Physical pain, working mindfully with pain, and ‘not being’ too literally

Estragon: I can’t go on like this.

Vladimir: That’s what you think.

(Beckett: Waiting for Godot)

Everything that falls upon the eye is apparition, a sheet dropped over the world's true workings (Marilynne Robinson: Gilead)

Physical pain has always been for me another country. An occasional visit, yes – cycling up Highgate Hill, a bad hangover, a judo sesshin, a urinary infection, a full-on meditation retreat, a dental cyst, a swim in Hampstead men’s pond in February. But these were always adventures you come home from. You take them in your stride.

An extended stay in the land of pain is quite another matter. In the historical past the land of pain must have been well-populated. Dental issues, sexually transmitted diseases, hopeless ‘medical’ treatments without anaesthetic, starvation, chilblains, gout… And even today there are still many people who suffer debilitating chronic pain from one thing or another, back pain especially, but also from incurable medical conditions.

What is interesting about physical pain is that it is supremely uninteresting. Well, there are those supposedly hilarious video clips of people falling over things or through things and landing so hard you wince just watching. But long-term pain – fitting your life around something that won’t accommodate itself to the things you’d like to do – nobody’s really interested. If you’re disabled, you can hold down a job, play sport, all the rest of it. If you’re disabled with pain, not so much. So you may want to skip the following account of my physical pain and distress.

Head and neck radiotherapy leaves you with mucositis, which means extensive ulceration in the mouth and throat. Swallowing anything has been very painful. Not swallowing anything has made the throat very dry and uncomfortable. Like sandpaper. In the last week or so of the chemo and radiotherapy in late January 2017 I was hospitalised and had a naso-gastric tube fitted as there was a danger I would start swallowing stuff into my lungs. The tube goes up the nose and down to the stomach. You get food pumped in very slowly through the night. I could also syringe water straight down my throat. So I didn’t take in anything by mouth, and I only swallowed sips of water once I’d prepared the ground with extra morphine and anaesthetic. Otherwise even just water was like corrosive acid in the mouth.

As well as this, my saliva constantly thickened into sticky mucus. It couldn’t be swallowed because of the pain, so it had to be constantly spat out of the mouth. I had to keep the mouth closed when I was not doing this, to stop the mouth drying. (Yes, as well as all the mucus you get ‘dry mouth’.) So I couldn’t speak without mucus coming out of my mouth. Speaking was also very painful as it involves moving the tongue, which carried the worst of the ulceration, and for some weeks I communicated by writing. The nostrils need to be clear so I could breathe without opening the mouth. But while the left nostril was substantially blocked by the feeding tube; the right was constantly producing unusually huge deposits (radiotherapy again) that had to be finger-picked or blown out (Not a nice image - sorry). So breathing was often difficult. After a week in hospital I was sent home with my tube and a pump.

There have been other physical problems – the whole of the side of my neck and around my ear was blistered and suppurating for a while. More worrying was that I’d lost a good deal of my already poor hearing. Would it come back? Who knows? As well as the whole of one side of my face dropping, I also have lymphodoema, as a result of the radiotherapy, which is where you get a lot of sagging and swelling of the face. All in all, I didn’t look good. My son took a photo of me doing a ‘walking dead’ impression withall this going on. You have to laugh, eh?

Pleasures became quite rarified. I had a good appetite, and one of the highlights of my day was when Claudia came home and had her dinner. The smell of it was intensely delicious. And syringing really cold water through the tube and feeling the slight chill in the throat was distinctly pleasurable.

After three or four weeks the tube got blocked. Probably because of vomiting. So I had to go in to have it replaced. Gradually, by about March, I was encouraged to start drinking the feed by mouth as well as pumping it in. And the next time it got blocked, come April, it was taken out altogether. With the help of painkillers I was now expected to take all my nutrition by mouth; to begin with just ‘Ensure’ which is a sort of revoltingly sweet complete food in a bottle; but I was supposed to gradually introduce bits of normal food into this diet - soup and so on. All this was a lot more difficult and painful than life with the tube.

Particularly distressing is the destruction of my taste buds by the radiotherapy. It’s easy to take for granted that regular daily pleasure of tasting simple food and drink. A cup of coffee and a bit of toast. How I have longed for this. An apple! You see, as well as the pain, basic things like that don’t taste of anything. Which is truly horrible. Also the ‘dry mouth’ makes eating anything that isn’t fairly soft and moist, more or less unpleasant.

The mouth is the seat of so many crucially pleasurable sensory operations and emotionally crucial operations like speech, which get damaged by head and neck radiotherapy, and is located so close to other crucial sense and cognitive operations. So it is sort of where you live. It can’t really be sidelined, or blocked out of your mind.

After three months I had just the ulceration on my tongue, dry mouth, taste bud damage and undiagnosed pneumonia. After five months this had whittled down to the dry mouth and taste bud damage (the ulceration pain was minimal). This is still much more unpleasant than you might think. It is really difficult eating things that don’t taste right or that taste of dust and ashes, and which because of the dry mouth are difficult to chew. I wonder if this is what it’s like for small children who refuse to eat their food. I think we need to be much more sympathetic towards the little blighters. Because I tell you, porridge is really horrible. Anything with a somewhat subtIe or sophisticated taste just doesn’t come across. Apparently if you suffer from depression you can lose your sense of taste in this same way, except that with depression the effect is produced from the brain, whereas mine is from direct damage to the mouth. So the expression ‘an appetite for life’ is not just metaphorical. Taste is immediately connected to one’s appetite, and to one’s lust for life. Keats writes in one of his Odes of bursting ‘Joy’s grape against his palate fine’, but when I try it, well, the grape tastes of a grey nothing, and that joy from the mouth is horribly absent.

When the pain was at its height I would just fall asleep if I tried to meditate, due to the morphine, I guess. But mindful walking was good. Paying attention to sensations in the soles of the feet, and the breathing as sensation. From there, noticing the world around you. You might think this works as a distracting device. In fact, like any practice of mindfulness, you are actually bringing into operation a whole different system of attention. Instinctively we experience pain with a quite narrowly focused quality of attention, one that separates and isolates and even magnifies the pain, the kind of attention needed to work out what to do about the pain, and which always engages the emotions in this project - for example, when you pull your hand away from something very hot. But if you no longer need this kind of attention, then you want to learn how to switch to the other system of attention, which includes the pain in a larger, broader awareness, especially an awareness of sensations as sensations, rather than sensations snagging on emotional and cognitive reactions.

With mindfulness you’re setting up a kind of firewall between the experienced sensation or feeling, and the emotional and interpretative reaction to it. All the time the mind is experiencing things, taking things in, and also reacting to our experience. And our tendency is to mash this all up into a package that is automatically fixed and labeled. The practice of mindfulness is about taking this pre-packed experience out of its packaging and getting back to something more raw. We do this by taking responsibility for the activity of the mind, how we respond to things, how we engage with what is there.

Eating food for example, it is easy for me to slip straight into a reaction of horror and disgust when that nice-smelling food turns to dust and ashes as soon as it goes in my mouth. Instead, I have learnt to really pay attention to the smell as smell and then pay attention to the taste as taste, noticing the taste of dust, and noticing too the faint echoes of what it ought to be, ginger, carrot, garlic, somewhere way back there.

The point is perhaps that what we call an experience is actually an experiencing. You are not stuck with your experience, as something fixed. More significantly, you aren’t stuck with the person doing the experiencing – i.e. you. As Buddhists, we don’t think of ourselves strictly speaking as ‘beings’. We are ‘becomings’. We consist in change.

One of those neat antitheses much favoured by modern Buddhists, especially mindfulness teachers, is ‘being vs doing’. That is, we are often told we should try to ‘be’ a bit more, and maybe ‘do’ a bit less. You get the point – it’s about engaging that second system of attention I mention above. However, the aim of engaging our ‘being mode’ is, from the Buddhist perspective, to see how things really are, and the reality is that our so-called ‘being’ consists entirely of ‘doing’. The point is that it may be useful to imagine one is going from ‘doing mode’ to ‘being mode’; but the Buddhist does not take this literally. There is only doing and becoming.

The main effect for me of the way my life has collapsed into this brutal struggle with a relentless illness has been a kind of tenderizing. I’ve finally woken up a bit more vividly to the absurd vulnerability of human beings, the quiet hum of mortality beneath the public noise, the desperate paddling beneath the water as we glide like swans steadily onward. I feel a bit forgiving (even towards Brexiteers). Life is, as the saying goes, difficult enough… I go twice a week or so to the Macmillan Cancer centre, which is full of people you can see thinking ‘Fuck, I’ve got cancer.’ I think one then takes that perception of an inner pain and confusion and horror in the people you find around you out into the streets.

However, now I’m free of the painkillers I have started to get out and about. Swimming in Hampstead men’s pond in early July. Above the board in the changing area reading ‘Costumes must be worn at all times’ someone has chalked ‘Pirate’. Bliss. Life.

Pain, St Francis and mindfulness

‘Pain is an invitation to a dialogue’ (Wittgenstein)

Just because Donald Trump might be a bad person, doesn’t mean he doesn’t have feelings, real feelings that get really hurt. One thing his hair tells us is that he is still a member of the entertainment community, and yet his own people reject him publicly at every turn, and that’s hurtful. And golly, the press certainly know how to inflict pain. Success, fame and power deliver a rarified form of suffering, and poor Donald is showing us just how to make it as painful as possible.

Here is the opening verse of AA Milne’s poem about another, rather similar psychopathic ruler, ‘Bad King John’. (800 years ago King John so antagonized the Westminster elite that he was made to sign Magna Carta, which is the foundation of all legal protection against the exercise of arbitrary power, both in the UK and the US.)

King John’s Christmas (AA Milne)

‘King John was not a good man —

He had his little ways.

And sometimes no one spoke to him

For days and days and days.

And men who came across him,

When walking in the town,

Gave him a supercilious stare,

Or passed with noses in the air —

And bad King John stood dumbly there,

Blushing beneath his crown.’

AA Milne’s ‘Bad King John’ shows us a child’s artless response to basically the same pain as Trump is dealing with in his own catastrophic way. So what is the art to be mastered here?

Pain is not something you can opt out of, or buy, inherit, succeed or luck your way free from. You may think you have sidestepped the pain of poverty, failure, sexual frustration, ill-health, loneliness… and yet pain keeps reappearing in fresh guises, even if, as it turns inward, it may be only half-glimpsed: profound boredom, existential despair, compulsive anxiety or dissatisfaction, moral discomfort… It is the bass-note of all our experience.

But the nature of pain is that it is not just an experience; it is your response to your experience. For example, I support a football club; I think about the team more than is probably healthy. However, whilst the novelist Julian Barnes, for example, observes that supporting a football team means ‘stupid love, howling despair and frantic self-loathing’, it doesn’t for me. I know that it’s a lot of nonsense. It’s theatre. Losing is part of the drama.

Now what I would like to be able to do is to transfer this attitude to the rest of my life – ‘to care and not to care’ (TS Eliot), to ‘hold on tightly, let go lightly’ as an old judo teacher of mine used to say. There’s no harm in creating a drama out of your life, like Jose Mourinho kicking a water-bottle on the touchline when his team give away a penalty in the dying minutes of a game. It’s natural and healthy. But mindfulness is a contacting of some deeper level of awareness that really isn’t that bothered, that finds the disasters and humiliations and pain of your life just as interesting as the pleasures and triumphs. Because losing is part of the drama.

There is a story about St Francis, the founder of the Franciscan Order, which makes the same point. He and another monk are travelling in winter and it’s coming to the evening, and Francis talks about the greatest joy as lying not in having the gift of prophesy, or preaching, or raising people from the dead and so on… 

"But if, when we shall arrive at Saint Mary of the Angels, all drenched with rain and trembling with cold, all covered with mud and exhausted from hunger; if, when we knock at the convent-gate, the porter should come angrily and ask us who we are; if, after we have told him, "We are two of the brethren", he should answer angrily… "These are but importunate rascals, I will deal with them as they deserve"; and taking a knotted stick, he seize us by the hood, throwing us on the ground, rolling us in the snow, and shall beat and wound us with the knots in the stick… here, finally, is perfect joy.’

You’re probably thinking that St Francis is on his own trip here. We can understand patience in the face of unpleasantness, but joy? That seems kind of aberrant, to put it mildly.

But the great medieval Tibetan hermit and poet, Milarepa, is similarly enthusiastic about things not really going his way. Well, he describes the ups and downs of life as ‘the greatest joy’ (in his lyric ‘Song of a Yogi’s Joy’ for example). The Buddha himself speaks of this freedom of the mind from being determined by circumstances, whether pleasant or painful. He says, in various different contexts, that he does not allow feeling, whether pleasant or painful, to have power over his mind.

My own experience is that sometimes I feel quite relaxed and cheerful when life leaves me knee deep in the bad chutney. Other times, not so much… Emotional pain, of which, like most people I have had my share, I have found, at least in recent years, much easier than what I’m going through now. It’s much easier, when you are in the midst of some public humiliation, for example, to practice mindfulness, to notice what is going on in a relaxed way, than when the body tightens against physical pain. And the fact is that you can kind of enjoy that sense of a big deep part of you just not getting caught up in what at a more superficial level you are finding very painful. It’s a sense of freedom, and a sense of being in touch with something larger.

Certainly I haven’t yet felt depressed at the way my life has been curtailed in so many ways. I don’t think, ‘Why me?’ (‘Why not me?’ is more to the point.) Also, certain old negative mental habits don’t have quite the same free run of my mind that they used to. They may start, but often they will simply not continue.

At the hospital I was asked if I ever felt upset or wept, and I said I did. However, I turned down their offer of counseling. I said quite firmly that being occasionally upset was a normal reaction to my condition that I was quite happy with.

After my radiotherapy finished at the end of January, such were the continuing side effects, that I had no mental energy for the next 3 months, and fell into an unreflective survival mode, a sort of stoic, but not really conscious determination to get through the ordeal, partly by just turning off my thinking. Severe anaemia was discovered in June. Also pneumonia, which went undiagnosed for a while. When I took iron pills and antibiotics in June I felt a lot better.

The Buddhist idea of Emptiness, and what’s happened to my face?

Estragon: We always find something, eh Didi, to give us the impression we exist?

Vladimir: Yes, yes, we’re magicians.

(Samuel Beckett: Waiting for Godot)

‘Absence, the highest form of presence’ (James Joyce: Portrait of the Artist as a Young Man)

Christmas is a time for filling up. Stockings and ovens and trays of horrible sets of little glasses that came with the bottle of grappa in a box purchased at the airport with your last euros. At Christmas no space is empty of in-laws and people you share many genes with, but not necessarily much else. And the TV is full of ‘Christmas Specials’, in which sinister light entertainment acts from yesteryear are disinterred for one dark night of the soul, when the mirthful undead walk again. This year on the BBC it was the Chuckle Brothers. Dr van Helsing, get down the woodshed now, sharpen up some stakes.

Packed full like this, Christmas empties of meaning. Meaning is always the last hunger in the line, the one empty bowl we really don’t have the time for. But in Buddhism, the word ‘Emptiness’, which is the usual translation of the Sanskrit term shunyata, is itself the ultimate truth and meaning of things. If everything arises in dependence upon conditions, then nothing exists independently of those conditions.

Take my appearance, for example. Within a few months I have lost the use of half my face, and this is not just a weird and uncomfortable feeling. I can’t smile broadly. I can’t laugh open-mouthed. Kissing – I know, looking like I do, it’s not an issue that comes up much; anyway, it’s a non-starter. I can still sneer and snarl though. Emotion and its expression are conditioned by one another. Your expression or lack of it changes you inside. My speech is affected. People look at me differently; so I experience myself differently. I met an old student of mine when I was having my scan; she said to me, ‘Oh, you used to be so handsome!’ Yeah, thanks.

This happens to everyone to some extent. As you age you gradually turn into a grim-faced gargoyle, but so slowly you don’t notice - your natural vanity spares you the full Kirk Douglas (he was 100 recently – well done Kirk). My fast-forward metamorphosis gives it to me straight.

Now, ‘Emptiness’ is a way of expressing the fact that nothing in your experience stands aside from this kind of transformation. We tend to assume that there’s some entity I call me that is the same as it was fifty years ago. But where is it? What is it? If you look carefully enough, you’ll find there is nothing there; there is no one there experiencing whatever is going on for you. Obviously there is a ‘me’ here, a personality, constantly changing but still recognizable, as well as a physical presence, changing but also recognizable. But this is the point. I consist in change. My experience of being me is empty of some kind of nugget of me-ness. My life is not happening to me. It never did happen to me.

This understanding is not as weird as it sounds. There are times when you’re quite open and engaged, you’re getting on with things, you’re concentrated. There are times when who you are isn’t experienced, when your own needs do not push themselves forward, when that separateness from what you’re doing, from the world, from others, that itchy discontent or conflict, isn’t there. It’s that idea of ‘flow’ (though I think it is going on intermittently more often than we give ourselves credit for – not just when we’re working creatively).

Now, what is actually going on at those times? Or rather, why does what is going on at those times seem mysterious, and out of focus? And what happens when that flow breaks, when you think, ‘I want that seat’; or, ‘Are there any seconds?’ Or, ‘That’s a hurtful thing he said’, or ‘You know, I just have to check out my ‘likes’ on facebook’. Or in my own case, five weeks into chemo and radiotherapy, ‘The pain is going to get worse than this? I really can’t handle this.’ Before this thought there was plenty going on, there was plenty of awareness, but it was empty of me. But then it’s as if everything closes around a central focus of meaning to the world, a central fixture. Me and mine. And everything else becomes objectified, fixed, out there.

Any animal has an instinct to promote and guard its interests and attachments. And humans naturally make this conscious. We give it a name – me, mine. The name at once fixes it, and stories gather around it. All this is fine. The problem is when ‘me’ starts taking itself absolutely seriously. It becomes a fetish. An addiction. Everything has to be about me. You just have to look at ‘the Donald’ to see how this one works out. You feel locked out of a more nourishing world, in which the self is a useful reference point, but in the end, no more than that, empty. The point is that we unconsciously face this choice of worlds to live in at any moment. The real world, or the Donald world.

We all do this. I had a ‘Donald moment’ just recently in hospital - I had a bit of a meltdown because a senior registrar with a large group of professionals surrounded me in my hospital room and told me what they had decided to do with me, not realizing that I could barely say a word as I was (look away now) almost drowning in my own sticky mucus. I just felt so undignified, and I reacted by telling them all quite forcibly to leave. So unfortunately I wasn’t able to access a sense of this undignified moment as just that, a few uncomfortable minutes, which I did not need to identify with, which I did not need to make into part of the old on-going story I call ‘me’. Fortunately, these medical professionals are highly trained in patience and kindness.                                                                                                                         

As for the real world of ‘Emptiness’ you can get into it in even quite basic meditation practice. When you attend to the sensations of the body, this can be initially quite difficult. Your ‘Donald’ mind perhaps begins by ‘objectifying’ parts of the body in sequence. So if you try to be aware of your left ear, for example, you may visualize it; you may even touch it: your Donald mind looks for a clearly defined ear, ‘out there’. However, in the reality of your experiencing of it, your ear is not ‘out there’. Your awareness already inhabits it. And as an experience you will find it has no clear definition, no boundaries; it does not exist as something separate. It is real, it is really there, but it is empty.

Fixed views and doctors.

‘I am seeking the truth, not laying it down’. (Montaigne: On Prayer)

Views. There’s a lot of them about. A lot of them not very nice views, rather iffy views in fact. However, my guess is that in the case of Trump, his views are offensive rather than policy positions. They seem so far to be held provisionally.

This makes him, picturesquely, a bit more of a Buddhist than those who hold more agreeable views than his with a sense of righteous certainty. For us in the west, perhaps as a legacy of the priority of doctrinal orthodoxy in Christianity, your ideological position is who you are. However, as a Buddhist it’s not like that.

Buddhist views are less important than the way you hold ‘em. The important thing is not to get stuck in a view, attached to it, or identify with it, not to build a fixed self out of it, or use your view as a weapon. Not to take it absolutely literally. The Buddha’s teaching sets you off; it’s not meant to wrap things up for you.

Over the past few months I have lost the use of half my face. The reason for this is that my GP took a certain view of my symptoms and did not want to have second thoughts. My GP is old school, an elderly, reassuring guy, authoritative, good bloke. He said the lump I showed him in my face was bone. I also presented numbness on the same side of the face. As the weeks went by and half my face became more paralysed and numb, he said, ‘Bell’s Palsy; a slightly unusual Bell’s Palsy, but it’ll be fine.’

He eventually referred me to a neurologist, whom he advised to reassure me about the ‘lump’ on my cheek. When Claudia asked the neurologist - this was in July - if the symptoms could signal cancer of the parotid, the neurologist said that yes, they could. But he just carried on with his own specialism, using little hammers and pins to check how my nerves were doing, and asking ‘How many fingers am I holding up?’ And then he ordered a brain scan. Nothing wrong there.

If you have a fixed viewpoint, you don’t see what you aren’t looking for. In September, I was telling my GP my lump felt a bit tender; he said it was a distraction. Bell’s Palsy. Finally, at the start of October it got a bit painful and Claudia dragged me to A&E at UCH on a Saturday night.

There, reception said to me, ‘Can it wait till you can see your GP on Monday?’ I said to her, ‘NHS treatment is world class, and free, and I am extremely grateful for this. But it is not actually ‘free’ if the diagnosis is too late. It can cost you everything you have.’ She waved me through. A head and neck surgeon is always there on a Saturday night to deal with people who have been punched in the face, and so I finally got the attention I needed. Thank you the flying fists of British pub culture. And the very newly qualified specialist. For a diagnosis give me the uncertainty of the beginner’s mind any time. A month later the tumours were removed.

The narrowly locked focus that is our modern iphone-induced mental (as well as physical) posture loses touch with the open shared space in which conflicting views are tolerated. Even music is now experienced not as filling a physical space that includes you in it, but as occupying a mental space, your own ‘headspace’, between your earphones. In the public sphere too we no longer want to debate. We find it difficult to acknowledge that there might be something bigger and more important than our own position, our own experience.

Again, though, you pay a price. At the Democratic convention of 2009 they had an Evangelical pastor speaker (God is big in the US) and as you might expect the guy had views on LBGT issues that not everyone liked. At the 2013 Democratic convention a similar pastor with similar views was forced to withdraw. So between 2009 and 2013 the capacity of these people at the Democratic convention to value debate over one particular set of views disappeared.

Parliamentary democracy is based on the principle that the debating chamber is more important for arriving at the most useful conclusion than any one view or judgment that may be expressed within it. Similarly, mindfulness is a valuing of awareness or attention itself, over any one view or thought or feeling that arises and passes away within it. It is not really about inviting unhelpful or ‘judgmental’ thoughts to leave. It is about holding them in a larger, open space of awareness.

This is sometimes, I’ve found, difficult, for people to ‘get their head around’ - because you can’t think your way into that open space. We tend to identify with our thoughts, emotions and feelings. That is, they emerge as being all about what is going on in the world around us, rather than what is going on in us. We polarize with our experience: ‘I like this, I don’t like that’. But as soon as you have been able to identify a thought as a thought, a view as a view, an emotion as an emotion, or a feeling as just that, a feeling, you have, if only momentarily, opened up that space. You are no longer possessed by those thoughts or feelings. You have begun to open up a path to some kind of freedom.

Me? Well, it now looks like cancer. There are feelings of relief, mixed with intimations of mortality. Hopes and fears banging about. I try to notice, to make conscious, to make room for in my awareness, my sense of other things going on, especially breathing, but also the sky, the whole world of particular things, not the sky in general, but this cloud, its unrepeatable shape and colour; and likewise, this person here, the unrepeatable character and tone of their world in its brief collision with mine. Not everyone really wants to follow me into this grimly significant place where I suddenly find myself, and I likewise can find myself sometimes uninterested in really taking in their world. But there is room in awareness for all these things, including the sense of not wanting to take an interest in things. Awareness is spacious by its nature.