World Sight Day | Living with sight loss, trauma and decline

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I was the only six-year-old I knew who could spell ‘haemorrhage’ correctly. It was a word I learned from the dictionary, reading it aloud to my mum as she wrote a letter excusing me from P.E. lessons.


For those of you who don’t know, I was born with a condition called Incontinentia Pigmenti. The condition can affect many parts of someone’s body but, for me, it most prominently affects my eyes.

It is my experience with IP and resulting symptoms that prompted me to write this post today, as well as urge everyone to regularly have their eyes checked. The International Agency for the Prevention of Blindness (IAPB) states that 80% of the world’s blind are avoidably so. This is a frightening statistic.

To find out more about what you can do to lower this number, please visit their website.


Bright lights and dark shadows


When I was six, I went into my mum’s bedroom, complaining of ‘lights in my eyes’. She told me I’d probably just looked at the ceiling lightbulb and dazzled myself. She also told me to go to bed because it was 9pm and I had school in the morning. She had no idea what had just happened – and how could she? I didn’t know what I was seeing was a haemorrhage and she couldn’t see anything visibly wrong with my eyes.

Knowledge-is-Power

When I said I still saw ‘lights’ the next morning, she took me immediately to our opticians to have my eyes checked. By now, my mum obviously knew something was genuinely amiss and she didn’t rest until she knew what it was and how she could fix it.

It is her attitude towards my eye health that I’ve adopted over the years.

My opticians told us that I’d experienced a small haemorrhage (bleed) in the back of my right eye. The ‘light’ obscuring my vision was actually blood from a broken vein that had seeped into the jelly of my eye. His recommendation was to immediately seek help with Moorfields Eye Hospital in London, which we did.

The treatment and care I received at Moorfields was impeccable. The specialists took us through the diagnosis, next steps and, eventually, restored the vision to my eye. They also ‘sealed’ the broken vein with laser treatment to ensure that that specific weak vein didn’t cause the same problem again.


Seeing red


More weak veins broke as I grew up. Over the next ten years, I had more haemorrhages, some lasting for a few days, others lasting for up to six months at a time. I became accustomed to seeing the world like this:

Left eye

Right eye

braemar-playpark-e1507812878977.jpg 4347859-dark-red-abstract-wallpaper

Whenever it happened, I fell back on the advice I’d received from healthcare professionals. I took care of my sight, I never did anything that could make matters worse or risk it (which sucks because I’ve always wanted to go bungee jumping and sky diving and I’m not allowed). Sight matters more.

I’ve been partially blind in my right eye at different times in my life and – if it weren’t for the treatment I received at Moorfields, the quick recommendation from my optician, for the urgent investigation headed by my parents – I may have been rendered permanently blind.

As it is, my right eye has greatly diminished vision because of the ‘ghosts’ of haemorrhages. The old blood and damaged tissue from Bleeds Long Past are still visible to me, but they are not red anymore. They are grey, and they move with my eye if I look in any direction.

Basically, when I close my left eye, I see the world through a grey film of something similar to the below:

giphy


As a separate issue, I am appallingly short-sighted. My myopia comes in at about -10.25 in both eyes. I’ve worn glasses since I was five and my sight has declined every year until very recently (2015). Did you ever watch Scooby Doo, when Velma loses her glasses? Yeah, that’s me. Without my glasses, I can only see shapes and colours and absolutely no detail. Without my glasses, life looks like this:

This is my cat Minnie

This is my cat Minnie when I don’t have glasses on

Minnie MinnieBlur

Big difference, right?

You might not think this is too bad. Minnie’s a cat, and I can tell this even when she’s blurred, so that’s fine.

Now imagine being me out late at night in London. My glasses break (completely unwearable) and I don’t have any contact lenses as substitutes. All I can see is this blurred world, it’s dark and somehow I have to find my way home from an unfamiliar place.

This is something that actually happened to me. It was one of the scariest experiences of my life.


Seeing is believing


My mum has perfect eyesight and is often baffled by the things I struggle to see because she sees so clearly. It’s hard to imagine what loss of vision is like unless you’ve experienced it, which might be why so many people don’t think about eye health. This needs to change.

I use my eyes a lot. I’m a reader, a writer and unabashed Netflix addict. My day job requires that I pay attention to visual detail – I am an editor, a graphic designer and I’m on the computer at least 8 hours a day. I have a great appreciation for art. I love seeing my family’s faces, my boyfriend’s smile, my friends rolling their eyes when I say something stupid. I like being able to cross the road without someone’s help. I like being able to see, so I have regular eye tests and, once a year, I return to Moorfields to ensure that my whole IP-haemorrhage problem is being handled as best it can.

My vision matters to me and I will do everything I can to keep it. You should do the same. Don’t be one of that 80%. Please, get your eyes checked regularly, keep your vision healthy and help others do the same.


World Sight Day links:

The International Agency for the Prevention of Blindness (IAPB) >>

Giving Sight’s World Sight Day Challenge >>

Moorfields Eye Hospital >>

One thought on “World Sight Day | Living with sight loss, trauma and decline

  1. I have chronic Iritis in my left eye. Basically, my immune system gets confused and thinks my left eye is a virus that must be destroyed. The risk is my retina detaching if I get a flare and don’t do anything. Whenever something weird happens to my eye, I’m at my eye doctor and having him check it out. He pretty told me that’s the best thing because lost time is lost sight. I kinda like having vision in both eyes (even if without my glasses, I can’t even see the giant E on a sight test.)

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