If only you could see what I’ve seen with your eyes

If only you could see what I’ve seen with your eyes

Late in 2019 I had a bit of a health scare. Originally thought to be lung cancer further tests and a biopsy revealed it to be a rare systemic inflammatory disease called Sarcoidosis attacking the lymph nodes in my lungs. In 2020 the sarcoidosis decided to have fun attacking my eyes which responded well to steroid drops.

Reflecting on this attack I wrote:

And I know full well that if it hits me a third time it won’t be nearly as forgiving.

It turns out I was right.

A few months ago I started having trouble again with my eyes. My left eye was struggling to focus and my right eye was wanting to shut, especially in bright light. I soldiered on and tried to get on with it. I had an eye patch for when it was really bad but eventually rang up the hospital to see if I could have it looked at.

This was 8 weeks ago. Scans showed blood cells in the front of the eye. The blood vessels in both eyes were haemorrhaging into the eye. These needed clearing up before the doctors could get a better understanding of what was going on. An intensive period of further drops helped but for the first time since my initial diagnosis have had to go on oral steroids as well to try and “hit it hard”.

In an appointment yesterday for the first time the words “vision loss” was mentioned. Admittedly a worst case scenario and something that some laser surgery is hopefully going to avoid (freaking laser beams) but it has stopped me in my tracks. Not only faced with a chronic illness I now have to recognise this is - at least partially - a degenerative condition and this is probably going to keep happening for the rest of my life without ongoing medical intervention.

I’ve been told to avoid stress and screens which as a professional web developer is a bit tricky. But my business partner Matt and colleagues have been brilliant and incredibly supportive, giving me the time and space to work when and how I can.

In the meantime for the first time in my life am trying to get used to doing nothing. Which of course has been impossible but I'm needing to do as much as possible without glasses and away from screens.

So, I’ve been drawing. A lot. And painting. And have rediscovered home brewing.

I’m actually feeling quite philosophical about things. It’s really frustrating walking into things or juggling three pairs of glasses/sunglasses depending on the prevalent light conditions. I can’t really drive at the moment so feeling a little less independent. But it’s all okay. I am blessed that I have loving and supportive people around me and I’m not going blind at least. I’m just a bit slower and things are a bit harder.

I’m mostly just annoyed about the added strain this puts on those around me. Especially Peta. She probably won’t read this so it is safe to say she’s a saint and I’m very fortunate to have her. Just don’t tell her I said so :D