Welcome to your life,

There’s no turning back…

Tears for Fears: Songs from the Big Chair (1985)

So here we are, 35 years on from my original diagnosis of Retinitis Pigmentosa and now moving into the final round of useful vision. 

How do I see?  Imagine a Polaroid photo but one that is very over exposed. Now imagine that it’s been left out in the rain and sun for a few months and – just before you pick it up from the ground- someone in heavy boots treads on it.

There you go!  My vision!

In the last few months, I have had days when I can barely see my own hands for hours at a time, am unable to peer through the murk to see my magnified computer screen and struggle walking anywhere I don’t know well, even with Mitzie.

It has come to my attention that my inability to ask for help and support has not been a win for the team. For instance, my current kitchen isn’t an accessible space for me and instead of trying to cook this past year, I resorted to oversimplified easy meals that I could do in microwave and air fryer or didn’t bother at all and just occasionally grazed from the fridge or ate out of cans.  Luckily for me, a friend picked this up on a visit a few months ago and has gently begun to prod me back to a more healthy approach to eating, regularly buying me groceries and occasionally cooking me meals.  (I have the best friends – every single one of them has tried to offer me help at some point or another and quite often been rejected-  some have snuck it in knowing how bad I am at accepting.  To all of you I can only say again and again how much I love and cherish you!)

I have also been horribly slack with my own writing and any reading for work because I have yet to learn how to make notes from an audiobook i.e. reference quotes and page numbers, highhlight quotes etc. I have been anxious about new tech and so put off doing the hard work that will need doing for me to be competent with screen readers and note taking. Reading from a screen, even with magnification, physically aches so I can only do a bit at a time but I feel lost listening to academic journals via audio. I have baulked and prevaricated and fuck me if I am now so behind the curve of my research, I’m almost starting over.

And mine and many others Access to Work (government in work support for disabled folk) has been slashed. They demand we work but then make it impossible. (Note to self- never vote Labour again.)

Admittedly, I have also been ‘moving house’ for well over a year now, living out of boxes, waiting on solicitors, buyers, estate agents….  Not a healthy state of liminality for anyone let alone someone experiencing increasing vision loss.

I am hoping to change the narrative.  I am going to own up to my blindness, admit it’s fffing awful and completely terrifying BUT it IS survivable. People manage, even thrive with no vision.  Technology has to become my friend. (Arrrghhhh!)) I’ll have to admit to things I need help and support with (gross and more aaaarrggghh!)  And I really need to be somewhere I can begin to future proof for no vision and stop pretending it’s all manageable.

Here’s to a new house in June! This is going to be one bonkers adventure!