Imagine a house that runs solely on a generator or a cell phone that constantly runs on five per cent battery. For Victoria’s Marilyn Carr-Harris, life is like running on low battery all the time.
“You only have energy for one thing at a time like doing your laundry. That’s me,” Carr-Harris said. “I go through the day and I use up my energy, by the end of the day I don’t have any energy left.”
Carr-Harris, a librarian, was diagnosed with a mitochondrial fatty acid oxidation disorder three years ago. The disorder prevents her body from breaking down certain types of fats and as a result, she has fatigue, poor muscle coordination and fluctuating muscle weakness.
“Once I got the diagnosis, my life became a lot easier. I was relieved, it was scary too. I’ve seen myself progress over the years,” she said, adding she went for 10 years without being properly diagnosed. “Ii was about to adapt my lifestyle.”
Now, Carr-Harris has a modified diet, lifestyle and medications. She has the most energy in the morning, but throughout the course of the day she deteriorates.
But that hasn’t stopped her from doing what she loves.
Every Monday evening, Carr-Harris straps on her lifejacket and heads out to the Fairway Gorge Paddling Club to practice with the Dragon Flyers dragonboat team.
The team has been paddling together for the past three years and picked up a bronze medal at the Nanaimo Dragonboat Festival last year. Most recently, they won third place in their division at Gorge Fest last weekend.
“Paddling has been an important part of my life. I’ve discovered that I’m able to move my body in a different way and I feel a lot freer on the water,” Carr-Harris said. “Something just kicks in. Dragon boating is pretty special because you’re hitting the water at the same time as your teammates. It’s like you become one bigger unit.”
This year, the team is raising awareness of mitochondrial disease.
“Throughout the past few years paddling with Marilyn, it’s just frustrating seeing the little awareness that is in the health system,” said team captain Sandra Der. “Marilyn is my friend, it hurts to see what she has to go through — just to normally be able to swallow, eat or speak.”
Andrea Pleven, head coach, said despite Carr-Harris’ disease she continues to be an inspiration to the team.
“Marilyn is such a positive influence in the boat because we all know abut her mitochondrial disease and how it effects her,” Pleven said. “You can see how hard she works because we literally lift her out of the boat because she works that hard. She’s quiet but she’s a force to be reckoned with.”
Carr-Harris and the Dragon Flyers will compete at the Victoria Dragonboat Festival this weekend (Aug. 14-16). For more information, visit victoriadragonboat.com.