Patient H69: The Story of my Second Sight is the true tale of how one morning I woke up to find myself blind and paralysed. A terrifying and unique story, I describe the events in a diary-like style offering you the reality of what it is like to suddenly lose two of your major senses.
I was a TV producer and mum to two small children at the time, juggling a busy home and work life. My illness hit my family like a high-speed train, but as I started to recover my sight my curiosity to comprehend what had happened to me was to take me on an incredible journey. Adopting the pseudonym Patient H69, by adapting the first letters of my NHS number I transformed myself into a science sleuth on a mission to uncover the inner mechanics of my own brain, so I could somehow understand the rare and mysterious neurological episode I had just suffered.
I knew I was now on a path I could not turn back from
Turning the lens upon myself I tell you the miraculous visual rebirth I experienced, and the mind-boggling visual anomalies I saw. Opening my eyes on to a watery two-dimensional landscape, I experienced an unrecognisable flat monochromatic world where I could see no faces or detail. The world was made up of erratic jiggling lines, which made no sense. I had also lost sensation in my hands and feet so could not walk. My feet felt like they were encased in lumps of ice, and my hands had been wrapped up in clingfilm.
Struggling to come to terms with my situation, my family brought different textured items into the hospital to try to stimulate, and in turn reignite my sensory system. Hairbrushes, pan scourers and cotton wool were rubbed up and down my feet and hands to try to make my brain reconnect and identify the sensations.
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When, after two weeks in hospital I made it home, I spent my days hobbling around the local streets with the many kind friends who visited me. I would test my vision – endlessly counting how many more cars I could make out as I looked down the same road every day. Then one day around three months into my recovery as I turned a corner, colour, which had up until that point been painfully slow in returning, exploded back into my life.
Imagine a lit sparkler; light dancing all around, distorting the shape, glints and flashes shimmering, emitting 1000 tiny particles of hot blue metal. That was how my bin cheekily called out to me as I tried to walk past.
It was at that moment when I turned to my husband Ed, who had been walking alongside me, speechless at what had just happened. I knew I was now on a path I could not turn back from. I made it my mission to research all of these bizarre experiences, and in time I was to find out that my jaw-dropping blue visions were, in fact, a rare form of acquired synaesthesia. All in all, I was to learn some incredible facts about my sensory system.
I was to find out that my jaw-dropping blue visions were, in fact, a rare form of acquired synaesthesia
But, before I could embark on a scientific learning journey, I first had to learn the basics of vision science. Initially supported by the specialist clinicians who treated me, I started to discover the hidden innermost function of the brain, and our complex visual system. The condition I was eventually diagnosed with is NMOSD (neuromyelitis optica spectrum disorder), which is a rare autoimmune neurological condition that affects the nerves in the body.
Digging further and working with neuroscientists and vision scientists at Cambridge University, we discovered my own case study offered an important, and previously inaccessible window into the process of early visual development in human beings. We didn’t just explore my visual system but also the meditation and self-hypnosis tools I employed to survive this ordeal. During my time in hospital and at home recovering I used visualisation techniques to cope with the overwhelming feelings of fear. I found this so helpful that I wanted to share these experiences.
Working with Dr Tristan Bekinschtein, a neuroscientist researching consciousness at Cambridge University,
I designed an interactive installation that launched at the Cambridge Science Festival in 2015.
This immersive experience allowed members of the public to see and hear their own mindful brainwaves instantly translated into 3D graphics and music. It was the enormous success of that project that led to me being invited to give a TEDx talk in Ghent a year later in 2016.
These days I have transitioned into ‘a new normal’ – a new life. I have residual visual impairments, but I have many tactics I use to overcome them. I am intensely grateful for the sight and mobility I got back, and for the understanding I now have of my own brain and visual system.
Vanessa Potter’s Patient H69: The Story of Second Sight (Bloomsbury Sigma, £16.99) is out now in hardback