[Music] that state of simplest form of awareness alone is worthy of seeing hearing contemplating and realizing from the upanishads trying to remedy [Music] so [Music] so that day i was going to meet my sister for lunch i emailed her that morning just to confirm what time and i didn't hear anything back thinking it's really strange i know she hasn't got back to me you know because i'd also texted are you okay which is like quite a strong um message and i i was sure that she would text back usually you know she comes into work every day she didn't come in on the monday and i thought it was a bit weird i walked like four or five minutes to where her flat was and that's where jan was with ant looking more and more confused by what was going on we tried to bang on the door shout but she wasn't responding i remember jan kind of calling out lobster [Music] what was going through our minds was that there's only one reason why i should still be in a flat [Music] at that point i decided to call 999. the police arrived together with the landlord who had a key and there was this very strange moment of like the police holding yan back a bit saying do you want us to go in first the guy who opened the door not wanting to be the first guy to go in there it was all very strange and yan just said i'll go i'm going in [Music] the flat was just looked like some serious chaos that happened you know i was like [ __ ] where is she everything was topsy-turvy there was clothes everywhere there was vomit and excrement everywhere the fact that she wasn't there was sort of a relief but then the next question was where is she lord has always been quite good at going somewhere to adventures and experiencing go and seeing friends so i've had this throughout my life where is lotte has been a quest you go you know you go to the supermarket and you you pick something from the chef where is locher somebody at royal london fitted lodge's description they couldn't identify her because she wasn't able to speak the police that i'd called and the police at the royal london managed to sort of work out that this was my sister to see a young patient who is semi-conscious who is actually becoming more unconscious as time goes by with the speed that she was deteriorating really you're faced with a situation where you have to decide to act urgently and save a life we arrived at the hospital where it was explained that nokia was undergoing some kind of very severe medical emergency to her brain and that she had a very high probability of dying she had an intercerebral brain hemorrhage my initial reaction about this was that this was a very large blood clot and it was immediately life-threatening i must say that a lot of these cases are so severe that it isn't possible to intervene or if you do you are unsuccessful the surgery involved an incision on the scalp the removal of a small window of bone approximately that size just a small cut through the brain substance itself to reveal the blood clot and then to remove as much of the blood clot as possible now that doesn't necessarily mitigate the damage that's been done by the bleed into the brain that is damage that is done and can't really be reversed the commonest type of stroke is actually an area of the brain that is starved of oxygen and loses its blood supply notch's type of stroke is a bleed into the brain substance most of them are caused by either an abnormal blood vessel that may be developmental it can be blood clotting abnormalities and there are a lot of rare things that can cause it there are still some tests to be done later down the line but at the moment we don't have a clear cause for why this happened it may well be that we never find one and it may well be we never know the cause they kept her artificially asleep it seemed that they had no idea if they'd even be able to wake her up or if she woke up or what her functions would be so during that whole 24 hours we literally had no idea what the outcome would be okay i'm alive very badly very messed up but definitely excited to be alive we came in about 10 minutes after she woke up she did talk but she was very confused we're not sure what's gonna happen today it's either gonna be a new plate place or something completely different we're just not sure i was really nervous seeing her and jan had kept saying how you know it's very weird and she's she might not recognize you the fact was she was alive actually that was the biggest i would say look she's alive and she looks great okay right here we are okay i want you to say some words beginning with us you think you can do that so it could be sound or swing or sitting so it's starting from now so summer oh today already she wasn't able to do the tests that they do for these situations so it was becoming clear that there was more severe issues but i mean not knowing not understanding really what those issues were [Music] so why don't you just tell me what's happened i was in in a pretty normal very busy normal kind of a clever person and now i'm starting from the beginning what does it feel like it's extremely strange starting from nothing it's like tripping out i don't really know how to so how do i say it i can't no no this normal world minority i'm very sort of bizarre as a way to to describe and it's difficult to uh i guess i'm not making much sense sorry i wish i could yeah i'll try what about these photographs do you pictures yeah matilda's my is ah my she's i can't my nephew yeah my nephew she's your nephew yes neph you and now she's also a knee and a nephew neith neith i meant niece i for for some reason i can't say the actual word itself this word nutshell yeah a record record yeah exactly so for some reason i can say you say again record record record i can only say if i don't actually s if i go like that then i can say the word record but not you say again record record yeah record i can't i can't say it now but i can't um you know i can't speak or no not speak i can't be clever what do you call it um right yeah right i can't write it at all or be clever or be normal any of that it's it's beyond terrifying [Music] this could be tail not tail [Music] what does that say the yeah oh yeah there does that say that yeah i've written the before i didn't think i would have a problem with the word the a b c d e f g is a x [Music] two this won't be this isn't in my correct dictionary in my brain stew where did that come from my date of birth and i wrote it wrong happy ah okay something's not right here today help that must have been the first row i wrote other than hi the green one is on top of the blue one correct no i can't believe i look an internet page or someone has written to me email and i don't see what it said i know what it says but it's all around complete gobbledygook i can't believe that i refuse to believe that that's happening she was an extremely dynamic extremely social very impassioned individual she had a really really tough job had to be very very organized multitasking loads of things going on at the same time that was her existence communication writing films writing in general and reading you know lots of always reading like these really thick books she's the most articulate person so it yeah it's it's kind of it's almost obscene that this part um has it's affected that part of her brain i think it's probably very alienating she can't interact in the same way with people she gets fatigued very easily mathematical function seems to be impaired which is something that hasn't actually been addressed really at all to this stage but i've noticed it but you know that kind of logistics i don't know the technical terms for it but you know these sort of like logical things that we sort of take for granted my concern i have at this stage is because she's so ambitious and so energetic that she puts too much pressure on herself and that pressure ultimately leads to a situation where you know she gets meltdown basically if i'm faced with the question who am i i'm someone who has a huge amount of friends very hard working travels all over the world loves to read what if all of that evidence is removed what does that make me something's happened to my my vision which nobody's really explained to me yet pretty normal on the left as long as i just keep it on the left if i go on the right side it's like a whole nother dimension [Music] vision to an eternal space it's a heightened sense of reality i don't know it becomes a sort of euphoric notion whether it's my brain or reality i can experience colors and and sounds like i like i wasn't able to before it sounds like this is a very loud sound so intensified so exaggerated everything becomes a momentary experience time has a new meaning it's all elongated and transient you are in this new devastating and extremely scary world that's all yours by yourself to find yourself in this world where everything's altered it's such a such a very strange process because as far as we can see nothing's changed yet it's all changed last time i was in my my former home um it was an extremely disturbing experience you okay yeah oh okay is that one no this one this one oh this is so weird it's like a dream somebody did a very good job tidying it's like um something that i've um changed completely if you see what i mean oh i feel so pukey do you feel i just remember trying to survive and i don't even know i just i do actually remember giving up and not caring and not sorting like i just was like in a terrible state and i didn't know how i could get out of it you're in this weird ex like weird parallel trip thing so it's you can't you can't say you're trying to explain why you can't make a phone call or put some clothes on and sort get out of here you just remember this weird bizarre thing that just got worse and worse into this nightmare and then remember crying which i never cry but being really really upset but not being able to figure out why and how any any of that i just got more more and more upset more sick more ill and more like into this nightmare i hated the idea that she would she'd gone through this all by herself and just laid down in her bed and like was ready to die and then something got her up and she didn't she got up and you know that's how that's why she she gets up every day and bumps into a wall and is reminded of what's going on but she just did she does it and she keeps going i haven't lived with my mother since so i was 18. so now i'm twenty 30 4.
so 34 years old now we live together i mean i've never thought much about the brain before at all i mean this is called a quiet brain injury but it's in a quiet new world at the same time it's very difficult for anybody to understand for her friends and for anybody around her because when she says herself she said the other day she said i feel like a baby but you know i'm a grown up and it's two things at the same time you know i need to nurture my body and i need to have a rhythm in the day and you know just like a child otherwise i can't function at all on the other hand you know everything's there already it's very very difficult to understand i i can keep thoughts and ideas and thought process that that uh have are partially finished and partially need to keep going but but they disappear so when i can start to be able to write i thought instead of having them disappear into thin air which which is horrible i'll try to write them the problem is of course is that i can't spell so i don't know if that's the real word i do mixed up dreams of the stroke the clock strikes the stroke of the clock and then creepy mice your dreams have a real new kind of realness to them that before they were just strange and you kind of get confused between um what's real and what's in your head keep looking at my eye i'm going to bring this little target in from the outside just say yes when you see it coming into view now now now you see how much better the field is on this side compared to this side when you had your injury then that's okay i'm sort of looking around to who this person is talking to i don't know who they're referring what they're referring to and i don't know um how to respond to what they're saying it will take half an hour to work i wanted to ask you why you wanted to film this why did you get in touch with me a lot of people in your situation would just be thinking about their recovery and recess was recording everything and i'm unable to remember anything so it's like i think it's part of the brain has become unable to um remember things you become obsessed with recording it because you just terrified that it's going to get lost in order to make sense of it i want to record it that is a hilariously kind of surreal reality to to it it's surreal it's surreal and um i don't know if it's your neurological i don't know it's not me it's that's what happened that's what it feels like it's like um you know you think about um you know you think about david lynch and things like that a lot it's like being in the red room in twin peaks i've been having imaginary conversations with him in my head dear mr lynch my name's lotus sutherland and i live in hackney in london two months ago i had an inter-cerebral hemorrhage and lost the use of my reading and writing which is why i'm sending you a video message it's like that i meant a new dimension as an exquisite painful sometimes like a nightmare place inside my head but it's also somewhere where i can get completely lost inside this beautiful and extrude extraordinary new place that i myself discovered where my brain once was so i'd love to share it with you because i think you're gonna like it i'm going on a fun trip i only found out three days ago that i was going to go there this might be very very difficult for me to actually i can't process the um the the concept the reality of of going to live as an inpatient in a neurological place hospital full of ill people like me just to imagine that i'm with a friend going somewhere fun like it would be before and maybe it will be after and there's going to be some very serious moments inside it but there's no point in trying to imagine them because my brain doesn't have the capacity to compute so to compute something to anything like that is is stupid is pointless it's stressful and and counterproductive okay so are you ready for the final countdown i'm ready but the question more importantly is are you ready well i've got no sense of space and time so it's fine for me we have a very close relationship i mean we've had a very tumultuous life and we've shared quite a lot of that so i think that's why we're quite close our parents weren't together so i was brought up by my mum and our childhood was an unconventional adventure but i always knew i could depend on yan for anything i wonder if they'll be allowed outside what do you think i think they don't tend to put let people outside from their secure unit he has a great sense of humor that makes an enormous difference and he'll always be like that he's been like that since the beginning even in the hospital he'll be funny and he'll make me laugh even if i can't even laugh myself if i still smoke cigarettes i'd be allowed up i don't know if they would i think you might be tied down until you've given up smoking how do you get out i'm in i'll show you about to be admitted we want to say goodbye to the world especially me because i'm not coming out maybe i'll be in the pre improved specimen [Music] okay [Music] um hey sophie quick hello from the lou trying to go back to being in hospital after being away for almost two months um trying to get around the psychology of being a patient and being reduced to be equal with everybody else he's in there with me i'm feeling very fortunate um i'll send you a picture of dinner which was at 5 30 p. m i'm going to bed in just under an hour have a great evening [Music] the silence in the head doesn't exist [Music] it can happen to you it could happen to me it seems to be fairly indiscriminate and that's quite a reality to behold i think point to your forearm than your shoulders more than my shoulders [Music] shoulders close shoulders it's hugely confrontational because unless you challenge what someone can't do you won't improve it this of is vulnerability strength and what a person what a human has aphasia which is an impairment of language she has this difficulty sequencing sifting information knowing what's the most important thing where were you i was um in intensive care and it seemed like night time and my brother was there and my mom i didn't understand why i wasn't able to talk to them i guess that's just the beginning that's the beginning [Applause] dude sit right but yeah this is going to take forever no it does it takes as long as it takes getting really difficult to be other people's property property people taking over my plans my life doctors telling me things that i don't understand but still being at that stage in life where obviously i should be able to take control of myself and responsibility with people hijacking yes touch typing using shortcuts are coming back to me like magic so i know i can rely on those you do it automatically it's automatic now you know for a long time it was like one one another at a time so look back at my words they will have disappeared and maybe especially because i can still write because that's that thing that is quite the most um intuitive part of all of this we think of reading and writing as being almost the same thing you write something then you read it but for the brain it doesn't work like that at all you know it's a very different it's a different process that is not all obvious because it's a different part of the brain it's because the pathways are a little different to write something you don't need to necessarily just see it but to read it as the visual part of the brain that is now having trouble so your brain can see the words but the connection between the seeing part of the brain and the language part of the brain has been disrupted but the lat with the part which goes from the language part of the brain to the motor part of the brain to write it is fine so you can write it and then when you read it there's a blockage yeah okay update yourself note to self this is not step backwards this is an enormous step forward this is progress mass progress the other one was just an illusion a comfortable illusion this is an uncomfortable reality psychology of recovery escape i ran away kidding one of the nice ladies said i was allowed however don't get lost my weekly timetable occupational therapist language therapist psychologist and a psychiatrist and i'm not sure which is which you know this video communication is really amazing for people who are away here i am in the brain room exactly what lacha was doing before she communicates with everyone via video and she just makes me laugh this is where i perform my leisure activities and this is where i like to play a snooker or write some music i have to come here sometime it's a real hoot i really want to know what that says hey adam hello how you doing you're wonderful what are you making i'm not making i'm creating what are you creating for my son you're my only friend here adam i'm your only friend here at the rniu yeah well we've got a good friend that's what life i say i'm not wrong there adam a very good friend he looks forward to going home going into the real world i'm i'm looking forward to it yes but i'll deal with it when i get there because i've been out there for a long time think it's gonna be all right yeah knife is what you're making is what you've made martin magical martin i'm going to read okay see um see if i can do it without messing up okay yeah in this case the writings of the incredible mr lynch that i'm dying to get my head around within every no we've been within your own self is a treasury an ocean of pure bliss consciousness intelligence creativity love happiness energy and peace within every human being of pure bliss yeah experience that and you will begin to know yourself which is unbounded eternal totality [Music] excellent yeah i think that's wonderful it means we you have it all in us don't need to search too far yeah just uh have a look inside and hopefully we'll find what we're looking for that's it yeah i think that's great it feels like a door is opened a brand new door it's in the middle it's open don't slip me in not to tell sophie or someone this is your towel that's it this is your towel too i should have bought a bag really it's all right we can i can carry it what are you thinking about now can i just show you how these organizational skills have massively improved i think you're very distracted right now you're not thinking about the task in hand at all yeah right if you have a brain hemorrhage you focus on the things that you should be focusing on or ignore everything else pretty handy in fact i'll be sure to have one soon it's been a very very very very very very very hard process to be here i am different than i was maybe i'm never going to be the same that's only really just occurred to me but i'm still hoping that it's not true where i'm going to end up how i'll end up when it comes to romance my life work you know those are the things that you start freaking out [Music] this is a book for people who can't read it's got all pictures in it you see you can't read neither can i i can't read it dear mr lynch i'm writing to you from victoria park in london i'm worried that i've used up the limit of my intelligence and it won't develop any further from here that make problems in the trajectory of my future definitely if i can't do writing or reading very curious what do we have here headline a very long and very interesting looking article about reprogramming our brains transcranial stimulation which sounds very scary but that is exactly what i have just signed up for and when i've done this fabled therapy i'll be able to read maybe like that this piece is great this is basically a battery when it very first switches on you can feel a bit of tingling so you get two pads over there over the head and the current goes between the two pads a lot of the current actually doesn't go through the brain a lot of it just goes through the skin but a small small amount goes through the brain and we think that's the therapeutic bit so for some individuals it works and so for some individuals it doesn't work so well but on a group level it works so we know that work so we're trying to enhance that okay yeah i'm definitely willing to do that okay great yeah i'm super excited to see what the results will be but i'm also fully aware of the fact that this is an experiment that may or may not work i'd love to wake up with a massively improved cognitive ability of course especially around my reading um but and you know if it doesn't work then i've given my body to science how's it feel all right tingling away tingling away all right well let's uh start training you ready yeah okay off you go rain rain yes yes space space assist assist i have to spend a month doing very intensive therapy purple past first the effect is to rewire my brain so that it's able to find new routes to where it used to go automatically panic panic down down past first yes i have to be exposed to words through sound and vision simultaneously so that as i hear the words and i see them i start to reconnect the sound of those words with the sight of those words rescue boy boy wish wish pie kind of a crazy sensation it feels like stinging nettles hard work and they give me this really dodgy laptop to take home to carry on when i get home for an hour every day i'm starting to actually read the word along its length read each letter in the word and the cognition is certainly improving abuse abuse but what do i know i'm just an innocent guinea pig so um didn't have any ill effects after the stimulation yesterday no headaches nothing else like that in the evening no good words words such a sort of flash and living you feeling illegal no happened that's a mistake that's deeply unpleasant i didn't do that before this is new okay run through that block and i'll um get jenny down vlog sock [ __ ] story story next one i'll just hold it down sure what it was probably about 4 p. m loki had called and there was a problem and i needed to get over there very quickly she was squatting outside her speech was very impaired she didn't really know what was going on there was a lot of confusion the ambulance came i explained to them loki's history they asked me questions tried to ask logic questions some of which she could answer some of which he half answered most of which she didn't answer at all lokia was half off the stretcher her eyes turned up you can only see the whites of her eyes her face was purple and she was you know i didn't know what was going on she started convulsing you know these were very violent body movements one of the nurses was trying to sort of keep her on the stretcher the movement just got so powerful that he asked me to help him to keep loiter where she was overall it lasted over a four hour period at that stage obviously you start um i guess you start blaming or you start looking for reasons my whole body is is in shock the whole of my back my arms my legs my my my um sh talk me through what you can remember on monday i went back to queen square for the penultimate time after my my zapping i went home and started my one hour of words repetition bad i started seeing these flashes of color appearing in front of me lots of color repetitive flashes growing bigger and bigger like hallucinogenic uncontrollable growth of color i started panicking and when i thought okay i have to um i don't know what's happening but it feels a little bit like a stroke it's frightening losing yourself being lost in your body i wasn't obviously expecting an epileptic phase epileptic seizures result from abnormal excessive or hypersynchronous neuronal activity in the brain about 50 million people worldwide to have epilepsy and nearly 90 percent of epilepsy occurs in the developing countries okay just i don't have epilepsy do i my vision's distorted but this time it isn't interesting like it was in every november it's scary okay now i'm seeing things on my right hand side things that shouldn't be there i see this phantom object colors are getting brighter and the patterns keep repeating orange no yet double vision amnesia balance disorder disturbance in attention loss of concentration memory [Music] i feel like a stranger here tomorrow i'll talk to ellsmore and see what he says i hope it's not going to be like this for the rest of my life i'm terrified of having an effie agitation depression emotional instability mood swings hostility or aggression insomnia nervousness irritability personal disorders behavioral problems perfect for your condition i would say you were telling me that you you'd had a seizure so tell me what happened there well i've been doing this um electro uh magnetic therapy thing uh i forget what it's see i've gone i've regressed i have regressed since the seizure yeah um but um but yeah it's um yeah some sort of um trans magnet yes i know what you do i don't have much experience with the technique it would not surprise me at all if it were a potential side effect of a treatment but i i don't know for definite brain injury puts you at risk of seizures so you you were at risk of having a seizure with or without that dream and so difficult to say for me whether it was directly related did anyone start you on any treatment for that yeah i have to take it every day and it's for people who have epileptic fit yeah so i don't know if that you know if that includes me because it might just just have been one-off i hope it was a one-off it's a bit difficult to tell but probably the sensible thing for you at the moment is to be on the treatment and that's the most likely situation where this won't happen again which is i'm sure you would like at the moment the medication can make people a little bit drowsy and feel not quite themselves i remember young my brother's saying uh don't worry you'll be better in a few weeks you know hopefully making that making that assumption and some people do recover from um strokes very quickly but in my case language-wise i certainly didn't so now i'm thinking maybe none of me will recover quickly ever anything can happen at any time to any degree um so i better not have faith in anything um here we are provoked seizure yeah did you ask him about provocation yeah what did he say about that he doesn't really know you know andy ellsworth is a surgeon a brain surgeon okay that's his specialty yeah so anything else needs to be referred to other people in all fairness it sounds like you got no answers from him at all well what kind of answers would you like a some answer like i don't know is an answer like what like okay where these flashes of light i had fits and should should should i have been told that they were he can't answer those questions why not because he wasn't there he doesn't know anything about it other than what i've told him what did he say he said i don't know i was unaware actually myself that there is a very high risk for one in five risk pretty much of this happening anyway if you've had a hemorrhage in the first year after so you know i should have probably been more prepared for the fact that this kind of thing could happen for some reason we weren't i mean as a family and luigi wasn't either i mean there's no way of knowing it's just like just unfortunate well the thing is it's likely to have been a provoked seizure that's a thing but it's just a question of what provoked it [Music] very slowly um i was doing a lot better but then i've gone backwards again since this uh show me if you can read this with this yeah just take your time just john if it was the was the just remind me again how long the the whole thing lasted for when did your speech return and well the thing is that the actual fits happened in hospital i see so it was many many hours was probably about um after the fits lucky slept so by the time she was speaking again was nine o'clock in the evening okay whether uh the seizures were triggered or made worse by the treatment uh is difficult to answer i do have a question sorry which is um the flashes were they seizures or not uh they're they're not seizures per se i think it may be that the brain was sort of primed uh you've got uh abnormal brain there anyway so maybe they conspired to give rise to what was what sounded like a prolonged seizure in a very small proportion of patients generalized seizures can carry a fatality actually and certainly patients can die for example in their sleep from a seizure so generalized seizures certainly need to be treated here i am on my last visitation to queen's square i'm curious to see how much worse off i am than i was before the the fit set in and certainly disturbed and destroyed my brain and my mind so it's a graph it turned out that you had the tdcs in the first week because remember we were blind into that so we had to unblind ourselves and the biggest improvement was in fact in the first week so you can see that your reading speeds actually for both trained and untrained words both of them increased dramatically quite dramatically there so you've gone from an average of around about 2.
2 seconds per word down to an average of about 1.
