I am a dancer. The dark is usually a friend to me, allowing me to stretch and move my limbs into unfashionable positions as music washes over me. My music journalism career means I have spent more than two decades at gigs and in clubs, falling in love with music, contorting my body, two‑stepping, making any space into a dancefloor, then going home and writing about it.
Two years ago, when I was 36, I was riding high at the launch party for my first book, about housing, home and music, and I danced as R, my husband, DJ’d Tems, Asake and Burna Boy. The publishers had put up a billboard about the book; I remember walking to the petrol station to buy the papers and read the reviews, and feeling relieved that they were good. I began preparing for a summer of talks – oversized suits and heels at the ready. My next event was at a bookshop in Bristol to talk about the idea of home. But my body, unbeknown to me, was feeling very not at home.
My brother-in-law picked me up from the station, and as we chatted I felt a wave of heat come over me. I had a migraine and was about to take an ibuprofen, figuring I could do the talk then go and lie down. Then, all of a sudden, my legs gave way and I passed out. When I woke up, I vomited continually until it felt like a good idea to go to A&E.
At Southmead hospital in Bristol they told me I had a burst aneurysm. An opening between blood vessels in my brain, known as a fistula, that I had unknowingly had since birth, had created an aneurysm, which had burst, out of nowhere. Apparently, many people have aneurysms without ever realising. They don’t always lead to a bleed – but mine did. I had had a subarachnoid haemorrhage – a type of stroke, and a phrase I had never heard before. I urgently required coils in my brain to stop the bleeding that had caused the stroke. Death was suddenly asphyxiatingly close.
R says he called my mum to tell her and heard a thud then silence. My sister picked up the phone and nonchalantly explained: “Oh, Mum’s just fainted. But we’re on our way.”
What followed was four months of many, many operations. I remember flashes: R reading the chef and author Anthony Bourdain to me; my mum massaging my legs, which were out of use, along with the whole right side of my body; and my brother going out for “walks” to cry. I think there were a lot of tears. I don’t remember them all, but I can recall feelings; of abject terror and loss, and also bewilderment. My sister asked me about my book (All the Houses I’ve Ever Lived In) and I had no idea what she was on about. The operations were to reduce cranial swelling, and part of my skull was removed to compensate for it. My mum said that, once, as I was going into theatre I said just three words to her: “Mum, my brain.”
After the surgery, I feel staples in my head, which has been almost entirely shaved. I have lost loads of muscle, and I have an eye-patch, because I can only see double without it; the brain swells during a bleed and your optic nerve goes haywire for a while before, if you’re lucky, the swelling reduces. Without good eyesight, I’m reliant on sound to place me. My mum has been dressing me and I have pink cotton pyjamas, as though I’m cosplaying a toddler. I catch sight of myself in a mirror while a nurse is showering me. I am cross-eyed so I can only focus on my outline, but I don’t recognise myself. I try to touch the staples but it’s just a sore, bloody mess.
There is a shunt – a thin silicone tube – in my brain, I guess to control fluid. I have a tracheostomy to help me breathe (with a tube that helps oxygen reach my lungs through an opening in my neck), so I can’t speak. I just listen to voices chattering. Later, I become addicted to fizzy drinks, and I’m convinced now that it’s because a nurse opened a bottle of Fanta and the “kshhh” sound stayed with me. Even now I have an idea of the seriousness of brain surgery, but for some reason it doesn’t include me.
After six weeks, I’m moved to King’s College hospital in London. My friends visit me, which is great, but I don’t recognise anyone, so I tell my mum that some “nice ladies” came. It’s a constant wave of deja vu, and I can’t completely articulate the dreamscape I’m in, so I just stay for the ride. My best friend, whom I’ve known since school, visits me, and her voice is familiar as she holds my hand and chats, but she may as well be a mirage. I conclude that, right now, reality is too difficult to work out. I have to be content with fragments.
When I can speak, after five weeks, it’s a mumble, but I learn lots of new words I want to repeat. “Sara Stedy” (a piece of equipment that helps you stand), tracheostomy, blood thinners, catheters, bladder training. My mum and husband are at my bedside every day, sometimes just watching me sleep.
R and Mum are living together while I’m in hospital and he tells me that she has panic-made three dals. He texts me a picture of a rajma and aubergine subji simmering on the stove. I guess the freezer is full. The next day, they both come to visit me in tag-team slots. During my mum’s visit, I fall into a nap, and when I wake up she’s gone, but I have one thick, greasy plait that goes down my back. Every time I feel it I am hysterical because it is the most hilarious and touching thing in the world.
After two months, I move to a rehab centre, which sounds like a celeb addiction hotspot but is devoid of glamour. Although it is evidence of the NHS really working (not something I hear often) and a hospital masquerading as a non-hospital. There are clues: visiting hours and a timetable filled with physio and speech training. Cornflakes every morning. The septuagenarians I share the ward with watch a lot of This Morning on the TV and are desperate to discuss Holly Willoughby with me. After two months, I can’t walk without a crutch but I know how to craft Halloween decorations.
I become obsessed with time because I feel it slipping through my fingers. Each day just rolls into one in the hospital, by design. I am able to read, so I read about how clock time has been organised – a colonial pursuit, of course – and its links to capitalism; how Māori relied on astrological patterns before the west squeezed them into 24-hour days to make an organised industrial labour force. I read about protests when “London time” was first rolled out to the rest of the country in the 1800s, and people rejected it by smashing clocks in the street. At 37, I feel it going, going, gone.
Whole chunks of time are lost to the ether as I swirl in and out of consciousness, and events that I might be aware of – Saltburn, Farage in a jungle, a new Beyoncé album – all blur into one mass of confusion as I hear snippets of information. My friends make me a zine of pop culture that I’ve missed – it is one of my most treasured possessions. I keep meaning to ask R what’s going on outside when he visits, but I forget.
I have a bag full of medication I don’t recognise, and I don’t even bother Googling it because, what’s the point? Knowing what it is won’t make a difference to me taking it. I lie under the clinical fluorescent lighting and think about putting more shit into my body, but immediately submit because considering all the drugs it has consumed in my life it would be a bit rich to complain about blood thinners. I let my mind drift over the chemical formulations on the backs of bottles as I think about how weird it is to take medicine for something when I’m not really sick. Or maybe I am sick. As I drift to sleep I think of my life in the four walls of this ward and how the sounds of beeps from the monitoring machine are going to go on for ever.
I love the nurses. Stacy-Ann, who stands on guard as I shower. One Friday she does this and I’m so overwhelmed by the kindness that I swallow a little tear. Geraldine, who makes me laugh; the stern warmth of Margaret, of Leonie and Dr Li Yan. “You’re in good hands, don’t worry,” she tells me. Usually a comment like this would make me do a fake smile of acknowledgment, but today I really think about it, about all the bodies going through trauma and change, and of people trying to say the right thing, and I’m comforted.
After four months, a version of me goes home and the doctors tell me that recovery is now physical. Home is a familiar space, but I’m taking an unfamiliar body into it. R is at a loss at what to do and decides to take control of the fridge shelf, filling it with Dr Pepper, Fanta Lemon and Cherry Coke (my post-aneurysm addictions). I’m delighted. He tells me that when he was getting ready to go to Bristol, terrified that I might die, he had seen a cup of tea I had left on the counter, and that this trace of me had made him burst into tears.
I can’t go anywhere without my wheelchair. In the safety of hospital I can do a few steps with my crutch, but now I’m exposed to the elements and there are new needs, like Nando’s and eyebrow threading. Slowly, I graduate to my trusty red walker, then a crutch, then a walking pole, and now, finally, a foldable stick: progress. It’s as if everything has frozen while I’ve been away and every surface is slippery. I want to wait for it to thaw but I know that’s not an option. I have to embrace the precariousness.
I feel invisible, concentrating on walking around the block, but I’m mistaken because my neighbours stop me all the time, saying “Well done” as they witness progress. The neighbours are heartwarming but the unsolicited advice – mostly from random men – is tedious. (“Are you struggling cos you took the vaccine?”, “You look nice!”) There is a weird sense of entitlement over women’s bodies, I think. I am pleased R has witnessed a bit of this, in the way that it feels oddly affirming when your white friend witnesses racism against you, or you are talked over by men at work. This stuff happens all the time. Mostly, I hear strangers harp on about the benefits of sea moss to me and a true quizzical fear that my burst aneurysm came out of nowhere. Was my lifestyle unhealthy? Was I not active? Stressed? Most people want answers to the unanswerable.
I glean that this country is made up of people with head injuries, who tell me about them in the most nonchalant ways: at the gym, on a road, anywhere. One guy got clipped by a tube on a crowded platform, one lady had a stroke at her son’s sports day and thought she was just dehydrated. I listen to these stories with fascination and fear, and marvel at their breezy tone. Though, I suppose, they must be thinking the same thing about me.
I have trouble coordinating the top and bottom halves of my body when I dance. It’s been a year, but, still, the right side has been affected by my brain bleeding and doesn’t obey my commands. I do all my writing with my left hand, which is a pain, but somehow it doesn’t bother me as much as not being able to dance.
I go to a night called Out of Body Pop in Dalston, east London. The music artist Kindness is DJing; it’s billed as a space for all bodies, and is roomy enough that I feel safe that no one will knock into me. But all I can do is precariously sidestep, holding firmly on to R.
Later, I try to lose myself in the kitchen in the middle of the day to Beyoncé’s Renaissance, but the damage to my cerebellum means I feel as if I’m on the verge of falling. I crumple and give up. The things I used to communicate with my body are messed up, and I might never get that ability back.
I understand what disability activists such as Kym Oliver and Jumoke Abdullahi, Judy Heumann and Sick Sad Girlz are saying now: it’s the feeling of constantly navigating in a world not designed for you. I start going to a dance class that encourages me not to be fearful, to stretch and walk and feel music again. At first, I’m unsure, because these people doing interpretive dance don’t feel like my people. Then I get it. They love music and it commands their bodies, too. They get it.
After a few months of class, I take my laptop into the kitchen – the walk feels like ritual. I lovingly place it open, click on Kelela, and turn it up as high as the laptop speakers let me. I let the music realign my body, wake up the parts that had been inert, create some space, and just dance, badly, on my own. I put it on repeat, and dance over and over again to the same song, letting something break inside me, and cry until I’m hoarse.
As much as I’ve had to make peace with loss (running for the bus, badminton, anything that requires physical speed), I let in a lot of unexpected joy. I have joined groups. The adapted cycling club at the velodrome has taught me about how different bodies require different things. An older woman I call auntie at the pool, who goes every day and walks up and down in the water until it gets too deep, has taught me about resilience. Lecturing at the University of Westminster has taught me that reading books is a balm when you feel as if you know nothing else. My dance class has injected delight back into me.
There are new teachers in my life. The social model of disability outlines how different kinds of bodies are often not part of architectural conversations, but my occupational therapist has shown me how a sharp design mind can transform a space – she notes solutions for a slippy rug in the living room, puts up handrails and introduces me to Ableworld (a retailer and website selling design adaptations from cutlery to lights).
When my physio comes to my front door she seems shocked that I’m wearing socks. Our brains look for information all the time about terrain, she says, so I should be barefoot. I listen, even though it’s winter. Another physio tells me about constraint induced movement therapy (CIMT) and suggests I wear a mitten on my left hand to make me use the weakened right one, which I do. Another physio has a simple phrase that rings in my head: “Use it or lose it.”
‘What if this is just me, like this, how I am, for ever?” I ask R, who is sleepy, in bed at 2am while I’m still awake, thinking about my inability to hop. He turns to me and kisses my forehead. “If it’s this, that works. We are perfect.” I feel such a rush of love for him I hug his neck, nuzzle my face deep into it. In the few seconds this takes, he is fast asleep, snoring gently as if he has released a thought he has been carrying. Fuck the hops, I think.
I scroll the TikTok hashtag TBI (traumatic brain injury). It is cool because it is filled with videos of people who are closer to my age, although they all play Sia’s Unstoppable, so I have to watch on mute. I follow various accounts and spend the next few weeks idly watching videos about motorcycle accident recoveries that used to give me joy and now terrify me. I decide to unfollow – TikTok, I decide, is for fun and dancing.
I spend time thinking about how I feel, maybe too much. The feeling of being close to death is receding, but for a few months it was near. I sometimes rush to profundity when I’m told I could have died, thinking of this existential thing that has happened. But life moves on and the feeling becomes smaller and smaller. I can feel the shunt that is still in my head and the tube running down my neck. It will be there for life and I feel like a cyborg. I like that.
“Your job is recovery,” says an author called Emma, gently, when I bring up writing. She’s right. I spend a year walking round my block, and reading, before taking on more and more: talking on panels, writing, editing. I walk 6,000 steps in one day – a PB. I can feel my voice returning, all while medical ones remind me that the majority of gains are seen in the first two years. I don’t know what they mean, exactly, but I just continue. I realise that thinking in binary terms of Before and After is limiting and false. The two time frames merge until a big bang-type crash happens and I appear. I sometimes feel as if I’m floating away in a new body to new things … then find myself writing again, in my office, and I remember that I’m the same, but more. “That’s a good way to be,” I think. Then I carry on.
