NMOtion™ Blog

Discussing NMO Research and Advocacy

Patient H69

It’s 16th October 2012, and the going home chant is dominating conversations, but there are a few more tests that I have to pass before I am allowed out of St George’s hospital in Tooting, London. I find myself being heaved into the wheelchair that I’m told has had my name on a placard on the back of it for the last two weeks, and guided to what is described as a makeshift kitchen. From the little I can see this area appears to have been hastily constructed at one side of a room. The Occupational therapist holding my arm tells me it is necessary that I show them that I can make a cup of tea. At hearing this I feel hysterical giggles start to bubble up, how incredibly British this all is. It is so typical of this country to make newly-blinded patients make a cup of tea. Do Italian patients get to make a cappuccino?

My humour is soon dispersed, as I understand quite how hard this task will prove to be. Hoisted out of my wheelchair and holding onto the worn formica, I am instructed to identify where the cups, kettle and teabags are. Sliding my feet up and down the floor, my toes touching the plinth, I try to get my bearings. I can see nothing in front of me; the grey, swirling mist has swallowed up everything. Already breathing heavily, I tell myself that as long as I hold on, I will be okay. Fumbling along, my rubber fingers feeling the way, I touch a handle and slowly drag a ceramic mug towards me. Cylindrical shapes loom somewhere out in front, and I lunge in their direction. I hear the sound of tins rolling as I sway back, dizziness engulfing me. I feel as if I am on a ship in a stormy sea, but warm fingers touch my elbow and reassuring words brush my ear. My cappuccino joke feels a long time ago now.

It was possibly one of the hardest things I have ever done, physically and emotionally. However, I eventually produced a cup of milky, unappealing tea – and began to realise that there were many more hurdles I had yet to leap.

I was diagnosed with NMO after what the doctor’s called a catastrophic neurological episode in 2012 left me blind in both eyes, and with sensory loss in my hands and feet (due to transverse myelitis). At the worst I could see nothing at all, and could not walk or feed myself – I was terrified. In time I did recover, but whilst all of my physical ability returned I am left partially sighted. I was lucky, I had fantastic care courtesy of the British NHS (The National Health Service) but even still the neurologists scratched their heads, as my tests revealed nothing they had seen before. It took two weeks before a diagnosis of NMO was given, but as they explained, I was not a classic case. In honesty I didn’t want to know more back then, I wanted to get better.

Over the next year a deep curiosity started to emerge. As my visual world slowly came back online, I experienced such an array of peculiar and at times mind-boggling visual phenomena that I started asking questions. When the colour blue started to ‘spit and fizz’ like a lit sparkler I knew I had to find out the science. For months I only saw a wispy monochromatic world, with no faces, shapes or detail, yet when colour started to creep back into my life it fed my curiosity. The desire to understand what had happened to me drove me to research vision science, and autoimmunity. I was not a scientist, so I had to learn the lingo before I could even engage with scientists. In 2014 I persuaded neuroscientists at Cambridge University to help me, and together we uncovered the science of my sight.

Vanessa Potter giving a TEDx talk titled “The Art of Your Mind”.

From a tragic start, the last five years have been an incredible, and at times humbling journey culminating in a TEDx talk I gave in Ghent, Belgium and a book (Patient H69: The Story of my Second Sight) that publishes worldwide through Bloomsbury this summer. I lost my sight from NMO, but the experience has opened my eyes in so many other ways.


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