Celebrating Steinbach amidst scary diagnosis

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Hey there, time traveller!
This article was published 11/04/2023 (836 days ago), so information in it may no longer be current.

A taxi ride from a dangerous situation to a women’s shelter in Steinbach was Charlene Gardiner’s introduction to the community. Less than a year later she’s facing another dangerous time, by way of a diagnosis of a rare autoimmune neurological disease that has already robbed her of her freedom and could ultimately take her life.

But as Gardiner sat down with a Carillon reporter, she insisted that the story be positive. And how could it be anything else, when Gardiner’s words were constantly praising people, organizations and even the healthcare system which is moving quickly to combat her disease.

“I wanted to thank the community because they gave me back my confidence as a person, as a woman,” she said.

GREG VANDERMEULEN THE CARILLON 

Charlene Gardiner was diagnosed with myasthenia gravis on March 13. Posing with an impressive array of new drugs she’ll take in an effort to force the disease into remission, she’s praising the community for being a support for her before and since her diagnosis.
GREG VANDERMEULEN THE CARILLON Charlene Gardiner was diagnosed with myasthenia gravis on March 13. Posing with an impressive array of new drugs she’ll take in an effort to force the disease into remission, she’s praising the community for being a support for her before and since her diagnosis.

Gripping a cane and carrying a bag full of newly prescribed medication, Gardiner shared what to many would be a story of tragic circumstances.

To her, it’s a story of hope, one of resilience, and one she hopes will inspire others to look for the positives, to face their health challenges head-on, and to be thankful for what they have.

The issue at hand for Gardiner is myasthenia gravis, an autoimmune neuromuscular disease that causes weakness in the skeletal muscles (the muscles that connect to your bones and contract to allow body movement in the arms and legs and allow for breathing).

Diagnosed March 13, it actually represented a good day for Gardiner who finally knew what she was dealing with.

That’s because she had already been admitted to Emergency at Bethesda Regional Health Centre on multiple occasions for what she described as stroke-like symptoms.

“I’d be driving and have to pull over because I didn’t feel safe,” she said of the first symptom, which was fleeting double vision..

Then she noticed her eyelids would start drooping, she once fell down her stairs, had trouble getting up, and suffered from dizziness, migraines and stomach issues. She even began choking on small pieces of food, causing her to receive the Heimlich manoeuvre six time in the last year by her count.

After going through a stroke protocol and a battery of tests it was determined no stroke had happened.

But Gardiner, a former registered nurse, did her own research, determining it could be myasthenia gravis, a rare disease that only affects one of every 10,000 Canadians.

“I knew it was a strong possibility,” she said.

A simple antecetycholine blood test could confirm.

But convincing doctors to order the test when they were beginning to think Gardiner was imagining it was tough.

It finally came to a head on her last visit, when she pleaded with the doctor to do the test, promising to “shut up” about it and never bring it up again if that happened.

The test, which measures acetylcholine receptor antibodies in blood came back positive.

According to the National Institute of Neurological Disorders and Stroke, myasthenia gravis is treatable, with most people living a “relatively high quality of life” and an average life expectancy.

That depends on the disease going into remission, the goal of the regimen of drugs Gardiner must now take.

For now, she’s noticing the progression of the disease.

“Two weeks ago, I was a different woman,” she said. “I didn’t need a cane; I was walking OK.”

Gardiner retired from nursing in 2016 because of a Lupus diagnosis. She said this latest diagnosis represents challenges, but one she can take on.

“I was actually relieved when I got the diagnosis because at least I knew what I was dealing with,” she said. “It’s the fear of the unknown that’s really difficult to deal with.”

And while she knows the disease could send her to the ICU requiring intubation, she relies on her faith and the people she’s met.

“I put all my faith in God,” she said. “I realize I can only do what I can do, and it is what it is. God only gives you what He thinks you can handle, and if He thinks I can handle this…”

Her faith in community also gives her strength.

But to explain where her high opinion of Steinbach comes from, one must go back to April 8, 2022.

That’s when she called 911 from her Beausejour home, fearful for her life during a domestic disturbance.

Police told her there was a bed open at Agape House, a women’s shelter in Steinbach.

Shocked and devastated, Gardiner still remembers stepping into the cab operated by Hello Taxi.

Full of questions about Steinbach and the shelter, Gardiner remembers how caring the driver was, how she was reassured that this would be a safe place to be.

“I look at it as good luck to have been brought here because this was the start of my new life here,” she said.

Carrying a pillow and dragging two garbage bags with clothes, she started that new life.

Gardiner said Agape House gave her dignity and help. She was connected to other local resources through advocates such as Charlene Kropp, the Steinbach Family Resource Centre, MCC and the Pat Porter Centre.

But even those in the private sector proved to Gardiner what this community was.

She still recalls her first meal out, a breakfast at MJ’s Kafe.

Gardiner said she shared with her waitress that she was new in town but was blown away when she went to pay the bill.

“She said somebody’s taken care of it for you,” Gardiner said. “I said why? She said welcome to Steinbach.”

“I could have started crying right there,” she said. “People don’t do this in Winnipeg.”

Working on a limited income she struggled to find housing, lucking out with a basement suite for $835. Her EIA covers $690 of that while the rest comes from her food and personal care budget.

She said the apartment, managed by Schinkel Properties was a blessing, praising Danny Schinkel for his kindness. “He says to me, you’re the last person getting this at this price,” she said.

The 57-year-old has also accessed what should have been her retirement savings to help.

Thanks to organizations like MCC and Centre Flavie-Laurent (a Winnipeg organization which helps those in need with furniture and other necessary items), she was able to outfit her apartment.

It’s a spartan existence to be sure. She has no Wi-Fi, no cable or satellite and depends on an old television set with a VCR for entertainment. She’s currently thinking of spending some of her savings on a laptop.

She had nothing but praise for her neighbours who she said reflect the attitudes she’s received around the community.

“My neighbours have given me support and love and they’re phoning me and texting me and they’re worried about me,” she said. “Everybody has been supportive which blows me away.

Gardiner wants people to know just how amazing the community is, and she wants to inspire others dealing with challenging life events.

“It’s important not to go ‘why me’,” she said. “It doesn’t get you anywhere.”

She urged people to advocate for themselves in the healthcare system and said there’s amazing help out there in local organizations if one looks.

“You’ve got to reach out for those things,” she said. “Don’t be embarrassed when you get a diagnosis no matter what it is. Reach out for help.”

And while Gardiner doesn’t have family to rely on, she said she’s OK taking on her challenges in the community of Steinbach.

“In a lot of ways, they’ve become my family,” she said.

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