Lotje Sodderland interview for Can You Rebuild My Brain?

10 January 2018

TX Tuesday 30 January at 10pm on Channel 4

Can you begin by explaining what happened to you in November 2011, and explaining what you remember?

On the night of the stroke? It was a Sunday night, and I’d been working hard that day, because I was trying to complete something for a deadline. And my family came to see me and drink tea, but I was distracted because I needed to finish my work. And then, in the evening, I went to the pub with my friends, and then I went home. I lived by myself at the time, and I woke up in the dark, and there was this pain in my head. But because my brain had already started to haemorrhage, I wasn’t able to find logic or reason or understand what was happening, apart from this feeling of very raw, direct pain and fear. And then I drifted in and out of consciousness. I remember struggling. And I was looking at my phone, and I didn’t know how it worked, but I had a sense that it could help me. It was the same with my clothes – I was looking at them, and touching them, but I couldn’t work out how they could help me. And then at one point I had this moment of clarity, where knew how to put clothes on, and I walked outside with my bag and everything, and walked down four flights of stairs, and walked out of the door. I don’t remember how I did that. And then I walked into a hotel opposite my house, and tried to ask for help, but I couldn’t speak, so I just started opening my mouth. And the receptionist was looking at me in a slightly quizzical fashion. And the next thing that happened is that I made my way to the bathroom and lost consciousness again, and that’s where somebody called an ambulance. I was admitted to the Royal London hospital at 1pm, and that’s where they did the MRI and then performed the emergency surgery.

Why does a healthy 34-year-old woman have a stroke? What happened?

The cause was a malformation of blood vessels in my brain that had been there since I was born. It could have gone off at any time, and for some reason, it happened that night.

How has the stroke changed your life?

It’s completely transformed my life, both for better and worse, although now I would probably just say better. It’s been five-and-a-half years, so that’s quite a long time to get used to my new brain and my new life. The actual damage was to the part of my brain that deals with language and perception, which is a really big part of experience – that’s where reading, writing, speaking, thinking, as well as how you see and experience the world, is all located in that bit of the brain. So when I woke up it was a very different world to the one I’d left behind. Aside from the practical limitations like my inability to read and write and speak and think in a coherent way, everything looked and sounded really overwhelming, and very raw. There was no filter between me and experience. Then there was a very long process of recovery through official channels. I was an inpatient for three months at the Regional Neurological Rehabilitation Unit in Homerton Hospital. I had lots of assessments, but I found it all quite distressing. Eventually things just started to improve. Now I can’t really read, but I can write, and I live a very peaceful and meaningful life. It’s very different from my previous life – my lifestyle is very different, and my abilities are very different, and my values are very different.

You filmed a lot of your recovery, clips of which are shown in this film. Why did you want to do that?

I think partly because I was working in documentary before my stroke, and always loved telling stories about real experiences. I was a producer before, so I wasn’t as creatively involved as I am now, but storytelling has always been something that I wanted to do. I think part of it was this instinct to want to regain the ability to tell stories, to create coherent narratives, which was something that I lost when I lost a bit of my brain. And the other thing was as soon as I was given back my iPhone, I used it as a tool to help me retain information, because I wasn’t able to remember things. My phone helped me retain what was happening to me. I didn’t initially think was going to make a documentary out of my footage. A lot of it was also footage that I used to communicate with friends. When I regained the ability to speak, which was the first thing I regained, I would make video messages for friends, and friends would make video messages for me, and that became a really fundamental currency to the film. A smart phone is a very simple tool that even a child can use to help you make sense of this surreal experience.

Your latest film about the human brain, and treatments for various neurological issues. Explain a little more.

I think neuro-science is seen as this science that can answer all these questions about why we’re here and the meaning of existence – it’s almost slightly biblical, the way we’ve become on brain science – and I wanted to delve into this brave new world, to explore whether we should have such blind faith in something we know so little about. The human brain is this fragile, beautiful but very unknown organ that is so fundamental to our experience, and so subjective to each person. I just thought, can science, which depends on rigour and data and information, explain something that is so ethereal and subjective.

You met some extraordinary people making this film. First of all, explain a little bit about Deidre and her story.

Deidre suffers from Parkinson’s, and has or the past ten years. Her body was constantly making involuntary movements, which was obviously exhausting and completely strange. She was a very likeable character. She was having a new, pioneering surgery, using a computer to get into a bit of the brain that a human would never be able to get to – so using technology that’s way beyond human capability, in terms of precision, and alleviate these constant involuntary movements. It was an extraordinary experience from beginning to end. It was delightful to meet her, she and her boyfriend are such a lovely couple. I felt a real kinship with her. She was such a positive person and saw a sort of magical beauty in her situation as well as being really frustrated with it, which is I think how I sometimes feel. And she was very fearless – she was obviously desperate as well, but she was willing to take this big risk, and have somebody delve right into the centre of her brain, to see if she could improve the quality of her life. And watching the surgery was incredibly intense. It was a four-hour surgery, so for anybody who isn’t used to blood and guts and hospital, it would be intense, but for me, having gone through a similar surgery, it was really overwhelming. I had to really focus so I didn’t pass out. And then, after a couple of hours, I was able to acclimatise, and really look into her brain and not feel queasy.

You travelled to America, where you met John – explain a little about his story.

John was on the autistic spectrum, and he’d always had the feeling that he was a lesser human being because he had this condition, and he felt that he was really missing out on what he felt were important parts of experience, connected to emotion. So this slightly radical scientist came along with this experimental idea, and offered him the opportunity to have his brain zapped, and to become emotionally engaged, and potentially experience empathy. So he signed up for that, and with great excitement participated. But I don’t think he thought it would really do anything. And then, driving home after a zapping session, he heard a song on the radio, and suddenly his emotional floodgates just opened, and for the first time in his life he had this sublime experience of feeling. But then, because he had no experience in how to deal with emotion, the experiment started to have a very negative impact on his life. He’d become somebody that he wasn’t used to being. The very essence of his selfhood was turned on its head. He got divorced and lost his family, and he was suddenly exposed to the slightly unpleasant aspects of human emotion: He felt like he was being laughed at. He experienced paranoia, felt like he was the butt of people’s jokes – things that had never even occurred to him before. He says he still lives with this change every day.

That goes to the very heart of what you’re talking about – the morality of tinkering with the brain, potentially changing people’s personalities.

Exactly. I think that his stoyr, and that part of the film, really reflects what the film is about: Each human brain and each individual has a unique personality and sense of self. Since the brain is so delicate and we know so little about it, should there be an ethical code that limits what e do in the way that we experiment on the brain in our quest to understand it. It wasn’t long ago that people were having lobotomies to treat depression. Since we keep revising how we understand the brain and its functions and vulnerabilities, should we be messing around with this fundamental organ that’s so key to our sense of self.

Having made this film, if someone came to you now and said “we can put a probe into your brain that would help you read again,” what would your response be?

I think if it was a probe, ‘d probably ay no. I’d have to know what the risks were, but we never really know what the risks are because we don’t really understand what it is. I have this experimental study done in the film, where electrodes were being zapped on my brain just six months after my surgery, to try and fast-track my recovery and my cognitive abilities, and it ended in disaster, and I had a big seizure. So I think that’s part of what made me so interested in how we understand and treat conditions of consciousness. I’m perfectly happy now – like I say, it was a fairly dramatic period of readjustment. But if somebody said “I’ve got this magical thing and it’s not going to be invasive and we’re not going to use electrodes but you’re going to be able to read again,” I’d definitely try something like that. But I’ve acclimatised to not being able to read, partly thanks to advances in technology, things like Siri. These developments give people who have neurologically limiting conditions the chance to live a normal life.

Did your stroke, and the resulting neurological damage, mean that making this film was difficult, either in emotional or practical terms?

Yes, it was very challenging. Practically, on a level that I’d never done anything like this before, and so I was having to work very hard, and I’m not used to working as hard as we did on the film. I was overwhelmed, and I was in lots of sensorially overwhelming environments. My life now is rather monastic and peaceful, and that’s why I can function. It’s fundamentally important that I don’t out myself in noisy or overwhelming situations, but I really wanted to challenge myself, and I wanted to go on this voyage. I wanted to discover the answers to the questions that I had, so I was willing to put myself into some discomfort. Making this was really exhilarating and exciting, but at the same time it was terrifying. It was overwhelming, both in terms of my sensory input, and in terms of trying to understand neuroscience. It’s pretty complicated, and my dodgy brain was struggling a little bit here and there. And just recently we were recording the voiceover, and that was really difficult, because I can’t read. It has to be read to me, but because I can’t retain information, it has to be read to me just a few words at a time, and we record like that, but then you have to make it sound fluent. We were in there for eight hours, and I almost lost my mind by the end of it, but at the same time it was incredibly rewarding. I hope that this film will be meaningful to people with brain injuries, and to anyone interested in our beautiful brains.

You say in the film that you prefer the person you are now to the one before. What do you mean by that?

I think I mean that I gained some humility in the loss of part of my brain. I really value that, I really appreciate that. I was forced to delve into the core of my being and figure out what I was made of. And to find that I was limited, whilst initially being frustrating, gave me a sense of humility, and I think that’s something I’m very grateful for.

 

TX Tuesday 30 January at 10pm on Channel 4