The Observatory

Living with Retinitis Pigmentosa

As a boy of eight years old in a small town on the South Island of New Zealand, I remember sitting in a doctor’s surgery listening to a conversation between my parents and the doctor that seemed to go back and forth for some time. When I asked my Mother afterwards what they were talking about, she said they don’t know what is wrong with your eyes. I asked if I could get glasses to help see the blackboard at school a bit better, her response was “no, glasses won’t help you”. It wasn’t for another four years when I migrated to Australia, that my local optometrist told me that I had a condition called Retinitis Pigmentosa, and that I may one day go blind.

Retinitis Pigmentosa, or RP, is a degenerative condition that affects the retina at the back of the eye. RP is typically described as progressive tunnel vision, so your peripheral vision slowly reduces over time. In my case, apart from a little short sightedness and a little sensitivity to bright light, I had pretty good vision until my mid-twenties. I turned eighteen and got my driver’s licence, played rugby for a local Melbourne club, and spent my weeks doing odd jobs waiting for the weekend of night clubbing and hanging out with my girlfriend.

Slowly, I started losing the ball more and more in my rugby games and had trouble seeing the traffic lights while driving, I also started tripping over little imperfections or missing a step while walking around. Eventually I was diagnosed as being legally blind at twenty five, with an increasingly rapid deterioration over the next ten years, to where my vision is today at thirty-eight of a little more than light perception.

The thing about RP and other degenerative eye conditions is that you spend a lot of physical and emotional energy constantly needing to adjust to your change in vision. At one point, you are moving your face closer and closer to the computer screen to read it, then changing the colour contrast and making the font a little larger, and the next thing you’re using adaptive technology to magnify the whole screen, finally moving to a synthetic voice program that reads the contents of the screen aloud to you. It’s never the same for any two people, and progress can be slow or fast or even relatively stable well into your later years, but constant adjustment across all aspects of your life is pretty common for people with RP.

The funny thing is, isn’t that just life anyway? Sure for me, the past 13 years has been a rollercoaster. Learning how to use adaptive technology to read and write, learning how to use a white cane to get around, how to pour a cup of coffee without seeing the hot water rising up the cup, how to know if you’ve flipped the egg in the frying pan, how to enjoy movies or sport without seeing the action, and a million other things. But hey, over that same timeframe, I actually figured out what I’d like to do with my life, attended university, got married, bought a house (now actually about to move into my third), started working in my field, and experienced the surreal paradox of joy and pain with the birth of my two children and the game of dice that is parenthood.

Life is change if you’re playing the game properly I guess. If you’re willing to take some chances and grow through the good choices and the not so good choices, this circumstance and that, adapting and moving with what comes at you, is probably what the life game is all about.

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About the Author

Brandon Ah Tong

Brandon Ah Tong is the Director of Policy and Advocacy at Vision 2020 Australia. Brandon began losing his sight when he was in his mid-twenties, and has been instrumental in ensuring that the voices of those with a disability are heard. His achievements span: the successful inclusion of people who are blind or vision impaired in the National Disability Insurance Scheme; accessible taxi’s; and more recently the National Eye Health Survey and National Framework Implementation Plan. His work was recognised in 2014 where he received the Victorian Government Disability Award in the Emerging Leader category and was a finalist in the National Disability Awards.View author's posts
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