Note: To all of you reading this who love me, please know I’m writing this from a place of strength, not sadness. I feel sharing this now, after keeping schtum for some years is cathartic for me but also may help others going through their own loss of independence or disability to feel less alone. I hope my frankness is not upsetting but leads to greater connection and understanding.   It’s also very important that we get some laughs in…trust me, without a sense of the absurd, we ain’t getting through alive!!!

Losing colour vision is weird. At first, it’s subtle- you mistake blues for greens then browns, navy, blacks all merge.   All vibrant colour begins to seem diluted – like black tea with a splosh of milk, as if a kid has begun to mix all the poster paint in the classroom with toothpaste.  You can’t trust your first glances anymore.  Several years back, I went to the gym with green eyebrows by mistake,  having mixed up my brown eyebrow pen with my bright green eyeliner. Seeing a chap doing weights next to me giving me secretive (and now I know anxious) little glances, I smiled coyly back and got flirty only to have him head quickly to the nearest exit.  

 Now, I can’t tell if the colour on a wall is white, cream, grey, yellow, pink or light blue.  Just ‘pale’. I look at a sea of bluebells and see well…just plants indistinguishable from the greenery around them. I can’t tell the colour of my clothes unless I peer at them under a very bright light or take them into the sunshine and even then I’m never sure.  A couple of days ago I slammed my fingers into a door frame and in those few seconds when you wonder if you have sliced them off or are all fine, I couldn’t tell if my fingers were bleeding or not. Panicking- as I’m trying to move house and don’t want blood stains on the carpet – I dashed to hold my hand over the sink knowing I would see dark drops against the enamel even if I couldn’t see the red of my own blood. Reader, there were none. Fingers fine.

I mean, come on, that’s weird right– not being able to see the red of your own blood? Am I even human …? This retina malfunction is odd though and inconsistent, thank goodness. It still allow me occasional moments of colour clarity and  there is nothing sweeter than when I get those minutes of  blue in the sky or catch a red of a berry or a pop of crimson in a rose (cue stirring music…).

But here comes The  Ghastly Yellow.  I began to have episodes of a dingy ugly yellow pall over my vision following a bad bout of Covid two years ago.  It was just a few hours at a time at first but then it became a day then days at a time. It’s not consistent for instance I had it all yesterday but not today. No seeming rhyme or reason. Its the ugliest colour you can imagine. It’s the colour of a polluted algae-riddled rotting, stagnant river and it feels like a visual infection,  a pall of pus. It makes skin look deathly and sunlight look like the aftermath of a nuclear event.  Its creepy and makes me very sad.  It also makes my limited contrast vision even worse. 

 Of course, I tried to find out what the hell was causing it.   I went to Bristol Eye hospital twice only to be told my eyes were the same as previously (i.e. a freaking mess) and I needed to understand how going blind worked. This last bit of wisdom, not from my usual wonderful ophthalmologist but instead from an unusually arrogant young locum  who, after a 3-hour wait and the most cursory of eye examinations, sat back full of self-importance and attempted to tell me it was probably in my head.  He called me Miss several times and after a few minutes of his patronisation, I lost the plot. 

 ‘It’s Doctor to you’,  I hissed.  I rarely lose my temper, but I remember shaking so hard I could barely stand up.  I told him how arrogant he was, how thoughtless and how I had been dealing with sight loss since before he was born and this wasn’t me being a hysterical menopausal woman (at the same time thinking ‘my God, AM I a crazy menopausal woman?’). I walked out ignoring his squeaking shocked protestations and found D, my support worker, looking worried. She had heard my raised voice through the clinic door as had many others in the corridor. I didn’t care. I wanted to scream.  Here I was in the hospital, desperate and frightened, and I’m being told that I need to be a better patient and just get on with going blind.  I was calmed by a nurse and the lovely patient liaison co-ordinator but I went home and thought about hurting myself that day.   Sometimes you get to a point where there is no relief and no support and it’s hard to know even how to breathe right.

Anyhow, I digress.  The yellow does that. It can take me places I don’t want to go and it’s SO hard to explain it. A cinematographer might be able to replicate it by using a thick yellow/green gel over a very bright spotlight.   It’s definitely a science fiction colour but dystopian, utterly joyless.

Luckily, I contacted the kind people from Esme’s Umbrella, a charity that supports and researches people with Charles Bonnet Syndrome (CBS). Maybe that’s what the yellow is.  CBS causes hallucinations and colour blotches and washes. It’s neurological not to do with the eyes per se although it appears in people with more than 60% sight loss.  There is an excellent short video on the linked website. I have offered myself up for any trials on RP and CBS and will also look to Moorfields Eye Hospital for more possible trials and support when I go back there later in the year.

So that’s my whole eye-spiel in 2- blogs!   You are now all up to date and next musings will hopefully be all about moving house when you can’t quite see what you are packing! Now…where is that darn cat….??!