Rogers passed away on Wednesday.
I met Rogers the first time I went to Uganda, in 2008. He was in his young teens then, but he seemed like a little boy. He was partially paralysed on one side, from birth, and socially awkward, and he always navigated the outside of the group. He was gentle and dogged, always finding his way to the side of one of the Canadians. When he was hugged, he beamed from the inside out, like he was warm for the first time.
He was in the project because he came from a very poor family, and a child who can’t dig is no good in a village that survives on subsistence farming.
Rogers didn’t do well in school, and didn’t carry on “normal” conversations. For a while, when he was young, he fantasized about becoming a traffic policeman when he was older. He loved the idea of the uniform.
One of the other kids bullied him sometimes, and I still harbour low key animosity toward that kid.
As Rogers got older, we realized he wasn’t going to be able to follow a vocational pathway like the other kids. He couldn’t focus on learning anything, but he had a strange persistence, would get fixated on wanting things. “Auntie, please buy for me an ipod.” He was a constant source of worry for us — how could he look after himself? How could he even navigate life?
A few years ago, I spent a few days in Kampala as a side trip after I did some work in Kenya, and I sort of impulsively asked Gabriel and Tina to bring a few of the boys to hang out in the city. Rogers was one of the four. They got to stay in a hotel for the first time, watch a soccer game on TV, eat in a restaurant. I asked Gabriel to go buy them bathing suits so they could swim in the pool at my fancy hotel. Gabriel thought bathing suits needed to have tops and bottoms, so he got them “girls” and boys bathing suits. The boys looked like sparkly gymnasts and — even though they were teenagers — splashed with absolute delight in the pool.
I tried to teach Rogers how to swim, holding his dense and heavy little body so he could move his arms and legs as well as they could. He could manage a stroke or two, but then if he leaned onto his troubled side, he tipped into the water. I caught before he sank and we did it again and again. It was the only time I ever heard him laugh.
A few months later, he disappeared from his school. Gabriel and Tina found him in his family’s village, seeing demons and terrified, being “smoked” by the local healer. There were stories of him trying to throw himself into a river. Our hearts were raw.
When we got to the project for our annual visit, he had been diagnosed with schizophrenia, and was heavily medicated. He moved slowly, talked through fog. I traveled with him and Gabriel two hours to Mbarara to talk to a psychiatrist who had trained in England. She was kind, but there were few resources except monthly visits to her to adjust his meds. The mental health hospital was nice and clean, but the rooms where people stayed were empty cells, a bed and nothing else. It was not an answer.
We spent hours that week trying to find social services or somewhere to place him where he could live in community as he got older. Everyone focused on trying to sensitize his family, the people around him on how to look after him.
He didn’t really have a family.
The meds made him in turn catatonic and volatile. His fixations grew — he demanded a necklace, sunglasses, a watch, a passport. We joked that he was trying to turn himself into a spy, trying to put together a disguise. He did, clearly, want to climb out of his skin, his body, into another life.
He focused on wanting to become a tailor. We found another student to live with him and be his companion, and he trained as a tailor. He was extremely proud of learning to sew, but his arms and hands worked better with the knitting machine. We rented him one, and when we went to Uganda in May 2017, he proudly gifted us sweaters he’d knitted for us.
On that trip, Rogers walked with me up the hill to the hotel in Kasese where we were staying. We talked about what it means to have schizophrenia in Canada, what it means to take medicine forever. Like so many people, he couldn’t hold onto the fact that he only felt better because he was taking his meds — he thought he was cured. I tried to help him understand that the medication made his brain better. “Auntie, can I meet other people like me?” I asked Gabriel to help, knowing it likely wouldn’t happen.
He had a skill, but the shape around his life was still full of gaps and holes. Our project isn’t designed for people to live there long-term — we don’t even have permanent space for the kids anymore. Our purpose is to get the kids to a self-sufficient place where they can launch themselves. But what to do about a young man who can’t look after himself?
Whenever we gave something to Rogers — whether it was a hat or a knitting machine — he would lose it or give it away. For someone more stable, we would have bought him some equipment to set up a small stall in a market. But he needed a supportive group of people around him.
We set him up on a rented machine in someone else’s shop in a place near his family’s village. But — things happened. He stopped taking his meds, or stopped coming, or got distracted. In the murky way of Ugandan stories, we learned he wasn’t there anymore, but didn’t know where he was.
Then last week, Gabriel got a call from his uncle that he had died.
He was in his village, and he got sick, and the family spirits took hold of him, and he developed paralysis on his other side, and he died. No one had called Gabriel to tell him Rogers was sick.
Gabriel traveled to his village, but missed the burial. He was buried with no coffin, just a pile of soil. Gabriel paid for someone to dig a proper grave, and bought Rogers’ grandmother some food, as the mourners had eaten all that she had.
Life is hard enough for young men with mobility issues and schizophrenia in Canada. In Uganda, Rogers’ survival into his 20s was only because he was surrounded by the Nikibasika community, by the support of the Canadians.
All Rogers wanted from this world was to feel like he belonged, to feel loved. We held him tightly in our hearts. I hope he felt that.