What A Difference A Day Makes: Going instantly blind at age 17 was very traumatic

On the Tissington Trail in Derbyshire, I was riding along a slope downhill – I cranked down the gears. We came to a disused railway line under a tunnel, with lots of broken tarmac underfoot where the railway lines used to be, jagged road stones as big as your hand.

I was in front, the tunnel seemed unusually dark, so I shouted for my dad. He cycled to get ahead but didn’t get to me in time. My front bike wheel had already lodged itself into a big stone and I fell over my handlebars onto the ground. 

I remember crying hysterically – I had gashes in my legs and was frustrated there were no lights in the tunnel.

I remember Dad saying how sorry he was for not realising it was too dark for me. And I thinking ‘why is he sorry? It’s not his fault.’ 

One moment I saw the ground before the tunnel and – in one flash – I couldn’t see anymore. My ten-year-old brain couldn’t process why I fell off my bike, why everyone else could see the ground.

As we drove home in my dad’s black Volvo, I started wondering ‘why me? Didn’t everyone else think it was really dark?’ In that moment, I realised I could no longer see in the dark.

Until then, my eyesight was something my parents and the consultants chatted about – and I got my favourite dinner when I got home. 

I’d been diagnosed at four with the rare condition, Incontinentia Pigmenti (IP). Back then, it presented on my skin, but at a routine eye exam when I was eight my mum was told I didn’t have ‘good vision at all’. Yet, only a handful of people with IP go blind from it.

So that day, falling off my bike in the tunnel was a massive moment. I started realising maybe something might actually be really wrong. 

When you’re 10 you just don’t think anything will happen to you. You feel invincible, like your bones are spongey and life has no limits. I lost that in an instant. I didn’t feel invincible – I think a lot of people do, even into their 30s.

That was just the first time out of many that my body gave up on me. When I was 11 I lost the sight in my right eye. At 17, studying A-level history, I was due to go on a school trip to Poland. 

The day my friends flew out was the day I had emergency surgery to save my remaining sight, in my left eye. It was unsuccessful.

Going instantly blind at age 17, pretty much overnight, was very traumatic – no one around me was blind, and no one could show me the way. 

I’d just sit, tearful, in bed, so traumatised – through no fault of mine my eyes didn’t work and now people were seeing me completely differently… it didn’t make sense. I think half my problem with my blindness was not the actual blindness but the mental health associated with it.

It’s weird how your brain blocks out so much trauma. I’m ok to talk about it now – I couldn’t have five or six years ago. 

When I was 10, reality came crashing down. I didn’t feel like a child anymore and that’s so sad. But in another way, it gave me the resilience, drive and determination I have now. 

I grew up quickly. It’s lovely when people say ‘you’re so young and have all these achievements’. I don’t feel young – I’m an old soul because of what happened to me.

Though I’m sad about it, I’m sort of glad it all happened. I love being blind. People are shocked when I say that. But I feel sad for people who don’t love their disability. For me, there would be absolutely no point, getting up every day and hating what has happened.

Blindness has given me so many gifts – to write cool stories, be who I am online. Without it I wouldn’t have such a sense of self, of purpose. If sometimes I’ve hit a roadblock with relationships, work… well I know what my core values are, I know what’s good and bad for me.

When I created Ella Jones – the hero in my children’s book – I didn’t want her to have a superhero power. Her superpower is her resilience – and her disability. 

She’s such a cool, awesome girl who’s blind and has so much about her. She’s so confident and resilient, with her guide dog Maisie. She’s everything I would have wanted to be at that age – she’s a manifestation of what I want to put out in the world. 

I want people to see ability in disability. It’s so weird to me that I feel I’ve lived two lifetimes in one, and I’m only 29 – that 10 plus years ago I’d have said I hated blindness. 

I’m not that girl anymore – and I love that I don’t look at that girl before I was 17 and wish I was her.

• Royal Television Society award-winning blind broadcaster, content creator and disability activist Lucy Edwards has a social media following of over 2.8 million. Her debut children’s book, Ella Jones Vs the Sun Stealer is out now, €11.60.