Belinda Adams says there are many grey areas when it comes to grey matter, but she is hoping to change that.
Ms Adams hopes the visibility of a five-week trip around Australia in a big purple bus will raise awareness about the invisible disability of brain injuries and the lack of information there can be for patients and carers.
Her 25-year-old son Dylan Adams received a brain injury in a car accident about five years ago, while Ms Adams was on a plane from Brisbane to visit family at Broken Hill in far west NSW.
Ms Adams said it had been a battle to learn how to be a carer and find the resources to continue her son's rehabilitation once he left hospital.
"I was a single mother at the time and I had the three kids and I couldn't work," she said.
"I was at the hospital every day with Dylan and we had financial hardship at the time as well as emotional.
"Sometimes it felt like you had to become Erin Brockovich to find what resources were actually there to help, and you have to do a lot of it yourself.
"I fought hard last year to get Dylan recognised as having a disability so he could get a job through disability services, where the employer was going to understand he had some barriers."
Mr Adams works at the hospital where he recovered during his acute phase of rehabilitation.
"It's an encouraging and supportive environment and he's thriving and has gotten back a great level of independence now, so that in itself is rehabilitation," Ms Adams said.
Need for change
Ms Adams said the purple bus and informal gatherings at each destination had started conversations among people with brain injuries and health professionals.
She hoped the journey would change perspectives and policies on a local and government level.
"It is a community issue and we need more employers to open their doors to people of different abilities," Ms Adams said.
"There's not enough funding for rehabilitation. If we don't get the rehabilitation at the start when it's the most optimal time, in the first six months, then you're on the back foot to start with.
"[And there needs to be] more help when you return home because quite often carers have so much strain."
Sharing stories on the road
Broken Hill resident Edele Davis has a brain injury and was one of about a dozen people who met Ms Adams during her stopover in the Silver City this week.
Ms Davis said about four-and-a-half years ago she was speeding in her car when she looked down to pick up her phone, then swerved off a bridge into a dry creek bed to avoid hitting a kangaroo.
"I used to be a go-getter … now I can't do things as fast as I used to, so I stop and smell the roses. I've slowed down a lot," she said.
"I can't read as fast as I used to, I can't write as fast as I used to. I had to learn to walk and talk again."
'Skyping does not work'
Ms Davis said it was a difficult and lengthy process to get a disability pension, and Broken Hill's isolation and lack of services had been challenging.
She said she would have made more progress dealing with the condition if there were more local specialists in far west NSW.
"Skyping therapists is just not the same as talking face-to-face. It is terrible," Ms Davis said.
"In Sydney it's go, go, go, go, go. I travel there for a day [every few months] and I have a full day of appointments for stuff that's not accessible here in Broken Hill.
"[But] travelling there causes a lot of fatigue."
