Clemency Burton-Hill: 'There's my life before my brain exploded, and there's my life since'

Either she could go with them and find peace, leaving behind her beloved family "who the beings said would be fine". Or she could go "back" – to her husband and her two young sons, and to her life – "but it would be really hard".

"It was, I guess, the great turning point of my life – or death," she says. "Whatever liminal space I was in, I wasn’t conscious of being trapped in any way, caught between going with them or…" her voice trails off. "These beings were showing me something and they made it very clear: I get to choose – but I don’t get to change."

Burton-Hill, then aged 38, chose to come "back" – to her family, to life, to a life that would be characterised by, as yet, undefined hardship. Later, she would awaken to find actor Eddie Redmayne standing at the end of her New York hospital bed.

(As odd as it is, do not be distracted by this surprise Eddie Redmayne cameo. He and Burton-Hill have been friends since university – Cambridge, naturally – from where the latter graduated with a double first in English, Redmayne with a 2:1 in History of Art.)

Instead, shall we talk about the vision – or a scientific explanation for it?

"I wasn’t an atheist. I was a sort of agnostic," she says. "I know we understand the universe by scientific reasoning but there are things we haven’t been able to prove, or disprove, through science. All I can say is, that moment – if it was a moment or whatever it was – was absolutely real. I don’t know what it means and I don’t have the answers. I am a wonderer."

Besides, Burton-Hill has enough to deal with in the here-and-now without obsessing about the hereafter. "I chose life," she says, firmly. "I choose life." Even if that life is, as advertised in her vision, really hard.

"There’s my life before my brain exploded, my former life, and there’s my life since," she says, without a hint of self-pity. Of course, if there were self-pity there, that is allowed.

As Burton-Hill says: "I think it’s really important that there is a bit of grace given to people [like me]. Yes, they’re doing the absolute best to be upbeat, and 'Onwards!' and all that. But it’s also OK not to feel like that all the time and to be honest about it.

"I’m beyond grateful that I get to have a future life, but I also miss everything from my former life. I can see how I can learn from and evolve through experiences I’m having now, but it’s exhausting thinking like that all the time. It would be so much easier if I’d suddenly become some kind of guru through all this. But I haven’t."

In her former life, Burton-Hill was a Renaissance woman. She wrote books (fiction and non-), played concert hall symphonies and performed at Glastonbury. She starred in TV dramas and presented the Last Night of the Proms. And on top of that, she married a handsome man – a diplomat – had two kids and moved to New York.

"I was not a person who wasn’t already drinking life up. I just wanted to do all the things, go to all the places, meet all the people, taste all the things," she says. "I know I was lucky and I know I was privileged."

These days, Burton-Hill has no feeling at all in the right side of her body. She can’t lift her children to cuddle them or play her beloved violin as she used to. She can’t tie her own shoelaces or cook dinner or use a pen or do the dishes or smile. She lives in the shadow of seizures and under the cosh of crippling, crushing neurological fatigue that most days confines her to bed for hours. She can’t sleep because sleep disturbance is one of the symptoms of neurological fatigue, but she can’t do anything else because other symptoms include physical exhaustion, brain fog, photosensitivity, dizziness, anxiety and emotional volatility. Burton-Hill just has to endure it, to last until it passes.

At this point, the hardship mentioned in the abstract in Burton-Hill’s vision is now very well defined – and it defines how she spends her days. And then there’s the aphasia. Most commonly caused by stroke, aphasia is defined by the NHS as "when a person has difficulty with their language or speech, usually caused by damage to the left side of the brain… It affects their ability to communicate. It doesn’t affect their intelligence."

Though she has always worn her learning lightly, Burton-Hill is clearly as whip-smart as ever – I met her, briefly, in 2015 and thought her dazzling and charismatic – but it takes her an enormous neurological and cognitive effort to say even the simplest things. So the speech of this once consummate broadcaster, whose whole life was about communicating – with other people, about her passions, to tell important, epic, intimate stories – is now halting, hesitant and sometimes has a tremor to it. It’s like some awful fairy tale curse.

But Burton-Hill, who was born in Hammersmith, west London, was not jinxed by a vindictive witch. Rather, she was afflicted by an arteriovenous malformation, or AVM. An abnormal tangle of arteries and veins, AVMs usually form during development in the womb or shortly after birth. Some people with AVMs live their whole life without ever knowing they have one. Other people discover their existence only when they rupture.

Burton-Hill says that there’s a certain solace in the fact that her situation now is no one’s fault and nothing could have been done to prevent it. "It’s really clear and clean in that way. There was no one to blame. Quite the opposite, in fact. I was only saved by extraordinary human beings."

Extraordinary human beings like her neurosurgeon Christopher Kellner, who describes employing "basic carpentry skills" to open her skull. (Later, Burton-Hill shows me the scar that runs through her hair like a fat worm, joining what remains of her skull with the fake skull that constitutes almost half of her head.)

"I probably wouldn't have been able to survive if I'd known that something I had done had caused this," she says. "But there was no Sliding Doors moment in which I acted or didn’t act, stepped out onto the road or didn’t step out onto the road. The burden of thinking 'if only I hadn’t done…' would be too much for me."

As it is, Burton-Hill’s burden is weighty enough, her road of recovery arduous. It is a journey documented in My Brain: After the Rupture (BBC iPlayer), a heart-wrenching, insightful film that charts Burton-Hill’s life since she regained consciousness in February 2020.

Unflinchingly, it details Burton-Hill’s frustrations, furies and disappointments, her little victories and hopeful moments, her determination – and occasionally, her despair – as she starts the process of recovery and tries to put herself, and her life, back together.

Attempting such herculean endeavours, Burton-Hill is very hard on herself. I ask if, since making the film, she’s being more compassionate with herself. She looks at me with flinty bafflement.

"I’m probably harder on myself now, although I wouldn’t feel that I was hard on myself. It’s just normally how I deal with myself and it’s what I need."

If she’s thrifty with her self-compassion, she’s unstinting when it comes to other people, and lavishes her sons with it, or tries to. Some of the saddest scenes in the documentary are of Burton-Hill apart from them, separations enforced by her fragility or fatigue. How does she think her injury affected her children who were five and one at the time?

"How long have you got?" she says with a grimace, before qualifying herself. "It’s really hard to know yet so I can’t sort of answer. Plus, the last five years that everyone has had have been difficult; I was the first case of Covid in the hospital – patient zero – and then came lockdown. I just keep returning to feeling very thankful that it could have been much worse on so many levels."

So much about Burton-Hill’s life has changed, some things temporarily and some things irrevocably. One thing that hasn’t changed? Her.

"I think I’m the same," she says, gingerly. "I hope I’ve evolved and grown, obviously, but it was really important to me that I could identify the things that made me, me. And when I checked, me was still there." This isn’t always the case following brain injury or trauma when some survivors’ personalities are so altered that they are strangers to their families and friends. Again, Burton-Hill considers herself lucky, although there is pang of yearning when she thinks of the things she cannot currently do.

"Maybe the mini tragedy of my life is that I’ll be unable to live the way I did before, live life as fully," she says. "But at least I know I really did squeeze the juice out of life when I could, and I never stopped. Maybe my brain or my gut knew I had very limited time to do so, so made me grab life by the balls. I've definitely always had a sense that we're just in this for a second – so bloody make the most of it. No one gets out of here alive."

My Brain: After the Rupture is available to watch now on BBC iPlayer.

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