Photo by George Georgiou / Panos Pictures

Essay/
Illness and disease

Photo by George Georgiou / Panos Pictures

On Matthew’s mind

An operation to remove a brain cyst changed Matthew’s identity. Who will he become after the next round of surgery?

Ben Platts-Mills

Photo by George Georgiou / Panos Pictures

Ben Platts-Mills

works for Headway East London, a charity that supports survivors of brain injury. In 2013, he led on the development of the life-writing project Who Are You Now?, which publishes survivors’ stories. He is the author of Tell Me the Planets: Stories of Brain Injury and What It Means to Survive (2018). He lives in Hackney, east London.

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25th June 2015

‘Why do different cultures respond differently to depression?’ The question is typical of Matthew. The assumption embedded in it creates rhetorical tension, pulling you on to his intellectual territory, forcing you to take a position. At the same time, it sounds like the beginning of a joke.

‘Go on,’ I say.

We are on the 242 bus heading south on Kingsland Road in the East End of London. We are on the top deck, towards the back. A man sitting across the aisle is talking on his phone in a clipped language I can’t understand. It crosses my mind that he might be speaking Yoruba but Matthew doesn’t seem to have noticed, so perhaps not.

‘I mean,’ says Matthew, ‘I watch all these people going to see Lisa, and I just think: “What the fuck are you doing?”’

Lisa is the psychotherapist at Headway, the brain injury charity where Matthew and I work, he as a volunteer, I on the management team. Lisa offers counselling to the people who attend the centre – people who, like Matthew, are living with neurological disabilities. In most cases, their injuries are caused by strokes, road traffic accidents or violent assaults. Matthew’s injury is unusual in having been the result of surgery. It happened in 2005 when he was admitted to hospital with acute hydrocephalus – a dangerous build-up of cerebrospinal fluid in the brain.

Matthew had a cyst growing in the system of ventricles that carry the cerebrospinal fluid. When the cyst got big enough, it blocked off the ventricles, turning them into water balloons that began crushing his brain against the inside of his skull. By the time he reached hospital, Matthew was in a critical condition. The surgery to remove the cyst saved his life, but it also caused damage to the surrounding tissue, leaving him with significant fatigue and memory problems. This kind of surgical injury is rare, but for Matthew it has had life-changing consequences.

Matthew is also unusual in his outright rejection of therapy.

‘I just can’t understand why people find it psychologically useful,’ he continues. ‘People like that are just reading from a script.’

‘Psychotherapists, you mean?’

‘Yes. It’s a professionalised script.’

I nod and steer him back to his original question: ‘In what sense is depression a cultural issue?’

Matthew frowns at the street through the window. ‘I think I read about a tribe where, if somebody gets depressed, the whole community gathers round them to solve the problem. People wouldn’t do that here.’

Matthew waves a hand at the view outside the bus: ‘It’s the macro-entities that are to blame.’

‘Mackerel…?’

Macro-entities,’ he repeats, ‘the companies.’ He’s gesturing at the buildings. ‘They aren’t set up to support people psychologically, so we have to outsource it to professionals.’

‘Because people’s workplaces have replaced their communities?’

‘Yes, I suppose so.’

‘What about in Nigeria?’

‘People wouldn’t talk about it. They would pretend everything is OK.’

There was a time when I would have tried to talk Matthew round on the subject of counselling. For the 10 years I’ve known him, he has seemed to live in a condition of deep psychic unease. There are periods when, by his own report, he barely sleeps. He often comes to the centre in the morning already exhausted, his eyes puffy. He complains of his bones aching. At his lowest ebb, he will spend his days silently washing up in the centre’s busy kitchen, barely interacting with others, executing his voluntary role with joyless determination. He isolates himself socially, spending his free time on long bike rides and watching YouTube videos. At one stage, when things were particularly bad, he described visions of self-harm, images that would spring into his mind without warning, of his own hands cut and covered in blood; of his body falling from the Tube platform into the path of an oncoming train. He has admitted to ‘ruminating’ about his fate and, when asked, speaks bleakly about the future. ‘I used to have a plan but now I have no ability to make plans happen. I try to take one day at a time.’

For many years, I was convinced that talking therapy might help, but Matthew would always turn it down. ‘Way too invasive,’ he would say. ‘I like my emotions where they are: in a box.’ I remember him making a shape with his hands, a square-sided container for his mind. He stared intently into that space between his palms. His own, inviolate territory. As far as I understand it, this isn’t a new disposition. Before his injury, Matthew was a computer programmer who defined himself largely by his work. He was renowned among his friends for his stubborn pursuit of logic, and for never discussing emotions.

If I ever mentioned the possibility of a psychological component to his problems – suggesting, for example, that anxiety might be enough on its own to cause insomnia, and that insomnia might be a contributing factor in his fatigue – he would become defensive. ‘You’re saying my fatigue is purely psychological,’ he would say, the word ‘purely’ looming large and angry. Suggesting his fatigue might be influenced in any way by distress was as good as reducing it to a will-o’-the-wisp. For him, the fatigue and low mood were instead direct, physical consequences of his brain injury.

I look at him on the bus now, next to me.

‘Aren’t you hot?’ I ask him. It’s a warm afternoon – the warmest of the year so far – and he’s wearing his black walking boots, jeans and a black down jacket.

‘Yes,’ he says, ‘but it’s habit. I just get used to winter clothes.’

He takes off the jacket and pushes it into its stuff sack. I watch as he ties the cord of the sack onto the strap of his shoulder bag. The knot looks like a poor one, what my dad would call a ‘granny’. The cord is made of something like polyester – very smooth, no grip. I have the impulse to tell him to tie another knot but a countermanding thought stops me: I can’t spend my whole life acting like his mum.

We get off the bus at St Paul’s Cathedral and walk north in the direction of the Museum of London. We have been invited to the Giant bike store to meet the manager, Dave. Amazingly, he has offered to provide Matthew with a free bicycle for his upcoming 100-mile fundraising ride. Until now, Matthew has been riding a secondhand one that’s a little too big for him. He says he has trouble working the brakes on downhill sections, which is worrying. It’s time he had a bike his own size, one that works safely.

‘It’s like your computer. Everything works as it should, as long as the mechanism is not damaged’

As we stroll towards the store, I tell Matthew about a thought experiment I’ve come across in an old philosophy paper.

‘It’s about a teleportation machine that works by scanning your body,’ I say. ‘Every last detail of your structure including the state of your brain, the energy pattern of your thoughts. Then, once a complete record has been made, it destroys your body. It transmits the blueprint to Mars and a sister machine builds a perfect replica of you out of local materials, exactly as you were on Earth.’

‘Classic science-fiction premise,’ says Matthew with a smile.

‘So, in the original experiment, the question is about identity. Is the person on Mars – ’

‘Same person,’ Matthew interjects.

‘– as the one on Earth?’

‘Completely.’

It’s not a surprise that Matthew has an opinion about this, but I’m impressed by his certainty, his lack of hesitation.

‘If you are a materialist,’ he says, ‘you have to say yes. It’s like your computer. You switch off your computer in the night time, and then you switch it on again the next day, and the software remains in the same state as before. Everything works as it should, as long as the mechanism is not damaged.’

‘OK, so what if there was a glitch in the teleportation device,’ I say, ‘and it produced another identical copy of you by mistake, what would the legal status of the copy be?’

‘Completely separate person,’ he says, without a pause, ‘with the same rights as any other human being.’

‘Like you’ve just acquired an identical twin.’

‘Exactly.’ He nods. ‘The more interesting question,’ he continues, ‘is whether, if the teleportation company deleted the backup data before you were reconstructed, would that be murder?’

‘No, surely,’ I say. ‘Assuming the person had been reconstructed?’

‘Yes, if you have been reconstructed then it’s not murder,’ says Matthew. ‘But if it gets deleted before you’re reconstructed, then it’s murder.’

‘Would the company have rights over your data?’ I ask. ‘Like when you upload a photograph to Facebook?’

‘Yes, but only during transmission. They have to have the rights while you’re not in existence.’

‘But they also have a duty to act in your best interests,’ I say, ‘towards bringing you back to existence as quickly as possible.’

‘Yes,’ says Matthew, ‘and then the rights revert to you immediately when you are reconstructed.’

Matthew sees himself as a materialist – as someone committed to the idea that only matter exists, and that the mind is nothing more than an ‘epiphenomenon’, a ghost in the machine. Where I think of the mind and body as two sides of the same coin, he sees a clean dichotomy. Where I see the mind as native to and inextricable from the body, Matthew sees software: beautiful but ephemeral routines that, in some sense, only ‘exist’ when they’re ‘running’; that are infinitely replaceable, rewritable. Abstract.

The earliest symptom of Matthew’s illness was double vision, caused by the increased pressure placed on his optic nerves by his swelling ventricles. At the time, he assumed he was just working too hard. He decided to reduce his hours at the screen a little, to give his eyes some rest. As the double vision worsened, he tried closing one eye, but it eventually became so severe he could no longer see the lines of code on his monitor.

Matthew has no memory of how he got to hospital or of the exchanges made over his prone form between the surgeons and his sister, called in to give consent for the operation. He had already lost his connection with the world around him, receded into another place. His sister would have read through the risks before signing: death, stroke, permanent disability. Though nobody in the room could have known it, the surgeon was not proposing the saving of Matthew’s life, precisely, not the preservation of his established identity, but the creation of a new one, the replacement of the original Matthew with an inexact replica.

At the bike shop, the manager, Dave, takes us downstairs and shows Matthew the bike he has picked out for him. He asks an employee to get Matthew sized up for clothing. We are looking at the shoes, beginning to wrap things up, when Matthew frowns. ‘Did I come in here with a jacket?’

The time around his injury is an island lost in the mist, a gap in his memory that might never be filled in

He searches his bag and we scan the large shop floor, around the plinth where he had been trying the bikes. I go upstairs but there’s no sign of it. We finish up and leave the shop, retracing our steps to the bus stop. No jacket.

‘It’s OK,’ says Matthew, ‘when you have a disability you learn not to worry about the little things.’

I feel a pang of responsibility. That inkling I’d had on the bus. Suggesting he take off the jacket, watching him tie it to the bag, that hopeless knot. He’d said he was wearing the jacket because he was used to wearing winter clothes, but maybe the habit was more important than that. It had formed for a reason, even if Matthew didn’t know what that reason was.

There are a lot of people at Headway who never take their jackets off or put their bags down, because they have learned the hard way that what they put down they will lose. Even in summer, it’s a place full of people in jackets, carrying bags. Like Lina from Guadeloupe, who was driving one day and fell unconscious, bleeding from her ears. She says she’s become fastidious since her stroke, obsessed with tidiness. She never lets her bag out of her sight, doesn’t like people touching it. It has its own seat at the table; God forbid you put it on the floor. Or Stuart, who used to drink; they found him in the street one day: he remembers waking up with casts on both legs. Like many survivors, the time around his injury is an island lost in the mist, a gap in his memory that might never be filled in. He lives now in supported accommodation, with a continual feeling he’s done something wrong, or that something bad is about to happen. His room is covered in Post-it notes – reminders of his life and interests, and practical hints: ‘Don’t forget your bag.’

These people I work with have all lost things of immense value, things it’s hard to imagine living without, things so central to life most of us hardly even notice them. So they hang on tight to what they’ve got.

28 November 2016

Matthew and I walk east, away from the hospital, under a night sky. Yellow lights move past us along the road. It’s bitterly cold. He’s wearing the black down jacket. Not the original – the one he lost on the bus – but the replacement I ordered on the internet the next day. It looks identical. I don’t know if Matthew remembers losing the other one; he might well have forgotten. There are more important things to think about now.

We’ve just left a consultation about the cyst. Due to Matthew’s six-monthly MRI scans, we’ve known for some time that it’s been regrowing. Until recently, the advice has been to leave it alone. But over the past year, through a process far more confusing and disorganised than I would have liked, that advice has changed.

The surgeon we just met is offering to remove the cyst using a procedure very similar to the one that caused the damage the first time around. In the meeting just now, he seemed confident that he wouldn’t do Matthew any further harm. However, this flatly contradicts the advice we’ve had from another surgeon – that attempting to remove the cyst would carry a risk of further injury and significantly increased cognitive impairment. This other surgeon is advocating that the cyst should be left where it is, and instead Matthew should have ventricular drains – a pair of catheters inserted into the brain that draw cerebral spinal fluid from the ventricles down into the abdomen. This, he says, should prevent the cyst causing a problem even as it grows.

‘It is a nice question as to whether to operate. Nice as in finely balanced’

Both surgeons agree that something should be done, that intervention is the best way forward. But they seem unable to unify their positions, or even talk to each other. I’m developing the impression that neurosurgeons, like many other specialists, have a tendency to give advice based on what they’re good at rather than on what’s strictly best for their client. It seems to me that Matthew needs advice from someone who is not professionally wedded to a particular technique and who can help weigh up the decision from the perspective of Matthew’s wellbeing.

I assumed that person would be a neurologist. A neurologist has a detailed understanding of the brain but doesn’t perform surgery and so should, I thought, be well-placed to offer Matthew impartial advice. But we’ve seen a neurologist only once in the past year and he seemed to have no clear position on the matter. ‘It is a nice question as to whether to operate,’ he said to us. ‘Nice as in finely balanced.’

Standing in the street, I ask Matthew what he thinks. He lets out a breath. ‘Either way I’m screwed,’ he says. ‘But the cyst has got to come out.’

It’s hard to tell what Matthew means by this. Over the past few months, he has orbited this conclusion as though its gravity is inescapable. He thinks that removing the cyst will cure him of his fatigue, his memory impairment, even his low mood and suicidal thoughts. These possibilities have been rejected by all the experts, regardless of their opinion on treatment. The consultants are clear that the fatigue and memory problems are an irreversible consequence of the original surgical injury. And the cyst has no means of influencing his thoughts or emotions: it’s made of fat and mucus, not nerve cells. It grows from the ceiling of the small ventricle in the middle of Matthew’s brain and doesn’t interfere with the surrounding nerve tissue. Nothing the surgeons can do will change any of this. But, forgetting this advice again and again, Matthew has continually reverted to the idea of a cure.

‘It’s got to come out.’

It’s a realm of thinking into which I cannot follow. The thought of surgery to remove the cyst terrifies me. I feel helpless. Matthew and I are as far apart as we have ever been, as though we never met. We exist at different times. On different worlds.

8 February 2017

It is night on the neurosurgical ward and I am waiting for Matthew’s return from the operating theatre. His sister is next to me in the waiting room. The lights are low at the beds and the staff at the nurse’s station speak in hushed tones. I arrived on the ward in the dark of the predawn some 17 hours ago, and Matthew spent much of the day in holding, a single black arrow drawn in permanent marker on his forehead. I headed home, leaving him with his sister watching over him as he tried to sleep. Late in the afternoon, she texted to tell me Matthew was going in. I went back to the hospital to say good luck and watched him be wheeled out of the door and away. Then home again for a rest and something to eat. Standing at the kitchen sink, lying in the bath, in suspended animation.

And now we are waiting in silence, still, Matthew’s sister and I. I can’t say what forms the pattern of her thoughts. Maybe she, like Matthew, is hoping for a cure. I am trying to prepare myself for the worst, for the possibility of a different Matthew – one that’s new again, another version that neither he nor anyone else has chosen.

The most vulnerable structures in colloid cyst surgery are those surrounding the cavity in which the cyst sits – the fornices that form its roof, and the mammillary bodies that sit at its floor. These are centrally implicated in the formation of memory. If these tissues are damaged, as they were back in 2005, Matthew’s most recent memories will disappear. He will emerge from surgery disoriented, with no recollection of why he’s in hospital. This is what I will look for: the blank where the immediate past should be.

If this happens, I cannot say what I will do next.

30 July 2018

If you’re a materialist like Matthew is, you have to believe in the centrality of matter: that each human being is no more than a biological machine. With the right technology it should be possible to transcribe a detailed abstraction of a person and rebuild that person without error in another place, at another time. In this view, the mind is nothing sacred. You peel back the layers of matter and there’s no magical property, no soul, no ultimate ‘self’ to be found.

This is what the philosopher Derek Parfit, author of the original teleportation thought experiment, believed. In place of a unified, essential ‘self’, he suggested that a person was only a ‘bundle’ of loosely connected phenomena, none of them essential, all of them transitory. ‘Personal identity,’ he wrote in Reasons and Persons (1986), ‘is not what matters.’

Even the most committed materialist will struggle to believe that nothing essential is at risk in brain surgery

Teletransportation – the destruction of one apparent identity and its replacement with a copy – was not a science-fiction premise for Parfit, but a description of daily existence. As long as the copy is perfect, he said, there’s nothing to lose in the process of teleportation. Those who think the replica would be missing something essential and couldn’t truly be the same person are kidding themselves. We are never the ‘same person’. Our identities never persist, even in our day-to-day lives. ‘Ordinary survival,’ wrote Parfit in 1987, ‘is about as bad as being destroyed and having a Replica.’

On this reading, intensive medical treatment, including neurosurgery, is little more than a heightened instance of the human condition. We are all continuously teleported into our own futures, destroyed and reconstructed with each passing moment. Major surgery is only an attempt to intervene in that ordinary teleportation, to step in at the moment of transmission and adjust the makeup of the identity being replicated, to help it persist for longer in its current arrangement.

One of the few times I ever heard Matthew openly discuss his emotions was after he rejected the ventricular drains and opted to let the surgeons try to remove the cyst again. I couldn’t understand why he would take the risk of incurring more surgical injury, especially when there was a less risky alternative. He presented endless rationalisations but all of them seemed nonsensical. Out of fear for his safety, I pressed him over his reasons, and finally he confessed: ‘I’m terrified of the cyst.’ He was also frightened about the surgeons injuring him accidentally, changing him in some fundamental way, as had happened the first time around. But he was more afraid of living with the cyst.

If Matthew was a true materialist, perhaps he wouldn’t have been worried about any of this – about which operation to choose, about any risks associated with treatment, or about the cyst itself. But materialism – the belief that we are just empty machines – is hard to practise. Apparently, Parfit felt a sense of relief when he settled on his ‘bundle’ theory of identity. Being less of a person, he concluded, meant it mattered less what happened to him. His theory was inspired in part by stories of neurological patients, whose experiences of personhood were changed by brain surgery, but I don’t know if he ever met one of these people or was ever faced with a choice like the one Matthew had to make. I imagine if he had been, he would have been afraid too. Confronted with the prospect of brain surgery, even the most committed materialist will struggle to believe that nothing essential is being put at risk.

I remember the night beyond the windows that evening, the ward suspended in air, high above the streets. I remember seeing the bed wheeled across our view at the end of the corridor and the orderly beckoning to us quietly. I remember walking on to the ward, across its polished floor, and seeing Matthew there, stirring noisily in the hard, white sheets. His voice was cracked from dehydration, the oxygen mask still in place. I guess he had been conscious only a little while, emerging still from anaesthesia’s mirrored pool. He seemed to me suddenly extremely real in that half-light, his presence heightened as though he were heavier, charged with a nameless energy. As he cleared his throat and turned towards us, adjusting the cables of the heart monitor with his free hand, each movement was alive with meaning. I could feel his breath, somehow, in my own chest. We arrived together, from a great distance, finally now in the present.

Ben Platts-Mills

works for Headway East London, a charity that supports survivors of brain injury. In 2013, he led on the development of the life-writing project Who Are You Now?, which publishes survivors’ stories. He is the author of Tell Me the Planets: Stories of Brain Injury and What It Means to Survive (2018). He lives in Hackney, east London.

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