Good Life Project - Vanessa Potter: She Woke Up Seeing and Went to Bed Blind.

Episode Date: September 25, 2017

In just 72-hours, Vanessa Potter went from sighted to blind, and able-bodied to paralyzed. Nothing would ever be the same.This is the story of brain gone haywire that led to a life transformed.Guest: A married mother of two young kids, Potter spent 16 years as an award-winning broadcast producer in London. Then, in October 2012 fate conspired to turn the lights out on her, and overnight she found herself blind and unable to walk.Vanessa’s response, was anything but usual. She began to document the entire journey on audio. Her curiosity and quest for answers led her to Cambridge University persuading neuroscientists to help her research what was happening in her brain, This led to a powerful collaboration on a brainwave-imaging project that invited members of the public to see and hear their own brainwaves translated into music and art.Potter was invited to give a TEDx talk and recently shared more of her story in her first, Patient H69: The Story of my Second Sight. In today's Good Life Project podcast, we talk about what led to that fateful day, what actually happened in her body and brain, the incredibly unusual way she learned to cope and then thrive with a new reality, and how she is today.Rockstar Sponsors: Audible has the best audiobook performances, the largest library, and the most exclusive content. Learn more, start your 30-day trial and get your first Audible book free, go to Audible.com/goodlife.RXBAR Kids is a snack bar made with high-quality, real ingredients designed specifically for kids. It contains 7 grams of protein and has zero added sugar and no gluten, soy or dairy. Find at Target stores OR for 25% off your first order, visit RXBAR.com/goodlife.Are you hiring? Do you know where to post your job to find the best candidates? Unlike other job sites, ZipRecruiter doesn’t depend on candidates finding you; it finds them. And right now, GLP listeners can post jobs on ZipRecruiter for FREE, That’s right. FREE! Just go to ZipRecruiter.com/good. Hosted on Acast. See acast.com/privacy for more information.

I'd started off in the morning with a little bit of numbness, like my fingertips were just really cold. And suddenly I moved and I realised my whole hand, all my fingers had gone numb. And things progressed pretty quickly from then. It's just a big blur that actually just got darker and darker. From the very first day I went to hospital, it was 72 hours before I was completely and utterly blind. And that paralysis kept on going. It went all the way up my fingers, up my arms, and all the way up my legs. And it left me paralyzed, unable to feel or use my hands. So I was helpless like a baby.

I couldn't see and I couldn't feel the world. Imagine waking up one day and feeling like you were wearing sunglasses, but you weren't wearing sunglasses. And then within 72 hours, your vision being gone. That is what happened to today's guest, Vanessa Potter. It's a bit of a horrifying, scary story that's been documented in her book, Patient H69. And it's a story that is powerful, gets us in touch with the uncertainty in our lives, and also really visits how we respond to big, challenging, traumatic things that we don't and can't see coming in our lives and the difference between circumstance, choice, and what we do with what happens to us. I'm Jonathan Fields.

This is Good Life Project. The Apple Watch Series X is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes.

The Apple Watch Series X. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone Xs are later required. Charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th.

Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're going to die. Don't shoot him, we need him. Y'all need a pilot. Flight risk. It's good to be hanging out with you today, actually. First heard about your story. I was floored, as I'm sure you hear many times. So I kind of want to just dive right in with you. While we're sitting here today, you're looking at me and we'll go into why that's interesting through the conversation. But you've been through this incredible journey, it sounds like over the last five years or so.

I want to take a step back in time and then we'll get to what you've been through, spent, it sounds like the better part of your life in TV production. Yeah. So my background actually going further back in time is actually photography. Oh, no kidding. So I was the arty student at school, but then got really interested in film. And my route through to that was training to be a TV producer. So I worked in ad agencies on the production team. So making TV commercials, all the things that you fast forward through now. No, we love those.

What's interesting, actually, it feels like TV commercials have become almost like their own little mini cinemas to a certain extent. It's like there's a, well, it feels like almost, it's interesting that you want to go into film and view TV as sort of like the path there potentially, because it feels like so much of the most powerful storytelling and cinematography is happening on TV these days, actually. Yeah. And it's really interesting telling a story in 30 seconds is a real art. Yeah. And it was something that you learn to be able to do and you learn to crystallize, to get to the point and to know what the point is. And working in that genre actually was a brilliant discipline. It really teaches the the craft of storytelling and whilst it's complicated and commercial and all of those things there is still very much an art that is involved and i loved all that i love the creativity i also love

the freedom that you often got given and as a producer whilst i was kind of behind the camera i was very involved with the creative process. I was what they called a creative producer. I was very hands-on. And was that like creative producer in a good way? Oh, well, read the, yeah, I have some very lovely things written on LinkedIn. It's quite humbling. One day someone said, did you realize what people have written about you?

I was like, no. So I actually went and looked. And actually, yeah, so in a good way but um i was very much collaborative i like working with people i like that experience to be fun light-hearted and i'm very much about everybody being on the same side um which sounds really obvious but it's not always like that in advertising it's not always like that in anything in business's not always like that in anything in business, especially sort of the kill or be killed mentality that guided so much of business for so long. And especially in advertising, I mean, where there's been an ethos, at least from what I've seen from the outside looking in, have friends who've been in various parts of the

industry for decades of you're only as good as your last thing. That has got to be a brutally hard way to build a career. It is. It's harsh. I mean, absolutely. And I think that's possibly why I responded to that in the way I did, which was actually by pulling everyone closer to you and having you work as a very close-knit team, you're much more powerful than sort of jarring and fighting because within an agency, there's quite a lot of competitiveness, even though you're all heading towards the same thing. It was quite a strange culture, actually. And I was kind of, I suppose, a bit anti that culture. And I quite enjoyed talking with the client.

You know, I enjoyed that process, whereas a lot of producers are very much, oh, I don't want to talk to the client. But actually, you know, if you engage people and tell them what you're doing, what happens is they leave you alone to do it. And that's why I worked in that way. When people feel comfortable and trust you, they will give you such a longer reign. And then that means that everyone can do their jobs in a far more relaxed way. Yeah, it's such a good point, right? Because so many times I think, especially creative professionals or people who consider themselves, you know, creative professionals would rather sort of have the minimum, it's like the minimum necessary client

interaction so that they can go into the cave and then do their awesome creative work. Whereas it's really interesting reframe to say, actually, if you really lean into the relationship with the client to create the level of trust that then gives you so much more freedom to go and do the thing you want to do. You've summed it up exactly. And actually, I kind of went one step further than that. I started doing training courses to actually educate the client. And in fact, educate the account handlers, educate everybody and tell everybody what all the other jobs were in this long quite complex production process and i loved it it was a revelation for a lot of people people really didn't know what the other departments did and i just found that

astounding and my courses were really fun they were really well received i mean i remember one guy coming 35 years experience as a very senior creative director and he left with about 10 pages of notes and i stopped just what why have you got here he says oh my god i had no idea i had no idea and i've been doing this job for 30 plus years how is that right? Right. And so I really enjoyed it and it was very much geared around best practice, which is, you know, we have all got the same aim. Let's all work together. Yeah, I love doing those courses

and I love watching the faces of the people in the room and the changes that would happen. Yeah. It's funny when you speak clearly, this was something that even though it sounds, I'm sure there was a lot of stress associated with the job and deadlines and a lot of pressure. There was clearly an element that you were madly passionate about and you really enjoyed. And it's also interesting that you use highly visual language, which makes sense coming

from starting with photography and then being behind the scenes, sort of like producing, you have like a visual orientation in the way that you experience things. Yeah, I've always said that I see the world through a lens. And I absolutely do. Everything is a composition. Everything is light and shade. It always has been. And actually, it goes beyond that.

One of the things that I learned from the experience was what my relationship was with colour. I have a relationship with colour as well, which I'd never really stopped to consider. It's only when what happened to me did that suddenly a lot of things made sense. A lot of life choices, things I'd done, decisions I'd made, weird things that you would not necessarily connect together suddenly was I was taken aback with this realization it's like ah that's why and yes it's having this creative view of the world you do see well the world differently yeah I have a friend who was in film for a couple of decades and she worked in lighting and she said you know she became aware of just how stunningly important the slightest changes in lighting yes are but so you're building this career around sight and vision and color and

interaction with people and storytelling and we've been teasing this now for the last you can see where i ended up can't you something happened so let's go there. So and let's kind of like sort of tell the story of what's happening just with you in your life. Also sort of bigger picture. So back in 2012. So I had been this producer. I'd been very ambitious and I'd been head of my department. And then I had babies and life changes. And so I'd taken a break and I'd gone freelance. And my daughter was just

nearing school age. And so I'd managed to negotiate the best deal ever, whereby I was four days a week and I was going to take the summer off, spend the summer with my kids. My son was only two at the time. And then I was going to come back in October when she was settled into school. So hunky dory, I was so happy with that. And then of course, a curveball arrived. But yeah, at the time I'd lined up everything. It was all going to plan. So take me to the day. So there is a day, there is a date. It's October the 1st, 2012. And that is the day that my life changed. So as I said, taking this time off, I'd actually been ill.

I'd had a really awful bug, like a really bad flu-y bug, but it wasn't flu. And I'd just got over that and we'd spent a day out at a gardening show actually. And I came back and on the Sunday night, I went to bed and the last thing I said to my husband was, I need to go to sleep, my eyes hurt. And in the morning, which was the 1st of October, I woke up and I just felt odd, strange. And it was hard to explain. I felt dizzy and that something deep inside me was screaming something is really not right. So I went straight off to my GP, my doctor, and she was pretty good actually. She took me very seriously, did some tests that she wasn't happy with, testing my balance, things like that, and sent me off to A&E. And I spent a very boring

and frustrating day there. Accident and emergency, yeah. With everybody scratching their heads. I had everybody look at me and nobody could find anything wrong they did a stack of tests and sent me home going we're sorry but there's nothing that we can see that's wrong with you and I remember leaving the hospital that day thinking oh you're wrong and then the next morning when I woke up it was actually my daughter's fifth birthday. So the first thing I heard was her downstairs, because she'd crept downstairs very early on, and she was shredding open all of her birthday presents. And I could hear these squeals

of delight. And I was lying upstairs and as I opened my eyes, my heart sank. I realised that my vision had dipped. It had dimmed. Everything had gone dark. And the way I describe this is a little bit like if you were to put your sunglasses on while you're inside, everything goes dark. It's kind of like that, except of course I hadn't put sunglasses on. And this was very frightening. And I blinked and blinked and blinked and looked around and it's like, no, no, no, no, no. My sight has dimmed. So I went straight downstairs. One look at my husband, he looked at me and I went, we're back. And that was that. And we were out the door and we went back to A&E and I never left hospital for 16 days after that. So what happens when you get to the hospital?

So this time they took us a little bit more seriously. Eventually, I was sent up to ophthalmology in the afternoon to see a very nice doctor there. He was very sweet, very calm. And he did a load of tests, which were starting to show my peripheral vision was going. And I felt like I was shouting to everybody, but nobody could hear me. Because as I was sitting, even in his consulting room, literally every blink was washing away sight. It was discernible. I could see it going. It was dimming minute by minute. And I remember one moment where, because they put you into a wheelchair when you're in hospital, you just get wheeled around. And by this time, I had some very strange things going on in my hands and feet. I'd started

off in the morning with a little bit of numbness, like my fingertips were just really cold. And suddenly I moved and I realised my whole hand, all my fingers had gone numb. I thought it was really weird. And then I felt down towards my toes and my toes had gone numb as well. So I'm explaining all of this. And that suddenly, all of these things combined escalated things. And I was whizzed down to neurology. Finally, they put two and two together and things progress pretty quickly from them. It's just a big blur that actually just got darker and darker. From the very first day I went to hospital, it was 72 hours before I was completely and utterly blind.

And that paralysis kept on going. It went all the way up my fingers, up my arms, and all the way up my legs. And it left me paralyzed, unable to feel or use my hands. So I was helpless like a baby. I couldn't see and I couldn't feel the world. What's going through your mind as all this is happening? Well, it's funny because obviously fear, but it's not the kind of fear you might imagine because that comes later. I actually went into organizer mode. I went into producer mode.

So I'm like, right, solutions. Who am I seeing next? What's happening. I was quite practical, actually, which was just a coping mechanism. But it was absolutely terrifying and confusing. And I remember fighting it. I remember fighting it until the last little bit of light went. But yeah, lying in the bed one time when everything had just shut down, I remember asking my husband, I said, am I here? Because I didn't know. And it sounded, I mean, gosh, he was so stressed out. I remember he just didn't even answer me. But it was a sensible question because if you think that the data that supplies you with information about how you're orientated, where you are, is predominantly visual, but it's also sensory. So all of the senses on my body were absolutely in chaos. So they didn't know where

I was. I didn't know if I was up, down, lying, standing. I just lost all sense of myself and my physical body. And that was probably the most frightening thing, not knowing kind of almost who I was. I mean, it's just hearing you share that is anxiety provoking for me. And I'm sure for anyone listening to this, it's funny as you're sort of sharing that, especially the last part, there's a book that has stayed with me my entire life, Dalton Trumbo's Johnny Got His Gun, which was one of the things that got him blacklisted as an author in sort of like the war days in this country. And it was about a soldier who came back who was completely there consciously, but through injuries had lost his limbs and his face and couldn't let anybody know that he was completely there and heard everything that was going on around him. And it was the inner journey that he took as he tried to figure out what's going on here. And that just kind of came racing back to me as you shared that story, how

terrifying it must be. And even to try and communicate what's going on inside of you, that people, because nobody can see this from the outside as you're lying there. No, and actually that's quite interesting. There are two journeys. There's the physical body, which the doctors are trying to fix. And then there's the internal journey where you travel somewhere else. And actually you can't articulate it as it's happening. That comes, that's processing, that happens later. And it was retrospectively looking back on the experience that I then saw. And I could then relate my inner journey because the inner journey is actually, it sounds crazy a little bit maybe, but it's almost separate to what's

happening to the body. Because one of the things I did is I took myself out of my body in order to cope with it. Because being in my body was so horrific, I needed a safe place to go. And the safest place was inside my mind. So I traveled inside my mind to create a haven, a sanctuary. And that was incredibly powerful. But what's quite curious is I didn't tell anybody I was doing that. And I didn't even know I'd done that until after when everything has calmed. And again, you've got that looking back process. I realised that's what I'd done. And then I could describe it in great detail. And I'm so glad that I had certain skills and tools that I'd collected

throughout my life, things like visualization. This is something I'd learned when I was pregnant. And I did something called hypnobirthing, which is self-hypnosis. And this is great for a creative, visually-minded person. I mean, I jumped on this when I was pregnant. I was like, yes, I can do this. You know, create a lovely, you know, floaty sanctuary, a beach, you know, Greek temple. Easy. Let's do that. So I had these places.

I had these sort of other worlds inside my head that I could utilize. And I did. I went there all the time. In particular, I went to a beach that I created. And that beach, I think, saved my mind. Were you, and it sounds like it wasn't so much a conscious decision it's just this was the space that you just automatically defaulted like this is what i'm doing now this is how i'm going to be survive this yeah absolutely you you don't have a

conversation with yourself or anyone around say right oh i'm in this terrible situation what should i do what should i do and no one tells, oh, go to that mental sanctuary. You just do it. And this is where I have such an appreciation. I feel quite humble about the body and the mind and that we have coping mechanisms. We have resources and they kick in. If you let them, they kick in and they save you. And that's all that happened with me. My brain kind of rifled through my memory box and went, right, what's useful now? And a visualized sanctuary, a fabulous beach, which did several things actually, because it wasn't just about escaping. But it was also combined with the breathing techniques that I'd learned in antenatal classes. Those actually calmed my body. So they had a physiological effect upon my body.

But there was another thing as well. And this was perhaps the most conscious thought. I remember thinking I need to practice seeing. So something inside me was going, you need to keep seeing. And so by going to the visualized beach and creating this other world, so this world was so vivid, I could control the waves. I could control the color of the sky. I could make a seagull fly past. I could put my feet into the sand and I could make it feel cold. So there was all sorts of sensory responses that I was actively controlling, but I could control the color. So I was keeping my visual system functioning Absolutely. It was like protect the thing that was the most valuable to me, which was my vision. Keep the connection on. January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is?

You're going to die. Don't shoot him. We need him. Y'all need a pilot. Flight risk. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever,

making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series X, available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required,

charge time and actual results will vary. Your husband is there the whole time, from the outside looking in. I'm sure you've had many conversations with him since then about how he experienced this moment what was it like for him terrifying for him i think one of the things that ed had to do was hold the fort and he got split between looking after two very young children, coordinating, countless people coming and going at our house, trying to keep the household going and looking after me. And I needed somebody with me 24 hours a day. And actually we were lucky. The NHS is an amazing thing. In the UK, we are very lucky to have a health service that is free. But even they didn't

have the resources to look after somebody like me with the needs I had. So my family moved in. I mean, they literally moved into my room and there was a big squidgy chair in the corner, which we called the marshmallow chair. So named because when I touched it, it was squidgy and soft. And I said, it's like a marshmallow. So that's how it got called the marshmallow chair. And Ed spent a lot of time sleeping on there and he would rotate with other people. And I think he was like me. He was just coping in his own way, but I know he felt helpless a lot of the time. And I think that's one of the really difficult things for the carers. You can't fix it. You can't sort this. You've've just got to wait and also he had to protect me because of course the doctors were talking to him and of course they were talking to me too

but of course i knew that when everyone left the room they all went and said really what's happening is she going to survive this you know what we're looking at what's the future hold right because at that point also you had symptoms but still no understanding what was happening that's right there was no diagnosis and there was a very weird process of course completely normal process going on whereby i'd be sent for a number of tests and the tests would be for really horrible things i called it the nasty list things like a brain tumor and they come back in and go, oh, we can take that off the list. You don't have a brain tumour. We've tested you for multiple sclerosis. You don't have that. Ticket off the list. And they were disappointed. And I'm thinking, hang on,

this is good. These are horrible things. I don't want any of these things. I would almost rather you didn't know than you know give me a diagnosis of you know what would be a very serious condition so the every time they came in saying we don't know what it is in a weird way i was glad i mean the day did come where they came in and said okay we're going to put our money on this one thing. Yeah. And I guess the lingering question the whole time also is, well, two questions really, is, is something going to go next? And will what I've lost ever come back? For me, the overriding question was,

when do I get my life back? When does this horrible, macabre, grim fairy tale end? I felt like I was living in some kind of weird sci-fi movie. It was so surreal. And I just wanted to switch it off and go back to my life. That's what I wanted to know is when do I get my life back? So where do we go from there? So 16 days in the hospital, I did get given a diagnosis, which is NMOSD, which no one's heard of. It's a very rare autoimmune neurological condition, which affects about one in 100,000 in the UK. There are people who have this condition around the world, it's normally a recurring illness, but they considered that I had something called a monophasic episode. In fact, they called it a catastrophic episode.

It's a very good description. It's exactly what it is, which meant basically I got it really badly and once. So we left the hospital with this mantra, which was the last thing the neurologist said to me which was we are hoping you will have a full recovery that's all i needed i didn't actually want to know anything else and we went home and that's what my focus was and when you 16 days later when you left had you started to recover things yes so So my sight kind of went to complete black. It kind of hit the floor and then started to come back, which of course is what everybody was hoping for. But it doesn't switch back on. Your vision unfortunately doesn't do this. It's an exceedingly slow process. So my optic nerves have been damaged and nerves do not like being fiddled around with. And when my vision started to reemerge, it was, I can't call it vision, it was an experience. So the light would shift and instead of being completely black, it would go to kind of grays and these swirling, shifting shapes, but everything was flat and translucent. So it was a little bit

like living inside of an x-ray. There was nothing I recognised, nothing that made sense. I certainly couldn't see the room I was in. I remember on one of the first mornings, kind of staring at something weird moving on my bed. And it took me about 10 minutes before I realized that actually I could control the movement. It was my arms. I mean, that's how surreal it was. The world was not like it should be. It was a very scary, surreal, and stressful place to look out upon.

What was it like when, do you remember the moment that you went from black to anything? Coming back? Yeah. Yeah. Like signaling like maybe this actually is not forever. Yes, it was on a morning when I woke up. It was about a week in hospital and I'd gone to bed, gone to sleep, closed my eyes completely blind. So no light change.

And when I opened my eyes in the morning, there was a light shift. And that was literally just that. There was a paler gray shape to the right. And I woke up very early this morning and I remember one of my friends had had the night shift. She was in the marshmallow chair and I didn't say a word. I just opened and I remember looking around the room and going, there's a light shift and it's paler on this side. And so lying there, I basically figured out there was probably a window. And so when she woke up, I said, Jackie, there's a window. And she just burst into tears and so did I. That was an amazing moment because for me,

it was one step. It doesn't matter that it was the tiniest step, but it was one step forwards. And we hung on to that. And the next day, of course, it's not another big jump. It's just a tiny bit more light. I mean, it was so slow. Yeah. So when you finally went home 16 days later, how improved were you at that point? Very, very poor vision. I couldn't recognize faces, people. By then, I'd started to get some lines.

So I had outlines of rooms. I might recognize a doorframe. So when your vision comes back online, I describe jiggling lines a lot. And these lines were basically rebuilding my visual system. So they were the building blocks of vision and they were demarcating and separating out my visual landscape. But I didn't know that. There were just weird jiggling lines. And so those lines were building and I was constructing a visual picture, but it still didn't make any sense to me. I mean, probably even though I wasn't tested, I would have been legally blind still. So I went home into what I knew was our house, but it was like a ghostly house.

It didn't look like my house. There was no color and everything jiggled and was just black and white. Yeah. Very frightening, very eerie, very strange. Yeah. I can't imagine. Do you recall the moment you first saw your children when you came back home? Well, I had seen my children once in the hospital.

I refused to have them come in because of all the tests I'd had, I'd had so much blood taken. I was bruised and battered. I mean, I looked very ill. And I didn't want them to see mummy. I didn't want them to see me so damaged. And it would have just broken my heart. And I was very much in coping mode

and my kids would have undone me. So they came in once the day before I left and I remember, because they're both very blonde with blue eyes, I remember them coming really close up to me because children do that. Adults don't do it. So it was this wonderful moment

where I had this human face nose to nose with me and I could see an outline and that was just marvelous and the children seemed to understand I needed them really close to see them we never discussed it but children do this they they climbed on me and they just did that instinctive nurturing. They looked after me. They were little creatures, but they were amazing. That's beautiful. Over time, vision improves more and more and more. And color eventually comes back, but it doesn't just come back.

No. Over time, we learned to take all the weirdness. We learned to deal with it and embrace it, actually. Colour coming back was so strange. So, after probably about two months, I started to have more idea that there was colour in my world. And I would feel a a colour but not see it, which is the weirdest thing. So I would be saying to them, my daughter came up to me once and I'd say, your dress, it feels red. And I know I could hear everybody hold their breath around me going, what is she saying? But that's what it was like. And it's only, you know, afterwards that I understood that that made complete sense because we all have a relationship with colour. And I was

actually using all the other non-visual channels to absorb this information. And I was getting half of the message. So my associations, my intuitions of color, which actually felt this color red, felt warm. So I had a feeling of warmth, of comfort. And it was red. It was very strange kind of dealing with that. And I think that's one of the things, you know, those experiences are the ones that I documented so much. I mean, I started documenting from very early, but this is where it really came to the fore to record all this weirdness. And yeah, colours would also do a weird thing where they would flip. So particularly red and green. And I would look out on, and I did a lot of talking

to weird objects. So I talked to bins, I talked to lampposts, I talked to trees, bushes, gates, you name it. Anything I walked past, I'd have this conversation. So I was once standing on the lawn, talking to the lawn and I go, you're green. You are green lawn. I know grass is green. And this lawn would be going flip, flip, flip, flip. And it would be red, green, red, green, red, green. And I'd go, stop, you're green. But it was like my brain was misfiring. I just couldn't get it to settle on a color. And it was flipping between these two colors. And it was, so things like that were so extraordinary and so bizarre and mind boggling. I think that's what was starting to really fire up my curiosity to actually understand why,

what was going on for those things to happen yeah especially coming from your background right because once you get to a place where you're like okay so it seems to be coming back i'm recovering sensation i'm recovering sight and color but there's a lot of weird stuff happening and you have like this extensive history and relationship with with the visual and with color driven on I would guess you know from pre 2012 by some level of deep fascination and curiosity it's it's almost like it comes back but in a very different context afterwards yeah I I felt that I did drive some parts of the recovery I mean I did I actively got involved with it. So we did lots of things to stimulate my vision and particularly to stimulate colour. I used

to paint my nails. Well, I didn't, but I would have numerous girlfriends who would paint my nails in lots of different bright colours. But of course, they wouldn't tell me what colour was what. So I'd have these dreadful 10 fingernails, pink, white, black, fuchsia, orange, green, blue. We had so many different colours. And I would stare endlessly at my nails going, you are pink. No, blue, pink, yellow. No. These are the crazy things that I did. But actually, it wasn't so crazy because my accuracy rate improved. So I would start to see some colours more accurately. And I was good with red. And after a while, I got much better with yellow. Green was always a bit tricky but blues I started to become much more comfortable with blues as well and and over time that accuracy rate would go up from 80 percent to kind of 90 percent and then and then I'd be convinced and I would know a color was a

color but it was this strange relationship where I would question it which is counterintuitive to how I'd lived my entire life. My life was absolutes. So to be in this unknown world was, yeah, really strange. Yeah. So where did that curiosity take you? Because it's like now it starts to move. It changes everything from that point forward. Yeah, it does. There was one particular moment where I went, enough, I have to know. And this was one morning and I was walking with my friend around the corner from where I lived. And I was the local dog. Everyone used to take me for a walk.

I had this wonderful army of magnificent women who would all travel and walk with me every day. And they would put up with me talking to the lamppost, talking to trees, you know, anything in my way. And so they were used to this. And we turned the corner and I spotted this bin and it was like it was on fire. So at this stage, this is about two, three months into my recovery and the world is still this murky brown, but I can make out the edges of trees. I can make out the edges of houses. I can make out doorframes. I've got quite a lot of emerging detail, but it's still very murky and colour is unreliable. So I turn this corner and this bin is like fizzing. It's like someone had put a load of sparklers all over it. And it was moving almost. It was effervescing. And I was just like, what is that?

Straight up, straight into this person's garden, through the gate. And my friends go, oh, no, what is she doing? And I'm going, you're blue, you're blue. And I touched this bin. I go, I don't know why I did any of this. It was very intuitive. Touched the bin and the sparkling and the spitting stopped and it kind of dampened down and it went flat.

But then if I took my hand off and started to move away again, the fizzing would all start up again. It didn't change colour. It stayed blue, but it just went to a flat blue rather than this crazy erratic blue. And remember turning around going okay now i really need to know what that is because that is the weirdest experience i've ever had in my whole life and that was the moment that was the absolute moment where i went right whatever happens in the future i'm going to find out yeah so it's like okay so what's actually going on here like what is i mean it sounds like that kind of returned you to this exploration of what is sight who sees like where does it fall between the eyes and the brain and that becomes your obsession would that be uh it absolutely does

you know if you deconstruct something that you've always had and taken for granted, it's amazing when you put it back together again, how interesting it becomes. And I used to look at the world different. I mean, when I say that, I mean, I would pan across and look differently. So I absorbed my world. I paid attention to every single thing. Because naturally, when we walk around seeing the world, we prune away so much information because we don't need it. We couldn't actually process the amount of visual data that our brain is taking in. It would completely overwhelm you. So the brain prunes

out what it needs to see. Now I needed to do the opposite in some respects. I needed to suck it all in and see every leaf. And so I had developed this way of seeing things and that was just igniting so many questions inside me. Why, why, why? And so, yeah, it started me on a journey to really understand my own visual system and these weird things too. And I initially, a few months on, I was by this time referred to a specialist NMO team at the John Radcliffe Hospital up in Oxford, who were great. And I said to them, look, these crazy things are all happening, which they couldn't give me answers for. I said, I really need to start to understand this. What should I do? And they said, go and read Oliver Sacks. Go read every single book Oliver Sacks has ever written, which I couldn't do immediately because I didn't have sufficient

vision. But in time I did. And about eight, nine months later, I was able to read. And I went and read everything he'd ever written, starting with Island of the Colourblind. And it was brilliant because it made so much sense. And I could relate to so many of his little stories that I was utterly hooked. And Oliver Sacks led me on to other books. And so from there, I kind of started this piecemeal research, I suppose, where I was starting to educate myself and understand the basics of vision science. Because one of the things I realised is it's all very well having confusion and burning questions, but I couldn't even really articulate the questions. I didn't even know really what to ask. So I had to kind of go and learn some basics before I could even then

ask sensible questions. And to ask those questions, I started networking with people I knew. And it would be pretty much along the lines of, do you know a neuroscientist? Do you know anyone who works in neuro rehab by any chance? And it's amazing how many doors open. I was helped probably because I wrote a blog. So I had documented everything from the first day. So I had this mass of data and I started telling my story online, a blog that was called Talking to Lamp Posts. And I reinvented myself around this time because I thought if I'm going to go on this scientific mission, I don't really want to do it as me. I need to be someone else. I need a veneer.

I need a front. So I invented a pen name, which was Patient H69. And this was great because it gave me the opportunity to investigate and be curious, but without, with a veil hiding a little bit still. I was still very vulnerable. You know, I'd been through a horrific experience. I wasn't actually prepared to put myself out there quite yet. But with this blog and all this data, it meant that those clinicians and scientists that I did get put in contact with me had something to respond to and that was really really helpful I didn't realize how I was helping myself by doing that but by giving this patient account with the detail I did it piqued their interest too so it became a mutual exploration and we kind of helped each other along the way. Yeah. I'm wondering also, how were you blogging? How were you writing?

Just sort of like from the actual technical. Yep. Initially, all my diarying was done through an audio MP3. And in fact, before that, predating that, it was written by my unwilling and very resistant family in the hospital, where I'm going, write it down. And they're going, no, this is so not the important thing to me. I'm like, write it down.

I need to know the names. I need to know the times. I need to know what tests they're giving me. I just needed to know it all. I suppose, again, it's this producer thing. Yeah, I mean, that's because the big question for me is why? What was driving the impulse so immediately to document every step on such a granular level? It's a difficult one for me to answer because it was so just what I did.

Yeah. And it was unquestioned. I was actually quite adamant. I mean, I had to force them to do it at times. I think there was a bit of me that kind of knew a story was unfolding. And I was at the core of it. And if I didn't have it documented, I'd forget it. And I think there was a little bit of, I need to hold on to the details because whatever I'm going to do with this, I want to have them so

I can lay them all out, see it, process it, and if necessary, bin it. But at least I've got it. And also one of the things about being blind is you've no visual data. So I wanted names. I wanted to know, I made them write down what people look like, how tall they were, because I wanted to cross-reference with what my perceptions were. So I needed to create my own inner picture of everybody that walked in my room. Those details down to what shoes they wore were really important to a visual person. It was critical that I knew those things, those details. I suppose, again, I was building a visual picture. But yeah, I know the documenting sounded weird to everyone everyone but it was the most natural thing for me to do yeah no it's really it's really fascinating it's also it's

like i wonder if you know part of what was going on and it's kind of an unanswerable question but was you you are dropped into a place of profound uncertainty on almost every level in every context but the one thing that you could have exert control over maybe there are other things but one of the things was i can i have my voice i can explain what i'm experiencing and i can ask people for information and we can we can memorialize the moments and that at this point like i still have control over so let me exert it and then i wonder if that creates a bit of an anchor um for your for your mind yeah i think absolutely and you know most producers are self-confessed control freaks and i am you know

i am so not alone in that and i think trying to control the processes and the things around me in that way was absolutely part of that yeah it sounds crazy wanting to kind of hang on to the horror. But then I knew that if I had all that documentation, I could do something with it. I didn't know what I was going to do. I had no idea, but I kind of knew I was going to do something with it. Some form of expression was going to come out of this. Yeah. Whether you're in your running era, Pilates era, or yoga era, dive into Peloton workouts that work with you. From meditating at your kid's game to mastering a strength program, they've got everything you need to keep knocking down your goals. No pressure to be who you're not,

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I knew you were gonna be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're gonna die. Don't shoot him, we need him! Y'all need a pilot?

Flight risk. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes.

The Apple Watch Series 10. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required. Charge time and actual results will vary. Did your other senses respond? Because one of the things that you hear is that if you lose one particular sense, the other senses become more acute to sort of, quote, make up for it. I'm curious whether you experience that. Yeah, I get asked that question quite regularly. In actual fact, what happens is you just rely upon them more. So you become more attuned to them. So what's

really interesting is, you know, we have more than just the five senses, we have nearing 30. But all those more subtle channels, we dismiss them. I mean, we don't consciously dismiss them, but we don't need them because we've got these big dominant senses. You knock out two of those, then all that small, quieter chatter, suddenly, actually, you start listening to it. And so you listen to the sensory responses in your body in different ways. So I would build a picture. And I remember a classic example of this. There was a doctor, because I nicknamed everybody, I gave them all names, and he was the protege. And he would clip, clip, clip, clip, clip, clip, clip into my room. And I knew him

every single time. So I'd recognize his footfall. And he had nice shoes. And he was young, ambitious, tall. And I remember having a conversation with my friend Jackie one day. And I said, is he blonde? And she went, how do you know that? I went, well, I don't know, but he's blonde and he's good looking isn't he she went yes how do you know and i don't know but everyone's kind of vaguely attracted to them to this man aren't they and she was like she was totally taken aback that i collected this information yeah you just pieced it together from all sorts of different data points. walking. He was shifting around that, I suppose that intimated some kind of ambitious frustration, you know, kind of restlessness. So I, yeah, I made some leaps, some jumps and some conclusions. And I was right on a lot of it. So it's amazing how all your other, your sensory army all comes

out to play and builds pictures. And if you are listening to it, the data is there. And my hearing, I think probably was definitely more sharpened and I would use it more cleverly probably. Do you feel like that continues today? No. Vision is so dominant. It overrides everything else. I try actually to stand back, particularly as I have not complete perfect vision. I have partial sight. So actually, I sometimes make myself stand back and listen to my world a little bit more. But that has to be a conscious decision. It's not like it was then a right a natural response the journey you start to take also you didn't return to production and you sort of the curiosity that you were talking about takes you down this road where you're starting to it's almost like you become an investigative journalist but there's also but it's like investigative journalists like what happened what's going on in my brain what happened like what happens in

everybody's brains like in you know the moment between you know light hitting the eye and what the brain actually perceives as seeing and experiencing and that takes you on this really interesting almost like investigative journalistic journey and that ends up also using your words it becomes a form of expression yeah take me to this sort of uh adventure so this this was i never expected this to happen i was awful at science at school i kind of labeled myself as don't do don't get science rubbish at it And so to suddenly find myself absolutely just gripped by the stuff I was finding out. And I suppose going on this journey, I realised somewhere along the line that my natural expression is artistic, but maybe there was an opportunity here to combine science and art. And that was very exciting to me. I kind of felt like one told

half of the story and the other told the other. And so I got really geeky. Yeah, I completely transformed into science geek. And the more I talked to scientists and the more doors opened to me, and I was very lucky because I got introduced to... My very first conversation with a scientist actually was at the MRC which is a medical research council in or center sorry in Cambridge and I talked to a neuroscientist there called Tom and we had this bizarre conversation about the perceived colors of bananas I remember thinking god your job is so interesting and he was the one that first mooted the idea that my sparkly crazy blue bins might be something called synesthesia. And so actually, that was the first thing that I found out.

And he then passed me on to another neuroscientist in the UK who's quite well known called Professor Jamie Ward, who's kind of our UK expert. And this is kind of what happened. It was a stepping stone effect. So I talked with Jamie and he then confirmed that, yes, I very likely had a synesthesia experience, which is the crossing of the senses. So one sense was being stimulated by another. Now, mine wasn't a classic case at all. And he explained all of that.

And actually it was something called acquired synesthesia, which is what it sounds like. And he was curious. And then he put me in contact with someone else. And bit by bit, I kind of met all these scientists who weren't what I expected them to be. So I don't know what I thought scientists were, white coats, glasses, boring. I met all these really interesting people and that was fantastic and they were very much interested in me and eventually i got introduced to dr tristan beckenstein at cambridge university and he's been the most pivotal in this research journey and when i got introduced to him i think the learning and the the kind the adventure really, really started to take off.

Yeah. What made you interested in exploring understanding and curiosity and the science of the brain and vision and art? ended up on stage at TEDx presenting some video of an experiment turned art project that that was kind of stunning um to take me to what made that happen then what it actually was you know it's so mad really when I look at what we did it's so mad so I went to see Tristan primarily because he studies consciousness. This is what his area of research is. And he uses EEG a lot. And EEG is where you attach electrodes to the scalp and it records your brain activity. Now, the reason I was interested in this is because I wanted to express this journey. And I did something, again, that I thought kind of everybody would do. I designed a neuroscience exhibition. Because that's just what you do.

Because it's what you do. It's the logical next step. I know. And I think, oh, you don't know how crazy you sound. It was a very logical step for me. It was, if you think, though, what my background was, it was just scooping up everything. But what I did want to do was pictures on the wall.

And it wasn't even about shooting film. It was something more immersive. And one of the things that I had this retrospective understanding of was this beach, this mental sanctuary that I used. And I wanted to represent that. I wanted to explain what I'd done. Again, part of this kind of narration of the experience, I think initially it was kind of so my friends and family knew what I was doing inside my head because I thought it was quite cool. And so the installation basically, rather than showing someone a random picture of a beach,

I thought the only way you'll really get this is if you come inside my head. And so EEG was a scientific tool to allow me to express that. So this is what I went to Tristan with. Now Tristan is South American. He's cheeky, quirky, and he's a bit of a maverick. And actually, he was the perfect person for me to come and have this crazy idea. And he got it. And I said, look, Tristan, I want you to come inside my head. I want you to record my EEG brainwaves while I'm visiting, while I'm meditating on my beach. And I want to convert those brainwaves into music and art. And he went, okay. And that's pretty much what happened. And so we started on this crazy journey.

And we did the impossible. We converted a medical, scientific, very rigid tool that records neural data into beautiful, moving art and music. Which is like it takes you full circle to a certain extent. So as we sit here today, how are you? I'm good. Yeah, I'm on this path. I'm on this journey.

That geekiness is not gone. It's just more. I just, I love it. And I suppose now visually, I have some visual loss but I get on with that I you know it doesn't stop me doing what I want to do and I have loved the writing because the thing with the blog is that turned into a book which was just the coolest thing ever and actually it was funny because when I got asked to write that book it suddenly dawned on me that actually when I didn't know what it was I was going to do in the very first day I did I just

hadn't told myself because I didn't I wasn't labeling myself as a writer I was a producer and producers don't write so it took a while for me to kind of go, oh, okay, that's what I've been doing the whole time is writing a book. So that has been an amazing experience and I have thoroughly enjoyed the writing process. So yeah, science, writing, that's the future. It feels like a good place to come full circle. So the name of this is Good Life Project. So if I offer the phrase out to you to live a good life, what comes up? To know you have choices. It's one of the things

that I have most certainly walked away from and learned is life will throw things at you. You do not know, you have no control over that, but you do have control over how you respond. And for me, that's such a reassuring thought to know that I am in charge of my responses. That's helped me enormously. Thank you. Thank you. And as we wrap up, I want to give a final shout out to our awesome sponsors and supporters. Zip Recruiter, RX Bar Kids, Thrive Market, Movement Watches, Audible. Hey, thanks so much for listening. Be sure to click on the subscribe button in whatever listening app you use so you'll never miss an episode. You can also help us continue to grow and bring more people into the conversation

by visiting our amazing sponsors who help make what we do possible. Most important, if something has really resonated, don't just spin it around in your head. Share it with others. Turn it into a conversation. When ideas become conversations that lead to action that's when real change takes hold i'm jonathan fields signing off for good life project mayday mayday we've been compromised the pilot's a hitman i know you're gonna be fun january 24th. Tell me how to fly this thing. Mark Wahlberg.

You know what the difference between me and you is? You're gonna die. Don't shoot him, we need him! Y'all need a pilot? Flight Risk. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever,

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