Katie G. Nelson
Musa Gali was already dying when we first met.
The 46-year-old farmer and father of seven had ocular cancer, a potentially treatable condition in Uganda, at least, until the country’s only radiotherapy machine broke down in April 2016. There was no hope of saving him after.
I first met Gali one year ago while reporting on the hundreds of patients dying from otherwise curable forms of cancer in Uganda.
I was traveling with staff from Rays of Hope Hospice Jinja, a small nonprofit that provides end-of-life care to some of the poorest and most isolated patients in the country. We visited as many as 15 patients a day – 30 if you included the entire team’s caseload – delivering food, pain medication and counseling to patients who would otherwise die hungry, alone and in extreme pain.
The majority of their patients were dying of cancer, and like Gali, had no other way to receive lifesaving treatment after the country’s only radiotherapy machine, housed at the largest state-owned hospital in Uganda, broke down. Most were left waiting in dark, windowless huts for death to arrive.
The team had found Gali in his home in a small village in southeastern Uganda. A weeping, yellow tumor the size of a golf ball had begun to emerge from his right eye, swallowing his eye socket horizontally and spreading across his cheek vertically; ocular cancer they reported.
But despite his gruesome appearance, the lead doctor at Rays of Hope Hospice Jinja believed Gali’s tumor would respond favorably to treatment, specifically radiation therapy that could only be found at Uganda’s largest government hospital in Kampala.
With their small budget, hospice staff sent Gali two hours west to begin treatment. After his first rounds of radiation, the tumor began to shrink. Five more treatments and he might have a chance of survival they said.
But Gali only received a few rounds of treatment before the only radiotherapy machine in Uganda broke down in April 2016.
WAITING FOR DEATH
When I first met Gali one year ago, he was seated in darkness, his two youngest children crawling across his lap. After spending an hour interviewing and photographing Gali, I left believing I’d never see him again.
But I returned to Uganda in late 2017 and asked if the man who stared into my camera with unsettling defiance was still alive. He was.
Together, the hospice staff and I drove through tarmac streets of Jinja, Uganda, toward winding roads that snake through the sugar cane fields of Eastern Uganda, down to the footpaths that only locals can navigate without losing their way.
I had been warned about Gali’s condition ahead of his home visit; specifically the way the tumor had disfigured the right side of his face was not for the faint of heart.
When we arrived, Gali and his wife Faridha Kadondi, 34, were sitting together under the shade of a wide, broad-leafed tree. A yellow bandana covered Gali’s face, his navy sweatshirt dotted with cream-colored droplets of puss and spit.
I asked if either remembered me; they did not. Still, Gali and Kadondi welcomed me with firm handshakes and empty chairs, and invited me to sit together under the ancient tree.
As I sat down, Gali pulled the yellow fabric away, revealing the tumor that now consumed the entirety of the right side of his face, from forehead to Adam’s apple.
Most of his cheek had caved inwards, like he was smashed in the eye with a heavy boulder. The wound had also spread under his jaw, pushing into his vocal cords and leaving him with a gruff voice no louder than a whisper.
He doesn’t speak much anymore, Kadondi said.
On the table next to him was a red mirror, a bottle of morphine, a canteen of water, some coins, an old radio and a pack of medication wrapped in silver foil. A butterfly landed next to an empty wrapper before making two circles around Gali and floating away.
“I have a lot of pain because of the breakdown of the machine,” he said, his voice growing more strained with every word. “If they had replaced it, I would not be in this situation now. I would not be suffering.”
Looking past his family, toward a dust-covered field just beyond his land Gali whispered, “Now I am helpless. I am not capable of doing anything.”
His wife pulled their youngest child onto her lap.
“My husband is a good man … he is a very good father,” Kadondi stepped in. “He is the ideal man that I always dreamt of.”
“But I feel that when my husband dies, everything will be left on my shoulders and I will have no one,” she said quietly.
Gali stood up and walked away.
“The reason he deteriorated to this situation is because of the breakdown of the machine,” Kadondi said. “The message I would give to the President is that the machine needs to be replaced. Otherwise we are here suffering.”
I found Gali sitting in that same dark, dusty corner of his mud-walled house where we first met. He was staring at the wall.
He was too tired to speak, so I took out my camera and exchanged quiet nods confirming his willingness to be photographed.
He turned his right cheek toward the camera; a soft, diffuse light illuminated the giant pink and yellow tumor that devoured his face. Gali stared at me with the same bold defiance as before. His youngest child watched our exchange from the doorstep.
I put down my camera and said “webale” or thank you in Luganda.
As I stood up, Gali pulled out a red, plastic pocket mirror and a checkered handkerchief and carefully dabbed at the weeping, yellow tumor. It was both an act of defiance and a yearning for dignity, in spite of it all. Tears pooled into my camera’s viewfinder before falling on my lap.
Musa Gali died on November 22, 2017. He is survived by his wife and seven children.
Uganda’s replacement radiotherapy machine resumed operations on January 19, 2018.
To support the critical work of Rays of Hope Hospice Jinja, please visit their website: Friends of Reach Out Hospice Jinja.
*This article was pitched to the following publications:
- Al Jazeera English
- Mother Jones
- The New Yorker
- The New York Times | Lens Blog
- Public Radio International
It remains unpublished.