Uncovering the truth about TB

Hey there, time traveller!
This article was published 05/11/2009 (5799 days ago), so information in it may no longer be current.

It’s rare that a story falls into a reporter’s lap.

Especially when you’re talking about tuberculosis — a subject nobody wants to delve into.

TB touches a particularly sensitive nerve because it’s not just a medical disease. It’s a marker for poverty and neglect. The Free Press began an investigation into TB on Manitoba reserves in spring 2008. But the story stalled when provincial officials refused to disclose the number of cases and which reserves are hardest-hit.

First Nations people don’t want to talk about TB any more than the government does because of the disease’s grim history. It wasn’t that long ago that TB patients were removed from their families for years at a time and warehoused in sanatoriums. Many never came home, and their relatives have no idea what happened to them or where their bodies are. TB information is so hard to obtain, even the Assembly of Manitoba Chiefs don’t know how rampant it is and what’s being done to contain the spread of an old disease that’s consumed communities for decades.

For months, I hit bureaucratic roadblock after bureaucratic roadblock. Provincial and federal health officials were too busy to talk to me. Privacy laws stopped me from nosing through a TB database or accessing any specific data. Several First Nations chiefs wouldn’t even return my phone calls.

I worried this story was hell bent on not being told.

But my luck changed when I met elder Catherine Moise in Lac Brochet.

She is the story that literally fell into my lap.

Photographer Wayne Glowacki and I loaded our gear into a small plane destined for Lac Brochet in early July after Northlands First Nation Chief Joe Dantouze agreed to let us visit. We’d heard Lac Brochet had been hit hard by TB and trekking to one of the most remote reserves in northern Manitoba was clearly the only way to get the story. We had no idea whether anyone who had TB would actually talk to us.

It was our first day on the reserve, and Moise was visiting the woman I was trying to interview. I’d been told that woman had an intriguing story to tell about nearly dying of TB of the brain in the 90s. But I stood in her doorway as she swept the kitchen floor of the tiny three-bedroom house she shares with 15 people and could not convince her to share the story with me. She’d nearly died, an experience so traumatic she just couldn’t bring herself to talk about it.

I told her I understood, and, deflated, I walked down the woman’s front steps. I met Moise seconds later when she lost her footing on the steps and landed in my arms.

I broke her fall, but the story she told me broke my heart.

We walked down a dirt road to Moise’s house and she told us how in the 1960s, she’d spent more than a year in a sanatorium for TB treatment. We sat on the grass outside her house and talked about that experience. The smile on her face vanished as she recalled some of her darkest days confined to a bed, unable to do something as simple as walk to the bathroom.

And then I asked if she had to leave her children behind when she went for treatment.

Moise broke down and sobbed. It was the moment the story about an infectious disease turned into something more profound.

She told me she was taken away to a sanatorium without her newborn daughter. The baby later died of TB, but Moise told me no one bothered to inform her of her daughter’s death until three months after the fact. Forty-five years later, she still didn’t know what happened to her baby or where she is buried.

The complex web of history and politics in which TB was tangled began to unravel at that point. My frustration over how to get the academic and scientific data to measure the impact of TB in First Nations communities melted away. I realized stats and death rates and gaps between federal and provincial health jurisdictions were not at the core of this story. At that core were people like Moise.

It became less important to harass government officials and more important to tell the story of how everyday people like Moise, have been touched by TB, how they live day to day. They could explain to me why TB still exists in their communities better than all the government and medical officials who avoided me.

But their story’s sure not pretty.

After we met Moise, it seemed everyone we bumped into in our travels to three remote communities had been infected with TB at some point. Their stories were all different — from a man who lives without a toilet and shower to a man who buried his young brother, a man whose TB was misdiagnosed over and over, to a man who’s watched his loved ones stricken with TB and other infectious diseases since he was a child.

It’s no wonder TB isn’t a conversation-starter.

I think Stephen Tssessaze summed it up best. I’m sure I had a horrified look on my face when I crawled out from the bowels of his dilapidated house in Lac Brochet. I had just seen the putrid wall in the underbelly of his home, black with rot and mould, covered in patches of thick white mushrooms. I stood next to him, and rattled on about how upsetting it is to see that he lives here with two young children, both of whom have breathing problems.

Tssessaze became very quiet and looked at his feet.

"It’s too much, right?" he said.

It is too much. It’s overwhelming to see a flashlight illuminate the rot that’s festered under Tssessaze’s house for years. I realized that’s why government officials have kept TB in the dark for so long.

Because when you shine a light at the problem, you see just how bad things really are.

jen.skerritt@freepress.mb.ca