It took just 72 hours for me to lose my sight entirely, and for my hands and feet to feel like they were encased in ice. Just before my blindness hit, I had been laid up with an unknown virus that had left me suffering severe headaches and sweats. My body’s immune system had gone haywire, responding to the virus by attacking my own nerves, causing my loss of sight and mobility – you could say I had been struck down by biological friendly fire.

Going blind was devastating. I hadn’t just lost my primary sense – I had lost my livelihood too. As a television producer, my vision was my job, so I was desperate to see again. After a few weeks, I regained some movement and normal sensation in my legs and feet, but my vision was another matter entirely.

The morning my sight finally started to return, I opened my eyes to a strange, supernatural view. At first I could only make out subtle light shifts, everything was just a swirling grey fog with no perceptible shapes. I was momentarily elated that the world was no longer a suffocating black cloak wrapped around my head – but I realised quickly that I did not recognise anything around me. Over time, black lines started to appear, crudely constructing my visual landscape. These lines delineated windows and doorframes, but little else. Slowly the grey mist dissolved into a brown muddy haze that obscured anything more than a few feet away. Colour eluded me, and my family, padding softly around me at home, were hollow ghosts, skeletal figures with no solidity or humanness. Nothing looked like it should, and my children’s faces hovered agonisingly somewhere behind an opaque screen. I often had no idea where I was, and much of the time my heart was beating wildly in my chest. I wondered over and over if I would ever feel normal again.

© Paul Rousteau at Kiosk

As I recovered at home, colour started slowly creeping back into my life, whispering around corners. This was a very perplexing time, for often I only felt I was seeing a colour but was unable to identify it. I would stare endlessly at trees and lamp-posts, desperate to match the colour I believed was there with the strange sensory experience I was having. Bright primary colours were the first I could identify with any conviction. Red led the way, followed by blues and yellows – but cloudy and faded. I struggled enormously with greens, greys and any pale or muted colours. This was not the vibrant rainbow world I was used to.

Even though my visual world was still predominantly black and white, it felt like colours were talking to me – not literally, but as if my senses were communicating in ways I didn’t understand. Attempting to explain my new relationship with colour only provoked confused silences around me. It made no sense to my family, as they all had fully functioning sensory systems. And when I described it to the neurologists treating me, I was told that nobody knew what was causing this visual disturbance, but that perhaps my sensory system had become cross-wired.

I still had some channels of information transmitting the colours around me to my brain, but I was receiving only part of the message. My lifelong emotional associations with colours were still intact, even if my sight was not. I tried to use language to help myself recover. “You are green,” I would tell the grass. I believed the more I stimulated my brain by observing the world around me and reminding myself what colour was, the more the damaged circuitry in my brain would reconnect and bring my normal vision back online. I found the more I did this, the more it worked.

© Paul Rousteau at Kiosk

I began documenting my recovery daily and started using an audio recorder. I also experimented further with using language, when looking at an object whose colour I didn’t know. First of all I would stare hard and guess what colour I felt it might be. Then, if I was wrong, my husband Ed would tell me the correct colour. If I looked back at the object again and repeated that colour out loud myself, I would often temporarily see it, albeit muted. On one occasion I was able to see a row of different-coloured cable ties holding a gate together by repeating the colours Ed told me were there. Without hearing each colour expressed verbally, I had been unable to see them at all.

It was in this way that my home and neighbourhood became my own personal vision laboratory. My experiences were so outlandish that there were times when I couldn’t believe my eyes. Yet my eyes were undamaged – all of these strange occurrences were happening inside my brain.

My doctors told me I had experienced a rare form of monophasic neuromyelitis optica spectrum disorder, a condition that’s estimated to affect just one in 100,000 people in Europe. One of my primary symptoms had been optic neuritis, inflammation of the optic nerves, which caused my blindness. This inflammation was down to my immune system’s attack on its own body, and similarly led to sensory loss in my hands and feet. It also eventually led to my unusual and curious form of what I now know as synaesthesia – and to my desire to find out more about this condition.