Like most people, I wasn’t born blind. But, in a unique(ish) twist of fate, I was born with the potential for blindness. For me, going blind has been a slow process of discovery. Turns out when your field of vision is slowly narrowing, you don’t actually notice. Or at least, I didn’t.
My journey of discovering my blindness started in high school. For biology class, we had to do a research project and we got to choose our subject. I chose colourblindness and in a very out of character move, I actually did the homework.
Scrolling through the informative wikipedia page on the subject, I got a good laugh looking at those dot patterns that are supposed to show a number. The examples on wikipedia were obviously defective, some of those patterns didn’t have numbers! When I shared the joke with my family they all came to have a look. They could see all the numbers in the patterns. Whoops, the patterns weren’t defective, I was.
According to the wikipedia article, I am red green colourblind. Which doesn’t mean I get red and green mixed up with each other, rather I get green mixed up with blue and red mixed up with pink. Despite fully acknowledging and accepting my colourblindness, then and now, I will still argue the colour of some things with fully sighted friends and family. I don’t care what anyone says, that shirt is blue.
A year or two later, in chemistry class my entire year got a very easy titration assessment thanks to my colourblindness. The teachers couldn’t very well assign a reagent with a subtle reaction with me in the mix so I take credit for everyone’s excellent grade!
My colourblindness has definitely gotten worse since then. I have about seven different shades of red nail polish, but these days they’re all looking very same-same. I can no longer tell which skittles are orange which is terrible because the orange skittles taste like death. These days I am forced to consult others – family, friends, strangers in the store – about the colour of an item of clothing, nick knacks, or craft supplies.
Towards the end of my time at uni, I was at the optometrist to get a new prescription for my glasses. The optometrist was having trouble getting the prescription right. Eventually he gave up because while it was normal for this to happen with “someone over the age of sixty”, it definitely wasn’t normal for someone in their early twenties. He referred me to a specialist and sent me on my merry way to drive myself home.
I was getting my adult life started, moving out of home and adjusting to the daily grind of full time work so I more or less forgot about that referral in the year or so it took to get an appointment.
The clinic ran a battery of tests on my poor eyes. These included getting those awful pupil dilating drops, having bright lights flashed into my eyeballs and a test where I had to click the button when I saw the light blink in my peripherals.
After all the tests had been run, the optometrist on duty told me my retina was deteriorating in a manner consistent with retinal dystrophy. I had no idea whaat that meant at the time, but I’ve since learnt it basically means the rods and cones that make up the light receptor cells of the retina are dying. It is a subset of retina pigmentosa, which you might recognise from your standard issue, TV procedural blind character – usually a victim, occasionally a uniquely useful witness.
So, at twenty two-ish, looking stoned without the fun, I learnt I was going blind. There was no sad, dramatic music. The doctors voice didn’t fade out as my head filled with static. I didn’t panic or cry. I don’t recall having any particularly strong emotion except maybe curiosity. To this day I still haven’t cried about it. A friend who has a similar condition assures me that at some point I will cry about it.
I think the strongest feeling I had about my diagnosis at the time was relief. I could stop pretending, to myself and others, that I could see the aeroplane in the sky or the sail boats in the harbour. I didn’t walk into that sign because I was clumsy, I didn’t struggle to find the right office because I was stupid. I just can’t see.
That appointment was the first of a series over a couple of years that led to a full diagnosis. The cause of my colourblindness and my skill of tripping over cracks in the sidewalk is a very rare, recessive genetic mutation. So rare that when the genetic results came back, the first thing the doctor asked was if my parent were related (No. As far as we know.). I like to think I would fit in great at Professor Xavier’s school for mutants. My mutation, instead of letting me run through walls, lets me run into them with my whole face.
In the four or five years following that first appointment my visual acuity dropped off a cliff. I went from being able to read on any medium as long as I was wearing my glasses, to only being able to read on screens if the colour was inverted (white writing on a black background). I had to start wearing sunglasses all the time outside, both to improve how well I could see and for my comfort.
It was slow though, and the adjustments I made were small and gradual. I didn’t really notice the loss in the living of my life. It all felt fairly theoretical until I went to Paris for the second time.
The first time I went to Paris I was eighteen, and I distinctly remember standing by the fountains at the end of the Champs-Elysées and I could see the Arc de Triomphe. I remember loving the view. When I went back at twenty six, I stood in the same spot and I could no longer see it. That’s the moment how much vision I had lost really hit home. It was not a moment I enjoyed. That was the trip I did the Camino de Santiago with my sister and trust me, walking 800km over uneven and unfamiliar paths definitely cemented my new reality for me.
Eventually, in 2020 (the irony does not escape me) I reached the threshold of legal blindness. For me this status was achieved through the narrowing of my visual field. Basically, I have no peripheral vision. I can only see straight ahead. Tunnel vision, if you will, although I don’t like that description. As a bonus I also I have some serious issues with glare, hence the constant need for sunglasses. Keep in mind, blindness is a spectrum. Being legally blind doesn’t mean I can’t see anything at all, just that I can see much less than fully sighted people. Amongst my blind friends, I have the most vision and I’m not gonna lie, I do lord it over them as I read them the menu (with the assistance of the magnifying, colour inverting app on my phone).
After being accepted into the ranks of the blind New Zealanders I started using a cane (a journey worth of its own post), had a brief stint with a guide dog (another tale deserving its own post) and made some blind friends. Going blind has been an adventure, and has only resulted in one serious injury!
My vision has stabilised over the last couple of years. Whether or not it’ll remain at its current levels or take a dive off another cliff, I don’t know. Genetic testing is too new, and my mutation is too rare for there to be enough case studies to give me answers. I’m not worried, what will come, will come. I’ll adjust when I have to and in the meantime, I’ll read as many books on my kindle as I can before I’m forced to make the permanent switch to audiobooks (doesn’t matter how good the reader is, they read it WRONG).
There is currently no cure or treatment for retinal dystrophy. Currently, there are two potential treatments on the horizon for people like me – genetic therapy and retina transplants. Genetic therapy is still very expensive, and while it may eventually prevent further deterioration, it’s unlikely to reverse damage that’s already happened. As far as I know, retina transplants are still a long way away from being successful. Personally, I wouldn’t risk what vision I have for the chance of more. There is a strange relief in not having any real hope for treatment, its forced me to accept my situation as it is, and gives me a certain kind of surety when planning for the future .
Other than the moment in Paris, I’m not upset about losing my sight. Life has dealt me a pretty good hand with one shitty card. I’ve never had the patience to let it stop me from doing what I want – although being blind is an excellent excuse to get out of activities I never enjoyed anyway, like hiking, camping and stock takes. There are aspects that frustrate me (not being able to browse library shelves or read street signs) and aspects I quite enjoy (skipping lines at airports and avoiding Unicef street fundraisers).
I’m blind as a deaf bat but then, I had to have some flaw or the world just wouldn’t be able to handle me.
