I am methodically gathering visual information from those around me – building a mental picture of what I look like. I’m told my pupils are hugely and disturbingly dilated, the blue irises overtaken by black, unseeing orbs. I imagine that I resemble an owl, or with my increasingly unkempt hair, a zombie from a bad B-movie. I demand Ed takes a photo of me, just so that there is one. Either way, I know I don’t look like the person I was five days ago; I am becoming unrecognisable.
Something deep within me knows that I need to record all of this horror. I need to somehow hold onto all these rollercoaster feelings because I know that one day I will need to process them quietly, when this ride finally comes to a stop. I ask Ed to jot down some events and names in a notebook, and I hear his legs cross and uncross in frustration. It’s a strange request as far as he’s concerned, and not the thing to be focusing on right now. But, while he’s probably right, the narrator in me is determined to hold onto this supernatural world.
I’m not quite sure why this is, but even I can hear the insistence in my voice.
That narrator got her way. Jotted notes on scraps of paper eventually turned into the purchase of an Mp3 recorder that accompanied me everywhere I went. Sitting in dark corners of my house I whispered the horror – the terrifying story of how one day, I woke up blind.
That was in 2012. Back then I was a broadcast producer making all those TV ads that most people fast-forward through. I had been married to Ed for six years and we lived in Crystal Palace with our two small children. My life was frenetic. Like many women who’d hit forty, I was juggling full-time work, babies and the drudgery of running a household. It was because of this that I decided to take the summer off, and spend it with the children, chasing my toddler son through the park as he squealed in delight.
It was on my daughter’s fifth birthday in October of that year that everything changed. I had spent the day before at A&E as I had woken up very dizzy, and with pain behind my eyes. I had been ill the week before – a really nasty flu bug that had knocked me out, but I had thought I was better. From my first step inside Croydon University Hospital it took just 72 hours for me to lose my sight completely. To compound matters, a creeping numbness was also taking over my limbs, so by the time I could see nothing at all – I could also feel nothing at all.
My home-life went into free-fall, no-one knew what was wrong with me, or what my changes of survival were. Within hours various family members had moved into our house, taking up the reins to my life – my children. Ed drove back and forth to the hospital, staying as long as he could with me, before heading back home to the kids.
There was a constant stream of friends tag-teaming with Ed in a of river of kindness, as soft hands interchangeably squeezed mine. After a while the NHS cogs clicked into gear, and I was transferred to a specialist neurological ward at St George’s Hospital. We broke every rule there; visiting hours didn’t exist for me, and I was not left alone for one minute in the entire two weeks I was there.
Coming home, with my vision slowly starting to return was eerie. I was still legally blind, but I could make out the contours of my house, and memory filled in the dusty corners of our living room, reminding me what furniture was there, what paintings should be on the wall. I only saw erratic black and white lines, with no recognisable forms or shapes.
Worst of all – faces were impossible to make out, and I yearned to see my children’s cheeky smiles. It took months for my sight to return to what it is today – which is not perfect. My feet and hands started to recover too, and I spent months hobbling with a walking stick reminding my brain what walking was. I had to remind my brain what seeing was too, and this is where a deep curiosity started to replace the fear of my rollercoaster ride.
I wanted to know why I only saw lines, why I didn’t see any colour for months on end, and then when it did start to reappear – did it spit and sparkle like a lit firework? Questions buzzed around my mind as I tried to fathom just what had happened to me. In truth, no-one really knew – suffice to say I suffered a catastrophic autoimmune neurological episode, and a rare one at that.
As I recovered, my curiosity didn’t ebb away – it grew. It took me on a learning journey I had never expected, eventually leading me to the doors of Cambridge University where I persuaded neuroscientists there to help me unravel the science of my sight. They helped me understand the complexities of my visual system, and how my narrator instinct and all of my constant recording of information most likely aided my recovery.
Losing my sight has meant I have learnt to perceive my visual world in new, more creative ways. I now recognise how coping mechanisms, such as meditation and self-hypnosis that I didn’t really appreciate I had, came to the fore and saved me.
When I started recording my journey on those scraps of paper I never thought they would end up as a book – or that my adventures into science would lead to me being invited to give a TEDx talk – but they did.
But most of all, I have learnt about the incredible power of the mind, and of how we choose our own responses to life. I was lucky – I had a core of incredible people looking after me, and that gave me the confidence to pursue this journey. In the end, I choose to investigate and educate myself on the science of my vision, and in turn it has opened my eyes.
Enter PATIENT at the checkout on Bloomsbury.com to receive 30% off Patient H69 by Vanessa Potter.
About Patient H69
We see with our eyes… right?
Well, not exactly.
In 2012, over the course of 72 hours, Vanessa Potter dramatically lost her sight.
Going blind led Vanessa to turn science sleuth and reinvent herself as Patient H69. As she slowly recovered she began to reveal the reality behind her unique experience.
Opening her eyes onto an unrecognisable black-and-white world with mutating shapes and colours that crackled and fizzed, Vanessa’s recovery turned into a mission to unearth the incredible science behind how and why we perceive the world as we do. Thanks to cutting-edge research she was able to recreate her bizarre and otherworldly visual landscape as a series of remarkable digital images. In this book, we follow the story of Patient H69 as, with the help of neuroscientists from the University of Cambridge, she learns the science of herself, making discoveries that will go on to change the direction of her life.
Vanessa’s account is raw and candid, taking us through the trauma of her sudden sight loss and the impact it had upon both herself and her family. It shows how this remarkable woman opened doors by transforming her terrifying experiences into a scientifically fascinating endeavour.
Up until 2012 Vanessa had spent 16 years as an award winning broadcast producer working within the London advertising industry. Then, in October of that year fate conspired to turn the lights out on her.
Vanessa has always had a creative streak, cutting her teeth as a picture researcher then art buyer before she made the leap into film. Vanessa had just chosen to focus on her TV training and coaching business when fate intervened, and overnight she found herself blind and unable to walk.
Vanessa’s response to her illness was that of a producer, documenting the entire journey via an Mp3 player. Her curiosity and quest for answers led her to neuroscientists at Cambridge University persuading them to help her research her incredible visual rebirth. Fast forward to 2016 when Vanessa was invited to tell her story at a TEDx conference in Ghent. This was quickly followed by her first book – Patient H69: The Story of my Second Sight being published by Bloomsbury in May 2017.
Follow her on Twitter @Patienth69
Find out more about her on her website www.patienth69.com
Category: On Writing