Survivor speaks up about stigma of stroke recovery

When Allison Staff suffered a stroke, it left her unable to see, walk or talk, but she could still hear — and what she heard around her was chilling.

Stroke Recovery Association of Manitoba peer support and programs made Allison Staff 'feel normal again'

Stroke survivor Allison Staff is speaking out about the stigma of stroke recovery, and the support survivors find among peers. (CBC)

When Allison Staff suffered a stroke, it left her unable to see, walk or talk.

But she could still hear. And what she heard around her was chilling.

"I could hear the doctor saying to my dad he's not sure how bad my stroke was, and my dad saying, 'Just maybe let her go then,'" Staff said. "I could hear all this and … I couldn't respond."

That's just one of the traumatic memories Staff continues to live with. It's also one reason she's now a strong advocate for the Stroke Recovery Association of Manitoba (SAM), an advocacy and support agency made up of Manitobans affected by strokes. 

"When you lose your mobility and your livelihood overnight, you need support. You need a stroke recovery resource centre," Staff said. "And yet it's so little known."

I went from someone who felt valuable and productive to a person who couldn't even respond properly to a question. I was so embarrassed.- Allison Staff

Staff's life was turned upside down in 2002. She was just 39, living in Yellowknife, part owner of a cab company and a single parent.

One morning, while driving to a coffee shop, her entire body suddenly seized up. She couldn't see. She couldn't cry for help.

Her foot slammed on the gas pedal.

"My passenger just kicked my foot off the gas," she said. "Because I couldn't; I couldn't move it."

In days her vision returned, but that was all. She had to learn how to walk again and talk again, and even learn to read again.

"I went from someone who felt valuable and productive to a person who couldn't even respond properly to a question," Staff said. "I was so embarrassed. I didn't even want my best friend to know that I couldn't read or write anymore."

Stroke survivor Allison Staff made her way through university with a specially adapted keyboard to accommodate mobility challenges with her right arm. (CBC)

Eventually, she moved back to Manitoba, where family supported her on the long road to recovery.

It was not until 2017 that she learned about the Stroke Recovery Association of Manitoba, a small, non-profit agency that provides peer support, advocacy and programs like Speak Easy.

"Speak Easy means just that.… You can meet, visit and not worry about slurring words or stumbling words, because everyone there does," she said. "For the first time in years, I felt normal."

2,000 Manitobans suffer strokes each year

Andrew Tunney, with the Stroke Recovery Association of Manitoba, said each year, approximately 2,000 Manitobans suffer a stroke, but they're the only local charity that works specifically with stroke survivors to help them "gain some form of normalcy in life once you leave the hospital … to cope and continue with what we call the 'new you.'"

Staff's now using her new-found voice to spread the word about SAM. Though it's been in existence for decades (originally called the Manitoba Stroke Club, it was created by a pair of stroke survivors in 1969), few people are aware of it, Staff said.

"People confuse us with heart and stroke [agencies]," she said. 

In June, Staff is taking part in a fundraising walk and wheel(chair)athon for SAM. She hopes other stroke survivors will join them.

In the meantime, she said, life is good again.

When she's tired she still has trouble speaking. When she's nervous she sometimes gets confused. Her right arm still doesn't work to capacity. But she went back to school, got a degree and is now a practising social worker.

She's grateful for it all.

"I learned how to walk and talk and read and write again," Staff said. "I'll never take it for granted again."

The SAM Annual Walk and Wheel takes place June 24 at Provencher Park in Winnipeg. For more information, contact the Stroke Recovery Association of Manitoba.

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