In November 2011, Lotje Sodderland, aged 34, had a life-threatening stroke. Unbeknown to her, she had been born with tangle of abnormal blood vessels in her brain. That night, for no obvious reason, it ruptured.
She was a producer with an advertising agency in London, full of life and energy, always on the move. It was a textbook case: sudden onset, severe headache, quick progression in a young person otherwise fit and well.
She spent two days in an induced coma, and had emergency surgery on her parietal and temporal lobes, the parts of the brain housing language and perception. The operation saved her life, but it could not undo the damage done to her brain by the haemorrhage.
She woke up in a world she didn’t recognise. At first she couldn’t speak, write, read or think coherently. But in this strange world she somehow figured out how to work the video function on her iPhone.
‘I’m alive, I’m not dead,’ she says in a clip filmed a few days after the stroke. Her focus is direct, her expression is puzzled. You can’t see her head at all, only her face peering from a hoody (to hide her partly shaved scalp).
Her videos of herself would form the basis of an award-winning film, My Beautiful Broken Brain (2014). Co-directed with Sophie Robinson, with David Lynch as an executive producer, and filmed over the course of a year, it documents the highs and lows of her recovery.
We see her struggling with the alphabet, relearning how to use her laptop (her body remembered how to touch-type, but she couldn’t read what she wrote) and trying to connect with the ghostly traces of her past life.
We also see how, about six months into her recovery, she volunteered to take part in an experiment. Someone less adventurous might not have been excited, as Sodderland was, by the daily zapping with electrodes, for 20 minutes at a time, in the hope of regaining cognitive function, and in particular being able to read again.
But then things went horribly wrong. At the end of the month’s treatment (though a link cannot be proven), she had a massive seizure. Much of the progress she had made evaporated. ‘Does science really know what it’s playing with?’ she now asks.
She explores this and other questions in her new documentary, Make Me a Better Brain. Filmed over two months last winter, it reports on the cutting edge of neuroscience: the scientists who repair ‘broken’ brains – people with traumatic brain injuries and Parkinson’s disease; as well as developments in ‘neuro-enhancement’ – boosting the brains of healthy individuals. If we can have the perfect lips or breasts, why not the perfect brain?
Long, slow road to recovery
We meet at her home in east London, where I am struck immediately by how well she appears: attractive, dimples, retroussé nose; cheerful, enthusiastic. It’s difficult to keep in mind the Sodderland who was so profoundly disabled. ‘It’s all hidden,’ she says, ‘all a bit of a mess inside.’
She explains that she’s blind in the periphery of her right eye and will never be able to drive. She is able to type, but still cannot read. She sees print of different sizes and types but is unable to make anything of it.
(Reading and writing, it transpires, do not go together. The act of reading is dependent on a whole host of processes in the brain’s word-recognition systems, which can break down.)
‘I use technology all the time to help me communicate,’ she says. ‘I use Siri, for example, to decode an email or a text message and turn it into sound.’
In effect, she has undergone a radical shift from a visual to a more auditory mode of perception. Gone from reading to listening. She gets her news from Radio 4 and has turned to photography books – volumes by Banksy and Helmut Newton are among the few on her shelf – for enjoyment. (She got rid of most of her old books – ‘very sad’ – although a few are in the attic.)
But Sodderland has to be careful, she stresses, because she can easily become ‘overwhelmed’ – she is unable, for example, to watch a film in the evening. ‘It’s physical,’ she says. ‘You feel sick and dizzy. My cognitive responses and processes and my sensory responses and processes – so vision, sound, the amount of information going in – are very oversensitive. Everything is brighter and louder. So it is very easy to become overwhelmed and then’ – she clicks her fingers – ‘that’s it. I can’t sleep and if I can’t sleep I am completely useless the next day.’
If you asked me to talk about the war in Syria or something, I wouldn’t be very articulate at all. It’s just the brain is my specialist subject
This is a massive change, she says, because she used to be ‘hyperactive’ and thrived on three hours of sleep a night. ‘But now it’s very debilitating, so I have to lead this monastic life.’
She runs through her routine: 40 minutes of meditation every morning; no more than an hour a day on her laptop and phone; eight hours of sleep a night. And her home reflects the importance of quiet in her life. It is situated on a one-way street, which she chose for its peaceful aspect. The walls are painted a soothing shade of grey, and there is minimal furniture – a table, two chairs, a sofa.
But you seem so articulate, I say. ‘That is me having made an enormous amount of progress, and also talking about my brain, which I am really used to talking about. If you asked me to talk about the war in Syria or something, I wouldn’t be very articulate at all. It’s just the brain is my specialist subject.’
Complex world of neuroscience
Make Me a Better Brain centres on how little experts actually know about the organ. ‘The more we understand about how the brain works in terms of what we can touch and feel, the material things, the further we are from understanding the mind, the individual inside of it,’ Sodderland says. Emotions, thoughts, memories, dreams, reflections – the essence of what make us human. ‘Or that was my experience anyway.’
She also voices concern about the ethical dimension of neuroscience, which stems from her experience after taking part in an experiment. ‘It doesn’t make sense to zap a freshly recovered brain with electrodes,’ she says. ‘You wouldn’t teach a child to read by zapping its brain, this delicate organ we don’t understand at all. It’s such a risky business.’
In the making of the new film she witnessed some of the wonders of neuroscience, for example moves towards ‘recovering’ the memories of Alzheimer’s sufferers, as well as the more controversial applications, such as the use of transcranial magnetic stimulation, or TMS, to ‘cure’ autism.
Some studies suggest that TMS – a non-invasive procedure that uses electromagnetic fields to stimulate nerve cells in the brain – can help to relieve symptoms of autism, such as irritability and repetitive behaviours, and improve social skills.
John Elder Robison, who is interviewed in the documentary, has chronicled his ‘emotional awakening’ as a consequence of TMS in a recent memoir, Switched On. While he had an easier time reading people’s emotions after treatment, he lost ‘a protective layer’.
He became, as he puts it, ‘overwhelmed with emotion’, and his marriage collapsed. ‘I thought it was tragic that he was made to feel there was something wrong with him,’ Sodderland tells me. ‘Every human brain is unique, and he was made to feel he was missing something and had to improve himself in order to fit in.’
Given the limitations of day-to-day life, I wonder how she managed to make the documentary at all – she came up with the idea, is the presenter and had to travel widely, including to Boston, Philadelphia, Atlanta, Minneapolis and Seattle.
‘It was really exciting to be on a journey because I love adventures,’ she says. ‘That is something I had before and I still have now.’ But of course there were challenges. ‘Speaking is really tiring. People with normal brains just aren’t aware of what’s going on in the brain when you are communicating. It is so complicated. So every evening at dinner I was completely silent. No fun whatsoever. I felt a bit useless socially.’
She also nearly fainted during the filming of an operation on Deirdre Wild, a woman with Parkinson’s disease. ‘Actually, it was odd because even though I’ve obviously had brain surgery myself, I’d never really thought about what happened until I was in the theatre watching Deirdre have her surgery.’
I use technology all the time to help me communicate, I use Siri, for example, to decode an email or a text message and turn it into sound.
Sodderland was suddenly filled with horror: the drilling into the skull, the rattle and hum and hiss of all the machinery and technology in the theatre, Wild lying prone, her vulnerability. ‘I was panicking, full of fear, thinking, “I can’t believe that was me.” One of the ladies who was operating one of the machines could see I was wobbly and gave me a chair to sit on.’
She saw Wild’s hair being brushed after the procedure – an attempt to make the patient look presentable for visiting family and friends – and with sudden clarity saw herself. ‘Apparently, according to my mum and my brother, my hair looked all “frouffed” when they came in. But I was unconscious. It’s all a bit strange.’
Travelling, boyfriends and student days
Lotje Sodderland was born in Paris in 1977. Her mother was a Dutch fashion model and her father – ‘a crazy Frenchman’ – was a music producer. ‘[My mother] wanted to become a singer, and that is how she met my dad,’ Sodderland says.
‘They recorded a song, Je cherche un homme, and they had a ’70s kind of non-committal fling, which resulted in my brother and me.’ Her brother, Jan, is 43.
When Sodderland was four or so, the family (Sodderland, her mother and her brother – her father was largely absent) moved to England, where she spent much of her childhood on the move. ‘My mother was adventurous and liked moving,’ she says.
The first few years were very painful and frustrating, and it was only when I started the process of acceptance that I began to value this new brain
They spent some years in Bristol, and eventually ended up in London. During this period, Sodderland – bright, rebellious, bold – went to numerous schools, including a Steiner school in East Sussex; Clayesmore, a boarding school in Dorset; Cranleigh in Surrey; and South Hampstead High School, an independent day school for girls in north London.
‘It made me good at adapting,’ she observes. ‘But when you have a major brain injury, not only is your identity confronted in the sense of you don’t know who you are any more, but physically it changes the bit in your brain where identity is located.
Sometimes I think all that moving around meant I had quite a fluid sense of identity, and that was another thing that was difficult to deal with in my recovery.’ Because who was I anyway? she seems to wonder.
After studying sociology at the University of Manchester, Sodderland moved to Amsterdam and became a documentary film-maker, working for a production company called Submarine. In June 2011 she was headhunted by the London-based advertising agency Mother.
‘I was ready to move back to London. I’d broken up with my long-term boyfriend, and while I really loved my life in Amsterdam, it was quite limited, and I was career-minded and wanted to do more.’
Life rocketed. ‘I was working like crazy, travelling, impossible challenges that I somehow managed to complete. I loved it! Or maybe I just liked not thinking about things, being distracted from myself.’ She had a tight-knit group of friends. ‘When we weren’t working together we’d be having dinner together.’
The night everything changed
The night of her collapse came six months into her job. It was a Sunday. She spent the evening with friends and then went back to her flat in Shoreditch, where she lived on her own. She remembers waking up in the night with an agonising pain in her head. ‘My brain had already begun to haemorrhage. I looked at my phone and nothing on it made sense.’
Drifting in and out of consciousness and feeling immense fear – ‘I knew that something really serious was happening’ – she somehow managed to get dressed, take her bag, walk down four flights of stairs and open the front door (a source of great mystery as the door had a code and she says there is no way she could have remembered it).
She walked across the street, into a hotel. ‘I remember I tried to ask the receptionist for help but she just looked at me strangely,’ she says, adding that she doesn’t think this is entirely surprising. ‘There’s lots of crazy people in that area.’ She was eventually found unconscious in a hotel toilet, and was finally admitted to hospital at 1pm.
I ask if she wishes she’d been found sooner. ‘Obviously if someone had found me sooner, probably the damage would have been a lot less.’
Sodderland carries remarkably little bitterness about this. But then her Zen approach is the result of a long process of rehabilitation. ‘The first few years were very painful and frustrating, and it was only when I started the process of acceptance – which is a long process as well – that I began to value this new brain,’ she says. ‘Actually having a simple life with focus and value is really beautiful.’
‘When I was in hospital I was with people who had lost the ability to walk, communicate, speak, completely lost themselves. I realised how fortunate I was
She says the only way the arteriovenous malformation (AVM) would have been detected is by chance. ‘Let’s say I had a car accident and they needed to do an MRI scan, it would have been spotted, and then I may have had the option of pre-emptive surgery, but that didn’t happen.’ AVMs are usually congenital; people are born with them. But they are not usually hereditary.
So no more what-ifs: what if life hadn’t been so frenetic? (Experts say the haemorrhage could have happened at any time, or not at all.) What if she’d been living with someone who could have sounded the alarm sooner? What if she hadn’t done the experiment? (She is now on anti-convulsive drugs, and the thought of having another seizure still brings on terrible anxiety attacks.)
‘When I was in hospital I was with people who had lost the ability to walk, communicate, speak, completely lost themselves. I realised how fortunate I was.’
Her great supports are her mother and brother, who live nearby. Jan has four children, and now runs their father’s music business following his death three years ago.
She is also ‘very happy’ in a new relationship with someone who didn’t know her before. ‘It’s really liberating because there is no expectation of the old me,’ she says. ‘For a long time all of the people in my life were seeing this new person and it was an added layer of stress to try to be that old person for those people.’
Do you still grieve for the old you, I ask. ‘I grieve for some of my abilities, and my work and my lifestyle, but those are all peripheral, external things. The essence of who I was is still the same – just generally excited, interested, happy.’
Make Me a Better Brain will be broadcast on Channel 4 later this year