“I started to go blind at 19” Alicia Thompson, 44, lives independently with only 5 per cent sight
“I started losing my sight when I was 19. I was working as a data entry operator and suddenly I started making mistakes. My performance dropped from 100 per cent accuracy and that’s when I realised something wasn’t right.
I have a condition called Stargardt’s disease, where the cells in the centre of my retina are dying, leaving me with peripheral vision. Each time my sight decreases, I need a few days to adjust and then that becomes the new normal. Now, I only have 5 per cent vision and it is still getting worse.
The first biggest challenge was having to give up driving. It was the hardest thing I’ve ever had to do. Nothing else has ever been that difficult.
I was 25 when I had my son. You have to be careful with babies and keep them clean and sterile. This was probably the next biggest challenge. I couldn’t see if the bottles were cleaned properly, so my husband took over the cleaning. My sight wasn’t as bad as it is now. I still cooked all the baby food, did all the washing and changed nappies. I didn’t miss out on those jobs!
As my son got older, not being able to do the things that other mums do, like read stories, had an impact. He had to walk when I was picking him up from school, whereas my husband could drive. Just little things like that, but they all add up.
My two favourite quotes are ‘different doesn’t always mean wrong’ and ‘hard doesn’t mean can’t.’ I don’t let anything get the best of me. I’ve got a couple of handy tools that assist me every day. I have a CCTV, which is a big screen with a camera underneath. When I place letters under the camera, I can see it on the screen. I take my portable magnifier whenever I go shopping and out to restaurants to read menus and to look at labels on different items. My iphone has really changed my life. I know that if I ever forget my small magnifier, I’ve got the accessibility features on the magnifying iphone app.
We moved 12 months ago to be closer to a station and shops, so that I could be truly independent when my husband is away. I wake up at 4.30am every morning to get into the city for work. I’m a relationship manager with a team that supports businesses with their continuous improvement programs. My magnifier comes with me to meetings. The built-in camera can zoom in on presentations and magnify it on my screen for me.
I might not do things the same way as people with sight, but if I want to achieve the same outcome I need to tackle it differently. I love challenges. My husband just bought me a 1000 piece puzzle! I’ve got a few things that I’m knitting and crocheting too. I probably count my stitches more than a normal knitter does to make sure I haven’t made a mistake.
Sometimes if I’m really struggling to do something, it’s easy for me to think that I can’t do it. But, in actual fact, I know I can do it if I really want to.”
The Macular Disease Foundation are inspired by Alicia’s achievements and positive view on life. If anybody with Macular disease needs guidance or support, please call the foundation’s helpline 1800 111 709 or visit their website www.mdfoundation.com.au.
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