Eyes/The Grey Patch

Blue orchids. The moony whites of her smiling eyes in the darkness. My reflection in the back of a teaspoon. Words, making their way to the yellow-tinged edge of the page.

I hate the idea that my close call with sight-loss has made me more grateful for the ability to see, because truly I would rather have gone on being ungrateful and saved myself the grief. But I’d be lying if I said I didn’t see things differently. I think most of that is due to the likelihood of increasing sight-loss throughout my life. I may lose just a part of it a fraction at a time, or I could wake up tomorrow in a world of irreversible darkness. This knowledge encourages me to suck up everything I see, to create memories of these beautiful colours and fascinating shapes, and so perhaps I don’t forget these faces. Magenta, mahogany, the shimmer of the sugarbowl, a sarcastic hint in a smile. I make sure I look a little longer.  

The grey patch in the centre of my vision developed throughout the day. It started like heat haze, rising from whatever stepped in its way, and expanded slowly outwards. At the time I was becoming increasingly paralysed. I was vomiting blood while being sucked in and spat out of a hot, uncomfortable slumber. I’m not sure when I realised that the ‘heat haze’ had turned opaque grey and engulfed most of the vision in my left eye, along with blurring that in the right. I didn’t seem alarmed as I searched for the faces that belonged to unexpected familiar voices at my bedside. Perhaps I was just comforted to know my Mum and Brother were there. Perhaps I was more concerned with the dead weight dragging from my ribcage. I’ve come to believe that it was a good thing, not being able to see properly at that point. At least then I couldn’t see the grief in my mothers eyes, those tell-tale red blotches on her freckled cheeks; at least I couldn’t see the bitten nails, the fear, the anguish written into every sleepless crease under her lashes. In honesty, I could feel it all as her hand gripped mine through the bars of the hospital bed anyway.
It was about 4am. I’d been rushed by ambulance from my local to hospital to the Western General in Edinburgh, almost an hour away. My Mum and Brother had been heading for the first hospital when they received the phonecall from Kirsty to explain I was on my way to the High Dependency Neurological Unit. A quick read back through my discharge letters explains that I was being treated for viral and bacterial meningitis, although at this stage nobody knew with any certainty what was making me so ill.  

It seems very cliche when talking about traumatic events to say “It was all a blur!” but truly the next few days were. Headless nurses pricked my veins and hooked me up to unidentifiable beeping things. The arms of faceless doctors protruded from a dull cloud and hammered my reflexes. I searched impossibly for comfort and connection in Kirsty’s eyes, wishing I could return the same. I was asked over and over again what I could or couldn’t see.

As time went on I discovered ways of seeing around the imposing grey patch and ways of seeing a little better. I’d move visitors away from glaring windows and look slightly left of what I wanted to see. My mind cleverly filled in the blanks. Reading was impossible, as was watching the television. So I lay for hours on end trying to wriggle my toe and glancing sideways to try see if it was moving. I don’t think it was. My eyes. My precious eyes. I became focussed on what a lack of sight would mean for me. The grey patch became a cinema screen and upon it I projected a heartbreaking montage of all the things I’d miss; the faces of my family, knowing looks between friends, how wonderful the sky is, the Ochil hills, my Hornsea Pottery collection, escaped helium balloons on windy days. This private cinema show included a rather beautiful scene of driving myself and Kirsty through winding country lanes in a vintage covertible, complete with flapping headscarves, over-sized sunglasses and leather driving gloves. (In reality I own a 12 year old Nissan Micra with an excessively heavy clutch pedal and I can’t wear a headscarf without looking like I’m in drag.) This montage went on until tears tumbled one after another from my eyes onto the rough starched cotton of the hospital pillow case. It’s a funny thing, crying when you can’t see, not at all like crying in the dark. It’s like crying with a thousand eyes on you. Each night I mourned the loss of my sight in a similar vein, truly believing I’d never get it back.  

I can’t pinpoint exactly when my vision started improving. Everyone had become so focussed on the achievements I was making with my legs – impressive toe wiggling and ankle flexing – that I could secretly watch the grey patch get fuzzy at the edges and become transparent. Everyone around became the postman approaching the frosted front door. People had stopped asking about my eyes, probably because for weeks they’d had the same response, and I daren’t mention it for fear of reversing what felt like magic. Every morning I would cover each eye in turn, observe the subtle improvements and feel my worries ease. I was no longer enclosed in the confusing world of partial sight. I found vibrancy in colours, sharpness in lines, and comfort in familiar faces. I also discovered the faces of the nurses who had been caring for me for weeks.  

I write this now, 3 months after my attack of Neuromyelitis Optica. The remaining heat haze teases at the bottom of the page. I often still cover each eye in turn, right, then left. It’s a habit that’s hard to kick. Right, then left. I do it to assess the remaining damage. I also do it through fear. I don’t really know why, but I keep checking that heat haze. Right, then left.

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13 responses to “Eyes/The Grey Patch

  1. Reblogged this on kirstywirsty and commented:
    This is a blog from my talented Fiancee, I know a lot of you read about her being in hosital, this blog is about her experience

  2. very beautiful. i too had a bout with optic neuritis, lost the vision in one eye. mine came completely back within about a week, but, being a photographer, it was distressing. this post is beautifully written and seen. thanks for sharing.

    • Wow Stephen, I can only imagine your thought processes as a photographer throughout that week. For someone that experiences the world so visually it must have been, as you say, distressing. Although it ‘only’ lasted a week at the time you’re never sure it will return. Thanks for reading.

  3. Vision loss is a scary thing- whether temporary, partial, permanent. My focus shifted from being told it need not have ended up like this with proper early intervention to puzzling when being told that little truly effects the outcome. Seems none of it matters once it is there as permanent deterioration. Having two different issues that join in rattling my vision, I don’t dread. Doesn’t help or fix anything. I do try to find ways to compensate. I celebrate the better viewing times. I am thankful for all I have seen, all I still see- cloudy,fuzzy,shifting,darkening- it’s all better than darkness with no light. Meanwhile I learn to see what I am given to see. I hate the pressure when it won’t let go of the area behind my eyes. I hate the headaches. I hate the nausea when my shifting eyes make it feel like I am on a freak ride continually. I believe better days are coming when they aren’t with me. I hope for all the best for your sight. ENjoy it fully. I take pictures. SOme come out well…a lot belie the shaking of my hands – autoadjustment all the way (My clear- well as close to clear as I get is just not clear). You are doing a great job relaying the mountains given for you to climb.

  4. Gosh Helen, you lost sight in *both* eyes at the same time? My optic neuritis attack wiped out only one of my eyes (for a couple of months, after which the vision was restored). I wonder how common it is to get ON in both eyes at the same time, which sounds like what happened to you? How terrifying!!

    • Yep, ON in both eyes. I didn’t lose full sight though and it was only for a month and a bit that the vision in my left eye was really impaired. My right was never bad enough to cause any huge problems (perhaps that’s only because I was grateful I could actually see something!). Most consultants seemed surprised by the ‘bilateral ON’ so I’m guessing it’s pretty unusual. I should add that to my concise description of myself!

  5. Almost 6 weeks ago I woke up with complete vision loss in both eyes. I have been having other neurological issues as well including weakness and numbness in arms and legs. There is evidence of some atrophy in both optic nerved, but doctors here are in no hurry to diagnose. So frustrating, but your story is inspiring. Hope you continue to get better.

    • I’m so sorry you’re having such a hard time getting a diagnosis. It took three years from my initial symptoms to get diagnosed, but the paralysis and vision loss certainly hurried that along! Are you noticing any improvement in your vision. It really is a scary time, but don’t back down. Give the docs a hard time, keep a diary or list of symptoms and encourage family members to advocate for you too. It shouldn’t have to be so hard, but sometimes it is. Keep me updated with your journey. H.

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