Stroke victim: my new brain
After Lotje Sodderland had a stroke at 34, she couldn’t speak, read or even think. Over time she’s worked to rehabilitate her brain and accept what happened to her – making her insights into the mysterious questions of how we think and who we are all the
RIGHT from the start it’s clear this is no ordinary video selfie – the young woman staring into the camera looks vulnerable and scared. You can’t see her head at all, only her face peering from a hoodie she wears to hide her partly shaved scalp and bloody scar – a grizzly reminder of the emergency brain operation she’s just undergone. “Okay, I’m alive,” she says haltingly. “I’m not dead. That’s a start.”
After suffering a life-threatening stroke at age 34, Lotje Sodderland awoke in a London hospital feeling like she’d landed on a different planet. Just a few days earlier she’d been a producer with an advertising agency, full of life and energy, always on the move. But unbeknown to her, she’d been born with a tangle of abnormal blood vessels in her brain. One night in November 2011, for no obvious reason, it ruptured.
By keeping her in a medically induced coma for two days and performing surgery on her parietal and temporal lobes – the parts of the brain housing language and perception – doctors were able to save her life.
But they weren’t able to do anything to reverse the catastrophic damage caused by the haemorrhage. She awoke to a world she didn’t recognise.
“Colours were much more vibrant and sounds were louder,” she now recalls.
“I couldn’t speak at first, or read, and my thoughts weren’t linear or logical. I knew who I was, and I recognised my mother and brother – but I didn’t know anything else.”
Unable to think coherently or utter more than a few words at a time, she somehow figured out how to work the video function on her iPhone. It’s these clips of herself – some filmed just days after coming out of the coma – that would form the basis of an award-winning film, My Beautiful Broken Brain, which is available on the streaming site Netflix. 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 touchtype 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 Lotje was, by the daily zapping with electrodes, for 20 minutes at a time, in the hope of regaining
‘I couldn’t speak at first, or read, and my thoughts weren’t logical'
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 can’t be proved), she had a massive seizure. Much of the progress she’d made evaporated.
“Does science really know what it’s playing with?” she asks.
Lotje explores this and other questions in a new documentary, Make Me a Better Brain, that’s in the works.
It reports on the cutting edge of neuroscience: the scientists who repair “broken” brains – people with traumatic brain injuries and Parkinson’s disease. And it explores developments in “neuro-enhancement” – medical techniques used to boost the brains of healthy individuals – as it asks the question: if we can have the perfect lips or breasts, why not the perfect brain?
MEETING Lotje at her home in London I’m struck by how well she appears. It’s difficult to believe that this is the same woman who just a short while ago 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’s able to type but still can’t read. She sees print of different sizes and types but is unable to make anything of it. Reading and writing, it transpires, don’t 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’s undergone a radical shift from a visual to a more auditory mode of perception. She’s gone from reading to listening. She gets her news by listening to the radio 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 because it made her too sad to look at them, although a few are in the attic.
These days she has to be careful, she stresses, because she can easily become “overwhelmed” – she’s 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 over-sensitive. Everything is brighter and louder. So it’s 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’m completely useless the next day.”
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’s situated on a one-way street, which she chose for its peaceful aspect. The walls are painted a soothing shade of grey, and there’s minimal furniture – a table, two chairs, a sofa.
This is a huge 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.”
Despite the damage the stroke caused she still seems very articulate.
“That’s me having made an enormous amount of progress, and also talking about my brain, which I’m really used to talking about,” Lotje explains. “If you asked me to talk about the war in Syria or something, I wouldn’t be very
(From previous page) articulate at all. It’s just that the brain is my specialist subject.”
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,” Lotje 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.”
While making the documentary 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’s 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,” Lotje says. “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 it’s incredible that she managed to make the documentary – 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’s 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’re communicating. It’s 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.”
Lotje was sudde n ly 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.”
LOTJE was born in Paris in 1977. Her mother was a Dutch fashion model and her father – “a crazy Frenchman” – was a music producer. When she was four her mother moved to England with her and her older brother, Jan. Her father was largely absent and she spent much of her childhood on the move. “My mother was adventurous and liked moving,” she says. “It made me good at adapting.”
After studying sociology at the University of Manchester, Lotje moved to Amsterdam and became a documentary filmmaker, 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 in London was a whirlwind of activity. “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 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. I knew that something really serious was happening.”
Drifting in and out of consciousness and feeling immense fear she somehow managed to get dressed, take her bag, walk down four flights of stairs and open the front door. 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 1 pm.
I ask if she wishes she’d been found sooner. “Obviously if someone had found me sooner, the damage probably would’ve been a lot less.”
Lotje 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.”
She says the only way the arteriovenous malformation (AVM) – the tangle of abnormal blood vessels in her brain – would’ve been detected is by chance. “Let’s say I had a car accident and they needed to do an MRI scan, it would’ve 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’re not usually hereditary.
What if life hadn’t been so frenetic? (Experts say the haemorrhage could’ve happened at any time, or not at all.) What if she’d been living with someone who could’ve sounded the alarm sooner? What if she hadn’t done the experiment? (She’s now on anti-convulsive drugs, and the thought of having another seizure still brings on terrible anxiety attacks.)
Lotje refuses to play the game of what if. “When I was in hospital I was with people who’d lost the ability to walk, communicate, speak, completely lost themselves. I realised how fortunate I was.”
Her great pillars of support are her mother and brother, who live nearby. She’s also “very happy” in a new relationship with someone who didn’t know her before. “It’s really liberating because there’s 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.”
Does she still grieve for her old life? “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.”
‘I looked at my phone and nothing on it made sense. I knew something really serious was happening’
© SALLY WILLIAMS / TELEGRAPH MEDIA GROUP LIMITED 2017