a day in the life of... me

by - September 07, 2017

So recently, I felt like I had to write about it because it's such a prevailing issue that dictates my life that I look back and think about how I haven't mentioned it more. Or ever.

For the handful of friends who know - well, you guys already know. And if you didn't know, it's probably because the occasion didn't really arise to talk about it and bring down the mood.

How does one casually drop this into their conversation? I just thought you might like to know that...

I am going blind.

A sentence I never say out loud, in fear of its reality, and because it feels like a taboo. If I don't say it, then it's not true.

Diagnosed as a teenager with RP - a genetic condition and incurable disease with not a lot of background and insight into its progressive nature - it all sounds like the perfect foundation for a tragic drama. Trust me to inherit the faulty chromosome.

Over the years as my sight has failed me and my peripheral field decreases, I face annoyances such as brightness hurting my eyes, having to live in sunglasses ("but it's not even 'bright'"), enduring head rushes every few minutes and complete blindness in the dark. I can no longer function in the outside world on my own without someone's assistance (unless the street is void of people 'cause then woo, no one to walk into). I can no longer get that London job that I always thought I would have when I was younger, because no one is going to hold my hand and take me to the door of my work. I can no longer pop next door to Sainsbury's on my own because the idea of navigating anywhere where there are people is just too stressful. I can just about do a train journey on my own, but then it feels so bothersome that you always have to get someone to meet you at the stop.

The list goes on.

I don't talk about it, not because I don't like talking about it , but because it's very much an awkward conversation topic for the recipient to respond to. Because people don't want to listen to sob stories where they don't know what they can say to make you feel better. And like with any illness or disease, it's the kind of thing normal, healthy people won't be able to fathom because they've never experienced it.

And maybe I am tuned to be acutely aware, but there isn't the same level of sympathy and compassion for the visually impaired as there is for, say, a cancer patient. We are not dying and we are not sick and we are not in physical pain.

Just YouTube Andrea Begley on The Voice for a slew of blind jokes and puns. And whilst John Green romanticised cancer in The Fault In Our Stars between the two mains, the supporting character was dumped by his girlfriend because he went blind. How's that for optimism.

And whilst I power on through the day like I'm fine, mentally I feel very drained. I have felt mentally drained about this ever since I was a teenager and realised that I was not being a hypochondriac about weird things that started happening to my vision.

And it's the little things in life. The little things in life that make you happy, but also the little things in life that bring you down. Like being really good at table tennis and badminton and then never being able to play again. Like how I just want to rest my eyes, but have no choice but to sit in front of a computer screen for 7 hours everyday because that is my job. Like looking at a bunch of colours and then realising that slowly they all look the same when I know they're not. Like the time I accidentally walked into a man and he was so furious, he shouted in my face and called me a bitch. Like the time I walked into the woman who retorted 'ARE YOU BLIND?!' Like the time I crashed into someone else and bruised one side of my face. My life is full of moments that rain on my already-drowning parade. Sometimes it feels like I'm stuck in a nightmare - like one day I'm going to wake up and it's all going to be ok.

But it's not. Because when your sight goes, it just goes. Whilst the doctor tries to reassure and tells me I'm very young still so there's chance that in this lifetime there will be a cure, I also raise one eyebrow to the fact that the hospital I'm an outpatient at are currently funding research and focused on a very specific type of RP "that affects Saudi Arabian men".

But this isn't a pity story. Because pity is the exact opposite of what I've ever wanted. I want people to understand, and show understanding. I want someone to tell me I'm doing a good job. I want to live like my life is normal.

Whilst I'm having a hard time, there's a lot that keeps me going - the rays of sunshine peering through the grey clouds. When my friends take my arm and tell me to mind the step. When I have holiday buddies to travel with. When my boyfriend waits for me at the door of my bus when I get off and takes my hand. When he always tells me "I've got you"...

It's the little things.

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