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My Beautiful Broken Brain (2014)
[Lynch] That state of simplest
form of awareness alone, is worthy of seeing, hearing, contemplating and realizing." From the Upanishads. -[indistinct conversations] -[fireworks crackling] [Lotje panting] [Lotje mumbling indistinctly] [Lotje breathing heavily] [heavy thud] [Jan] 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 how Lotje hasn't got back to me." You know, because I had also texted, "Are you okay?" Which is, like, quite a strong, um... message. And I was sure that she would text back. [Ant] Usually, you know, she comes into work every day. She didn't come in on the Monday, and, uh, I thought it was a bit weird. [Barney] I, um, walked, like, four, 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. -[Jan] We tried to bang on the door... -[loud knocking] ...shout, but she wasn't responding. [Barney] I remember Jan kind of calling out, "Lotje!" What was going through our minds was that there's only one reason why she'd still be in her flat. [Jan] At that point, I decided to call 999. [dog barking] The police arrived together with the landlord, who had a key. [Ant] And there was this very strange moment of, like, the police holding Jan 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 Jan just said, "I'm going in." [Jan] The flat just looked like some serious chaos had happened. You know, I was like, "Shit, 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?" [Hente] Lotje's always been quite good at going somewhere, to adventures, and experiencing-- Going and seeing friends, so... I've had this throughout my life. "Where is Lotje?" has been a question. You know, you go to the supermarket and you pick something from the shelf, "Where is Lotje?" [voice echoing] Where is Lotje? [machine beeps steadily] [Jan] Somebody at Royal London fitted Lotje'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. [machine beeping steadily] [Andrew] 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. [Jan] We arrived at the hospital, where it was explained that Lotje was undergoing some kind of very severe medical emergency to her brain. And that she had a very high probability of... of dying. She'd had an intracerebral 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. Lotje'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. [Jan] 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, 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 bad at writing... -[woman talking indistinctly] ...but I'm not dead. That's a start. Very messed up... but definitely excited to be alive. [Jan] We came in about ten 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. [Lucy] 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." [whispering] For the possibilities... for life and death. [Jan] The fact was, she was alive. Actually, that was the biggest, I would say... "Look, she's alive. And she looks great." [therapist] Okay. Here. [indistinct conversation] [therapist] Right, here we are. Hmm? Okay. I want you to say some words beginning with... [emphasizing "S"] -[emphasizing "S"] -Yeah. [emphasizing "S"] You think you can do that? Um... So, it could be, um, "sound," or "swing," or "sitting." So, it's starting from... now. [emphasizing "S"] Summer. -Mmm. -Or did I already...? S... Okay. [emphasizing "S"] Seed. [emphasizing "S"] [chuckles, stammers] I get-- I get too... [sobbing] [Jan] She wasn't able to do the tests that they do for these situations. [therapist] I know you're trying your best... [Jan] So it was becoming clear that there was... more severe issues. But, I mean, not knowing... not understanding, really, what those issues were. [Sophie] So why don't you just tell me... what's happened? I was in a pretty normal, very busy, normal... [stammering] Kind of a clever person. And now, I'm starting from the beginning. [Sophie] What does it feel like? It's extremely strange, starting from nothing. It's like tripping out. [voice echoes] I don't really know how to describe it. How do I say it? I can't... [stammering] This normal world... [stammers] Normality. I'm very, sort of... [echoing] Bizarre is a way to describe it... It's difficult to... [clicks tongue] Uh, I guess I'm not making much sense. Sorry. I wish I could... Yeah. I'll try. [Sophie] What about these photographs? Do you-- -[Lotje] Pictures? -[Sophie] Yeah. Matilda is, um, my... Is... [sighs] My... She's... [sighs] I can't... My... nephew. -Yeah, my nephew. -[Sophie] She's your nephew? Yes, nephew. And now, she's also a... A nephew? Neef... Niece. I meant, "niece." For some reason, I can't say the actual word itself. This word. -[Sophie] On that shelf? -Yeah. -[Sophie] A record. -Record, yeah. Exactly, so... for some reason, I can say... You say it again. -[Sophie] Record. -Record. Record. I can only say it if I don't actually... If I go like that... -then I can say the word "record." -[voice echoes] Record. But not... [voices echoing] You say it again. -[Sophie] Record. -Record, yeah. Record. I can't... -[pen writing] -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. [chuckles] -[pen writing] -What do you call it? Um... -[Sophie] Write? -Yeah, write. I can't write at all. Or be clever or be normal. Any of that. It's... it's beyond terrifying. This could read "tale." Not "tale." -[Lotje] What does that say? It's "the"? -[Sophie] Yeah. [Lotje] Oh, yeah, "the." -[Lotje] Does that say "the"? -[Sophie] Yeah. I've written "the" before. [voice echoing] I didn't think I would have trouble with the word "the." A-B-C-D-E-F-G... [Lotje speaking indistinctly] No? -Two? -[grunts] [Lotje] This isn't in my correct dictionary, in my brain. Stew. [chuckles] Where did that come from? -[voice echoes indistinctly] -My date of birth... and I wrote it wrong. Happy... Argh! Okay, something's not right, here, today. "Help." [chuckles] That must have been the first wrote I wrote other than "hi." The green one is... on top of the blue one. -Correct? -No. [Lotje] I can't believe I... can look at, uh, some words... -[repeating] Pen. Pen. Pen. -You know, a book or Internet... an Internet page, or someone's written to me an email, -and I don't see what it says. -[Lotje speaks indistinctly] I know what it says. But it's all-round complete gobbledygook. And I can't believe that. [voice echoing] [stammering] I refuse to believe that I... that's happening. [Jan] She was an extremely dynamic, extremely social, very impassioned individual. [Ant] She had a really, really tough job, had to be very, very organized. Multitasking, loads of things going on at the same time. [Anita] That was her existence. Communication, writing films, writing in general and reading. You know, Lotje was always reading, like, these really thick books. [Lucy] She's the most articulate person. So, yeah, it's kind of... [chuckles] ...it's almost obscene that this part, um... it's affected that part of her brain. [woman] So, today. It starts today, your holiday. [Jan] 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, up to this stage, but I've noticed it. You know, that kind of logistics, I don't know the technical terms for it, but, you know, these, sort of logical things that we take for granted. A 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. [Lotje] 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 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. [voice echoing] Vision to an internal space, an inner world. 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 sounds like I wasn't able to before. -It sounds like a very loud sound. -[loud noises] [people talking loudly] [siren blaring] 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. [Barney] 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 for her. [Lotje] Last time I was in my... my former home, um, it was an extremely disturbing experience. -[man] You okay? -Yeah. Oh... Okay. [exhales] I can do it... It is that one. No, this one. I don't know if I can do it. I haven't tried it. -[man] Must be the other one. -This one? [man] Mmm-hmm. There. Oh, this is so weird! [Lotje] That's okay. [sighs] 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. Ugh, 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... [stammering] 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-- like, weird, parallel-trip thing, so 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 I remember crying, which I never cry, but being really, really upset, but not being able to figure out why and how or any of that. I just got more and more upset, more sick, more ill, and more, like, into this nightmare. [Lucy] I hated the idea that she'd gone through this all by herself... [sighs] ...and just lay down in her bed and, like, was ready to die. And then something got her up. And she did it. She got up. And... you know, that's how... That's why she gets up every day and bumps into a wall and is reminded of what's going on. But she just... she does it, and she keeps going. [speaking indistinctly] [Lotje] I haven't lived with my mother since I was 18. So, now I'm twent-- [stammers] Thirty... four. So... [chuckling] 34 years old. Now, we live together. [Hente] I mean, I've never thought much about the brain before, at all. I mean, this is called "acquired brain injury," but it's an acquired new world at the same time. It's very difficult for anybody to understand, for her friends and for anybody around her, because-- She says it herself, she said the other day, she said, "I feel like a baby, but, you know, I'm a grown-up, and it's the 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. Um... It's very, very difficult to understand. [Lotje] I can keep thoughts and ideas and thought process... [stammering] ...that are partially finished and partially need to keep going, but they disappear. So, when I can start to be able to write, I thought, "Instead of having them disappear into thin air, which is horrible, I'll try to write them." Vi... No. Va... [Lotje chuckles] The problem is, of course, is that I can't spell, so... I don't know if that's the real word. [voice echoing] Isola... Isolation... I dream 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, but 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. Now. Now. Now. Now. All right. You see how much better the field is on this side compared to this side. -[echoing] When you had your injury... -[Lotje] Yeah. ...then that affected just one part... [distorting, echoing] ...on the same part of space in each eye. -Okay. -Okay? [indistinct echoing] Okay. I'm sort of looking around to who this person's talking to. I don't know who they're referring... what, who they're referring to. And I don't know, um... how to respond to what they're saying. It'll take half an hour to work. [Sophie] 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. I'm rec-- I'm obsessed with 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've become obsessed with recording it... -Mmm. -...'cause you're just terrified -that it's gonna get lost. -Mmm. [Lotje] In order to, uh, make sense of it, I want to record it. There is a hilariously, kind of, surreal reality 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... [chuckles] ...things like that a lot. [hands rubbing] [Lotje] It's like being in the Red Room in Twin Peaks. I've been having imaginary conversations with him in my head. [soft music playing] [Lotje] Dear Mr. Lynch: My name's Lotje Sodderland, and I live in Hackney, in London. Two months ago, I had an intracerebral... [stammering] ...hemorrhage and lost the use of my reading and writing, which is why I'm sending you a video message. It's like a dimen-- a new dimension. It's 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 extraor-- extraordinary new place that I've myself discovered, where my brain once was. So I'd love to share it with you, 'cause I think you're gonna like it. I'm going on a fun trip. With my bag. I only found out three days ago that I was gonna go there. This might be very, very difficult for me to actually do properly. I can't process the, um... [stammering] ...the concept, the reality 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 that there's gonna be some very serious moments... [chuckling] ...inside it. But there's no point in me trying to imagine them, because my brain doesn't have the capacity to compute. So, to compute something... to anything like that is stupid, is pointless, is stressful and counterproductive. -[clicks tongue] -[Sophie] Okay. [Lotje] 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. [both chuckling] [Jan] We have a very close relationship. 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. [Lotje] 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 Jan for anything. I wonder if I'll be allowed outside. What do you think? I think they don't tend to, uh, put... let people outside from the secure unit. [Lotje chuckling] [Lotje] 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 smoked cigarettes, I'd be allowed out. I don't know if they would. I think you might be tied down until you'd given up smoking. -How do you get out, though, and in? -I'll show you. [Lotje] About to be admitted. You're going to say goodbye to the world, especially me, 'cause I'm not coming out. Maybe I'll be an impre-- improved specimen. [patient moaning] [indistinct conversations] [loud, repetitive machine noise] [indistinct conversations] [chatter continues] [whispers] I'm really... [door closing] Hey, Sophie. Quick hello from the loo. 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 who'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. [loud, indistinct conversations] [swallows] [whispering] 1:00 a.m. [banging] [Lotje whispering] Night-time sounds at the hospital... -remind me of when I first woke up. -[loud, indistinct conversations] And it felt like nobody could hear me and I was invisible. How terrifying that is. Not sure that this is a good idea, but the... but the silence in the head doesn't exist here. Time to get up. [Rebecca] 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, then your shoulders. -Forearm, then my shoulders? -Mmm-hmm. Mmm... shoulders... Close. -Shoulders. -Mmm-hmm. [Rebecca] It's hugely confrontational, because unless you challenge what someone can't do... you won't improve it. [whispering] This is where I learn about the outer reaches... of human vulnerability... and strength... and what a person, what a human is made from. What it's made from inside. [Rebecca] Lotje 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. -Mmm-hmm. And... my brother was there and my mum. I didn't understand why I wasn't able to talk to them. And I guess that's just the beginning-- that's the beginning. [keyboard clacking] [sobbing] I haven't slept very well. They, uh... [chuckles] This is gonna take forever. No, it's okay that it does. It takes as long as it takes. [breath quavering] [voices echoing] [Lotje] Getting really difficult to be... other people's properly-- Property. [clears throat] People taking over my plans, my life. -Doctors telling me... -[indistinct echoing chatter] ...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. But people are hijacking... my whole life. Hijacked, I guess. [stopwatch ticking] 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 at a time. "I look back... at my words... they will have disappeared." Maybe, "Especially because I can still write." Yeah. Because that's that thing that is quite... the most unintuitive 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 process that is not at all obvious. Is that 'cause it's a different part of the brain? [clears throat] It's because the pathways are a little different. To write something, you don't need to necessarily see it. But to read it, it's the visual part of the brain that now is having the 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 path 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. [Lotje] Update to self, note to self, this is not a step backwards, this is an enormous step forwards. This is progress. Massive progress. The other one was just an illusion. A comfortable illusion. This is an uncomfortable reality. [echoing] Cuckoo... Cuckoo... It's all going nuts here at the nuthouse. The psychology of recovery. Escape? And run away? [chuckles] Kidding. One of the nice ladies said I was allowed. So long as I don't get lost. My weekly timetable. Occupational therapist, language therapist, a psychologist and a psychiatrist. And I'm not sure which is which. [chuckles] [Lucy] You know, this video communication is really amazing for people who were away. Here I am... in... the brain room. [Lucy] Exactly what Lotje was doing before, she communicates with everyone via video. And she just makes me laugh. [chuckling] This is where I perform me leisure activities. And this is where I like to play snooker or write some music. You have to come here sometime. It's a real hoot. Really want to know what that... says. -[Lotje] Hey, Adam. -Hello. How are you doing? Wonderful. What are you making? [Adam] I'm not making, I'm creating. What are you creating? A robot for my son. You're my only friend here, Adam. I'm your only friend? Here at the RNRU, yeah. Well, you've got a good friend, that's all I can say. [Lotje] You're not wrong there, Adam. [Adam] Very good friend. Are you looking 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 here for a long time. You think it's gonna be all right? Yeah. Life is what you make it. [echoing] Life is what you make it. -[Lotje] Martin. Magical Martin. -Mmm. -I'm going to read. -Okay. See, um... See if I can do it without messing it up. -Okay. We're a team. -Yeah? In this case, the writings of the incredible Mr. Lynch, that I'm dying to get my head around. "Within every..." No. [chuckles] "Within..." [Lotje] "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." [Martin] Yeah. [Lotje] "Experience that and you will begin to know yourself, which is unbounded, eternal totality." "...to-ta-lity." [Martin] Excellent. Well done. -Yeah. -[sighs] [high five] [Lotje] I think that's wonderful. It means we have it all in us, don't need to search too far. Yeah. -Just, uh, have a look inside... -Mmm-hmm. ...and hopefully we'll find what we're looking for. -That's it, yeah. Mmm. -I think that's great. [Lotje] It feels like a door has opened. A brand new door. It's in the middle, but it's open. It wants to let me in. Note to tell Sophie, or someone. [Jan] This is your towel. That's it? This is your towel, too. I should've brought 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. -What, me? -Yeah. See, if you had a brain hemorrhage, you'd focus on the things that you should be focusing on, and ignore everything else. -Pretty handy, in fact. -[Jan chuckles] I'll remember that. I'll be sure to have one soon. [Lotje] Mmm-hmm. 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 gonna be the same. That's only, really, just occurred to me. But I'm still hoping that it's not true. Where I'm gonna end up, or how I'll end up, when it comes to romance, my life, work, you know, those are the things that you start freaking out about. [boy talking indistinctly] [Jan] Is that one for Auntie Lotje? Yeah. [Lotje] Well, thank you. Is that a leaf? Yeah. [Lotje] This is a book for people who can't read. It's got all pictures in it, you see? -[kid] I can't read. -[Lotje] Neither can I. [kid] I can't read. I can't read. I can't read and I can 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 would make problems in the trajectory of my future. Certainly if I can't do writing or reading... I've had it. Only time will tell. Very curious. What do we have here? Headline, a very long and very interesting-looking article about reprogramming our brains... using crans... No, 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. [speaking indistinctly] Like that? Yes, please, that's great. [Dr. Alex] It's basically a battery. When it first switches on, you can feel a bit of tingling, so you get two pads 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 amount goes through the brain and we think that's the therapeutic bit. So, for some, it works, and for some, it doesn't work so well, but on a group level, it works. So we know that works, we're trying to enhance that. Okay. Yeah, I'm definitely willing to do that. -Okay, great. -Yeah. [Lotje] 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, uh, 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... Um, you know, if it doesn't work, then I've given my body to science. [therapist] Get this all set up and ready. -How's it feel? -All right. -Tingling away? -Tingling away. All right, well, let's start the training. -You ready? -Yeah. Okay, off you go. -[recorded female voice] Rain. -Rain. -Yes. -Yes. -Space. -Space. -Assist. -Assist. I have to spend a month doing very intensive therapy. -[recorded female voice] Purple. -Purple. -Past. -Past. 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. -Past. Yes. [computer dings] 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. -Roar. -Roar. -Rescue. -Rescue. -Boy. -Boy. -Wish. -Wish. -Pie. -[computer dings] [Lotje] Kind of a crazy sensation. It feels like stinging nettles. Hard work, and they've given me this really dodgy laptop to take home, to carry on when I get home, for an hour every day. -Birds. -Birds. -Tough. -Tough. -Soon. -Soon. -Quick. -When... -Tad. -Tad. -Skill. -Skill. -Hope. -Hope. -Dance. -Dance. [Lotje] I'm starting to actually read the word along its length. -[word repetitions continue] -Read each letter in the word and understand the series, the sequence of letters in a joint whole. -Loan. -Loan. -Owl. -Owl. -Need. -Need. [Lotje] The cognition is certainly improving. -Abuse. -Abuse. But what do I know? [sighing] I'm just an innocent guinea pig. So, um, did you have any ill effects after the, uh, stimulation yesterday? No headaches, nothing else like that in the evening? -No. -Good. [Lotje] Words, words, words. So many words. [voice echoes] Words, words, words. Just three days left. [both chuckle] Whoo-hoo! -Stroke. -Stroke. -See. -See. -Dog. -Dog. -Wood. -[computer dings] -Lid. -[computer dings] Open. Open. -Legal. -[gasps] I thought I just saw a flash. May have been... Are you okay? How are you feeling? -Legal. -No. [computer dinging] Happen. [Lotje inhaling sharply] -Given. -[therapist] First mistake. Given. -Girl. -Girl. [gasps] Oh! [clicks tongue] [recorded female voice] Mum. That's deeply unpleasant. It didn't do that before. This is new. -Strike. -Strike. -Winner. -Winner. Run through that block and I'll get Jenny down. -Love. -Love. -Log. -Log. -Sock. -Sock. -Story. -Story. Next one? Uh, just hold it there. -You sure? -Yeah. [Jan] It was probably about 4:00 p.m. Lotje had called and there was a problem, and I needed to go over there very quickly. She was squatting outside, her speech was very impaired, and she didn't really know what was going on. There was a lot of confusion. The ambulance came, I explained to them Lotje's history. They asked me questions, they tried to ask Lotje questions, some of which she could answer, some of which she half-answered, most of which she didn't answer at all. Lotje was half off the stretcher, her eyes turned up, you could 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 movements got so powerful that he asked me to help him to keep Lotje 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. [leaves rustling] [Lotje] My whole body is, um, is in shock. The whole of my back, my arms, my legs, my-my... My, um... [stammers] This. What do you call that? -[Sophie] Hips? -Yes. -Truth. -[computer dinging] [Sophie] Talk me through what you can remember. [Lotje] On Monday, I went back to Queen Square for the penultimate time. After my zapping, I went home and started my one hour of words repetition. -Bird. -Bird. I started seeing these flashes of color appearing in front of me. Lots of color, repetitive flashes, growing bigger and bigger, like... [loud throbbing noise] A hallucinogenic, uncontrollable growth of color. I started panicking. Um... When I thought, "Okay, I have to, uh... 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 fit. [chuckling] "Epileptic seizures result from abnormal, excessive, or hypersynchronous neuronal activity in the brain. About 50 million people worldwide have epilepsy, and nearly 90% of epilepsy occurs in the developing countries." [Lotje] Okay. -[Hente] Just... just... -I don't have epilepsy. Do I? My vision is distorted... but this time, it isn't interesting like it was in Nov-- November. It's scary. Okay, now I'm seeing things on my right hand side. -Things that shouldn't be there. -[indistinct voices] I see this... phantom... object. Colors are getting brighter and the patterns keep repeating. Orange. No. Yeah. No, purple. And green. And they keep growing. [Hente] "Diplopia, double vision, amnesia, balance disorder, disturbance in attention, loss of concentration, memory impairment." -[siren wailing] -[Lotje] The land looks unfamiliar. I feel like a stranger here. Tomorrow, I'll talk to Elsmore and see what he thinks. I hope it's not gonna be like this for the rest of my life. -I'm terrified of having... -[baby wailing] ...another epi. [Hente] "Agitation, depression, emotional instability, mood swings, hostility or aggression, insomnia, nervousness, irritability, personal disorders, behavioral problems." Great medication! Perfect for your condition, I would say. Isn't it? [chuckling] [groans] [Andrew] You were telling me that you'd had a seizure. So, tell me what happened there. Well, I've been doing this, um, electromagnetic therapy thing. Uh, I forget what it... See... [stammering] I've regressed. -I have regressed since the seizure. -Yeah. Um, but... Um, but yeah, it's, um... Yeah, some sort of... -Um, transmagnetic... -Yes, I know what you mean. I don't have much experience of the technique. It would not surprise me at all if it were a potential side effect to the treatment, but I don't know for definite. Brain injury puts you at risk of seizures, so you were at risk of having a seizure with or without the treatment, 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. -Yes. [Lotje] And it's for people who have epileptic fits. [Andrew] Yeah. So, I don't know if that... you know, if that includes me, because it might just have been a 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. Yeah. And that's... the most likely situation where this won't happen again, which is, I'm sure, what you would like at the moment. [voice grows distant] The medication can make people a little bit drowsy and feel not quite themselves. [echoing] [Lotje] I remember Jan, my brother, 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. [Lotje] Mmm... -[Jan] Here we are, "Provoked seizure." -[Lotje] Here, yeah. -Did you ask him about provoked seizure? -Yeah. -And what did he say about that? -He doesn't really know. You know, Andy Elsmore 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... Well, what kind of answers would you like? Some answer. Like, "I don't know" is an answer. Like what? Like, "Okay, what are these flashes of light I had?" "Fits." "And 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. And what did he say? He said, "I don't know." [Jan] I was unaware actually, myself, that there is a very high risk, a one-in-five risk pretty much, of this happening anyway if you've had a hemorrhage, in the first year after. So... [sniffles] ...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 Lotje wasn't either. [Lotje] I mean, there's no way of knowing. It's just like... It's just unfortunate. Well, the thing is, it's likely to have been a provoked seizure, that's the thing, but it's just a question of what provoked it. [Lotje] Yeah. [Lotje] ...very slowly. I was doing a lot better, but now I've gone backwards again since this, uh... Show me if you can read this. [chuckling] -This? -Yeah. [Dr. Afraim] Just take your time. Just... [Lotje's voice echoing] "John... Gifford... was... the... was the..." [Dr. Afraim] Just remind me again how long the whole thing lasted for. When did your speech return? [Jan] Well, the thing is that the actual fits happened in hospital. -I see. -So it was many, many hours. It's probably about-- Um, after the fits, Lotje slept. So by the time she was speaking again, it was nine o'clock in the evening. [Dr. Afraim] Okay. Whether the seizures were triggered or made worse by the treatment is difficult to answer. -[Jan] I have a question... -[Dr. Afraim] Yes? ...which is, um, the flashes, were they seizures or not? -Uh, they're not seizures, per se. -[Jan] Mmm. I think it may be that the brain was sort of primed. Uh, you've got, uh, abnormal brain there anyway. So it may be they conspired to give rise to what was, what sounded like a very prolonged seizure. In a very small proportion of patients, generalized seizures can carry 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 Square. Curious to see... [sniffles] ...how much worse... off I am... than I was... before the... the fits set in... and certainly disturbed and destroyed... my brain and my mind. [exhaling] [Dr. Alex] So, this graph... it turned out that you had the tDCS in the first week. 'Cause, remember, we were blinded to that, so we had to, um, 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, um, both of them increased dramatically. -Oh, wow. -Quite dramatically there. So you've gone from an average of around about 2.2 seconds per word down to an average of about 1.5 seconds. That's about 40% improvement in reading speed, something like that. -Wow. -Yeah. -So that's quite impressive. -That's great. -So that is good news. -Thank you. Well, it's all your hard work, really. And we would predict this. So, generally speaking, there's a big effect of practice. But there's a hint here that there's an effect of the tDCS. Scientifically, it's unfortunate because you had the seizure, that the last time point would've helped us. So, if you hadn't had the fit and you had gone down again here, in other words, you'd improved again, that would've been good evidence that there wasn't a real effect of the tDCS, but because we lost that last time point, we can't really answer that question. I'm sorry about that. [chuckling] It's not your fault. Absolutely not your fault at all. [Dr. Alex] The data that we got from you, we are very encouraged by. And we're using this to put together a grant application to, obviously to do it in more subjects. So all of this stuff, you know, promising, but not conclusive, is gonna go into an application to try and do it on a bigger level. [Lotje] Did I understand correctly that, um... you're not going to be testing any more zapping on brain hemorrhage people? [Dr. Alex] Yeah, I think we'll... We'll probably put that in as one of the exclusion criteria. Obviously, we want to be safe, but on the other hand, if you exclude a load of people in these studies, then when you finally publish it, um... there will be no evidence for a certain proportion. So I'm always a little bit wary about excluding people, because as soon as you start excluding a certain type of person, it then means that whatever you find cannot be generalized to those people. Okay. I wouldn't want to be, you know... I wouldn't want to contribute to people missing out on potentially helpful treatment. But, um... But, yeah, at the same time... -Uh, well, it's not... -...having a fit isn't fun. It's not really a decision for you or a decision for me. There's a group of us, and, ultimately, it's down to the ethics committee. So they decide what is safe and what isn't. I mean, if there is a safety issue, then, surely it's a good thing to exclude those. [clicks tongue] I think it's something that we're all discussing. -Yeah. -Okay. [Jan] Okay, so it didn't work. Is that what you're hearing? [Lotje] No, it did work, there's a 60-- There's 40% increase of improvement in the first week. [Jan] Okay, I can't read this, then. Can you explain it to me? [Lotje] Do you see... Do you see... I mean, to be honest, I have no fucking idea. [Jan] So basically, if the red line-- [Lotje] There's a 40% increase in the first week, and then it flatlines out. [Lotje] It terrifies me that death can just spring up out of nowhere, and, um, threaten to take me away. I mean, that could happen to anybody at any time. [upbeat music playing] [Lotje] My first holiday since my brain was broken with the magical Miss Lucy McRae. This is undoubtedly the cure. The brain needs to be quiet to perform its function. Quiet. I feel much closer to my consciousness, a much more raw closeness to the self that is the essence of me. If the physical body, the brain, is damaged, does this extend to damage to the self? I need to be comfortable with... with subtle, or some may say "unsubtle" differences between who I was before and who I am now. In meditation, I've discovered the fragility of the mind and also its limitless resources. And in that discovery, I've become empowered. The silence, solitude. Salut. [approaching footsteps] [man speaking indistinctly] [both chuckling] [man speaking indistinctly in French] No, a film. [chuckling, speaking French] Ah, it's me. -[Lotje speaks French] Is it your garden? -Yes. Ah. It's very peaceful here, there's no noise. [man chuckles] I'm here every day and there's no noise. Apart from when I'm on my tractor. [Lotje] Yeah? Yes, I mean, the tractor makes noise. Or when I use the trimmer... To cut the grass. But otherwise there's no noise. [Lotje] No. [Lotje speaking English] Just breathe. Don't panic. Let go of fear. [Lotje breathing deeply] Okay. I hope to be able to share with you some insights from my own recovery of, um, my intracerebral brain hemorrhage. Cognition seems a very complex and mysterious thing, um, that I've tried to get my own head around. So I hope I can share some of those insights with you, but I'm not sure if I can. [chuckling] Um, I think one of the challenges, probably, for therapists is to... to just deal with the fact that you... you know, you have to work with somebody who is being assessed and somebody who is being defined by their limitations, because that's the only way to figure out how to make them better. And I think just the experience of, sort of, continually being defined by what you can no longer do, or how you're sort of limited, becomes, I think, devastating. Is there anything that you could advise us, as therapists, um... to help you get through that? Or do you think there was no other way that we could have done it, but said it like it was? To maybe focus on things that a patient might find along the way. [stammering] Where they're always, um, initially defined by what they can't do, they may discover something that they weren't expecting at all, which is certainly what happened in my case. Dear Mr. Lynch: My name is Lotje Sodderland. Almost exactly a year ago, I had a brain hemorrhage. It doesn't feel like a year, 'cause time has taken on a different dimension. I was trying to relearn my reading faculty with a therapist. And something struck me in those words that completely changed my experience of recovery. I've learnt that I'm strong, but I've also accepted my vulnerability. I've learnt to focus only... on what matters. It just takes a very long time... to get used to a new brain. [recorded male voice] Please find attached the tenancy agreement. Please initial each page where prompted. [Lotje] I don't need to return to my old life. This is a new existence, a new dynamic, where I wasn't defined by my limitations, but rather about endless possibility. Thank you, Mr. Lynch. -[fireworks crackling] -[people cheering] A really, really important part of this story has been this film. The film was something that was absolutely born of necessity. It's created a way for me to understand something that's extremely complex, and it's created a structure. Yeah, a narrative structure for me to understand my own story. Happy face. We don't really know the answers. But what I can say in this second of existence, reality... is only... what we believe and perceive to be true. That makes absolute sense to me. And very little does these days. Everybody loves a story. And this is a really good one. With a beginning and a very long middle, and it will have an end. The story will have an end. The experience probably won't. [indistinct conversations] Hi, David. My name's Lotje Sodderland. Are you Lotje Sodderland? -I am. -[audience laughing] Lotje, it's so good to hear your voice. I can't see you, Lotje, but I wanna say, I loved your video letter to me. And I'm very happy, as I told you, that you found meditation and you're enjoying it and enjoying the benefits. So, uh, what was your question you'd like to ask tonight, Lotje? I wanted to thank you, first of all, for inviting me this evening, but also for transforming my, um... um, my experience. Not only of a very sort of devastating brain injury recovery, but also of my sort of perception of existence. And, um... And my question to you was, do you think the brain is the engine of the mind or vice versa? They say consciousness is the driver of everything. The brain is a beautiful thing. And now with brain research, they can see on the EEG machine that when a person truly transcends, they see a wondrous thing. Boom! The full brain lights up. They call it "total brain coherence." And it's the only experience in life that does that. That coherence gets more and more permanent, giving rise to higher states of consciousness, and ultimately supreme enlightenment, which is total fulfillment, total liberation, a state they describe as "more than the most," living totality. [slow music playing] [inaudible] |
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