It started with memory loss.
Subconsciously, Brielle, then 12 years old, knew the things she was starting to forget hinted at something larger.
But she could not cope with her gradually changing reality, and so she devised ways to mask what was happening.
She started writing notes to herself — little reminders of what she needed to remember to make it through the day.
One prompted her to brush her teeth.
Another nudged her to bring her phone to school.
She would lose control of her bladder next, though there was a way to conceal this from others, too, in the form of menstrual pads.
But Brielle couldn’t compensate for the progressive hearing loss that was also to come, or the impacted speech that would accompany it.
And she had no way of knowing it would thrust her into a community she says the hearing world can never understand.
The first sounds to go
“I first noticed not being able to hear simple things like the birds or the trees or the wind or the rain,” Brielle says.
“I couldn’t hear my knives and fork clatter, or the sound of my mug as I was putting it on the dinner table.”
Soon enough, she realised she could not understand accents other than the one she was used to.
“It was like they were speaking in a different language,” Brielle says.
A complete loss of the ability to hear others would follow.
“And then I started being able to go outside and not hear like, V8s going past me.”
An inevitable slew of appointments followed as she saw her GP, then a psychologist, then a speech therapist to work out what was happening.
Next came the tests. The results documented, in great detail, the extent of Brielle’s memory loss, how little control she had over her bladder, and how much her hearing and speech had been impacted by a condition the experts could not yet determine.
It took Brielle’s doctors three years to make sense of the findings and to tell the student and volunteer firefighter the name of the condition that caused her to lose about 80 per cent of her hearing by the time she was 17.
It was lupus cerebritis: an infection of the brain that can cause inflammation of the cerebrum, resulting in profound hearing loss in her case.
Hearing people had a lot of opinions
With diagnosis came clarity and access to the resources Brielle needed — information that would later empower self-acceptance.
But Brielle says it also prompted many of the hearing people in her life to push for a “solution”.
After the experts realised hearing aids would not be compatible due to infection risk, Brielle says the next potential “fix” was raised — a cochlear implant.
The teenager listened to herself rather than her doctors’ advice.
“It just didn’t sit right with me. Everyone kind of wanted to fix the ‘problem’, but from the beginning, to me it was something to adapt to,” she says.
“Hearing people don’t understand what it’s like to not be able to hear — I don’t think they ever can.
“Say I’m staying at a hotel and there’s a fire and I’m in my room. I wouldn’t be able to hear anybody screaming, I wouldn’t hear the alarms. As a hearing person, you don’t even think of that.”
It is a fear she says she experiences whenever she is away from home.
Brielle says this and many other issues deaf people face are a result of the world catering to the hearing world — and only the hearing world.
“I was in the hearing community and didn’t even think about any of these struggles once until it happened to me,” she adds.
She wishes hearing people would consider this privilege rather than putting their energy into considering how to “fix” deaf people’s hearing.
But Brielle’s story has a happy ending
About three years ago, Brielle met another deaf person for the first time.
She says it was this interaction that helped her truly process and accept all that was changing in her life — as opposed to the notion of hearing aids or a cochlear implant.
It was the catalyst for her transition into the Deaf community, which is generally understood as comprising people who are deaf from birth or an early age, use Australian Sign Language (AUSLAN), are children of deaf adults and/or who live and work with deaf people, according to Aussie Deaf Kids.
Brielle visited a school for the deaf, and committed to learning AUSLAN on the side.
Her younger brother decided to go on the journey with her.
“My six-year-old brother is a much better signer than I am,” Brielle says, matter-of-factly.
“He has just memorised everything I’ve taught him.”
After visiting the school for the deaf, Brielle realised traditional schooling was no longer working for her, so an alternative was found in distance education.
“At my old school I had a note taker and she was very, very helpful. But I was living through her — anything that was said, if she missed it, or if she interpreted it wrong, I would miss it completely,” Brielle says.
It was a source of near-constant anxiety.
To shed this anxiety meant Brielle could focus on learning AUSLAN and how to lipread, and consider which parts of her were no more, and which would remain as a profoundly deaf young person.
What happened when Brielle wanted to continue firefighting
Fighting fires is one of many things that would continue to be a fact of Brielle’s life.
It runs in the family — her father is a bushfire consultant for the local city as well as the volunteer fire chief officer for the local bushfire brigade.
Brielle started training to join the local brigade last year, but as her hearing continued to fade it fell by the wayside.
Her father assumed she would not return to it.
But a few months later, she was ready to try again.
“He was over the moon when I told him I was going to continue with it. He was so happy, with a smile from ear to ear. We walked into training together and he was so proud of me.”
There was little that would need to change to accommodate Brielle’s needs.
“We already communicated a lot face-to-face using signs provided by the government,” she explains.
“In learning how to be a firefighter you learn a lot of different signs for when you’re 20 metres away from someone and you need the water on or off.
“And all the buttons, the lights, everything is written down.
“The only thing that I can’t do is be on the radio,” Brielle says — but there are other crew members for that.
The ABC’s Heywire competition is open to all regional Australians aged between 16 and 22.
The annual competition provides a platform for the younger generation, in pockets of Australia that rarely see the spotlight, to “tell it like it is”.
This year’s winners were selected from close to 700 entries.
If you are aged between 16 and 22 and would like to find out more about the next ABC Heywire Regional Youth Summit, go to the ABC Heywire website.