Troy Gladwell woke up one morning, aged 19, to find he had begun losing his vision as he slept.
Rebecca Loftus had no idea she had a serious vision problem until she failed the eye test for her driver’s licence at 16.
Troy and Rebecca are now legally blind because of optic atrophy.
Optic atrophy is caused by degeneration or damage to the optic nerves, which transport signals from the eyes to the brain. It can be inherited or caused by a brain injury. It may be progressive, or may not change once established.
Optic nerve damage can’t be repaired.
Troy, co-ordinator of volunteers at Vision Australia in Albury and Wagga Wagga, was just getting his life started when optic atrophy struck.
He left school early, finished his building apprenticeship at 17 and was running his own sub-contracting business.
“I went to bed one night and couldn’t see properly the next day. It got progressively worse over the next three weeks, then it stopped,” he says.
“I was thinking that I was finally going to earn some good money and make my way in the world, and then I had the rug pulled out from underneath me.
“I struggled with it, and I must admit my downward spiral lasted maybe five or six years. I self-destructed for a while with alcohol and some violence.”
Fatherhood was Troy’s turning point
Then Troy found out he was going to be a father.
He cleaned up his act, qualified as a personal trainer and set up a business but withdrew from work when he won full custody of his daughter, Shania, now 17.
“I needed to be a good role model for this person. I had something greater than myself to care about,” he says.
When Shania turned 15, Troy decided to return to work, but struggled.
“I started doing a lot of reading, a lot of volunteering, tried to do some mentoring. I went to the gym to keep myself active because the work wasn’t there for me,” he says.
“I was applying for jobs but I kept getting knocked back because of the perception that I couldn’t do anything. You start to question your self-worth.”
Troy has very low acuity, but with adaptive technology and support he’s making a success of his role at Vision Australia. This allows him to be a role model for others with blindness and low vision.
“If I can help steer somebody in the right direction, even a little bit, that’s a win,” he says.
Troy believes people diagnosed with optic atrophy need to do some soul searching.
“They have to change their world view and realise that the world isn’t going to change for them. They have to change it themselves.
“Be prepared to question who you are now and who you can be in the future, because your perception of yourself really does change.
“And obviously there is help out there if you’re not too stubborn to take it.”
Rebecca’s diagnosis was a shock for her whole family
Rebecca Loftus, 41, says she didn’t know until that eye test that she’d always had optic atrophy.
“I went to my ophthalmologist because I am a diabetic and I see an ophthalmologist every year. He said, ‘Oh, you would never have got a licence’.
“My parents were ropeable because they didn’t know either. It was very difficult. I had always assumed my vision was just a little bit worse than everyone else’s because I’d make mistakes in class or colouring things the wrong colour, and suddenly it all crystallised.”
Very little is known about optic atrophy, Rebecca says.
“It’s so rare that I would ask doctors, ‘What’s going to happen?’, and they’d say, ‘We don’t know, so tell us when something happens and we’ll know too’.”
Rebecca’s vision has ebbed away in stages.
She says, “I liken it to being on a gravel slope. You lose your footing and you slide down a bit, then you get your footing and walk along again, then you slide down.”
Building a life and a career with low vision
Rebecca, who lives with her parents in Sydney, wanted a career in the sciences, and achieved that goal – as a psychologist.
She has also been proactive. With further deterioration in her vision in 2000, Rebecca decided to learn to use JAWS -- software that reads screen-based text back to users -- before her vision declined further.
She has partly learned braille, while Vision Australia has assisted with employment services, access to our library, conversion of texts to audio recordings or alternative formats, and with equipment and mobility solutions.
For details about our employment services, go here.
For information about our library service, go here.
For more on our mobility services, go here.
Rebecca urges people with optic atrophy not to lose heart.
“It’s very difficult and there isn’t a lot of information, but keep pushing ahead and doing what you need to do to keep functioning and meet your goals,” she says.
“Don’t give up. Be prepared for slow changes but don’t let it get you down.”
If you or somebody you know is looking for more advice or information about vision impairment, please phone us on 1300 84 74 66 or send us an email at [email protected].