Blog

How being uncomfortable is good for you.

As I pack my bags and leave Brooklyn, it is with a great deal of sadness. I was dreading this trip, yet now I'm at the end of it I realise I have had such a good time.

My day yesterday saw me walk 16,000 steps traversing the sleepy streets of South Brooklyn hunting out all of the independent bookstores nestled in amongst the literally thousands of dry cleaners and dog parlours there seem to be here.

There is a palpable quietness in Brooklyn, less noise and buzzing energy than in Manhattan. for that reason it has proven itself to be the perfect 'toe in the water' for me to test my independence.

So, to the practicalities of getting around with partial sight in a place I don't know. Well, it wasn't as hard as I thought it was going to be. Firstly, there are literally hundreds of Starbuck cafes with their free Wifi. I hovered (I think the American word is actually loitered) outside countless of these places stealing their free connections to locate myself on SatNav. In fact, the funny little blob on my phone's map moved as I walked regardless of Wifi, so mostly I knew where I was. Now, that got me to thinking. It has dawned on me over the last few days how much I don't navigate myself around anymore. My husband and I have divided roles – we always have had. I cook, sort the kids and the house – and he hunts. We are the typical hunter-gatherer family. I mean I work too – I've written a book ! but in really basic terms we do fit into these roles. When we travel he is the one with the maps, deftly navigating us around whatever foreign parts we're in. I'm the one who has packed water and snacks. But, this trip might have just has changed that.

Yesterday's adventure took me to 6 Brooklyn bookstores, with the sole intention of finding my book. I was kind of following this helpful article. My first stop was Books Are Magic on Smith Street. I have to admit, this wasn't very hard as it was around the corner from where I was staying! Its a lovely airy bookshop with wooden floors and a very welcoming atmosphere. Sadly, the young and trendy assistant told me they didn't stock my book, but she did give me Emma the owner's email (who I promptly wrote to !) I also noted there was a book launch on that night (serendipity no less).

Next stop was Greenlight bookstore which was a larger shop. The apologetic assistant there also told me they didn't stock my book, but when I asked for a cafe to work in recommended the place opposite. I sat down in this cafe, somewhat browbeaten, but also determined. In the space of two hours I managed to do a huge edit on the new book proposal I have been battling with recently. I also fired off emails to several Podcasters based in Brooklyn (having read another cool article here) – telling them I was here in town and available ! Hugely galvanised at my enormous productivity I set off again. It was around 29 degrees so I was pretty hot, but I kept to the shady parts of the street to avoid the worst of the heat. Navigating the enormous roads has been a particularly onerous challenge here. I have found myself waiting for others to start crossing first – not trusting I can see the little 'man' light – terrified I might have got it wrong. One time, I was scuttling across one particularly wide-spanning road when an enormous red truck came straight at me. I yelped, but then realised he had to stop for me. I made it to the other side sweating and somewhat panic stricken, but relieved I hadn't been squashed.

My next stop was Community bookshop on 7th Avenue. This was a dark and quite musty bookshop, with piles of new books blocking the shelves. It would have been impossible to mooch around here surreptitiously, so I found myself blurting out the 'I've just popped in to see if you have my book…' spiel. They didn't. By now I was feeling quite disheartened, particularly as this last assistant was clearly very busy and didn't really have time for an unknown author whose book they didn't stock. However, as I stood back outside, I knew Barnes and Noble was only down the road, and although not an independent, it definitely stocked my book !

On the way there a polite young man asked me to test out his iced teas, which was a refreshing break, and spurred me on. I arrived at Barnes and Noble to find a modern glass building with trendy chocolates and candles for sale alongside shelves of books. My book however, was nowhere to be found. Eventually giving in and looking it up on a wall-mounted screen I saw that the 'one' copy they had was downstairs under 'P' in biography. Heading downstairs (having to go up or down an escalator for a newly published author is death for sales) I finally found it, but it was spine-side out and totally hidden away. Muttering that my book was a memoir – not a biography I quickly left.

I nearly gave up then. It was 5pm, and whilst I'd had a productive writing day, this book promotion lark was not going well. I sighed and decided to brave a Subway ride back to Court Street. Popping out of the subway ten minutes later I felt emboldened that I had managed to navigate the myriad of subway lines by myself, and decided to visit the last Barnes and Noble bookstore on my list.IMG_3489As I walked towards the storefront I could see a large window with everyone else's books proudly displayed for all to see. Sighing I wandered past – just a tiny bit hopeful. However, as I have not found my book displayed in a single bookstore window to date, I wasn't hopeful. But, miracle upon miracle – there it was – shouting out like all the other books ! Utterly delighted I shrieked and whirled around hopeful to catch someone's – anyone's eye so I could tell them this amazing news. Of course, this was New York, so everyone just stared at the sidewalk. Rushing inside the delights didn't end there. My book was on the first table in the store – prize position ! What's more – there was a veritable collection of them ! Darting over to the manager – a brusque young man in a checked shirt, I explained I was the author and did he want me to sign the books? Shrugging he said sure thing. As his colleague collected up all of the books they had I babbled on excitedly. I think my enthusiasm must have spilled over for he began to thaw and even suggested he took a picture of me to share. Which of course I did.

IMG_4772

Later that evening my friend Sophie and I went to the book launch for Michael Turkell's book Acid Trip. It was an highly entertaining talk, and opened my eyes to the enormous history and complexities of vinegar making and what's more – the weird world of vinegar drinking. It was one of those topics I didn't know anything about, but I was so glad to find out about. I even managed to connect with the owner of Books are Magic, so we'll see if my book appears in her bookstore !

The final end to the day came in the form of three replies to my earlier emails. All of the podcasters were keen to discuss an interview…I couldn't really have asked for more.

I realised at the end of that day how many hurdles I had overcome; some more obvious than others. As I watched the manager in Barnes and Noble stick on 'signed by author' stickers I could see what an important lesson I had just learnt. Never, ever, ever give up.

Vanessa Potter published Patient H69: The Story of my Second Sight through Bloomsbury in July this year, which she's still in shock about. She's more in shock though about being nominated for an Inspiring Woman Award ! If you fancy voting for her online you can do so here.  Her Twitter page is here. 

PatientH69.com

 

 

Patient H69: The Story of My Second Sight

A beautiful and sensitive review ! Thank you

The VisionHelp Blog

Neuromyelitis Optica, or NMO, is a mystery disease.  Although the cause is unknown, its pathogenesis has progressively become clearer.  A florid autoimmune inflammatory cascade leads to rapid demyelination and axonal injury targeting the optic nerve and multiple segments of the spinal cord.  This is the calamity that rendered Vanessa Potter, patient H69, legally blind and partially paralyzed on short notice in the Fall of 2012.

We don’t learn until the second half of her new book that the pseudonym Patient H69, through which she blogged in 2013, derives simply from the first few digits of her NHS hospital number.  Nor do we discover until the end of the book that, as of 2017, Vanessa’s motor and visual abilities have returned to normal.  Or have they?  The bulk of this riveting book builds momentum toward self-discovery of the seemingly effortless process that we call vision, and what happens when its…

View original post 543 more words

Patient H69 is off to New York !

It’s a week away and I am making plans and booking interviews, getting ready to head off to the Big Apple to promote my book. However, this is more than just a trip to an exciting city, I am fully expecting it to be a baptism by fire. I have not travelled abroad alone since I lost my sight in 2012, and if I am honest, I am terrified.

Around a week or two ago I had a major wobble, and for around half a day considered cancelling my flight. I couldn’t – it’s non-refundable. But, when I calmed down I decided I needed to do one simple thing – reframe this whole thing. Rather than seeing myself as Vanessa, the producer, the doer – someone not normally fazed by anything in life. I had to be someone new. I could still be confident, but I had to admit I was fazed – I was more than fazed, I was scared.

So, my new perspective is that I intend to make life simple for myself. This trip will be gentle, and on my terms. I plan to avoid the hustle and noise of Manhattan and wander the leafy suburbs of Brooklyn, where I am staying with an old friend. What’s more – I suddenly realised I didn’t need to fill my time with sweating and negotiating the crowds as a tourist – I have been a tourist in New York before. This time I plan to hang out in local delis, drink chai lattes and wander around Brooklyn bookstores – and write. I plan to catch up with old friends and relax.

So, it turns out that I needed that wobble, and that re-framing this trip is the best thing I have ever done. I now believe this adventure is not scary at all – in fact it’s an opportunity to spend some time with myself…and that is more than just fine. It’s marvellous.

The Washing Post published a lovely review last week, hopefully there will be a few more to come 🙂

 

Avoiding a shrink-wrapped world

I was thinking this week of the last time I did something daring. I mean, really daring and challenging…something that made me uncomfortable.

When I lost my sight in 2012 one of my initial reactions was a bloody-minded outburst of, ‘if this is taking something away from me, it is giving me something back!’ It was on that tidal wave of defiance that in 2013 I booked myself onto an adult swimming course. I have always swum, but after a minor sailing incident in my teens I was left panic-stricken at the prospect of even dipping a toe into open water. I became adept at getting out of any water-based activities, even splashing in shallow coves was diverted with  pleas of ‘contact lenses’, or ‘it’s too cold’. I never said it out loud, but the truth was I was terrified. It was only when my young son pleaded with me to play with him in the pool one summer, that I thought it was time to sort this out.

My first swimming lesson saw me sobbing uncontrollably into the water, horrified at the emotional outpouring I was inflicting upon my teacher. Calmly explaining that I was clearly phobic, she started by just splashing water onto my face (which was only just bearable). Week two saw me dipping one side of my face into the water. Then, by week three I managed to dip my whole face in the pool without screaming blue murder. It doesn’t sound much, but was a monumental moment. Once I could hold my face down in the water and override the panic swarming inside my mind, I knew the rest would come. And, it did. After eight weeks I was focused on technique, and trying out different breathing practises. I could already swim, so all I had done was learn how to do front crawl, but in truth I had learnt to overcome a fear that had trailed behind me for most of my adult life.

Four years on, I find myself looking inwards again, and asking myself what other small, but penetrating fears are holding me back? It’s easy to become institutionalised by your own life – your own routines. Even the choices we have made for our children seem terrifyingly safe and – well – small. That is the word I fear the most. I fear I will let the invisible disability that I quietly live with reduce my world. I’m constantly on the lookout for signs it might be reframing my expectations, and somehow shrink-wrapping my mind. I need to identify if I’ve made decisions based upon what I can or cannot see, rather than what I can or cannot do. I don’t want to forget how to be brave.

I don’t need to learn how to do front crawl anymore – I can hold my own in the swimming pool now. But, I do need to allow my other less dominant senses to come to the fore and be heard. I often explain to others that I use the vision I have in the most optimal way, but perhaps I need to do exactly the opposite. It’s all too easy to rely upon and indeed, focus too much on vision. We absorb so much of the world through different channels, and I know this perhaps better than most. I realise now, my fear isn’t so much about what I am doing, it’s what I might be missing…Perhaps it’s time to come to my senses in the truest meaning – and allow myself to see the world in different ways.

Rebecca Crane’s review of Patient H69

Rebecca Crane, PhD, MA, PFHEA, DipCot directs the Centre for Mindfulness Research and Practice at Bangor University and has played a leading role in its development since it was founded in 2001.

Here she reviews my book Patient H69.

Vanessa Potter’s book Patient H69 is powerful and compelling. I was transported into the detail of her journey through the experience of a dramatic neurological breakdown which took her sight, and significant levels of motor and sensory functioning. The particularly potent aspect of the account is the nuanced recounting of her inner journey.

Prior to this medical emergency Vanessa had trained as a meditator and so had the capacity to both track her inner experience and to work responsively with the intensity of emerging sensations and fear responses. This view into the interiority of the process is intimate and revealing. The account offers a detailed sense of the myriad of micro-moments of this specific experience. In doing this it also offers a broader sense of how each of us has the capacities to draw on our inner resources for healing and transformation moment by moment.

The second part of the book lifts the exploration up to a broader perspective by linking it to an understanding of the scientific and psychoneurological understandings which underpin the process that Vanessa underwent. I had the sense of Vanessa continuing her journey by putting the experience into a wider context of understanding, and once again in doing this offering a model for how we can all work skilfully with both our present moment experience and the vulnerabilities we carry with us.

A wonderful read – it will stay with you long after you put it down.

Rebecca Crane PhD, Director, Centre for Mindfulness Research and Practice, Bangor University. 

Patient H69: The Story of my Second Sight by Vanessa Potter, published by Bloomsbury. 

Second Sight: How I saw Judy Finnegan’s face when I was blind.

It was officially a bad night. I haven’t rested well, which leaves me worried that it might not be a grain-of-sand day today. But, doing a mental body scan I quickly assess that my fingertips aren’t quite as numb this morning. That’s okay, one step at a time, I tell myself. Because of this improved sensitivity I can actually leaf through the magazines I can hear rustling on my bed when I move my feet. Of course, this will just be a habitual act, a normal everyday activity that has opened back up to me this morning. I have no expectation that I will be able to actually see anything. I just want to pick one up and feel the shiny texture of paper between my fingers. I want to do something normal. Idly reaching for the top magazine, I find myself staring dumbstruck at the cover. Pulling it closer still I discover myself nose to nose with a grey, blurry face. The fact that I can identify this muddy, swirling image as a face is amazing! Squinting hard I realise that I know who it is. Incredulously, I stare into the ghostly eyes of Judy Finnegan. I never thought seeing the face of a breakfast-time TV presenter could give me such joy, but this is the outside world creeping back into my life, and Judy Finnegan has just landed on my crazy planet.

Mum and I rifle through the various discarded papers, testing what I can and can’t see. Adverts and broadsheet headlines with bold, dark text miraculously drift in front of my eyes. I proudly and deliberately read out several sensationalist headlines, the paper held so close to my face that it muffles my voice. We work out that the higher the contrast the more detail I have. I don’t see any colour yet, but can distinguish some vague tonal differences. My fingertips are definitely becoming suppler as the morning progresses. They now feel less bulbous and cumbersome, and I flex my hands into fists, smiling inside. I can’t wait for the next visitor to arrive so I can tell them; I think it’s fair to say, this is officially a grain-of-sand day.

It doesn’t take long for my door to be smartly swung open, and my nose automatically wrinkles as a wall of cologne billows across the room. My new visitor tells me where he has just flown in from, before he tells me his name. With a sinking feeling I can tell this isn’t going to go well. ‘Cologne Man’ requests that I follow him down the full length of the corridor to where there is apparently an eye chart hanging on the wall. Propping open the door, he sets off at a brisk march, tap-tapping ahead of me, and I hear his shoes slide to an impatient halt at the end. The Italian leather soles tell me he’s at least a registrar, perhaps even a consultant. Hand gripping my stick, I clench my teeth and slowly force my numb legs to move in something that resembles a walk. It takes me five long minutes to reach the eye chart, during which time I can hear the impatient swishing of his shoes on the floor. By the time Mum and I arrive I am exhausted and dizzy, but also determined to read his eye chart.

Leaning on my stick and fumbling in my dressing-gown pocket, I try to find my glasses. ‘Don’t bother with those,’ he snaps. My hand freezes in mid-air, but I slowly lower it. ‘Can you read the middle line?’ he demands, causing me to stare in disbelief at Mum. ‘Have a go at the top,’ her voice whispers, as she touches my arm. Squaring on to the wall I fumble again for my glasses and put them on, and stare at where I think the elusive chart must be. I stare so hard I can feel my brain ache. There is a suffocating anxiety twisting itself around my head as my mute concentration turns to frustration. As I start to take a step closer ‘Cologne Man’ shoots his arm out, ‘No, you need to be that distance away!’ ‘What?’ I can hear my mum finally find her voice. ‘She was blind a week ago and you expect her to read an eye chart? Does it really matter where she stands?’ ‘Cologne Man’ relents, but even when I am allowed to touch the thin cardboard, no shapes appear through the mist. ‘Cologne Man’ lets out a frustrated breath, and I sense him finger the ID chain around his neck. Turning my head, I seek out the space where I know his eyes must be and whisper fiercely, ‘I can see. I saw Judy Finnegan this morning. I just can’t see your stupid chart.’ He is obviously taken aback, and I have to admit I am quietly delighted. ‘Yes, young man. I think it’s about time you lot started thinking a little more laterally!’ Mum blurts out, emboldened by the man’s obvious confusion.

The moment passes and, somewhat browbeaten, ‘Cologne Man’, to his credit, apologises and suggests we start over again. He leaves my room half an hour later scratching his head and smiling at our jokes about how he might clinically record my sight, given that Judy Finnegan’s face doesn’t feature on the Snellen eye chart. It is a grain-of-sand day…

Excerpt from Patient H69: The Story of my Second Sight by Vanessa Potter which tells the mind-boggling story of my lost and regained sight. Available through Bloomsbury. 

http://www.Patienth69.com

Patient H69 published today!

‘You could have a great barbie out there,’ my brother yawns as he pulls up the window blind, letting the early-morning sunshine stream in. He stretches noisily and I hear comic squelches as he attempts to extricate his sleep-crumpled body from the marshmallow chair. His fidgeting last night suggested a restless sleep, but I am still hovering in between consciousness and ‘train-crash sleep’ myself, so I gently bat away his random chatter.

Mentally scanning my body, my feet still feel painfully cold, but there’s also a tightness that makes me wonder if someone has wrapped them up in Gaffer tape too. I shrug off this ridiculous notion; my brain is still playing tricks on me. I sense Dan shuffle over to my bedside, his silhouette ruffled and disheveled with crooked edges. His movement gently wafts sleepy smells over me and, still groggy, I reach out and touch his rumpled pajama bottoms. Since my sight spluttered back into life yesterday, I am being pulled towards those patterns and shapes that float around me. ‘Are those mine? ’ I ask him, but Dan doesn’t answer as he’s already lumbering off in search of the nurse’s desk, no doubt in boyish hope of a morning coffee. He returns moments later. ‘They laughed at me,’ he sulks. ‘Hardly surprising if you will insist on wearing my pink pajamas,’ I snigger.                                        ‘It was all I could find,’ he shrugs, his voice sheepish. I know this is very likely to be true, as my brother has a limited interest in clothing – other things are more important to him.     As I start to shift in the bed I feel incredibly stiff. This is becoming a common occurrence upon waking up. Dan hovers protectively when I start to slide off the bed, worried that I might crumple to the floor. I know I am being bloody-minded, but I still refuse any help. My right foot is dragging on the floor as I shuffle along, but this morning I don’t care.            Dad arrives early to take over from Dan, and I am left to my own toilette this morning. My father lives in South Africa normally, and only spends summers in Britain. After three months here he is due to fly home very soon. My illness, unexpected for all of us, is causing him some distress as he would rather stay on and help.                                                        Lying on my bed having only dared a cursory wash in the sink, I am worn out again. Slowly negotiating myself into the bathroom, even with my newly acquired stick took a huge effort. Pushing myself back up onto my elbows I ask Dad what he can see out of the window. Sighing and shutting his laptop lid, he walks over and looks out, ‘Well, it’s a bit strange, actually. There’s this huge balcony with railings all around it, and buildings in the distance.’ ‘Ahh,’ I smile to the ceiling. ‘Perfect for a barbeque, then.’                                                              I can’t see Dad’s face, but I can sense his puzzlement.

It wasn’t until I regained some of my sight and could see a photograph of the marshmallow chair that had been dragged into my room at St George’s hospital, that I could smile and understand its comical nickname. Akin to a 1980’s reclining airline seat, its softly padded seat did indeed resemble pink marshmallow. Devoid of sight, I listened to my family manoeuvring themselves (in varying levels of dexterity) in and out of that chair for the two weeks I was there.

It took 3 days for me to go blind completely, and to lose the use of my hands and feet due to a sudden and rare neurological illness. But, it would take over a year for my sight and movement to return. It did return – but not in the way any of us might have expected – and my visual odyssey – for that is what it was – started me on a journey of discovery I could never have expected.

IMG_3374

 

Enter PATIENT at the checkout on Bloomsbury.com to receive 30% off Patient H69: The Story of my Second Sight by Vanessa Potter.

 

Books that light fires

I am well aware of the deep irony that as I am about to publish my first book, until very recently my children considered books a necessary evil to get mum or their teacher off their backs. I have battled with this, not wanting to put them off, but knowing they needed to break through that barrier of basic comprehension to start hearing the stories for themselves inside their heads. I felt they both had a disconnect with the stories they heard outwardly, and were missing that inner connection.

You want to instil a love of literature into your children, yet they don’t want to read. It’s a problem I know I share with many other parents. In our house we have resorted to bribery, reasoning and outright bullying at times to get our children to painstakingly read a few lines at bedtime. Mostly we read to them, but as my husband steadily made his way through the pile of Harry Potter tomes, I knew we needed to crack this.

The first breakthrough came with our daughter, now nine years old. After repeatedly dodging how many books she had read, and her aversion to reading being so  profound we actually found ourselves in outpatients at Croydon Hospital seeing an eye specialist. There was nothing wrong with her eyes though – it was all in her head. Then one day her teacher read a David Walliams book to them in class. She came home jabbering away about the hilarious characters, and like wildfire I ordered The Midnight Gang on Amazon Prime. She devoured it with glee and that fire, that passion for reading was lit. She reads to me every night now, and we have  a little book where she writes down words she doesn’t know. Raj even made it into one of my dreams the other night too.

As for her brother, at nearly seven we were less concerned. However he got his own launchpad last week during World Book Day. Author Josh Lacey came into his school and read from The Dragonsitter. A day later my arm was being yanked as we passed our local bookstore, and my son dragged me in to ask for the next two books in the series. I think seeing the author in person, hearing how and why his stories came to life was the connection my son needed. Plus the stories are about dragons – so what’s not to like?

Everyone tells you ‘it’ll come’, ‘they’ll get there..’ but it’s hard not to worry a little. I read everything I could get my hands by torchlight under my duvet for most of my childhood, and I am well aware it was my advanced reading and knowledge of literature that got me into secondary school. I’m just glad the fires are lit and all we need to do now is keep stoking them.

The big question is – what comes after Raj and the Dragon?

Mindful of being mindful…

I shouldn’t have been surprised but I still was. The irony that I was giving a talk on the physiological influence of one’s mind upon the body was uncomfortably present. I couldn’t stop the nerves, the jitters, the fear of standing on a stage in front of 700 people.

Yet, the meditation, breathing and mind tools I employed in the weeks leading up to my talk were all essential preparation. It’s common to rehearse what you’re going to say, where you might stand, and even what you might wear – yet it’s easy to forget to consider how we might feel.

Whilst I did spend hours preparing my talk, I also spent hours preparing my mind, and even though I know this stuff, even though I write and talk about this subject I am still humbled by the fact it works.

I shouldn’t be, but I am continually blown away by the power of my own mind.

A brain called TED…

What can I say – it’s all over now, and I have no idea what I will talk about every evening now.

Thanks for having me TEDxGhent, it was fun 😉

#BitsofLove #SecondSight

IMG_1514