by Carla Caruso

The lights along the River Torrens footbridge turned purple, white and green last week. 

The change in hues was to mark Rare Disease Day on February 28 as part of a Global Chain of Lights. And it was all thanks to Athelstone resident – and APA follower – Bethany Cody for making it happen.

Bethany, who has the rare genetic disease, retinitis pigmentosa (RP), got in touch with various organisations to light up for the cause. 

She had success with Scott Pyke, the senior lease admin officer at the Department for Infrastructure and Transport. (Though, a software issue on the night meant the bridge’s colour change occurred about an hour later than planned.) 

Despite the minor glitch, Bethany was excited to see the icon aglow in support. “The most important thing is creating awareness, really humanising the experience, and getting community participation as well.” 

The 25-year-old’s disorder means she has progressive sight loss – something she was literally ‘in the dark’ about, in the beginning, with no known family history of RP.

“I was about maybe 13 to 15 when I started noticing, at night-time, that I found it really hard to see. And in really dim lighting, I was having trouble adjusting,” Bethany says. 

“I kept it to myself initially, thinking that’s a bit weird but … maybe my eyes might just be sensitive. Looking back, I also had a couple of incidents here and there, like missing steps on a staircase or walking into a pole or doorway that I didn’t see.”

In 2018, she finally spoke up about her concerns at a routine eye check-up with an optometrist. “After a few months of testing with a few doctors, I arrived with my current specialist and he was the one that finally said, ‘Yep, you’ve got hallmark RP’ … The tricky thing is it varies so widely from person to person.

“It was pretty big news; very shocking at first. I was a bit numb, and just all the questions and ‘what ifs’ hit you, and it’s really difficult.”

Now, though, she just “takes each day as it comes” around her gradual vision loss.

“I’m scared to ask my specialist, ‘Can you break down how much it’s changed?’, so I don’t exactly know numbers as such. But I have bigger blind spots now.

“In the beginning, they were a little bit smaller, less noticeable. But in the last three or four years, they’ve sort of grown together to make one big blind spot.

“So, if I look at you when I’m talking, all your face will disappear, and if I’m looking at you in the eye, I’ll only see one of your eyes at a time. I’ve also had gradual peripheral vision loss, so my field of view is gradually shrinking. 

“[But] I’m really lucky at the moment that my central vision is still pretty good, which is really awesome because it still means I can do my make-up, I can still write [creatively], do lots of things with more independence. I can’t drive [though].”

On navigating her environment, Bethany says: “At the moment, it’s really just, if I’m in a place that has really low lighting, I’ll ask either my friend or fiancé or parents to guide me. So usually, I’ll ask them to either walk beside me, and point out ‘there’s a step there, the wall’s just there’. 

“Or just a flashlight at night – that’s really helpful. Having really good lighting in the house, so I don’t trip over my dogs, is also good.”

When she’s not busy with her day job at Children and Young People with Disability Australia and her other interests, you’ll often find Bethany in nature. 

“I’ve learned a lot [from following APA online] and I really appreciate what the association is doing. I believe our green spaces are invaluable.”

Follow Bethany on Instagram at @grinspoongirl.