Bite by bite, burger by burger, Grand Forks’ A&W last week raised nearly $700 for people living with multiple sclerosis (MS).
It was perhaps a humble contribution to the fast-food chain’s 13th annual “Burgers to Beat MS” campaign when, every Aug. 19, the company donates $2 to MS research from every Teen Burger sold nationwide, according to the MS Society of Canada’s (MSSC) website. It was a massive success, no matter how you look at it, for local organizers Amanda Blades and Patti Bevilacqua.
Blades, who manages the A&W at 1695 Central Ave., said the store raised around $500 on Thursday, Aug. 19, when she and her staff sold 257 Teen Burgers. “I think we did pretty good,” she said, adding that customers donated around $190 to the cause starting in mid-July.
The fundraiser was especially important to Bevilacqua, who lives with MS. Now in her mid-50s, she was just 24 when, one fateful morning in 1990, she woke up with double-vision in her right eye. Six weeks and an MRI scan later, she was told she had MS, an autoimmune disease that affects the central nervous system.
“I didn’t even know what MS was,” she said.
More than 30 years later, medical science has arrived at a much better understanding of the disease but, according to MSSC, there are still gaps in what the experts can tell us.
While the disease behaves “unpredictably,” the commonalities spell out a recurring and sometimes progressive disability where the body attacks nerve-linings in the brain, the optic nerve or the spinal cord. Successive bouts of inflammation can steadily harden affected linings to the point where the underlying nerves stop firing altogether, but the prognosis is different for every sufferer, depending on where MS sets in.
Bevilacqua went on to achieve two post-graduate degrees in education after her diagnosis and continues to live independently, but stopped teaching PE six years into her career. And while a special lens now corrects for her double vision, plaque deposits in her brain have led to memory loss, muscle fatigue and mobility issues, among other symptoms.
Strip away the clinical synopsis, and one could paint a sad story about a woman who, at 24, started to lose memories of childhood. Nerve damage has left her with the shuffling gate of a woman much older than her 55 years. All the while, she wears the bruises that remind her every day that, one wrong step could send her flat on her face.
Underlining the keen distress that comes with so much loss, Bevilacqua said she was asked at her PhD defense if she would’ve retired as a PE teacher had it not been for her MS. Statistically, this was rare among people in her chosen field, her doctoral advisor observed.
“I don’t know” she replied. “But, it should’ve been my choice.”
“Although I grieve that loss, I tell people that before MS, I was a good person and that I loved myself. With MS, I’m a great, fantastic, wonderful person and I love who I am.”
These are not the words of a woman who pities herself: They are a testament to a life lived to the fullest, despite some very undeserved knocks along the way. They show a woman who started a Facebook group for other women “living brave and bold” with MS; a woman who finds something positive in everything she does.
“I begin every day as my best self. But, if for some reason that doesn’t last, I don’t give up — because there’s always tomorrow.”
The $700 she and Blades raised last week will fund not just MS research, but also support systems for the roughly 90,000 other MS patients in communities across Canada, according to MSSC.
Patti Bevilacqua holds a Master’s degree in curriculum development and instruction from the University of Oregon; a PhD in teacher development from the University of Toronto, as well as undergraduate degrees in teaching from UBC and UVic. She and her husband moved to Grand Forks in 2007, where she continues to live independently, going for daily walks with her two labradors Trooper and Bella.
For more information about MS and how you can donate to the cause, visit MSSC’s website at mssociety.ca.