Born in France, raised in Holland, made, broken and rebuilt in Britain. That’s a 12-word summary of Lotje Sodderland’s short but eventful life – 12 words that she’ll never be able to read.
That’s because in 2011, at the age of 34, Sodderland suffered a catastrophic stroke, the legacy of which means she no longer recognises words. They form in her mind and she can write them down, but she has no recognition of what she’s written. “I used to love reading books,” she says, “but now my boyfriend has to read them to me.”
But before we consider her present, let’s return to her past. Six years ago, alone in her bedroom in Shoreditch, east London, she awoke with a crushing pain in her head. “I was drifting in and out of consciousness. It was very frightening. I didn’t know how to resolve the situation. My senses were telling me that I was in danger but I had no idea how to get out of it because nothing made sense. I knew I needed to use my phone and put on my clothes, but I didn’t know how to. It was a very direct, pure fear – a fear without context.”
Luckily, there was a life-saving flash of clarity and she was able to stumble out onto the street to the hotel across the road. Eventually she was found collapsed in the toilets and rushed to hospital. Neurosurgeons discovered a bleed on her brain that had damaged the areas controlling language and perception.
Initially it wiped her memory and left her unable to both read and write. Yet she recalls feeling a hard-to-describe sense of elation.
“At the very beginning it was really liberating – there was no past or no future and no anxiety, just a feeling of being happy to be alive. But quickly you’re being assessed and all the measurements of your limitations begin and that’s when the distressing, painful stuff begins. It was a very long period of acceptance before I got to the stage I’m at now.”
Where she is now is presenting a documentary for Channel 4 – a follow-up of sorts to her crowdfunded 2014 film, My Beautiful Broken Brain, available on Netflix – that not just chronicles her own recovery but looks at what’s happening around the world in the treatment of brain injuries and disorders.
“What happened to me has made me fascinated with the machinations of the brain and mind so I had the programme idea, but it took me a really long time with my dodgy brain to articulate it and write it all out. To my delight Channel 4 really liked it.”
Of course, by writing she means typing, but how does she know which keys to press? “I was able to touch-type before the stroke and it was a magical moment in my recovery when my ability to do it returned. It was like a whole new world opened up because I was able to express myself in words and use Siri [a computer program] to read them back to me. That was a really big step forward.”
In due course her handwriting also returned, but she has no expectation that she’ll ever read again. And there are other changes she’s had to adapt to – those concerning perception and personality.
“Before the stroke I had a very busy social life, but now I’m very reclusive. I find it very difficult to socialise in groups.” Her emotions, too, have changed. She describes it as like having a protective layer, that shielded her from the exhilarating highs and damaging lows, stripped away.
“Every aspect of experience is much more extreme, much more intense, so the pain – emotional pain – is much more painful and the joy is much more joyful.” Perhaps that explains why she was single when she had the stroke, and now has a boyfriend?
“Falling in love is a very raw experience but perhaps more beautiful than if I had that protective layer. Initially it was frightening and overwhelming, but you can also see that on the flip side there is a real beauty.”
Having observed some of the pioneering brain surgery that’s going on around the world – including a radical and invasive treatment for Parkinson’s that’s being performed in Bristol – Sodderland urges caution. “I wouldn’t be alive if it wasn’t for the advances in neuroscience, so I have extreme gratitude for that, but I think we do need to be aware of the dangers. The leading neuroscientists I spoke to had the humility to admit that we know very little about the workings of the brain. We know more about black holes than we do about the brain.”
Can You Rebuild My Brain is on Tuesday 30th January at 10pm on Channel 4