When Alicia Thompson was diagnosed with a rare, inherited eye disease, which would eventually leave her legally blind, she allowed herself one day of emotion before picking herself up and getting on with it.
At the age of 19, Thompson realised the best way to deal with the diagnosis of Stargardt’s disease – an eye condition that affects just 1 in 10,000 people and has no cure – was to learn how to lead as normal a life as possible, despite the disability.
“I started noticing flashing colours, which I have since discovered is unique to me. I saw them even when I closed my eyes,” Thompson says of the moment she first realised something was wrong with her vision.
“I actually thought I was going crazy, or losing my mind or that there was something wrong with my brain. I just didn’t understand what these lights were.
“Then I started to make mistakes at work,” Thompson says. “At the time I was doing data entry. Up until then, I had a 100 per cent
accuracy rate, and had always done so, but I started to make mistakes and I didn’t understand why. I finally realised that there was something wrong with my eyes.”
Stargardt disease affects the central area of the retina called the macula, leading to problems with central vision, detailed vision and sometimes with colour perception.
It tends to first become apparent when people are in their teenage years and eventually leaves people without the majority of their sight.
For Thompson, it was a gradual progression as she began to lose the sight she had treasured for 19 years, and with that her independence.
“I didn’t stop driving until I was about 21. I was holding out against giving that up because I just love driving, and your independence really is gone when you can’t take yourself anywhere or do anything.”
Thompson now, at 44, has a spot in the middle of her eyeline where all she can see is grey and has lost 95 per cent of her vision. She relies on her peripheral vision – and technology – to lead a full and fulfilling life, so much so that often people will forget she is visually impaired.
“I’ve never not done anything because of my vision impairment,” she says. “I may not do things the way sighted people do, but I don’t let that stop me. Different doesn’t mean it’s wrong. And hard doesn’t mean you can’t. It just means finding a different way to do it. It’s something I have to do.
“If I still want to have a normal life and enjoy the things I do, then I have to find other ways to do them. A lot of times people don’t know that
I am visually impaired – I don’t use a cane, I don’t bump into things. With new people I will let them know I am visually impaired and can’t look directly at them, because it can be a little bit off-putting for people when I am not looking at them when I am speaking to them.
“I warn them I can’t see very far, so that if I do walk past them at another time and don’t say: ‘G’day,’ it’s not that I am being rude it’s that I have no clue that I am walking past them.
“If I am looking directly at somebody I can’t see from their shoulders up or behind their head but if I look from the side, which is what I normally do, then I can see them through my peripheral vision. But that only works when they are close.”
Thompson can no longer remember what it is like to see the world with clear vision.
“When I was a kid, my dad would point out the shadows and the craters of the moon. Recently I was at an observatory and looking at the moon through a telescope and thought: ‘Ah, that’s what the moon looks like,’ because nowadays I could mistake the moon for a street light if it was low enough in the sky.
“I had forgotten that I used to be able to see that without any help. I don’t remember what it is like to see properly – I have lived with this for so long now that I have had less sight for more time than I had sight.”
Technology has been a saviour for Thompson, allowing her to continue working, raise a teenage son with her husband, comfortably navigate the city by herself and even indulge in hobbies such as crochet and knitting.
“When I first started using an iPhone, it gave me back so much independence. Before that I really disliked catching public transport because I couldn’t see the indicators at the train station.
“If I went and asked somebody for help, especially if I was standing in front of the indicators, I could tell they were looking at me like an idiot. I really hated having to do that. Now I can see all the train timetables in magnification on my phone.”
She is able to work using a modified computer screen and other devices that allow documents to either be magnified or read out to her. She lives her life in as normal a way as possible, taking into account her lack of vision.
“I like to knit and crochet, and if I make a mistake I have to fix it myself and the only way to do that is by using a big magnifier and undoing stitch by stitch until I find my mistake.”
Thompson does not know how much more her sight is going to degenerate.
“I will just continue to adapt and ways to keep going and doing things that I want to do. I like challenging myself to do things. I try not to let anything hold me back.”
Age-related macular degeneration (the name given to a group of degenerative diseases of the retina) is the leading cause of severe vision impairment in people aged over 40 years in Australia and in New Zealand affects one in seven people over 50. A progressive disease leading to the loss of central vision, it affects the ability to see fine detail, drive, read and recognise faces. Although there is no cure, progression can be slowed.
Did you know?
Adopting simple practices can help reduce the risk of macular degeneration. This includes eating a well-balanced diet with dark green, leafy vegetables and fresh fruit daily, fish two to three times a week, low-GI carbohydrates and eating at least a handful of nuts a week. Exercising regularly and maintaining a healthy weight also help. Don’t dismiss difficulties with your vision as part of getting older – the sooner you catch problems, the better.
A full life: Technology has helped Alicia Thompson adapt to a life with vision that is degenerating due to Stargardt’s disease. Modifications make it possible for Thompson to work using computers that magnify what she can see, while an iPhone enables her to read things such as newspapers. She can even keep up with hobbies such as knitting.