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听

JINGLE -

大象传媒 Sounds: music, radio, podcasts

KEILIGH -

Hello and welcome to the 大象传媒 Ouch podcast. I鈥檓 Keiligh Baker and this week we have a rather special guest, model, activist, Instagram sensation and encephalitis survivor, Lucy Dawson. Lucy was just a regular healthy student when she became severely ill with a serious and life-threatening condition, but she was misdiagnosed and told she was having a mental breakdown. She was then wrongly sectioned to a psychiatric ward for three months, where an accident led her to becoming permanently disabled at 21. After a long recovery, which included learning to walk and talk again, Lucy not only managed to finish her degree she is now a successful model and disability advocate.

Lucy, thank you so much for joining me today. Your story is quite extraordinary, especially considering how young you are.

LUCY -

Yeah, I agree. Even just hearing your introduction I鈥檓 like oh yeah, that was me, that actually happened. [Laughs]

KEILIGH -

So, let鈥檚 start right at the beginning. You were in your final year at university when you first became ill, is that right?

LUCY -

Yeah, I was two weeks into my first term of third year. And I can remember going to fresher鈥檚 events and everything being completely normal. And then everything goes a bit hazy after that.

KEILIGH -

How did you first start showing symptoms that you were perhaps weren鈥檛 very well?

LUCY -

So, I lived with my two best friends, and I can remember suddenly being really sad all the time, crying all the time. I can picture myself lying on my friend鈥檚 bed just in floods of tears about nothing really. And they tell me that I was crying about things like that I was going to fail my degree and that I didn鈥檛 have a boyfriend and all things that had never bothered or affected me before. I can remember trying to walk into university and feeling like I was really, really faint or really drunk or something. So, I don鈥檛 really know how I was crossing roads and things on reflection. And I can remember being in lectures and just constantly falling asleep.

听

And then one morning my best friend found me screaming her name at 6am, just her name over and over again, like I couldn鈥檛 say anything else. And she rang my mum and my mum said, 鈥測ou need to take her to hospital鈥�. So, an ambulance came and that day I was in the hospital for about half an hour and they said, 鈥渙h she鈥檚 just having a panic attack, she鈥檚 stressed out about university鈥�, and sent me home with some breathing exercises. And by the end of the day I rang my mum and my sister and I apologised, and I said, 鈥渟orry, I鈥檝e just been really worked up鈥�, and it was as though I was okay again.

And then the next morning the same thing happened but about a million times worse. So, when my housemate, Becks, came in my room I鈥檇 absolutely torn it to pieces and I was sat in the middle of the floor with all my belongings around me just rocking backwards and forwards, and she said my eyes were absolutely wild. Again she rang my mum, and this time my mum and dad were so worried that they drove from Lincolnshire to Leicester that morning, and when they go there they were really horrified by what they saw. Straightaway they asked my two housemates, 鈥渉as she taken anything or is there a possibility that she鈥檚 been spiked?鈥� They say my housemates down and my housemates were like, 鈥渁bsolutely not, no chance鈥�. And so they put me in the car and I was absolutely manic, like manically giggling one second and then just repeating words that made no sense. And once the car was going down the motorway I tried to get out of the car, tried to escape. So, my mum and dad were obviously frantically trying to get me in somewhere.

听

They managed to get me into a hospital. Again in the waiting room my mum had to actually sit on top of me to restrain me because I was really, really wild. I think I鈥檇 ripped curtains down from the hospital. So, when the doctors saw me they said 鈥渢here鈥檚 something seriously wrong with her鈥�, and my mum and dad were like, 鈥渞eally? You don鈥檛 say!鈥� And basically they sectioned me straightaway under the Mental Health Act and basically said, 鈥渟he鈥檚 had a mental breakdown鈥�. Obviously I hadn鈥檛 had a mental breakdown, and the story that was painted it was like clutching at straws, but because I couldn鈥檛 speak for myself they ran with that because my mum and dad aren鈥檛 doctors, and they were told go find out why she鈥檚 had a mental breakdown; and this was the only storyline they could go with, if that makes sense.

KEILIGH -

Do you remember all of this or is this just what everyone鈥檚 told you afterwards?

LUCY -

The lead up to me being ill I have these awful flashbacks of being in my bed and every time I closed my eyes, every time I fell asleep I thought I was being chased in a forest. I had this really vivid memory of running, being chased from something and kept falling over, tripping and falling over. And I would wake up and I would reach out to grab my phone and the second I touched my phone or the second I touched my laptop they would vanish, they would disappear; these were like these really strange hallucinations I was having. Because part of the disease that I had you have hallucinations.

听

The summer before this I was having migraines every single day, but not just migraines, migraines that nearly paralysed one side of my body and they would make me sick. But I thought oh, it鈥檚 because you鈥檙e not drinking enough water oh, I used to be menstrual migraines, I thought oh it鈥檚 to do with the time of the month, or oh it鈥檚 because the weather鈥檚 so hot, you haven鈥檛 slept enough. I kept putting it off as being something else. But obviously on reflection that probably had something to do with it.

听

The time in hospital itself, which I鈥檒l get onto, I have memories and flashbacks of different moments in hospital. But because of the nature of the disease I will never know which of those actually happened and which of them were hallucinations. So, for example the very first, well I believe it was the first night, I think that one of the other girls in the ward hit me because I got in her bed by mistake. There are medical records that I had bruises on me the next day. But I still couldn鈥檛 tell you for certain if that happened or if I imagined it.听

KEILIGH -

That just must be so terrifying for you knowing that you鈥檒l never actually know which of it was real and which of it wasn鈥檛.

LUCY -

Yeah.

KEILIGH -

It does sound like someone鈥檚 nightmare.

LUCY -

Yeah, it was really. And then because I was in the hospital for three months so there鈥檚 definitely weeks at a time where I have absolutely no clue what was happening, like I could not tell you a second of it. But I do have these memories of consciousness here and there where I remember bits and pieces.

KEILIGH -

And this whole time you were in a psychiatric ward, is that right?

LUCY -

Yes, I was in the women鈥檚 ward, so there were probably about 20 other girls in there; I was the youngest. And I don鈥檛 mean this to sound in any way nasty, because it鈥檚 none of their fault, but being not mentally ill in a ward of mentally ill people who had very severe and varying conditions that in itself is very traumatising. The things that I witnessed I should never have had to have seen.

KEILIGH -

Can you tell me a little bit about how you got your leg injury?

LUCY -

It鈥檚 worth reiterating that I didn鈥檛 have a mental breakdown; I had a brain disease, a rare brain disease named anti-NDMA receptor autoimmune encephalitis, which is inflammation of the brain which results from the immune system attacking itself. It鈥檚 called friendly fire, so the brain thinks that it鈥檚 attacking bad cells but really it鈥檚 just attacking itself. And this stops all your autoimmune processes, so blinking, breathing, swallowing, everything slowly turns off and goes. But first it really changes your behaviour completely; it sort of makes you a completely different person.

听

The first month or so that I was in there, like I say, I was completely wild, I was really aggressive to the nurses and to my family, swearing at them all the time and completely a different person to anyone who I had ever been. But as well as being aggressive it made me very childlike, like a toddler in an adult鈥檚 body. That sort of peaked as an absolute high of bizarre behaviour, and then just suddenly dropped off and presented as my body shutting down. So, slowly I became catatonic, which is where you鈥檙e in a rigid stupor and you can鈥檛 feel your own body. And that was when I sort of became slowly, slowly more vegetative.

So, my 21st birthday was 18th November that year, and this all started mid-October, and by my 21st birthday the doctors said to my mum and dad, at this point I鈥檇 been pumped with all psychotic drugs and everything for this fictional mental breakdown, they said, 鈥渟he鈥檚 dying, she鈥檚 going to die and we don鈥檛 know why, and we鈥檙e running out of things to do now, so as a last ditch attempt to save her we can give her ECT鈥�. Which is electroconvulsive therapy, which isn鈥檛 something which is really used very often anymore; it鈥檚 shocks to the brain. I have no recollection of it and I鈥檝e never researched what it is. But it鈥檚 a really prehistoric treatment. So, on my 21st birthday I had three rounds of ECT. This is not a treatment for encephalitis by any means, but by some miracle it triggered tonic chronic seizures in my brain. And again, this would never usually happen, and I don鈥檛 know if it was because of my age or because I was relatively healthy and everything, but for some reason these seizures sort of shook my brain into resetting. So, they put me back on my ward bed. And this would be a great time for the story to end, and had it ended here I would have an acquired brain injury, which would still be absolutely awful and traumatic, but it would have been nature鈥檚 way, it would have been like any other illness. But unfortunately they put me back on the ward bed and I had such a big seizure, and they left me alone, and there were four pillows underneath my head and the sides of the bed were non-existent, so I had such a big seizure that I fell over the side of the bed and next to me was an open radiator pipe, and like I said it was the end of November so this pipe was as hot as it would ever be, I was catatonic, couldn鈥檛 feel my body, so I just laid on the pipe burning away. I believe I was on an oncology ward at that point, I鈥檇 been wheeled into one of those, so there were a few elderly cancer patients on the ward, and one of them eventually screamed for help. I have no recollection of that.听听

听

But the next part of the story I know from my parents. My dad came to visit me when I was just slowly starting coming round from the ECT, and he said as soon as I gained a little bit of consciousness I was absolutely screaming in pain, crying out in pain, but nobody really said why. And at that point my behaviour had been so erratic and strange that it just sort of fit in that it was another thing that I was doing. But he told my mum that I鈥檇 had a little fall but nothing really more was said. So, it wasn鈥檛 until I was discharged from hospital and they gave my mum some dressings and some cream and said, 鈥渙h she鈥檚 got a little burn鈥�. Well, when my mum got me home and saw the little burn it was 11cms, it was a third degree burn through the dermis and the epidermis of the skin, absolutely blistered, bloody, raw, like she was absolutely horrified. I was still so out of it. I was aware that my leg didn鈥檛 feel right, that it wasn鈥檛 working properly and that I was in a hell of a lot of pain, but I couldn鈥檛 really verbalise or explain because obviously, like I said, I had to learn to talk and everything again.听 That was explained to my parents that it was just part of the encephalitis that my body was slowly waking up. So, that was what we were told.

听

I was sent home. At first I had a wheelchair and at first I had a big moonboot and all these varying splints. About a year and a half maybe later, after so many appointments with so many different types of doctors being told, oh just keep waiting, I had a chance meeting with a rehabilitation doctors, and it was a locum doctor, my regular doctor was away, and she asked me the backstory of what had happened, and I told her about the burn on my bum and everything and about my leg. She asked me to see the location of my burn, and she basically told me, 鈥渢hat burn is the exact place, the exact size of your sciatic nerve鈥� and she told me that some people鈥檚 sciatic nerve splits a different way to other people鈥檚, and if I was one of those people then that would explain why the bottom of my left leg was now paralysed. I managed to get that confirmed by my neurologist. And again many years later we got full admission that that was most likely what had happened.

KEILIGH -

And so at what point did the doctors say to you and your parents, 鈥渙h, she hasn鈥檛 had a mental breakdown, it was encephalitis鈥� when was that clarified?

LUCY -

So, I went into the mental health psychiatric ward in October, I was discharged in December, and then in January, I think maybe January 17th 2017 in an appointment with my neurologist that was the first time we ever heard the words encephalitis. And then again it was up to us to go and look up, well what on earth is that. I鈥檇 never heard of it before; my family had never heard of it before.

KEILIGH -

And I understand that obviously it can be quite hard to pick up on, can鈥檛 it, but were you ever given a reason by the doctors why it took them so long to realise what was wrong?

LUCY -

No, because it is commonly misdiagnosed, which is ridiculous because all it takes to diagnose it is a blood test. But my opinion is that they see a young girl at university, first thought is she鈥檚 taken drugs, second thought is, oh it鈥檚 a mental breakdown because general identifications of mental illness.

KEILIGH -

So, Lucy, I know that as a result of your time in hospital you now live with mobility issues, you use a splint and a walking stick, but what were the effects when you immediately got out of hospital back in early 2017?

LUCY -

I was just asleep for about 23 hours a day at first. I just wasn鈥檛 living any kind of life really. I didn鈥檛 recognise people at all. I was so confused, so exhausted, and yet I couldn鈥檛 really communicate anything. I couldn鈥檛 go upstairs. I was sleeping on my mum and dad鈥檚 sofa. I had to have a commode and everything because I couldn鈥檛 mobilise. My mum had to help me bathe every day; she had to help me get in and out of the shower. I was just stripped of any independence because of what had happened.

听

It was my grandparents who, as I slowly started to become a little bit more engaged, they started trying to get me to go on these tiny little walks every day, like they would really support me, and I had crutches and I had a splint. Tiny, tiny steps at first and slowly 鈥� I mean, this was going on for about two years 鈥� so you can imagine slowly trying to build up a little bit more, a little bit more. My grandpa was a teacher when he was younger, which it was such a blessing, because basically the hospital let me go that day, I had so many appointments for so many different things, but none of them were to help me, none of them were, I say I had rehabilitation, but none of them were to help me live again, none of them were to re-educate me on life and how to speak and everything again. It was left up to us. Some people would tell me I鈥檇 never walk again, some people would say give it to years, you鈥檒l be absolutely fine. It was so heavy on my mental and my heart and everything, just constantly being given a little inkling of hope and then having it pulled away. It made me such an angry person. I was so nasty to my mum because I was so frustrated. It really, really just made me so depressed.

KEILIGH -

[Music] We got in touch with the Lincolnshire Partnership NHS foundation trust who told us, 鈥渨e are truly sorry for any care that fell below our expected standards and the impact this has had on Lucy and her family. We are committed to delivering high quality safe patient care, and have a robust internal investigation process in place to learn lessons for the future鈥�.

LUCY -

Two years later I went back to university and I finished my degree. I got through it all; I still don鈥檛 know how I did it but I did. I was getting a 2:1 before I had a brain disease, [Laughs] I ended up getting a 2:1 overall.

KEILIGH -

And so you got your degree and then the modelling started to take off.

LUCY -

Before I was poorly I was so obsessed with make-up and being glamorous and everything, but I was so insecure because people at school weren鈥檛 very nice etc. So, I would always have this full face and this full look of being glamorous. So, when I came round I can remember being laid in my bed at home a few months later and looking up at my desk and seeing this box of make-up. And again it broke my heart because as I鈥檇 lost all my ability to do anything that included motor skills, so blending eyeshadow and things. I would have had no idea where to start with putting on make-up, which was so sad because it was something that I always loved. And I was looking at myself in the mirror and I was disgusted. Weight isn鈥檛 the be all and end all, and I know that now, but when I was in hospital I was being fed through a nose tube so I鈥檇 lost absolutely loads of weight because I wouldn鈥檛 eat anything at all. And then when I came out I was on so much medicine and not able to move at all, so I absolutely piled on so much weight. I was just looking at someone that I didn鈥檛 recognise. I just really, really hated myself again. And obviously I couldn鈥檛 do my make-up, couldn鈥檛 do my hair. Again it鈥檚 those little things that make you feel like yourself, make yourself feel good, I just couldn鈥檛 do.

KEILIGH -

Yeah.

LUCY -

At first I鈥檓 sure my make-up looked an absolutely state [laughs] but I just kept probably watching YouTube videos and trying things out. I鈥檓 by no means Charlotte Tilbury now but I try my best. [Laughter]

听

So, the modelling, my agency is called Zebedee, they only represent disabled models, actors and talent, and I鈥檝e been with them about a year and a half. It started off because I had a few thousand followers on Instagram and I鈥檇 found the disabled community online, and that was a huge, huge part of my journey, meeting other disabled people my age, hearing other disabled people鈥檚 stories and relating to them and having solidarity with them and everything. And Zebedee just opened my eyes again to the lack of representation of disabled people in the media and fashion. And it really resonated with me because I can remember the first time that I had my phone and would open Instagram, and you are just every day flooded with images of society鈥檚 version of the perfect person. It鈥檚 very rare at the time, I had not diversified my feed at all, like I don鈥檛 think I was following many disabled people at all before I was poorly, so to find all these amazing people who were so beautiful and so deserve a platform and so deserve representation. And again, I鈥檝e met so many amazing people through that so it has been very cool.

KEILIGH -

And obviously you do a lot of lingerie modelling and stuff like that; is that something that you were always interested in?

LUCY -

As I say I was really, really struggling with my body probably till about this time last year. I think one day we had a brief through Zebedee that was about reflections, and you could sort of interpret it however you wanted. And I took the time to reflect on everything my body had done for me, beyond looking a certain way, beyond weighing a certain amount; every cell in my body had fought to keep me alive. And I was like why am I waking up every morning and being so nasty to myself, to my own body which has saved my own life, so appreciating myself a bit more. And I started looking after myself a lot better once I鈥檇 had this realisation. For this brief I decided to, it wasn鈥檛 like risqu茅 lingerie, I was quite covered up, and the messages I got back from it about, I love to see you looking so confident with your disability and everything, and it made me quite empowered. And then brands obviously since then have wanted to work with me and everything. And now I don鈥檛 feel any shame about posting in lingerie. Disabled people do wear underwear, believe it or not, but you very, very rarely see any disabled people in any, well you rarely see them in fashion campaigns, let alone lingerie campaigns. And that鈥檚 something that we keep working towards and trying to increase the representation of.

听

Any time that I do work with a brand and it鈥檚 a brand that has a lot of followers on Instagram, if they repost my picture and my mobility aids in it I just think good, because a young girl or a young boy could open their feed and see me on their page instead of the same people that they see on every page, every day of the week, and that might make them feel like yeah, if she can do it I can do it, and look at her, she looks happy, she looks confident with her mobility aid, so why can鈥檛 I be. And I think that鈥檚 so important because I didn鈥檛 have that when I first became disabled.

听

Society tells us all the time that we have to be a certain way, and we won鈥檛 turn that narrative around until society stops telling us that. And the only way that we can make that is if we are louder than society and if we are seen, I can鈥檛 remember who it is that said it, but a disabled lady said, 鈥渨e have to be seen to be heard鈥� and I think it鈥檚 so true: we have to keep pushing. The same with the plus sized community, the same with any marginalised group, you have to keep pushing against the thing that鈥檚 holding us back.

KEILIGH -

Definitely. And I love as well, I know that you have had a big part in the Disabled but Sexy campaign, which like you said, unless you diversify your feed you鈥檙e unaware that there鈥檚 this whole subculture of really empowering, amazing people doing such good stuff on social media.

LUCY -

Definitely.

KEILIGH -

And you鈥檙e a big part of that, so that must feel amazing.

LUCY -

Someone messaged me one day saying, thanks for reminding me that disabled and sexy are not two mutually exclusive terms. And I鈥檇 put the hashtag that day on Twitter, and I believe it already existed, but I didn鈥檛 know at the time that it already existed but I鈥檓 pretty sure it already did, so I don鈥檛 want to take a credit for that one. [Laughter] But any time that sort of thing can come up and disabled people can share their pictures of themselves and everyone can see it I think it鈥檚 cool. And if it makes one person feel more confident in their disability, which it does because I know it does because I get the messages and I see the tweets, I think it鈥檚 awesome.

KEILIGH -

100%. I feel that leads us quite naturally onto social media. I feel that you鈥檝e got a bit of a love/hate thing going on with social media. You鈥檝e got 45,000 followers on Instagram. Do people ever recognise you in real life?

LUCY -

Oh, I don鈥檛 go anywhere in real life. I don鈥檛 think I did since last year! [Laughter]

KEILIGH -

That鈥檚 true actually, isn鈥檛 it, true for all of us; that is actually a good point. How do you find it? How do you deal with that level of interaction with your posts and everything?

LUCY -

Like I say, any time that I can make a little wave by reposting on someone鈥檚 page or getting a nice message from men and women about feeling good because they鈥檝e seen my post I absolutely love that. Of course whenever you鈥檙e on social media you open yourself up to negative comments. Instagram is pretty calm. I think I have 180,000 followers on TikTok and that鈥檚 where the real nasties live. But I鈥檓 pretty comfortable in myself that I can take it.

So, for example if someone鈥檚 nasty about my looks these days, whereas before I was poorly that would have ruined my entire year, I would have dwelled on that for so long, but because I鈥檝e been through so much you鈥檙e able to rationalise the importance of certain comments. And that鈥檚 not to say that comments about appearance online are not absolutely awful, but they鈥檙e not the ones that bother me anymore. The ones that would bother me more are the ones, for example someone recently commented on one of my videos about my disability saying, you should have died, now that, that鈥檚 a step too far for me. Or the ones that frustrate me, I mentioned earlier this morning, comments telling me that I鈥檓 lying about my disability and things like that, I just think that鈥檚 ridiculous. I don鈥檛 know why people are so keen to out people for faking disabilities. I鈥檓 definitely not faking my disability, and I think it鈥檚 really rude because obviously I鈥檝e been through a hell of a lot to become disabled and I don鈥檛 need some random person on the internet telling me that it鈥檚 fake, because those years of absolute struggle were not fake.听听

KEILIGH -

Do you have any advice for any aspiring disabled models out there who might be listing?

LUCY -

Yeah, there鈥檚 no reason that you cannot be a model just because you鈥檙e disabled. That鈥檚 even more reason you should be a model because we need more representation; we need to be seen more. So, my advice is if you want to be in the community just go for it because you really have nothing to lose.

KEILIGH -

Well, on that note Lucy I think that you鈥檙e going to have really struck a chord with so many people, so thank you so much for joining us today and for sharing your story.听

听

[Music] Don鈥檛 forget to subscribe to the Ouch podcast on 大象传媒 Sounds where you鈥檒l find hundreds more disability conversations. And you can get in touch with us by emailing ouch@bbc.co.uk or find us on Twitter and Facebook @bbcouch.

听