The things no one tells you about going blind

In December 2010, I became a medical mystery as I lost the majority of my sight in the space of two weeks.

When I noticed a change in my left eye, I took myself to an opticians. The poor guy almost fainted when I told him I couldn’t see any of the letters he wanted me to read with my right eye covered. The next day I was admitted to hospital.

It turned out my optic nerves had become swollen but no one knew exactly why.

I sat and watched specialist after specialist stride into the room, shine a light into my eye, have a look, scratch their head and admit defeat.

They tested me for anything they could think of that might be a cause. Clearly they were stumped by the situation. One morning a nurse was taking bloods and I asked what they were testing for.

‘Aids,’ she said.

She shrugged, ‘You never know.’

I was discharged with nothing but the knowledge that hospital food is actually better than student food.

Returning back to my family home to watch my brothers open their presents, I was unsure if that was the last Christmas I’d see.

Until then everything had felt surreal. I hadn’t panicked, as you might expect, but instead remained oddly calm. I was patient and polite with the nurses, I didn’t shout or lose my temper and I didn’t cry.

But being back in familiar surroundings made it real. All the emotions came out at once – all the fear, all the sense of loss, all the pain. I sobbed for hours.

By the new year, I was more or less blind.

Refusing defeat

I didn’t get a dog or a stick. I’m not sure why.

Perhaps it was stubbornness or fear or a refusal to admit that the damage might be permanent.

I was studying acting at drama school and didn’t want to give that up so I returned and somehow got on with it.

It’s surprising just how many strangers say ‘Oh my god, that’s so crazy! How many fingers am I holding up?’ when they find out you have bad eyesight.

The temptation to raise my middle finger to them and ask the same question was strong.

In the first six months of blindness, some strange things happened.

The first thing I noticed was that I developed an incredible memory.

I was learning lines for a play – just before my vision reached its worst and I could still read if I held the book in front of my nose – and I read 40 pages of script, then re-read it for a second time.

When I began to read it a third time when I realised I knew it by heart. The next day I went to rehearsal and didn’t miss a single word.

They say your other senses improve when one becomes impaired and they’re right.

My hearing in particular surprised me.

I could name a song on someone’s headphones from the other side of the room which no one else could even hear.

But blindness wasn’t without its funny side.

I performed in Waiting for Godot and knocked over a tree, the only piece of set.

I also played Macbeth and lost my dagger in the famous ‘Is this a dagger I see before me?’ scene.

During rehearsals, I thought I could see someone sat, crying. I put my arm out to comfort them, asking if they were okay, only to discover that it wasn’t a person, it was a table.

My classmates who saw me do that still won’t let me live it down.

On a night out in Camden, I even danced with Amy Winehouse without realising until later on when she high fived me and said ‘nice dancing’.

I walked into railings, got lost in parks, and stepped over shadows on the floor thinking they were objects.

Most of the time I saw the funny side except one night when I walked into some railings outside a McDonald’s and hurt my knee.

It was late at night and people were laughing at me because they thought I was drunk.

People often thought I was drunk because my balance was bad and I didn’t walk in a straight line.

It was infuriating and embarrassing.

I would go through my day blind, navigating with the small amount of peripheral vision I had. Then, each night I would dream the day I’d just had, in its entirety, fully sighted.

All the faces were there, all the colours, all the smiles. Waking up was hard.

Stairs became my mortal enemy. Climbing them was manageable, going down was a different story. I narrowly escaped breaking my ankle at least once a week.

My friends were a great help. They cooked, moved me out of the way of disaster and helped me shop.

The best thing is they didn’t change towards me. They still made fun of me, played the odd trick (if I put a glass down they’d move it just a few inches away from where it was and watch my confusion as I tapped around trying to find it) and they continued to party with me.

The help they offered was wonderful but those acts alone wouldn’t constitute friendship. A real signs of friendship, when someone goes through as dramatic a change as I did is a refusal to alter the fundamental way you relate to someone.

I was scared of becoming a sympathy case and as long as we were making jokes about the situation, I knew that hadn’t happened.

Dreams come true

After over a year without being able to see, something changed.

I was walking past a bank on the street when I read something for the first time – it was a sign in that bank’s window telling me that ‘there’s another cash machine inside’.

I don’t even bank with them but my dreams had come true.

A month after that, I sent my first text in almost 18 months. A month after that, I got a pair of glasses. From there it was a slow and steady recovery.

Not only did I have to physically recover but psychologically too.

My brain had to learn to trust my eyes again. Even with my vision returned, I could put a glass down and, when I came to pick it back up, not be able to see it until someone pointed it out to me.

Once they did, the glass was fully visible again.

Holding eye contact with people was unnerving for a while. It felt confrontational and exposing. I’ve always been confident and never felt like that before.

Recovery was was extremely slow – to get to where my vision is at now took over three years.

Every day I remained hopeful and counted every tiny improvement.

At the same time, a lot of frustration kicked in.

Having half my sight back made me act as if I could see but I couldn’t. I’d make silly mistakes or try to do things I wasn’t able to do yet and fly off the handle over them.

Today my vision still isn’t perfect. The world looks to me a little bit like a badly tuned TV. I have tiny specs of green, red and blue all over my visual field.

I don’t care though. I count myself lucky because I know how bad it could be and for that, I am forever grateful.

When you lose your sight you also lose your limiting beliefs. There’s a freedom with having to imagine more and, while a silver lining of a very dark cloud, it still influences how I see the world (metaphorically) now.

When you lose something you’ve never thought twice about, you never take it for granted again when it returns.

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