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.