mail2

Video Library

Patient H69: Finding Light in NMO – Vanessa Potter

Victoria Jackson:

There it’s been great. We’re having such wonderful participation. I love seeing that video. Christine Ha, I’m sure many of you are familiar with her and maybe even her cookbooks is such an inspiration to all of us. And I want to talk about another very inspiring woman. Her book is out there and up until about 2012, Vanessa had spent 16 years as an award winning broadcast producer, working within the London advertising industry. And then in October that year fate conspired to turn the lights out on her. And overnight she found herself blind and unable to walk. And in 2013, she started writing a blog, which is actually how we learned about her. And you can remember five years ago, finding somebody writing about NMO on the internet was still pretty rare.

Victoria Jackson:

So we reached out to her and we’ve been connected ever since. Her book absolutely is a must read for everyone in this room. And her Tedx talk is a must see. So you’re about to hear her story. How Patient H69 evolved and how she responded to her illness. It’s extraordinary, her personal re-invention and her ultimate connection to neuroscientists at Cambridge University. This is a powerful story of overcoming trauma and a heroic journey of perseverance and courage. It’s my pleasure and honor today to welcome Vanessa Potter.

Vanessa Potter:

Thank you for such a wonderful welcome. And for everyone being so friendly, it’s really a fantastic day to be invited here for NMO patient day. I have been in contact with The Guthy-Jackson for the last five years. So it really is an honor to be invited here today in person to talk to you. So why am I here? I’m just like you, I’m here to tell a story. Everybody in this room has a story to tell and they are all unique. It could be because you’ve got NMO yourself, or maybe you’re a carer of somebody who has NMO, but that also includes the wider medical and scientific communities too, because we really do all learn from each other. So it’s in that spirit that I would like today to share with you my own NMO journey. To do that, yes, I need to go back in time to 2012. I was living in London, in Crystal Palace in the Southeast.

Vanessa Potter:

I was married to Ed. Actually I should point out I’m still married to Ed and I’m sure he’s quite glad to hear that, because he’s in the audience. We’re still together, dear don’t worry. Back then we had two very small children. They were only two and four. I was working as a freelance TV producer. I was making TV ads, if you remember TV ads. I was doing that thing of juggling life, career two small children, a home, and it was pretty tough. So I decided I was freelance, I’ll take some time off. But Hey, best laid plans. Everything changed. October the first was a Monday. And on that morning, I woke up to a darkened world. There was this strange brown, muddy haze over everything. And I felt very dizzy and my eyes hurt. And I’m sure those are familiar symptoms to many people here.

Vanessa Potter:

So I got myself off to accident and emergency, which you would call the ER room. And I spent a very frustrating and boring day there with no results because all the doctors did was scratch their heads. But even then on that very first day, I knew something was very wrong. So I went home and I went to bed and I just hoped and prayed that it would all go away. But of course it didn’t. And the next day I woke up and I was not better. As I sat up in bed and looked around me, I calculated, I just lost about 70% of my sight. And rather strangely my fingertips had all gone numb.

Vanessa Potter:

So of course, went straight back to A&E but this time I didn’t leave. And again, there’s plenty of you here know exactly what that is like. All in, it took three days for the world to go black for that numbness to creep up my hands and my legs and to mobilize me. The neurologist called it sensory loss. And you know, it’s a really good description because here I was blind and paralyzed, but the worst thing was, nobody could tell me why. It actually took three weeks for me to get a diagnosis of NMO.

Vanessa Potter:

Now, eventually that episode did come to an end and I kind of slid into this recovery period, but quite early on, I find myself standing back from what had happened to me. And I looked towards the future, because I decided it was up to me. No one else was going to make me better. And I decided I was not going to be defined by an illness. I had other things in my life. I had a family, friends, children, a career. I was not going to be defined by an acronym.

Vanessa Potter:

If NMO was going to take something away from me and it did, and it still has, because I don’t have full sight. Then I decided there and then NMO was going to give me something back. And in fact, my illness then became a springboard for everything that was going to happen in the future. And it was that mindset that shifted everything. So I started to document my recovery. I used a little MP3 recorder because I couldn’t see anything, I couldn’t write.

Vanessa Potter:

And I logged all the tiniest, smallest changes. Every single day, I went to extreme lengths to recover. I used to test myself. I was the crazy woman going down the road, measuring cars to see if I could see another inch or two further. I’d look at trees and leaves, door handles, people’s coats, anything to stimulate and bring my vision back online. I had a walking stick because I had to relearn how to walk, but even one step would have my two little children jumping up and down and cheering because we knew if I can walk one step today, then maybe tomorrow or maybe the day after I’ll walk two. I needed to feel whole again. I wanted to be a mum. I wanted to look after my children, myself.

Vanessa Potter:

I also realized how important it is to connect with the world around me and how vital my senses are. These incredible tools that up until then, I don’t think I’d really appreciated. For 20 years, I’d use my eyes for my job. It was my livelihood, but I didn’t understand how we see. It’s not the eyes that see, it was my brain and suddenly I really needed to understand that. So that curiosity, it ignited what I can only describe as a crazy scientific learning journey. Because suddenly I realized my experience had value even with all its weirdness and it’s frightening moments, but trying to explain vision loss to others is incredibly difficult as I’m sure anyone here who’s had optic neuritis knows. Now for me, my vision, didn’t just switch back on. It returned in these kind of wispy layers and it took a year.

Vanessa Potter:

After I lost my sight completely, all I opened my eyes to was a misty fog, a swirling gray cloud. I couldn’t see any shapes. I couldn’t see the room I was in. I couldn’t see the people around me. I remember one morning early on, seeing this kind of weird movement below me and thinking “What is that?” It took me 10 minutes to realize I’d been looking at my own arms. It took weeks for lines to appear, to start to demarcate and separate out the boundaries of my visual world. I used to say it was like the artist David Hockney. He was inside my head and he’s drawing, he’s sketching the world in around for me. It was frightening, it was weird, but it made me curious. And then when color started to reappear, I wouldn’t see a color. I would feel it. And then blues, when blues started to come back, they would fizz and spit like a lit sparkler. And I just went, I have to know what is going on inside my brain.

Vanessa Potter:

So I took myself off to Cambridge University and I went and banged on the door of science. And I said, “Please help me.” And I persuaded neuroscientist there to help me uncover the science of my sight. And what we found out together would offer valuable human insights that corroborated 40 years with a vision science. I learned so much from them, but and this is the important bit they learned from me because I offered them an inner story. That up until then, no one else had been able to give them. So science has helped me communicate. Yet, they have learned from what I have told them. Like others with optic neuritis, I have spent a lot of time frustrated trying to explain what reborn sight really looks like. Vision is so frustratingly subjective. So the Cambridge neuroscientist helped me with another thing. They helped me create some images so I could show you my reborn sight.

Vanessa Potter:

This is what I saw a couple of days in after having lost my sight, completely a gray misty world. And if I show you, that’s what my family saw. I put the images too close together. You can really see the disparity. Here, I’ve got very low contrast, no acuity. So no sharpness of detail. I’ve got no stereo vision. And of course no color. One other image, these are created by using a biological algorithm. And these were incredibly helpful images for the scientists at Cambridge because they helped show them in what order my visual system came back online. Science helped me uncover and understand other things too.

Vanessa Potter:

During my recovery, I used what I would describe as a hybrid of meditation practices. Now this was to overcome anxiety and PTSD and I used it with enormous success. I researched this with a scientist as well, and quite incredibly, this led eventually to an immersive EEG science, art installation that we launched at the 2015 Cambridge Science Festival. At this installation, we invited members of the public to come along and wear an EEG cap themselves and meditate. And then we showed them what their brains looked like whilst they were meditating. The exhibition was so successful, it had to be extended. And a year later I was very proud to be invited, to give a Ted Talk in Belgium, all about it.

Vanessa Potter:

And that audio diary. Remember the MP3 player? That turned into something else as well. That grew into a blog. But my blog wasn’t a proper blog. Because most people do individual posts, but I didn’t. I just told my story. So it was in this narrative linear style and eventually it was sent to Bloomsbury and they contacted me and they said, “You do realize you’re not writing a blog. You’re not very good at blogs, but we think you might have written a book. So would you like to publish it?” You say, yes, don’t you? Patient H69: The Story of My Second Site was published in 2017 and I am honored. I’m so proud to say it was voted The Times best memoir 2017.

Vanessa Potter:

So clearly my illness, my NMO was a pivotal moment in my life. It made me reevaluate. I appreciate the friends and family who pushed aside their own lives to look after me. I value Ed and my children. They truly are the best medicine. I also appreciate the women in my life who swapped roles to keep my life ticking over. And my friends who traveled miles to walk with me every single day. I can tell you friendship does not know mileage. And in the UK, we are so lucky to have our National Health Service, for indeed it really did save me.

Vanessa Potter:

So my story is about finding solutions. It’s about the incredible power of the mind and about the mental resources I didn’t know I had inside of me, and maybe you don’t know you’ve got inside of you. So I’m here to say we all have a story to tell and it’s so vital that science hears those stories and learns from them. And as it’s been said already today, the one thing I do know, you can’t stop life slapping you in the face because it is going to happen. But what I really truly do know now is that it’s my choice, how I respond to it and it is my choice, what I do next. Thank you very much.

Vanessa Potter:

I think am I staying for Q&A.

Victoria Jackson:

Absolutely.

Vanessa Potter:

Great. I won’t disappear then. I was going to run off.

Victoria Jackson:

Questions for Vanessa would be awesome. She’s here and has so much to say.

Jeanette McCourtnum:

Hi, my name is Jeanette McCourtnum. I’ve been diagnosed with NMO and one of the things that I noticed a lot with my vision and it kind of struck a chord when you said that your brain, it’s a lot of brain stuff and see, I can’t even talk. This is part of my problem. But what I noticed with myself is that I see things, but I can’t see them because my brain isn’t registering the information. Like I was across the room and I couldn’t find my table. And I can’t tell who’s in front of me until they’re right here, but I can see to maybe read as long as I have my glasses on. And I don’t know, did that go away for you?

Vanessa Potter:

No. And I write about that a lot. Because you explain that to people and they look at you strangely, because it kind of doesn’t make sense. And that’s why I went and did so much of the investigations I did to try and get my head around the way I was now seeing the world. Because I do see the world differently. I’ve realized stereo has quite a lot to do with this. So I find that the background, the foreground sometimes mergers, but understanding that it was my stereo vision kind of malfunctioning was helpful.

Vanessa Potter:

And also I think we have to understand that your brain is constantly pruning information. So we can only ever process one thing at a time. And I think having had NMO myself, I process slower now. So this room is a nightmare. I have to say, I don’t know if anyone else has got a nightmare with this room, but negotiating tables and this carpet it’s so hard and other people don’t get that. You with me on the carpet? Sorry, Hilton. But I think it’s been sympathetic to that. And some of the questions couldn’t get answered, actually I found at Cambridge. So part of it was just acknowledging that that’s how my life is and actually asking for help. So Ed knows he walks ahead and goes, “Right table, oh, there’s a weird chair. You’re not going to like this carpet.” And we just work around it. And I find that the best way, and humor.

Gloria Gonzalez:

Hi, my name is Gloria Gonzalez and I have neuromyelitis. Well, of course, when I first got this, it was with my legs. But then a year later I got it with my vision where I lost vision on my left eye. And like you, it took a whole year plus to come back very slowly and very frustrating. But it was only one eye. The year later, as I was trying to get back into my life, getting back into work, getting back into driving and whatnot. And with my children, my right eye lost its vision. So it was starting over again. But with the left eye, not quite there yet. I lost a lot of depth like you did, and I’m still trying to work on it. And I have vision back. This was like six years ago, seven years ago, where everybody sees something. For example, in a picture, it takes me a couple of minutes to be able to realize what they’re seeing or vice versa.

Gloria Gonzalez:

I’m seeing something. And I’m trying to explain to them what I see and it’s totally different from what they see. Like for example, in a picture where I would see, let’s say a dog doing something, they see something totally different and it’s actually more so a person laying down or something. And after I realized what they’re seeing, it’s like, I feel not to say like an idiot just saying, no, that’s not what I saw. And it’s frustrating to see that it takes time to be able to realize what my mind is seeing compared to what is actually there. And still to this day, it’s terribly frustrating.

Vanessa Potter:

The slowness and the frustrating are two things I relate to enormously. I describe, because one of the things I tried to do in the book is to describe all of these things. And I think I look at a visual picture as a series of snapshots and I slowly build up a jigsaw puzzle. And while they’re all seeing the whole big picture like that, I’m going to bit here bit here, bit here build, build, build. And so I kind of construct my visual world slower. But also there’s something to do with attention as well. So if my attention is brought to something, I will see it quicker. So I’ve learned to kind of work around it. So I try and see the things I need to see and also to not put myself in complex places like train stations are difficult. And I know I’ll have a very frustrated day if I try and do that.

Vanessa Potter:

So there’s also a little bit about being kind to yourself and sympathetic. And maybe like I say, asking for help, I do that so much more now. If I go and meet my friends, like, I don’t know if you have the same with dark places, dim light nightmare. I can know you for 20 years. I can’t find you in a dark bar. Wear deely bobbers, stand up. But you know, you have to tell people to go, hello. And actually my friends are quite good, but sometimes it’s frustrating to remind them every time I can’t find you, you need to be sympathetic to the fact that I see the world differently from you. And some of those things we can explain and some we can’t, but you just have to find tactics.

Moderator:

Over here at the last question.

Audience:

Hi, can you hear me now?

Moderator:

Yep.

Audience:

Oh, I cannot wait to read your book. I’m so excited. And thank you so much for sharing your story. A lot of us have developed a little army of people like you that keep us going. But how in your experience did you deal with the really dear people in your life who just couldn’t handle it? There’s a kind of a sadness there and you’re such a strong person. How did you address that? And was it surprising to you?

Vanessa Potter:

You know, I think one of the things you learn having an illness like NMO is tolerance, and that’s tolerance to yourself. I mean, I was a hundred miles an hour TV producer. Now I go about 75 and that’s fine. But you know, you also have to be tolerant to other people’s coping mechanisms, because not everyone can deal with illness and absolutely that happens. So in those situations, I focus on the people that can and the people that do. And I think that’s just life. It’s not that I have a problem, I mean there are some people who I have less contact with now. But not for any boundaries, and just because it’s easier to spend time with people, like you say, your army, your people that get it, your tribe. And I think when you have an illness like NMO tribes become very important. I’m quite lucky. I now consider science, my scientist friends as part of my tribe, which is mad. And I think I wouldn’t have had that before. So you know what? I might have lost some other people, but I’ve gained some incredible new people along the way.

 

Leave a Comment

Welcome & NMO State of the Union – 2018 NMO Patient Day

2018 NMO Patient DayThe Guthy-Jackson Charitable Foundation Hilton LAX Los Angeles

,

Next Steps to Cures – 2018 NMO Patient Day

2018 NMO Patient DayThe Guthy-Jackson Charitable FoundationHilton LAX Los Angeles

,

Ask the Experts – 2018 NMO Patient Day

2018 NMO Patient DayThe Guthy-Jackson Charitable Foundation Hilton LAX Los Angeles

,

Update: NMO Clinical Trials – 2018 NMO Patient Day

2018 NMO Patient DayThe Guthy-Jackson Charitable FoundationHilton LAX Los Angeles

,