Sonya Charles tries not to sleep for more than an hour a time. The longer she stops, the harder it is to keep going.
The saying “use it or lose it” could not be truer than in Sonya’s case.
The 49-year-old from Cotton Tree was diagnosed with juvenile rheumatoid arthritis as a child and a branch called Still’s disease, as well as ankylosing spondylitis, which causes inflammation and stiffness, resulting in wear to the joints, bones fusing and tendons snapping.
Her health issues are compounded by ADHD, which speeds up metabolism of her medication; functional neurological disorder, which has manifested in grand mal seizures; type 2 diabetes; and undiagnosed autism.
The more she sits still, the stiffer and more brittle her ligaments and tendons become, which is why she tries to keep moving.
“When I sleep for more than an hour, I get stiff. If I sit down to watch a movie, I have to stop it to move around and then start it again,” she said.
Sonya has had more broken bones, dislocations and torn ligaments and tendons than she can remember, and does not know a life without pain.
So far she has had 56 surgeries, starting with her first at 11, many to pin joints, clean out the gunk that builds up in her joints, and reattach tendons and muscles.
Her conditions have befuddled doctors and she has managed to do things she was not supposed to be able to do, such as crochet, play musical instruments and have a child.
“I always find a way to do something. Everything happened when I was 11,” she said.
“The parents came and sat me down and said, ‘It’s never going to get better, it’s only going to get worse. You’re going to have to find a way to get used to it.’
“My older sister would explain that pain is an energy, a feeling.
“So I learned to adapt to the pain and to control it, to feel something different, so when it happens, like when I sprain tendon or break a bone or dislocate a knee, I get up, put it back in and start moving.”
Sonya admits that mind does not always overcome matter.
“I get angry, I get upset, and that’s a part of me that I don’t really like,” she said.
Sometimes, the fatigue flattens her and she sleeps for a couple of days, only to have to slowly unwind her stiffened body when she wakens.
The grand mal seizures, which have settled for now, are thought to be related to the pressure her body is under.
“A paramedic explained it the best way I’ve ever heard it. He said it’s like your body’s overloaded and your brain can’t stand any more of the pain and stress and everything it’s going through, so it shuts down, it walks out and until it comes back, your body’s going to be doing whatever it’s doing,” she said.
The seizures left Sonya with “no drive to do anything” until her support worker, Buffy Gordon, steered her towards giving sailing a go with Sailability at Mooloolaba five years ago.
Sonya, whose father was a shipwright, was initially resistant to the idea of sailing Hansa 303s.
“I said, ‘What, those little bathtubs with sticks in them?’” she said.
Buffy said: “I thought, ‘You like the water that much that you might just like it.’”
Buffy turned out to be right.
“As soon as I got in the ‘bathtub’,” I was addicted,” Sonya said.
Her first 20 minutes impressed a Sailability volunteer enough to suggest she aim for the Paralympics but seizures, surgeries and the disruption of Covid restricted her from pursuing the dream.
However, Sonya is now eyeing off the opportunity to get into serious competition at the Hansa Asia-Pacific Championships on the Gold Coast in October, and then perhaps another event in Sydney.
Getting there on a disability pension that barely covers food and medication costs, let alone the cost of fuel to get to the Gold Coast for practice on the competition waters, is testing her.
She has two ‘sponsors’ – her own photography sideline, Sonz Photography, and Buffy’s Making a Difference Disability Support – but needs more to help cover costs such as uniforms, sailing fees, boat hire and accommodation.
However, Sonya also has a heap of determination.
“There’s no such word as can’t, there’s no such word as impossible. You can do it and the impossible just takes longer. That’s Dad’s saying,” she said.
If you would like to sponsor Sonya to compete at the Gold Coast, or beyond, email buffygord@gmail.com.
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