.”
At first glance, she didn’t look like she had a disease. At least I didn’t imagine her to be in that state. She looked normal, Zam. Short, yes, but normal.
The restaurant has the poorest customer care in East Africa. No one walked over to our table to ask what we needed to eat or drink. But that’s not the point. The point is Zam’s situation.
I leaned back, folded my hands, and listened. Outside, hundreds of human feet stomped the tarmac as people raced to board taxis back home. Cars honked endlessly.
“I have a problem,” she started.
She’s suffering from scoliosis. Her spinal cord has an S shape. It’s curved. I felt tears pour in my eyes as she narrated her story. “Do you feel pain?” I asked her, which I later realized it was a dumb question to ask.
Having her spine curved means she can’t sit for long and neither can she stand for long. She can’t walk long distances. “As we speak, I am feeling pain,” she said. Taxi rides are pain, so are boda-bodas. The only time she gets to breathe is when she sleeps.
I looked away quickly, embarrassed at my question.
How did it start? Her mum gave birth to a normal kid. The kid would later develop flue. Apparently, there was water in her lungs. She took her to hospital. At the hospital, her mum said, she was worked on by student doctors who weren’t careful with her. Her lungs collapsed which quickly led to an operation. It was tough. She was almost dead. The doctors then told her to keep blowing balloons in order to expand her lungs. She did so. There wasn’t much money at home to keep buying balloons.
At 5 years, she started developing a strange disease. Her shoulders were uneven. Like an imbalanced weighing scale. Her skin was stretching. Imagine the skin being pulled from both sides. Excruciating pain that can’t be cured by scratching. Or a detergent. Her dose of pain started from then. Up to today.
She’s now 24.
She’s lived with this disease. She’s lived with this pain. She’s lived with a curved spine. She’s lived with the shame of being (called) too short, the mockery from fellow students at school. She’s lived with no hope of making it to the next day. She’s lived with tears in her eyes. She’s lived with not enjoying the simple pleasures of life. She’s lived with not wearing normal clothes. She’s lived with a brace in her waist. She’s lived with Allah.
Zam is in too much pain.
“Where are your parents?” I asked her. Her parents are divorced. Her dad stays in Masaka. She lives with her mum in Kyengera. Throughout this journey, it’s been her mum. Her pillar. Her only strength. She’s sold off literally everything to see her child look like normal people. And she’s reached the end of her financial tether.
Last time they went to hospital, the doctors had sent them to India. She needs a surgery. Every passing minute, her situation worsens. The disease expands every day, crushing her insides, eating her up, eating Zam.
She needs $15,000 for her surgery.
An astronomical amount for her and her family. She has combed this town for help. It’s all been endless promises and come tomorrow songs. It’s been a tiring quest to get a cure, to literally get a life.
She needs your help, Zam. Maybe you have a loose one thousand in your pocket, kindly pledge it over. Or if you can help her in one way or another, it’s all good. Share her story. Tell a friend. Let’s help Zam.
This is her phone number: Nalugo Zam Zam – +256 772 724 181.