I KNOW I don’t drink as much water as I should. So when I woke up Monday 26 November last year with a headache, I assumed it was dehydration. Either that or I didn’t sleep well.
I decided I’d take some pain relief and nap during my lunch break.
By midday, the headache had become excruciating so I left work and started walking home. Somewhere along the walk home I started to rub my right eye and suddenly everything went white. I thought that was really weird so I closed my right eye over and over again and realised I couldn’t see anything through my left eye.
Panic set in and I remember texting my friend, “Not to scare you, but I think I’m going blind.”
I’d been treated a few months previously for uveitis in my left eye; the back of eye was inflamed (my vision wasn’t affected) and I’d successfully finished my course of treatment under careful supervision. My first instinct was to ring the same consultant I’d been seeing. I rang, explained the pain I was in, the loss of vision and, although he was working from a clinic in a different county, he advised me to see him as soon as I could.
A friend of mine rushed to me from work and drove me to see my consultant. When I got there, it was discovered that there was a build up of liquid being stored at the back of the left eye. They couldn’t tell me exactly how long it has been accumulating for, but the optic nerve was filled and under pressure to pop.
‘One of the medications made my face swell’
I was told that the pressure in the eye – which should be somewhere between 10 and 20 – was at 39. I was put on the maximum dose of oral steroids, as well as other medication and eye drops to help reduce the pressure. One of the medications made my face swell instantly; another gave me spasms in my arms and legs.
I’d celebrated months ago when I’d come off medication and now I was back to square one.
I felt very defeated. Coming off medication wasn’t easy and I went through a lot of withdrawal. I hated taking tablets every day and I hated even more the side effects they came with.
Even though the pressure had gone down to 33 on my Wednesday check in, I got to the clinic on Friday to find out the pressure in the eye had risen to 59. Immediately, I was referred to a hospital in yet another county and when attempts to dilate the pupils failed, surgery was the only remaining option.
How did I go from a headache on Monday, to being scheduled for surgery the following week? Everything was moving so fast. On December 6th I went in for surgery. Sitting in a wheelchair in the hallway, I kept humming to keep myself calm – this would be over and I would be fine.
I woke up hours later and was told the surgery had been successful. Even though the pressure was high, they got in okay, created another hole in the eye to drain the liquid and sent some of it to the lab for testing, just in case.
The eye was covered up and the surgeon would check on me in the evening. It was during that check up that it hit me – I still can’t see.
The liquid had been drained but so much damage had been done to the optic nerve. Medically, those cells couldn’t be fixed. I was numb. I wasn’t quite sure how to process this information. In my mind I hadn’t quite thought about it.
The first few days post op are a blur. At least I was at home in my own bed. But I was fumbling on the stairs and slamming things down on the table because I thought it was closer. My sense of depth was completely off. I’d wake up on my right side and immediately go into a panic before realising I just needed to switch sides so that I could see.
‘I cried myself to sleep’
I cried a lot. I cried myself to sleep. I cried when I woke up. I was afraid to leave the house and I was grateful the occupational therapist had given me a month off work. I felt like I was drowning and would lie in bed struggling to breathe.
The days rolled into each other and eventually I had to go to the pharmacy to get more medication. That was the first time I started bumping into people. Not because I was clumsy, but because I couldn’t see them. Anyone standing on the left hand side or coming towards me from that direction wasn’t in my line of vision. It was a lot to take in.
The weeks went by and with support from family, friends and a cognitive behavioral therapist, it got a little easier.
In January 2019, I got the go ahead to return to work. I moved seats to the end of the row so my team are now visible on the right side of me and after several lunches of bumping into people, I’ve learnt to take my lunch either earlier or later than the majority of the company.
I still get anxious every time I’m in a crowded place and try to walk on a certain side of the road so I can see most people.
It hasn’t been the easiest road but I have more good days now. I started writing music again and it has really been a place of emotional expression and healing for me. My song, Under Water, helped me to communicate that feeling of ‘learning to breathe underwater’ as a metaphor for this new way of living that I’m adjusting to. I got back on stage for the first time in June and I genuinely felt alive again.
There are still days (sometimes weeks if I’m honest) where I find it hard to get out
of bed. But I’m learning to be kinder to myself. More importantly, I’m learning to
be kinder to everyone else.
Just like me, not everyone’s disability or struggle is visible. We are able to show empathy to a wheelchair user because the wheelchair is visible – but what about someone with a neurological, cognitive or emotional disorder? Although invisible, these are real issues. We have no idea the depth of the struggle behind each smile and so I’m learning to give allowances, show empathy and kindness whether I can see the issue or not.
In my case, I’m still praying for a miracle (because miracles do happen). But in the
meantime, I’m learning to adapt. Not just to monocular vision but to a new
perspective on life.
NC Grey plays The Guinness Cork Jazz Festival (24 – 28 October) followed by a headline show at The Sugar Club on Friday, 8 November. Tickets available from sugarclubtickets.com
To embed this post, copy the code below on your site
have your say