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I haven’t tweeted once about #MacularWeek2020 & I think it’s because whenever I tweet about going blind people often ignore it or don’t know how to respond or it actually upsets people close to me. It also takes a lot to tweet about this & has costs: personally & professionally.
So with that to one side, I just wanted to tweet a few things about #Macular conditions in the hope of raising awareness and hopefully some donations if you can 
https://abs.twimg.com/emoji/v2/... draggable="false" alt="👉🏻" title="Rückhand Zeigefinger nach rechts (heller Hautton)" aria-label="Emoji: Rückhand Zeigefinger nach rechts (heller Hautton)"> https://www.macularsociety.org/macularweek ">https://www.macularsociety.org/macularwe...
So I’ve had this condition since 2014 and I’ve been terrified since. Yes, every day, I wake up and the first thing I check is if I can still see. I can see very well, although over the years, I’ve seen changes in my vision. Some things are not as easy. It’s extremely frustrating.
The fear of suddenly losing vision and permanently so, in an instant, sometimes leaves me so still and quiet inside that it takes days to really surface. I am still able to function but I am afraid and deeply defeated for periods on and off. 2015-2016 particularly bad years.
Friends have been left wondering I am sure as sometimes I am so worried that I fixate on my vision. I am constantly testing it. Has the blind spot in my vision gotten larger? If I close one eye can I still see through the other? It’s unrelenting. It never leaves me. It never does
My left eye is worse than my right. At other times, my absurdity of it all becomes humorous. If I am really bored at a talk I’ll close my right eye and the speaker at the lectern will vanish into the void that floats in my left eye. I will make them disappear. A magic trick.
The absurdity* (what would Beckett have to say about autocorrect?)
I suppose, some day, my left eye will get worse, and another day, my right eye will go the way of my left. And, I’ve made peace with that. Honestly, I will bear this. The thing that makes it hard, really hard, is not knowing when. Not knowing how long I’ve got.
I am very fortunate to have such good vision and to have seen such beauty and wonder; I drink in all these things and every sunset is precious. Nothing or no one can take that away from me. There are things that I will always see no matter how well my eyes work.
And, I just want to make clear, too, whilst I very much wish to keep my sight, I don’t see blindness as some huge tragedy; it’s not pitiable & it shouldn’t frighten. I know so many people with visual impairments/blindness who are hugely fufilled, capable, high achieving & content
There are also blind or visually impaired people who are hugely pedestrian! Ha! They are people & I don’t want to reproduce any super crip narrativising.
And believe me when I say this, I’ve worked hard to realise a dream of being an academic and no matter what I’ll be continuing in my career. In fact, my job, my students, my field, my colleagues, is what has kept me going. My work has given me strength.
I also know that I am not the only person going through something like this. I know others who can’t tweet about these things. I would never speak for them but I acknowledge them and I stand with them and anyone else who has a disabling condition, invisible or not.
If you haven’t heard about macular conditions, well, I am asking you to read up. They are the leading cause of blindness in the U.K. Someone you know at some point in your life will be affected by one of these conditions. We need to have this conversation. We need to face it.
And if you can-only if you can-please think about donating.There’s a simple way by text @MacularSociety details https://abs.twimg.com/emoji/v2/... draggable="false" alt="👀" title="Augen" aria-label="Emoji: Augen"> Text BEAT/BEATNOINFO to 70450 to donate £3 to the Macular Society (A charity registered in England and Wales 1001198, Scotland SC042015. 1123 Isle of Man).
Thank you.
