The Robert Effect

“It was one of the most sad and wonderful days I’d ever had, because what Robert wanted when he died is for people to talk about this and they were talking about it at his funeral.”

Kallio met Robert when he was in jail. She said she knew he didn’t trust her, but he needed support for an upcoming court date. When he was out of jail, Kallio helped get him into detox, where he stayed while he wasn’t in hospital.

He was a former gang member, joining when he was young. Robert, whose own parents were separated, struggling with addictions and homelessness, was looking for some form of family, said Kallio.

When someone is young and from a rough background, the gang looks good, Kallio said Robert told her, but he knew something different when he ended up in hospital and didn’t get out.

“’But this is what happens, is you end up alone in a hospital dying and none of those people are around. I’m not doing anything for them, so they don’t care,’” she said Robert told her.

Kallio was one of the only people who would take Robert out of hospital, and when she did, Kallio took him to AIDS Saskatoon’s outreach program, the 601.

“He looked really sick and he knew he looked really sick, so he’d talk to people about being really sick,” she said.

He would talk to people at risk or newly diagnosed with HIV, in a quiet way and they would get to know him, Kallio said.

“And they would all of sudden come to my office the next day and say, ‘I want to see a doctor. I want to talk about treatment.’ These were things they’d never talked about before,” she said.

“He knew that the way he looked had great power because it scared people.”

“By the time we all started working together to help him, it was too late.”

He had advanced HIV/AIDS, low CD4 counts and opportunistic infections. He showed up for medical appointments, but with addiction issues, it took some time for him to become fully engaged, said Dr. Stuart Skinner, Robert’s physician.

Then, in January of this year, there was a change.

“He really wanted to get better, he wanted to take his pills and was really committed to get his life turned around,” Skinner said.

“He still kept losing weight and getting sicker and then we admitted him to hospital and I thought actually he would get better. I thought he would put on weight and we would get the virus suppressed, but he just continued to get worse.”

Kallio continued to visit while Robert was in hospital, but he had another visitor as well. Ashley* met Robert six months earlier in detox. He gave her advice and support when she learned she was HIV positive.

She said when she heard Robert was in hospital, and wouldn’t make it through the weekend, she went to visit that night. He lived another two weeks and she just kept visiting.

“The main reason I went back was because he just kept saying, ‘come back,’ and he was dying there, so it was like, ‘how could I not?’”

During those two weeks, Ashley said she and Robert became friends, but it was difficult.

“It was hard on me because I became close to him,” she said.

“I watched him die for two weeks … that was a changing experience for me, just watching him die. I won’t use (injection drugs) again, after watching him die like that.”

Robert was diagnosed with HIV around the same age that Ashley was, but he continued to use.

“He’s like, ‘I’m sorry I had to turn out this way. Please, please don’t do what I did. Just be healthy’ … it was so real for me,” Ashley said.

Robert died in August.

“It’s tough because he’s so young and that’s what’s so hard with what’s happening with HIV, is you know it’s treatable and then you see people, young people, with advanced disease, dying. It’s hard,” Skinner said.

“Especially when you see him make those changes and really committing to… dealing with all the other issues, dealing with his past and making changes, going out and giving talks to other people at risk, so they wouldn’t make the same mistakes he did.

“Treating the HIV is the easy part … but they’ve had to go through the lives they’ve led due to poverty and abuse and all your social determinants of health and the challenges they’ve overcome. They are remarkable people, amazing.”

Kallio agrees and she said people she knows couldn’t survive what her clients overcome.

“The majority of people that I work with did not grow up wanting to be this. Nobody does. Nobody wants to have HIV and be in jail, nobody does,” she said nothing that Robert was no different.

“People saw him as a former gang member and this and that, I got to know him as one of the most genuine, authentic, lovely, intelligent, funny people, that I’ve ever known in my life.”

Robert wanted his legacy to be his story and his greatest gift was giving them permission to talk about him and his experience, Kallio said.

“That’s what he wanted to do, he wanted to tell people that this shouldn’t happen, but he didn’t have the chance.”

Originally Robert wanted his funeral in Saskatoon with his friends, but the more time he spent in the hospital, the more he wanted it with family in La Ronge.

Kallio had never seen a photo of Robert before he was sick. At the funeral she said she saw a photo of him with more than just skin covering his bones and he was a very handsome young man.

“And it broke me a little bit because that wasn’t the Robert I knew, but that was the Robert all the people at the funeral were thinking about. And it’s such a bloody waste, he was 27 years old,” she said.

“I was pretty broken for a few weeks after Robert died.”

She wasn’t alone. Robert had an impact on many people, she said.

“We call it the Robert Effect, his doctors and nurses and outreach workers. We all work with people who have HIV every day, but Robert touched us all … He made us better at what we do, better at listening to the people we are working with, so that we are working with them,” she said.

He caused them to be more ferocious with their work, said Kallio said.

“We’d also see the people who didn’t know him, who judged him by how he looked (with) his tattoos he’d sit outside smoking in his wheelchair and he looked like a Holocaust victim and people used to treat him like garbage. Nurses, professionals, people in stores. It was awful a lot of the time,” Kallio said.

But, Robert never wanted her, or any of his workers to “freak out” on anyone, she said.

“So we’d temper our anger and put it towards trying to make the whole system different.”

For more see: The face of HIV in Saskatchewan

ahill@panow.com

*her name has been changed to protect her and her family, who live in a small town outside of Saskatoon.

This story is the 10th in a series about the face of HIV in Saskatchewan. Research for this project was made possible by a journalism grant from the Canadian Institutes of Health Research.

by Angela Hill

The Robert Effect

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