‘The worst thing is losing your hands’: Hanif Kureishi on life as a tetraplegic
British Pakistani author Hanif Kureishi shares how his world has changed since the accident that left him paralysed below the neck.
By Mick Brown
On Boxing Day, 2022, Hanif Kureishi was sitting at a table in the Rome apartment of his partner Isabella watching Liverpool play Aston Villa on his iPad. He had just seen Mo Salah score and was sipping a beer when he began to feel dizzy. He leant forward and put his head between his legs. A few minutes later, he woke up in a pool of blood, his neck in a grotesquely twisted position, Isabella on her knees beside him.
Nothing he can now say – sitting in his motorised wheelchair in his west London home, his carer Blandine sitting beside him, holding a water bottle with a straw to his mouth when he needs to drink, scratching his head when he feels an itch, answering the telephone on the table in front of him when it rings – describes the moment he fell better than the words he dictated to Isabella in the days immediately afterwards, unable as he was, and continues to be, to write a word himself.
“It was completely random,” Kureishi says of the fall that left him tetraplegic. “I wasn’t even drunk. You have no agency. That’s what’s so shocking about all this.”Credit: Kalpesh Lathigra/Telegraph Media Group Holdings Limited 2024
“I experienced what can only be described as a scooped, semicircular object with talons scuttling towards me. Using what was left of my reason, I saw this was one of my hands, an uncanny thing over which I had no agency. It occurred to me there was no coordination between my mind and what remained of my body. I had become divorced from myself. I believed I was dying, that I had three breaths left. It seemed like a miserable and ignoble way to go.”
Kureishi’s accident left him tetraplegic, paralysed below the neck. He has some sensation, and some movement in his limbs, but it is severely limited. He is unable to walk, but can lift his right arm about 25 centimetres, his left arm a little less.
Kureishi lives in a three-storey terraced house on a quiet street, but he is confined to the ground floor, his bed at one end of the open-plan room, the kitchen at the other. There are rooms upstairs, he says in his half-spiky, half-amused tone, that “I haven’t seen for years”. On the bookshelf are books about film, about David Bowie – and books by Arthur Miller and Henry Miller – “all the Millers”, he says. It was reading Henry Miller, James Baldwin and other writers as a teenager that fired in him the belief that the writer’s life “with all the carousing, f---ing, fighting and general riotous living seemed like something to aspire to”.
The first editions and foreign translations of the numerous novels that he went on to write over the years – The Buddha of Suburbia, My Beautiful Laundrette, Sammy and Rosie Get Laid, The Black Album, Intimacy, all of which have made him one of the most provocative voices in British postwar literature – are stored in the basement. A flood there a few years ago destroyed the newspaper cuttings and reviews his father had collected over the years as his son’s star rose. His manuscripts, diaries and original screenplays are now in the British Library.
Kureishi is 69, heavily set with close-cropped grey hair and an inquisitorial gaze. He’s feeling chilly and asks Blandine, a placid, young woman who sits silently at his side, to help him into a pullover.
Kureishi on the set of London Kills Me, a 1991 movie he wrote and directed.Credit: Alamy Stock Photo
This is how his day goes. At 8am, Blandine and another carer “haul” him out of bed, with the help of a hoist. “It’s like raising the Titanic, mate,” he says. It takes two hours to get him washed, dressed and ready for the day. Then his son Carlo arrives, to begin work. In the afternoons friends visit, he makes the occasional excursion to the outside world and has physiotherapy.
Britain’s National Health Service pays for a full-time carer, but the physiotherapy is paid for by Kureishi himself. “I have it every day, so it’s bloody expensive. But otherwise you don’t move; your body just deliquesces.”
At 7pm, another carer arrives to help put him back to bed. “I go to bed, basically, when the government says so. It has to be regular. So that’s about it.” He manages to sleep, but he has terrible, recurring nightmares. Isabella sometimes hears him screaming.
From the moment he came to in intensive care in an Italian hospital, Kureishi says, he was compelled to write. “I was really a veg. I could barely move a f---ing thing. But I could speak, I was cognitively aware. I found that very depressing. I thought, ‘Who am I, what am I now?’ I really wanted to write and become that person again, rather than just being a body in the medical-industrial complex – just a body for the nurses and doctors and the machines.”
Unable to type himself, he dictated his thoughts, a diary of his predicament, to Isabella, who would sit at the foot of his bed writing on her phone. A tortuous, time-consuming process. Writing is a physical activity. “English is her second language, so it was tricky.”
Now he works with Carlo, a screenwriter, and it comes more easily.
He has three sons, Carlo and his twin Sachin, 31, and Kier, 26, from two previous relationships. Carlo started to publish the results as a blog on the online platform Substack. “It was a sort of letter, ‘Dear World, are you there?’ And there was a response,” Kureishi says. “And then I wrote another, and there was a bigger response. And then there were articles, and things on the radio, and it went really crazy. People would write back, saying they were very moved and upset and intrigued by my story. So I had a world going on.”
Now these diaries have become a book, Shattered: A Memoir. “You could say that trauma creates opportunity. I would never have seen Carlo every day, even though he only lives around the corner. I had to find a new way of writing, so it gave me the opportunity to write this book. And then I’ll write another book. And then I’ll write a film of the book. So the two of us have a new bond, which is great.”
Shattered is a thoroughly compelling, and deeply harrowing, account of Kureishi’s life from the moment in Rome, when, as he writes, “I fell on my head and was altered forever,” through his confinement in a succession of hospitals, to the day, almost a year after his fall, when he returned to his home, “strapped in the back of a converted van”, struggling to remake his life.
There are many people, as he says, who are in the same position as him. He met them in hospital. People who had fallen down the stairs, tripped on a paving stone, dived into a swimming pool, and found themselves paralysed.
‘The worst thing is losing your hands. If you spent an hour with your hands tied up, you’d see how much you need your hands.’
Doctors are unclear about why he should have fainted, leading to the fall. Scans revealed he had not suffered a stroke, but in the days before the accident he had felt unwell. He had an appointment to see a doctor on the day after his fall – which, of course, he could not keep.
“It was completely random,” he says. “I wasn’t even drunk. You have no agency. That’s what’s so shocking about all this. There’s nothing you can do. It doesn’t matter if you’re a good person or a bad person, a careful person or a negligent person. That’s the way the world is.”
But few could write about it with the piercing candour and clarity that Kureishi has done. There is frustration, anger, sometimes despair, but not a trace of self-pity. The boredom and painful indignities of hospital life, the constant prodding and probing. “You move beyond any sense of privacy or vanity. Your body belongs to the system,” he says. “That’s why you have to protect your mind.”
“The last time a medical digit entered my backside was a few years ago,” he writes. “As the nurse flipped me over she asked, ‘How long did it take you to write Midnight’s Children?’ I replied, ‘If I had indeed written that, don’t you think I would have gone private?’ ”
The book is sometimes very funny, I say. “People say so, I didn’t find it funny to live through, I have to say.” But above all there is resilience, a determination not to be defeated by circumstance, to carry on, because what else can one do? “I will not go under,” he writes. “I will make something of this.”
Blandine brings his water bottle to his lips. Nowadays, he says, he is completely dependent on her kindness. “The worst thing is losing your hands. If you spent an hour with your hands tied up, you’d see how much you need your hands. That’s probably the worst thing of all.
“I’ve died without dying. Everything that I would have wanted to do in the future at my age I can’t do. I can’t go to Paris on the train, I can’t go to Italy, where Isabella and I used to spend a lot of time together. If I start thinking about all the things I can’t do, I get upset. But there are things I can do. I can talk to you, listen to music, friends come in and out. I can write. So it’s not quite as bad as being dead.”
In 2015 with partner Isabella. “Not a day goes by when she doesn’t suffer,” Kureishi says of their life now.Credit: Alamy Stock Photo
His time in hospital gave him ample opportunity to reflect on the blessings, and the failings, of Britain’s NHS. For a few months, he was in London’s Charing Cross Hospital, not far from where he lives. “And that building is literally falling apart. You stand outside and you see wires hanging down, chunks of bricks falling off. I’ve got a good sense of how the NHS works from the inside, how understaffed it is, and overworked everyone is, and how almost everyone there is a recent immigrant – from South Africa, India, the Philippines. I was the only Englishman there, mate,” he laughs. “And I’m not even English. It’s wonderful when it works, but it is entirely dependent on labour from the rest of the world. And there is a real deadlock in politics to do with immigration, and how old people in this country are going to be looked after in the next 50 years.”
‘You realise how kind people are … They’re going to feed you and then brush your teeth for you. That’s love, really.’
This is something you really learn, he says. About the kindness of strangers, the people who care for you, and the people you meet and befriend on the ward, sharing their suffering. “I have to say that becoming paralysed is a great way to meet new people,” he writes in one entry, and there are friends who rallied round, old and new. “I meet more people here in a week than I did in a year in my previous life.”
“It’s like going to your own funeral,” he says now. “But actually I’m not dead. There are loads of random people I hardly know who’ve come to see me, and
that’s so great.
“An actor who’d been in a play of mine 10 years ago turned up with a box of chocolates, told me funny stories then f---ed off home. I’d never thought about him, and I’m sure he never thought about me. But then he did, and I feel very blessed by it. You realise how kind people are, how sweet they are and how sorry they feel for what’s happened to you. They’re going to feed you and then brush your teeth for you. That’s love, really. It’s beautiful.”
This is another thing about finding yourself disabled; not just how you deal with it, but how other people do. The etiquette of greeting the disabled, and how it befuddles people, is one of the things he’s written about. He tells the story of meeting someone on the street when he was out one day with his son Sachin. “I can’t really shake hands. Some people give you a kiss. This guy stared at me then patted me on the head three times. People would never pat you on the head normally, would they? People talk to you in a louder voice, as if you can’t hear them, or they talk to the person you’re with as if you’re not there – ‘How’s your dad?’ It’s all a bit awkward. People want to be kind, they’re not being c---s, but they don’t know what the etiquette is – do they crouch down? Do they stand up?”
One of Kureishi’s sons, Sachin, shaving his father’s face.Credit: Courtesy of Hanif Kureishi
He interrupts himself. “Can you blow my nose, Blandine, please.”
He remembers his friend Salman Rushdie telling him how, during the time he was under fatwa, the one thing he needed to learn was patience. There were days, particularly during his time in the spinal rehab facility at the Royal National Orthopaedic Hospital in England’s Stanmore, where Kureishi would spend hours lying on his bed, staring at the wall, unable to move or do
anything. “You get a terrible sense of time being wasted. But I got through it, and I’m here.”
He pauses. “You begin to think about life, whether you’ve led a good life, or a life with some point to it; to consider your relationships with other people, whether you’ve treated them well or they’ve treated you well. You think a lot about the past. That’s your cinema – that holiday in Margate, you remember every minute of it. You investigate your own past in detail because you’re so distracted in everyday life.” In this way, Shattered became not simply a record of the time spent grappling with his accident and all that has flowed from it, but of his life.
Kureishi’s father was Indian, from a wealthy Chennai family, who migrated to Pakistan at the time of partition in 1947, and then to Britain in 1950 where, hoping to study law, he was obliged to take a desk job at the Pakistani embassy to make ends meet. He met his wife Audrey on a double date, and they settled in the south London suburb of Bromley, where Kureishi was born in 1954. Kureishi’s memories of Bromley feature prominently in his Substack. The tedium of growing up in the suburbs, the manners and customs, the way people spoke – in an accent that would sneeringly be called mockney, and that surfaced in the speech of David Bowie, who also grew up in Bromley, and Mick Jagger, who grew up 16 kilometres away in Dartford, “before they went American”.
“That accent,” he writes, “which I still do when I’m bad-tempered, would have helped you fit in, saving you from being beaten up at school or on the street, since the locals weren’t keen on anyone who didn’t speak like them or, God forbid, showed an interest in anything artistic.”
He went to the same school as Bowie, Bromley Technical High School, but 10 years later. Bowie would later write the soundtrack for the TV adaptation of The Buddha of Suburbia and become a friend.
The art teacher there was the father of another pop star, Peter Frampton, and would allow the boys to practise their guitars in the art room. Everybody wanted to be in a band. “I was the only one that didn’t have the competence,” Kureishi says, “and wanted to be something else, a writer.”
He was part of a group of friends who in the punk days became known as “the Bromley contingent”, and who included Bill Broad and Susan Ballion, who became better known as Billy Idol and Siouxsie Sioux – “although she comes from Chislehurst, which was posh,” Kureishi says.
Kureishi with sons Sachin, Carlo and Kier. Carlo, a screenwriter, published his dad’s dictated post-accident thoughts on Substack. They became his new memoir, Shattered.Credit: Courtesy of Hanif Kureishi
He writes on his Substack about being on a train with Billy Broad, and Broad slipping him a tab of LSD and telling him to throw his watch out of the window – the watch Kureishi’s mother had obtained with Green Shield stamps and gifted him for his 16th birthday. “Billy said, ‘Do it now. Time doesn’t matter,’ ” Kureishi writes. “I complied.”
“We sit here, me and Carlo, and we can write about any old shit,” he goes on. “He comes in on a Monday morning and says, ‘What do you want to write about this week, Dad? Not Bromley again, please.’ ” Kureishi laughs.
The LSD incident would later turn up in The Buddha of Suburbia, his first novel, published in 1990, based on his own life as a teenager. “What I wanted to do was to find out whether I could write a traditional novel, with a story and characters, but about all the stuff that was happening around me, integrated with writing about being a mixed-race kid, with a father who’d come from India. Trying to work out how to get all the disparate bits of my life into one book.”
Kureishi’s father was a frustrated novelist who spent the evenings writing books that would never be published, but that was no discouragement to his son. Kureishi’s uncles had been writers too, and it was calling himself a writer as a teenager, “even though I hadn’t yet written anything”, that would give him an identity he could cling to. “After all,” he writes in one entry from his hospital bed, “at school many words had already been applied to me, words like ‘Brownie’, or ‘Paki’, or ‘Shit-face’, so I found my own word, I stuck to it, and never let it go. It is still my word. Excuse me for a moment,” he adds, “I must have an enema now.”
The question of identity is something that has been central to Kureishi’s work. His father was a Muslim, “but he didn’t identify as one”, Kureishi says. And neither did he. He wrote about the rise of Islamism in his novel The Black Album (1995) and his screenplay, My Son the Fanatic, identifying fundamentalism as “dictatorship of the mind … the failure of our most significant attribute, our imagination”. And he worries about it still.
“It should worry everyone because it’s an anti-liberal theology which is very difficult for a liberal ideology to deal with, because liberal ideologies are supposed to be tolerant, but you end up tolerating something that is not tolerant in itself, and so what does liberalism do?”
We talk about how identity politics so often conspire to divide people rather than bring them together. “We’re really stuck with this. Most people’s identities are so limited. You might say, ‘I’m a Muslim,’ but what the f--- does that mean? It doesn’t mean anything. You’re much more complex and complicated as a person than a simple definition like that would ever be able to carry. We all have multiple identities. You might say I’m a gay man or a straight man, on the other hand I’m English, or I’m a Manchester United supporter. That’s where writing comes in, where you see in a novel a much broader sense of what people are, they are multiple. We are not simple.”
He’s a Manchester United supporter? “It’s quite a sore subject, that one, Mick. Could you lay off that one. People often say when they interview me, is there anything you don’t want to talk about? I say, ‘Yeah don’t mention f---ing Manchester United.’ ”
He and Isabella first met in 1998, when she was working as a publicist for the Italian company that published Kureishi’s book Intimacy. But the relationship did not grow in earnest until 2014, and in 2016 she moved to London to live with him. She is now a partner in a Rome literary agency, but works mostly from their home in London. “Her life has closed down as well,” Kureishi says. “It’s very hard for her to find the time to work. Not a day goes by when she doesn’t suffer. It’s terrible for me and for her.”
“It’s been difficult for us all,” Isabella tells me. “There are ups and downs, and a lot depends on the physical problems that come up. But Hanif is quite amazing, actually. He works, he has a very positive attitude. He is 100 per cent – shattered, but very much himself.”
Kureishi has never been married, and for years the subject of marriage between him and Isabella has been a gentle running joke. Now, he says, he’s definitely going to marry her. “She’s said she doesn’t want to get married to me in a wheelchair; she wants to wait until I am up and about. But the prospect of that is a bit far away, so I’m going to have to persuade her that she won’t have to crouch down next to me at the end of the aisle.” He pauses. “I think she’d like to, actually.”
The afternoon is getting on; he has physiotherapy soon. He’s getting stronger, he says. On Fridays, he goes to hydrotherapy. Supported by two physios, he is able to walk – “Literally!” – around the pool. “It’s very, very liberating.” But his doctors don’t offer a prognosis. “They never say, ‘In two years you’ll be walking’ or anything like that. But I’m getting stronger, and also I’m getting more used to being disabled.”
He was recently transported to a party at a friend’s house, “which was quite difficult because everyone’s bending down and all that business”. And he’s planning a booze-up at a restaurant down the road when his book is published. “So I’m doing more convivial things. I’m going to have a better Christmas this year than I did last year.”
And he is planning an Elvis wedding in Las Vegas when he’s able. He’s determined to get there.
This is an edited version of a story that first ran in The Telegraph Magazine, © Mick Brown/Telegraph Media Group Holdings Limited 2024