By David F. Rooney
When she first noticed the odd twitches in her her muscles a year ago, Pauline Hunt, a 42-year-old mother of two, brushed it off. But when they didn’t go away she sought her doctor’s advice.
A Revelstoke resident since 1997, the former BC Downhill Mountain Bike Champion underwent a battery of tests including some in Kamloops.
“After the blood test the doctors said it could be one of a thousand things, including a virus, so I had myself convinced I was going to Kamloops and it was going to be a virus and that would be the end of that so I could do a bunch of Christmas shopping,” Pauline said in an interview Sunday. “That didn’t happen.”
Instead, the doctor told her she had Amyotrophic Lateral Sclerosis (ALS), an incurable disease with only one outcome.
According to the ALS Society of Canada website: “Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s disease) is a devastating neurodegenerative disease, those living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord. Eighty per cent of people with ALS die within two to five years of diagnosis — unable to breathe or swallow. Along with ALS, neurodegenerative diseases include Alzheimer’s disease, Huntington’s disease and Parkinson’s disease. According to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040.
“ALS has no known cure or effective treatment. For every person diagnosed with ALS a person with ALS dies. Approximately 2,500 – 3,000 Canadians currently live with ALS.”
“It was definitely a shock,” Pauline said as she cradled one of her two daughters, two-year-old Madeline, at the table in her warm and bright kitchen.
That’s something of an understatement. However, that’s the kind of person Pauline Hunt is. She and her husband Simon grieved for an hour and then “were back on our feet,” he said.
“We are not the kind of people who sit and mope about,” he said. “We look for solutions and we have kids. They keep us in the moment.”
Solutions may be few and far between for the Hunts. But attitude certainly matters when you are facing a catastrophic diagnosis and Pauline has an excellent one.
“A technician in Kamloops had a few words for me that I thought were very appropriate,” she said. “She told me: ‘None of us knows when we’re going to die. And in a way — I know it sounds like a cliche — it’s as though you’ve been given a gift. You have this window of time in which you can really live your life while the rest of us are just screwing around.'”
Pauline laughed at the memory of that conversation but the truth of it is apparent. Not everyone facing a terminal illness has the time or the opportunity to live out some of their dreams.
And that’s exactly what this young family is going to do. Pauline, who owns designWorks graphics (http://www.designworksgraphics.ca), and Simon, a forest fire specialist with Parks Canada, plan on cutting back on work and taking some trips — or “adventures” as Pauline likes to describe them — with their daughters. They very much want Madeline and her four-year-old sister Emily — who are too young to understand the gravity of the situation right now — to have happy memories to comfort them in the long years ahead.
Their plans are admirable but could also prove to be expensive. Fortunately very good friends have stepped up an organized a Silent Auction and Music Night to be held at 7 p.m. on Saturday, Jan. 9, at the St. Francis of Assisi Roman Catholic Church Hall. Tickets are available from Gregg Walker or Catherine Bellerose at the reception desk in the Parks Canada Administration Office at a cost of $15 per person or $25 per couple. Walker and Bellerose are looking for items for the silent auction. Anyone who wishes to help out should contact them at 250-837-7500. All proceeds from the event will be deposited to the Memories and Adventures Trust Fund that has been established at the Toronto Dominion Bank to help the family realize their plans.
“Everything happens for a reason,” Pauline said calmly. “We may not know those reasons, but eventually everything falls into place.”