So I ran a writing group of brain injury survivors, and we just generated a couple of little chat books and launched them at different literary festivals, and what started to piece together was just how starkly different most media representations are of both coma and brain injury and the lived experience of those conditions, really.

Wow. But I guess the question is how, why? Did you have experience of brain injury before or were you coming from the literature and the media and thinking, wait a minute, is that right?

I was watching Life on Mars. Alex Garland's The Coma as well, I came across and I'd read that. I think the last season of The Sopranos, Tony is in a coma for a few episodes.

And what all these, because a lot of all these texts are representing the internal state of coma and what they were all presenting with these very complex dreamscapes, complex nightmare scenarios. And then my friend, he's a novelist, Steve Hollyman, he just drafted his first novel called Lairies and part of his novel, it's about somebody who comes out of a coma and his representation was massively different from these other representations. So he looked at the coma as being a void and he looked at the long term neurological conditions of brain injury so that the difficulty finding kind of adapted accommodation, losing loved ones, memory problems, emotional lability and so on.

So I asked him why his representation was so different and the answer was very simple actually, because he'd spoken to brain injury survivors about their, well, about their journey and about kind of post trauma, whereas a lot of these fictional texts, protagonists emerges from coma with cognition immediately intact and very often no signs of long term neurological conditions or physical disabilities.

And James Cracknell similarly talks about these post-coma islands, the experiences of these weird dreams. But I think that is to do with the brain reawakening and that the synapse is kind of firing again.

Yeah. There's that one thing then about the reality of what it's like to be post-coma and what have you found? What do people tell you who have been through that process? Are there some common themes? Are some people, yay, suddenly I'm all right again and others just no memory like me?

So I'm also a member of the Head Injury and Homelessness Research Group in Sheffield. that we formed, and Steph Grant was one of the founding members of the writing group and founding members of HIHRG, the Homelessness Research Group we're into. But he, I mean, he talks a lot about just the extent of that post-traumatic amnesia and just how severe it was.

So for him, it went on for weeks, months even, whereby he doesn't, he can't remember the people around him or he has sudden severe panic attacks. He doesn't know where he is. And this would be going on for weeks, even months.

And so he has this very strong image of sitting in a chair and trying to read J.S. Mill's Utilitarianism. And there's a crying, smiling woman that he describes. There's a little boy dancing and he doesn't know, and this is his wife and his son.

And he says that nothing goes into his head from the book, but he looks the part. And it's this idea that he's playing the role of the Steph that he was pre-coma, pre-brain injury. He's wanting to do that to kind of get back to that person, but also to please others.

But that person is completely removed. Whereas if we look at the fictional text, so something like Marabou Stork Nightmares, the protagonist in that, I think his coma is about five years. So straight away, it's not a coma anyway.

So anything longer than four weeks of an unconscious state, we're looking at going into a prolonged disorder of consciousness, either persistent vegetative state or minimally conscious state. Or I think kind of there's a push towards describing, is it unresponsive wakefulness syndrome to kind of get away from that stigmatising language of vegetative state, right? But I think Royal College of Physicians is still using PVS. But yeah, so his protagonist, Welsh's protagonist, is in coma for five years.

And it seems as though he has control over his coma and to the depths that he can move between. And when he emerges from it, it seems as though cognition is completely intact and he's the same person. Similarly, in something like Alex Garland's The Coma, it's difficult to tell how long that is.

Certainly Iain Banks' The Coma, again, I think that's about five years and he seems to emerge cognition intact. Stephen King's The Dead Zone, that is five years. And again, he emerges cognition intact.

But what's interesting about King, actually, The Dead Zone. Is that whilst he does emerge seemingly the same person, there's lots of description about the physical strains of the coma. So they talk about muscle atrophy and the difficulty walking. The character Johnny Smith, John Smith, typical everyman character, if you like.

As a kid, he has visions of the past and the future, but then he's in an accident as an adult. When he emerges from his coma, these visions, these prophetic visions of both the past and the future, they become more intense. And so he stops tragedies from happening and so on, which culminates in him meeting a prospective senator, and he sees the future of this senator and becoming president and basically causing an apocalypse. But what's interesting is every time he has one of these visions, it damages his brain further, which is quite interesting, I think, because obviously it's not fully accurate, but you've almost got a metaphorical example of the impact of secondary brain injuries after a catastrophic one, really. But wrapped up in a fantasy novel.

I mean, they’re three big examples are just all within the coma. There's another one called The Ninth Life of Louis Drax, that's by Liz Jensen, that split between Louis in the coma and his physician who's trying to bring him out of coma. And then you've got examples like the third film in the 28 Days Later.

So at the beginning of 28 Days Later, the protagonist, Jim, played by Cillian Murphy. I think I think it opens with the kind of protesters breaking into the biochemical lab. And that's how the rage virus comes out.

And then you straight into Jim coming out of coma. But again, he's four week coma and he emerges with, I mean, four weeks is right at the end of severe coma, but then kind of within a few minutes, he's wandering around a deserted London in his scrubs. And funnily enough, like another example that follows that, it's very similar to The Walking Dead that is originally a comic book.

It's again four weeks. Can’t remember the protagonist's name is the sheriff characters in it, played by Andrew Lincoln in the series. But again, within a couple of frames, it shows him staggering out of bed, holding on to his grip and slumping to his to the floor.

But then within the next frame, he's walking down the corridor.

Is there a clash? Does it matter?

It is it is difficult. It is difficult to do that. But I guess the impact on collective understanding and the public understanding is is bigger than a lot of people would think.

So in terms of very much can lead to stigma and misattribution. So, for example, I mean, all the brain injury survivors are spoken to very often that they'll talk about how, for example, a disinhibited behaviour might be interpreted as being drunk if they take that in combination with maybe slurred speech and difficulty walking. And this overall, there's this illusion that because coma is equated with sleep.

And very often these texts don't look at the longevity of brain injury and the permanence of brain injury, then brain injury is completely erased. So then that leads to huge stigma, I think, because then the lived experience of brain injury survivors that in itself almost becomes invalidated. And the writers in the writing group talk about that often.

I think one example that sticks in my mind is Douglas Coupland's girlfriend in a coma in that he his protagonist, again, is in extensive coma. And again, he does describe the physical impact of that muscle atrophy and so on and happens to be in a wheelchair. But she emerges from a long term coma and it becomes like a fantasy narrative.

She herself is very like the Johnny Smith character from the Dead Zone that she becomes almost like a messiah figure that's going to save the world. And it's interesting what he says about why he used the coma. He talks about it in interviews that the coma presents this opportunity for change and this opportunity of being a completely different person or opportunity for growth.

But it's hugely problematic because he's based his case on the famous right to die case of Karen Ann Quinlan that went through the courts. She was in a persistent vegetative state and the family went through the courts to try and withdraw artificial nutrition and hydration. And so, I mean, even down to the name.

So that was Katherine Ann Quinlan and or Karen Ann Quinlan. In his narrative his character's name is very, very close. He uses the exact same cause of the coma as the real life case.

Now, this becomes really ethically problematic, I think, because he's talking about this notion of growth, this notion of being a different person. But he's basing it on this case, this tragic case of this young woman who'd taken a few of her mother's uppers at a party and went into a persistent vegetative state and died within that persistent vegetative state. So I think when you're using coma as a narrative device, to that extent, it really does cross over into quite serious ethical ground, I think.

You're really, really ill. You come out the other end with something for many people that function will be impaired for the rest of their lives.

Yeah. And I think just I just think that there is an ethical responsibility to be able to. To still have kind of creative licence, but to portray coma and particularly to portray the effects of coma, brain injury and long term neurological conditions accurately, because in essence, I think if you're not, you're just writing kind of ableist texts.

There are definitely examples whereby it's done well. There's the novel Tom McCarthy's novel Remainder, which is an amazing example of depicting the coma and depicting rehab and depicting. In that case, it's more like, you know, like emotional flattening.

The protagonist, the unnamed protagonist doesn't have lability, just has this flattening. And it's an incredible portrayal of almost like Repetition Compulsion and the need to try and get back to something from his past that he can latch onto and he tries to recreate. So the protagonist is hit by something falling from the sky that's never really said what it is, but he gets an eight million pound payout for it.

And so the only thing that he has that connects him to the past is an image of a building. And when he thinks about the building, he has images of the people inside. So he basically pays this fixer to kind of find this building, exact building and just replicate this one memory.

And I think it's an absurdist postmodern novel that takes massive risks and is very funny and very imaginative, but it's really grounded within these realities, I think, of brain injury survival.

I guess there's an argument, perhaps, that the truth is more interesting because the complicated journeys and everybody's on a different journey has had a brain injury. And I've spoken in this podcast to a couple of people who have lived experience of going through that journey and what it's like and how emotionally draining and difficult it can be at times. But also I've met people who have just become enormously creative and their lives have came quite different directions as a direct result.

He couldn't eat. He lost the desire to eat, but he had severe emotional lability. He was having these kind of post-amnesia blackouts, but he set himself up and sent himself off to do his degree at Reading University.

And he could write these assignments. He could get really high grades on these assignments. He could write about these hugely theoretical issues.

But he just couldn't look after himself. And so you've got that difficulty. So people would be looking at him and think, well, you can write this.

You're doing a degree course. And I think when he eventually went to Scotland, his doctor there or a physician said to him, well, your brain injury was X amount of years ago. You should be over that now.

And that's coming from a medical doctor. Me and Steph have run some brain injury awareness training with adult social care, together with Aly Norman from Plymouth. And there were several social workers there who said that doctors are still sending that message about, well, the brain injury is several years ago.

And it should be gotten over by that. And I can't help but think-

And they interviewed people about how they viewed these representations. And they all thought that, yeah, that's how I see coma. And that's how I think brain injury is.

And then I think they repeated the study. And then they found that, if anything, people's awareness or understanding got even worse. Because I think there's such a frenzy of these representations, actually.

So, I mean, I suppose I've spoken quite a bit about literary fiction. I guess, like, 28 Days Later and Walking Dead is more popular mainstream fiction. But, I mean, you only have to look at the popularity of the coma motif in romantic fiction.

So you've got things like While You Were Sleeping, or Just Like Heaven, or I Feel Pretty. That example where, in that movie, it's Amy Schumer film. The, what I call, the soap opera image of amnesia is, you know, when someone gets a blow to the head, they forget everything.

Then they get a second blow to the head. Then everything comes back, desperately seeking Susan. These kind of soap opera models of brain injury and immediate recovery.

Years back, there was, I think, quite an accurate portrayal of long-term brain injury in Coronation Street, I think. But I think that they are, they're fairly rare. I think one recently was Paddy Considine's Journeyman.

That's about an amateur boxer. And it's implied that he has a stroke from being in the ring. And that's a really accurate portrayal of just long-term brain injury.

And particularly, like, the pressures on family life. And, yeah, kind of family breakdown and emotional breakdown.

These fictional things kind of become the norm. Because there must be people in living rooms up and down the country saying, well, that's not right.

But my theory is that avoid in consciousness is absolutely impossible to comprehend. You can't describe a void. And it's quite a terrifying concept, I think.

As is emerging from a void a completely different person. And a void is potentially what will occur after death. So, if you're imagining a void, you're imagining death, which you can't imagine.

You can't imagine being not being. So, I don't know whether it's a discomfort with that and just trying to kind of erase that reality.

Catherine Malabou, the philosopher, she refers to the post-brain injury survivors having a shredded psyche. That this idea that psychoanalysis can't get you back to that previous person. Which, interestingly, like a lot of these interior coma texts that take place within the coma, they're all draw on typical psychoanalytical theories or kind of Freudian or Jungian tropes or tropes of like catabasis, hellish descent.

This idea of descending and then re-emerging a changed person, changed for the better very often in these cases. Which is, again, in stark contrast to this notion of a shredded psyche.

A lot of the people that I've met and talked with have had brain injury. That's the hardest thing is understanding that you're not going to do that.

To get back to the person you were before. But actually what you need to do is be comfortable with a new identity.

Yeah, it's that notion of the grown self almost. And I think that can be very, very difficult. And it can be particularly difficult for people who haven't got that support network.

People have multiple disadvantaged needs or from underprivileged backgrounds. It's particularly difficult. And this is where we find people very often becoming homeless or within the prison systems.

And they then go kind of almost like double erasure then. So they're brain injured and but not recognised as being brain injured and homeless or and within the prison system. And again, when you've got this kind of erasure through fiction of the realities, then it's very difficult for people to kind of see through the behaviours of people or the action.

I mean, we can sort of airbrush that stuff over, can't we? When you're at this particular bit of the story at the moment.

But very often in fictional fiction writing, they're kind of almost like interchangeable. Kind of whether it is a mental health condition, is it a organic damage? Almost like the old argument about shell shock, kind of like post First World War, is it organic? Is it psychiatric? And I think that is still occurring within fiction. And I think it's, yeah, I think it's, it's interesting because in Alex Garland's novel, The Coma, there's a point when the protagonist talks about, he doesn't know whether, is this a psychiatric condition? Why am I where I am? Or is it a brain injury? And he almost hopes that it is a brain injury, because I think that he voices it himself, that it could be curable or reversible.

So he almost sees psychiatric kind of damage is worse than organic damage because of this, again, this illusion of being curable. And Garland himself in an interview with The Guardian spoke about how he doesn't really mention coma at all. He mentions that he that have very often representations of dreams.

And I think he calls them normally pretty naff in fiction. And he wants to do kind of a novel about dreams and sleep that is not so naff. So he never mentioned coma itself.
It's like you said at the top of this interview. It's a device, isn't it?

It's fascinating stuff. Links to a whole load of things that we've been talking about on the bottom of this podcast. And thanks ever so much for your time. Really nice to meet you.