Part Two: Optic Disc Drusen (Hiding there in the dark, just out of reach)

This is Part Two of this story. If you’d like to go back to the beginning to read about how I was diagnosed with Optic Disc Drusen in the first place, read it here> Part One.

Three weeks ago I lost part of my sight. Overnight.

I realised on a Saturday morning and it might sound strange, but it took me until Monday morning to realise that it was real. I got a lift to A&E.

A vast swathe of vision in my left eye had just disappeared. Replaced with a blur of colour and patches of sight. I could hold my hand up and it would stop at my forearm. Just not there, as though I were an amputee, my brain telling me that my hand was there but hell if I could see it.

Eight hours in waiting rooms over two days.

‘Your tests replicate what you describe, your vision has hugely deteriorated.’

‘Is it permanent?’

‘…I don’t know.’

And then two days later.

‘Your optic nerve is inflamed, that’s what is causing the vision loss.’

‘Is it permanent?’

‘Perhaps.’

My neuro-opthalmologist spent a lot of time with me. He flicked through my previous MRIs, amused and baffled by the brain lesion they found months before.

‘Have you seen your latest MRIs?’ he asked me. No.

‘This lesion, it’s not related to the vision. Wrong place. In fact, it’s not doing anything at all I don’t think. It’s too big and in far too sensitive a place for it to have appeared quickly. You would know. It’s probably been there forever, your brain must have developed around it.’

So that was good news.

‘It’s likely the Drusen have moved into the optic nerve and are causing the inflammation. But that would be untreatable. So we’ll test for other things. Treatable things.’

I liked the optimism.

This is not the first time parts of my vision have left for greener pastures. But it’s the first time I could tell. And my god, what a difference it makes.

I cycle to the company I work at three days a week. My saving grace is that it’s along a cycle path and that we ride on the left here. I don’t see how I would be able to cycle if we rode on the right. Or if this had happened in my right eye.

A world of hazards

Lampposts, dogs, cygnets and children come out of nowhere. I have to turn my head over my left shoulder as far as it will go to ensure the coast is clear.

Supermarket shelf corners are a nightmare. In fact, supermarkets in general are a nightmare. There are so many people. So many trolleys, so many baskets. I feel rude, often people push past me, but I didn’t know they were there. I can’t keep a look out all the time.

No one can see that I can’t.

I knock over glasses of water. I can see the desk, but half is a mirage. My brain knows it’s desk, but it misses out the glass entirely. Things become invisible. It’s quite extraordinary. Like an endless magic trick that fails to entertain.

Part of my central vision has gone. I can close my right eye and half my laptop screen just disappears. Greyed out. Not there.

My housemate stands next to me. I wouldn’t know.

I read about those with partial sight.My vision loss doesn’t qualify for that term and I’m staggered. Not that it doesn’t qualify, that partially sighted people can still go about their daily lives. For me, this is flooring.

I’m scared it will get worse. People tell me I will adjust.

I am. Adjusting.

It requires so much concentration though. Leaving the house is exhausting. Walking through the high street is exhausting. Exeter’s buses are stealthy enough as it is, now it takes me twice as long to cross any road for fear of buses or Deliveroo cyclists appearing out of nowhere.

And they do, cyclists are the hardest. They’re hard to see when I’m walking, they’re hard to see when I’m cycling. Maybe it’s the speed. My brain sees the road as clear even though there’s a cyclist and by the time I’ve checked three times, they’re already upon me.

Everything is harder. It’s harder to see in low light. I turn lights on when before I wouldn’t have bothered.

The muscles across my forehead are tight from waking until sleeping. I’m not sure why, I think as my left eye struggles to drag the light in, it creates tension.

I’m booking a flight to Copenhagen. I’m going alone. To the bicycle capital of Europe. It seems insane when the simple act of going to the supermarket is so difficult.

But perhaps it’s some small act of rebellion. I will not be defeated.