Vanessa’s Story

Tuesday October 2nd 2012 was my daughter’s 5th birthday. As happy squeals and the sound of wrapping paper being shredded floated up the stairs, I sat on my bed alone, somewhat bewildered, as I repeatedly switched the bedside light on and off again. We all have unforgettable moments in our lives: the birth of a child, a wedding, the funeral of a loved one, but that day was one I am physically unable to forget as I am reminded of the ensuing events every time I open my eyes.

The year 2012 had been pretty good and the London Olympics had left everyone buoyant. I was a freelance TV producer working in London, juggling with two small children, a husband and a home. But one evening as I found myself yet again carrying my sleeping son out of the car, I decided enough was enough. I quit my job the next day. OK, so I probably had unrealistic utopian ideas about what a Summer with two spring-loaded children would be like, but we were outside digging in the garden, with most of the garden trudged back inside again, and I finally relaxed a little.

On the day my illness hit, the first thing I became aware of was waking up to – well, not really waking up. That may sound bizarre, but it’s how it felt. I knew I was conscious, but my mind felt slow and fuzzy, and I instantly knew something was wrong. As I peered around my bedroom I realised that even though the lights were on, all I could see was a murky brown gloom. It was like waking up on another planet where everything was somehow familiar, but at the same time ghostly and unreal.

We put on a front for the children, but my husband drove me to A&E as soon as possible. By now a huge dirty cloud had enveloped me entirely, and I felt my vision literally melting away like thawing snow. He had to leave me there so he could drop our children at their childcare, and I remember touching the backs of chairs to guide me towards the reception desk. As my fingers brushed the plastic I realised the tips were completely numb. A slow fear started to creep up my back, and I remember blurting to the receptionist, “You have to help me, I’m losing my sight!”.

It took a while for the NHS cogs to start turning, but I was deteriorating at such a rate that my husband took to wheeling me from test to test himself, as there was no time for porters now.
A day later he made the call my best friend will never forget: “It’s Ness. You have to come now.”

Time moved fast, yet also induced that heavy, slow-motion horror that an unfolding trauma creates. My unusual symptoms caused much head-scratching and I was fast-tracked up the hospital ‘food chain’, each department vying to hit the diagnostic jackpot.

My mother arrived and in her effortlessly efficient way created order.

I was now very ill and the numbness had spread for I could no longer feel my hands or feet at all. Finally, after 72 hours of ‘holding my breath’, the lights went out completely. It was a moment of utter stillness and absolute blackness. A hospital door hummed open, and a gust of cool air hit my face as I was wheeled outside. Smells of coffee and autumnal wetness wafted around me as I realised I was now completely and utterly blind.

In all, I spent sixteen days at St George’s hospital in a specialist neurological ward. I refused to let my children visit because even though I couldn’t see them myself, I knew my arms, bruised from blood draws, and my blank, staring eyes would frighten them. The doctors agreed I had suffered a catastrophic neurological episode, brought on by an autoimmune reaction so rare, none of them had heard of it.

The total blackout lasted a relatively short time and I woke one morning to experience an ethereal black and white shimmering world. It was no more than that: my brain had rebooted and my visual machinery was recalibrating, but this was not ‘vision’ as I had known it. It would take many weeks for any kind of recognisable, or even three-dimensional images to appear, and many more for colour to return.

Mindful brainwaves collected via EEG converted into moving art by video designers at The Guildhall School of Music & Drama in collaboration with Vanessa’s science-art exhibition with Dr Bekinschtein at Cambridge University.