When film-maker Lotje Sodderland had a severe stroke, she lost the ability to speak, read, write or think coherently. Could she learn to live – and love – with a broken brain?

Facebook Twitter Pinterest A trailer for My Beautiful Broken Brain, Lotje’s documentary about her recovery, made with director Sophie Robinson.

I woke to the sound of nurses by my bed, discussing their Christmas plans. I thought I was talking to them, but they didn’t reply. I was aware of an existence, a me within my body. Had I disappeared?

My brother and mother loomed down at me, and a funereal line of friends came to the ward. They looked at me with sad eyes; I wished I could say something to assuage their sadness. There is no silence more resounding than that of a cognitive communication malfunction.

It was a dreary Sunday in November 2011. I had spent the weekend with friends, watching fireworks over London, and trying to make impossible things happen for a deadline at work, where I was a documentary producer. I had met friends at the pub, headed home around 10pm, watched the news on my laptop and gone to bed.

An excruciating pain in my head woke me up in the early hours. I was conscious, but there was nothing there: no thought, no logic, no reason. I didn’t know it yet, but I was experiencing an unprovoked bleed to my brain – a stroke.

I looked at my iPhone, but had no idea how it worked. I looked at my clothes and their complex mechanics baffled me. The comfort of unconsciousness threatened to pull me under, but instead I took my handbag and walked out of the door. I have no idea how I walked down four flights of stairs, or how I found myself across the street in a hotel, trying to ask the receptionists for help. I was found unconscious on the toilet floor at 1pm that afternoon.

After two days in an induced coma, with emergency surgery to my parietal and temporal lobes, the parts of my brain where language and perception are housed, I woke up in a world I didn’t recognise. And so began my new life.

Facebook Twitter Pinterest ‘Apart from the scar under my hair, my face and body were perfectly intact.’ Photograph: Sophia Spring

My real life began 37 years ago when a puritanical Dutch model with a mission to cut a record called Je Cherche Un Homme met the hedonistic music producer responsible for bringing modern civilisation the pop genre known as yé-yé, and they fell in love. Soon after I was born, my parents broke up, and my mother, my older brother, Jan, and I moved three times before I was 16, when we ended up in London. My brother and I have always been close and, after we left home, we lived very near each other. Before my stroke, I saw him, his wife and daughters most weeks. When I woke up, I knew who he and my mother were – but I couldn’t be sure the familiar stranger inhabiting my body was me.

As a neurology inpatient at the Royal London hospital, I was nothing more than my case number. It later turned out that my stroke had been caused by a rare developmental malformation of blood vessels in my brain: something like this could have happened at any time. But at this stage the doctors couldn’t tell me why I had lost the ability to speak, read, write or think coherently. Unable even to contemplate the idea of fear, it felt as if I had become fear itself.

During that first strange, solitary fortnight, I had an idea – my first linear thought. I had been a film-maker: could I film this? I figured out the video function on my iPhone, and began to record my new life.

Meanwhile, a multitude of tests were undertaken to ascertain the extent of the damage. The surgeon who had removed the blood clot and parts of my brain told me that I had almost total right homonymous hemianopsia – a visual field loss (I have no peripheral vision on my right-hand side) – and severe aphasia, a communication disorder affecting comprehension and expression. The surgeon called it a bleed; some doctors call it a haemorrhagic stroke. I had so many questions, such as: why had this happened? And had I actually gone mad? But I said nothing, swimming through torrents of wordless creosote, fearing my speech would be unintelligible.

Two weeks after the stroke, I nearly burned the ward to a cinder when the hospital ran a standard “independent living” test on me (the making of tea and toast). The hospital’s language therapist had promised to get me discharged as soon as possible, assuming I was eager to go home. But I felt anxious about leaving. It was decided I would go and live with my mother. A formidable Baltic nurse ripped the metal staples from my blood-caked scar. The taxi slid over the speed bumps on the way home; it felt as wild and frightening as a lifeboat on a stormy sea.

Apart from the scar under my hair, my face and body were perfectly intact. To look at me, you wouldn’t have noticed a thing. But everyday life no longer made sense to my new brain. I struggled to find the logic in a toothbrush, or the system that goes with the washing of hair, even though I knew (without really understanding) that these behaviours were a necessary part of human life.

By the end of my first week out of hospital, I was able to speak, but without much coherence. The world sounded loud: a passing ambulance; human laughter; a howling fox; birdsong – everything passed through me at the same piercing pitch. My brain had forgotten how to filter sensory inputs, images as well as noises.

Thoughts occurred to me. I wanted to drink coffee again, and I wanted to get the coffee myself. First I would need to get some money. To get money, I would need to use a machine that spewed out notes. I would need a code made of numbers. It was going to be impossible. My mum lent me a fiver.

My brain no longer had the ability to switch off. I didn’t know how to rest and allow my thoughts to subside. I would lie on my bed stiff with anxiety, looking at the ceiling, wishing that sleep would just take me away and return me in the morning. Films confused me – the glaring shapes hurt my eyes. I tried the radio, but the sounds were overwhelming. Nor could I read. Objects would appear, shift and disappear – I couldn’t help but wonder if the world was playing an almighty trick on me.

Facebook Twitter Pinterest Lotje Sodderland at the Royal London hospital in 2011. Photograph: Courtesy of Lotje Sodderland

Despite my insistence that I couldn’t do it, my friend Lucy was convinced she would be able to get me to write again. We spent many frustrating afternoons trying. One morning, I put the Biro to an empty sheet of paper, and with a sudden momentum, my hand began to write the words that Lucy, who is Australian, had dictated: “Throw the bloody boomerang back, mate.” A phrase! But when I looked back, the words had slid off the page. As though possessed, my hand was making words and my eyes didn’t recognise them.

At first, my writing looked like a child’s. I wrote “Hi” and my name. As I got more confident, I filled pages with words written in thick capital letters – words that made sense to me, but that no one else could interpret. I began to draw, bringing to life the monsters I had seen in visions and dreams.

Following severe brain injuries, the NHS refers patients to inpatient neurological rehabilitation units for psychological, linguistic and physical treatment. Two months after the stroke, my brother took me to a nearby hospital to be assessed for eligibility. I didn’t even know what “assessment” meant, or what I was being assessed for.

Filling in a thick form, the doctor asked me questions, occasionally glancing up to gauge my responses. “Can you put your hands on your shoulders?” I didn’t know what shoulders were. I realised I didn’t know the names of any of my body parts, and started to cry.

I was put on a waiting list and while I waited, received what the NHS calls “therapy at home”. A couple of speech and language therapists visited, brandishing two versions of the alphabet (upper and lower case) in plastic laminate. They had set themselves a goal: by Christmas, they would have taught me to write a shopping list, and to read Simpkin, by Quentin Blake, my three-year-old niece Matilda’s favourite book.

I wondered if these women might be able to help me with the more pressing issue of my sanity. Sure enough, a kindly shrink showed up, but her short visits barely scratched the surface of the vacuous black hole that was consuming me.

In mid-January, I was admitted to the rehabilitation unit at Homerton hospital for a three-month period. A white name tag was strapped around my wrist. There were the dulcet tones of Capital Gold radio mixed with the perpetual bleeps of heart monitors. I looked around and saw patients in various states of disablement: some were comatose, some were talking to themselves; one, a Guillain–Barré syndrome survivor, lay in bed reading. I kept forgetting I was a patient, too, until I saw my name tag and my bed. I gazed at the night sky and remembered my old life of freedom and adventure.

The timetable was strictly regimented: psychotherapy, neuropsychology, occupational therapy, language therapy and physiotherapy. But I found the therapies a constant reminder of what I couldn’t do, rather than what I could. I remember the cognitive psychologist drawing a diagram to indicate where on the scale my old intellect had been, and where it was now. When I didn’t respond, she said, “Most people cry when I tell them this.” The idea was to confront me, in an attempt to get me to improve, but I found it very distressing.

Certain things did start to change. Among the faculties I had lost was the ability to understand narrative. A language therapist asked me to write down a story idea, and then to tell her the story using my written notes to guide me. Whitney Houston had recently died, so I chose to tell the story of the time my friend Flora lived out a teen fantasy to go to Star Trax at the Trocadero in Piccadilly Circus, to record a very warbled I Will Always Love You. I felt elated to have been able to share it, and at making the therapist laugh.

My occupational therapist, a kind and patient woman and self-proclaimed luddite, helped me relearn how to use my laptop, and suddenly, to my surprise, my body remembered how to touch-type. I could now write quite fluently, but I still could not read. I began to use Siri on my iPhone, to listen to what I was writing, and it felt great.

My therapist took me to the bank to get new pin codes and cards, so that I would be able to get my own groceries. She helped me figure out the navigation system on my iPhone, which meant I would be able to walk around without getting lost. She did the “tea and toast” test on me, and this time I passed. My discharge date arrived in early April, but though I was out of hospital, my mind was stuck on my limitations. I yearned for solitude. I moved into my own place, and vowed never to see another therapist again.

Facebook Twitter Pinterest A sketch of the monsters she saw in visions and dreams. Photograph: Courtesy of Lotje Sodderland

I opted instead to volunteer for an experiment on my brain, using transcranial direct current stimulation. I would spend every day for a month at the Institute of Neurology in Queen Square in London, where live electrodes would be strapped to my head, zapping my neurones into submission. There was a chance, I was told, that I would be cleverer, faster, altogether better, than I had been pre-stroke. What’s not to like? I signed a pile of disclaimers and followed a delightfully deadpan neurologist, Dr Leff, into what looked like an interstellar teleportation device.

First, the research assistant would measure my skull to make sure it wasn’t growing or shrinking (it wasn’t). Then she would strap cables to my head and apply a couple of milliamps of current to my brain for 20 minutes. A fluorescent green laptop screen would flash single words at me and simultaneously play them into my ears; I would repeat them back. I would then spend a further 140 minutes a day on the laptop’s visual and sonic word repetition training app. I enjoyed the daily trip, and being surrounded by neuroscientists; I liked the sense of being an active participant, rather than a passive patient. I was filled with faith that this was going to work, and was prepared to overlook the gruelling downsides, including the discomfort of the daily currents and the punishing, repetitive boredom.

I woke to hear a voice debating the benefits and pitfalls of dipping a ginger nut biscuit in tea, and knew I must be in hospital again. I opened my eyes as a young medic walked to my bedside and gave me anti-convulsive pills, telling me to keep taking them twice a day until further notice.

My vision was overcome with lurid green and purple grids. I remembered trying to blink the blindness away, my hand lurching wildly into space, searching for my phone – but the grids were everywhere.

I remembered being put on a stretcher as paramedics asked the standard questions: what was my name? Lotje. My date of birth? I had faltered, and the words were gone… Then I blacked out, consumed by a four-hour convulsive seizure.

Jan later filled in the gaps. He told me that I had been doing my word training at home when I started hallucinating and lost my vision. I managed to call him and he found me five minutes later, crouching on the floor outside my flat. He had called the ambulance as my eyeballs disappeared into the back of my head. I later asked him what it was like. “Have you seen The Exorcist?” he said.

I was so sad to be slow and stupid again. I had regressed. The drugs numbed my brain, but I was paranoid and panicked. It’s impossible to prove a link between the testing and the seizure, and I was later told that I was always at a higher risk of seizures in the first year after a stroke. But it was decided that this experiment could no longer be run on people who had suffered a stroke within the past year.

I was almost back to square one. Someone told me that the quietest place in London was the Bethnal Green Buddhist Centre. I had no idea how to meditate and was too fragmented to listen to the teacher, but the sweet silence of the shrine room had me instantly hooked. I learned to recognise and forgive the subtleties of my mind, the states of paranoia, fear and anguish, and to tame them. The fog was lifting.

My life is now split into two: before the stroke, and after. Before, I weighed my quality of life according to how busy I was, both at work and socially. Now, I have to be selective about where I focus my attention. My brother describes the old me as “extremely dynamic, extremely social, very impassioned”. Now, he says, I don’t interact with people in the same way, that I have become introspective. I asked a friend if he thought I was a changed woman. “You’ve expanded,” he said. “You evolved in what is a very unusual way. But I think it’s fantastic. I enjoy our talks so much more these days.” So it was worth it? He laughed and said, “Well, I’m happy you’re still here.”

While there have been moments of mourning for my old life, my new limitations mean I have been forced to unravel exactly what I was made of. I’ve worked on a new character, becoming more patient, more accepting, kinder to myself and to the people around me.

In Cornwall with Tom, her new boyfriend. Photograph: Courtesy of Lotje Sodderland

The last three years have seen a series of milestones – the first holiday, the first solo trip. This year, I fell in love, a terrifying prospect when operating a new brain. He is a beautiful superhero/material engineer, who left London to restore a sawmill in Cornwall’s ancient forestland, where I now spend much of my time. Romance is a complex neurological process, and I didn’t think I was eligible any more. It seemed entirely impossible that I would be able to love someone else – and even more improbable that someone would love the damaged new me. But light has a tendency to emanate from the darkest places.

The day we met, in early January, Tom took me for a drive through the savage beauty of Bodmin Moor, with its yellow gorse and wild horses. I noticed that we hadn’t said anything for a while. He was driving, sitting on my blind periphery, and after a moment spent wishing I was clever and conversational, I glanced over and saw that he expected nothing, that we were entirely comfortable cloaked in silence. When he dropped me off at the station I said: “I think we’re going to fall in love”, and he said: “I think so, too.”

I didn’t sleep for days. I had no strategy to survive any catastrophes of the heart – was it utterly unwise to expose myself to such potential loss? At the same time, having tamed my hyper-sensitive receptors through daily meditation, wouldn’t it be just like the old me to risk it all in the name of adventure?

And some risks are worth it. Falling in love was as immediate, raw and unfiltered as if I were doing it for the first time. As Tom chops the kindling while I write this, I feel so very fortunate to be here – in the sumptuous stillness, with the singing of tawny owls in the evening.

I still can’t read for more than a few minutes at a time (these words are brought to you courtesy of Siri), but I see more of the world; a world that may not always have left-to-right linear patterns, but is intuited instead through subtle sensory experience. I see my stroke as a kind of rebirth; unexpected and painful, but also more vivid, filled with purpose, meaning and potential.

• Lotje Sodderland’s documentary about her recovery, made with director Sophie Robinson, is now showing at festivals; go to mybeautifulbrokenbrain.com for more information.