Professionals vs laity. Hope

‘The longer Levin went on mowing, the oftener he experienced those moments of oblivion when his arms no longer seemed to swing the scythe, but the scythe itself his whole body, so conscious and full of life; and as if by magic, regularly and definitely without a thought being given to it, the work accomplished itself of its own accord. These were blessed moments.’ (Tolstoy: Anna Karenina)

For the waking, there is one world, and it is common; but the sleepers turn aside each one into a world of their own. (Heraclitus)

Perhaps my best years are gone. When there was a chance of happiness. But I wouldn’t want them back. Not with the fire in me now. (Beckett: (Krapp’s Last Tape)

What, Trump again? You probably think that I may have things to say about what it’s like dying of cancer and finding out on the way I’m not much of a Buddhist. But how are these idle political observations – and other here today, gone tomorrow, froth - relevant to the rarified business of extinction, eternity, or what have you? OK, I guess that what I want to do is to connect what can seem like a closed world of the full time dying patient with the open and on-going doings of life. I’m trying to offer a lived sense of dying, of dying as something lived through day by day. Basically, the world out there does not stop being relevant to my life just because I’m not going to be here for it personally for very much longer.

Likewise with my discussions of mindfulness and Buddhism – I want to talk about how my own training – including my own evident insufficiencies in applying myself to that training - actually work for this particular person in this elemental situation I find myself in. Not what is the relevance of Buddhism and mindfulness in supporting the work of dying, but what is the lived experience of this particular and perhaps rather limited Buddhist practitioner in that context?

Dying is a normal part of the normal world. There are a lot odder things going on in the world than one’s own death. Dying is part of my life, a very important part of it, and it is part of yours. I don’t like it much, it’s not fun, but it is where I continue to live my life, and where I continue to be engaged with the world and other lives. It’s coming for all of us, but we all need to enjoy life, even beneath its shadow. It’s very different from the life that precedes it, but it has its own peculiar rewards. Even pleasures – you never lose the human need for pleasure. So I try to get on with my situation as best I can. I’m aware that it is an alien world for most people. You can’t quite imagine your way into it, even if you may have seen a lot of people dying. They are doing this mysterious and horrible thing; you aren’t, thank god. A deep instinct insists ‘This is not about me.’ You walk away, thinking, ‘How good to be alive.’ I mean, even I find it alien. Can this really be happening to me? To special old me? So bear with me… ah yes, Trump.

Professionals are in retreat. Nobody seems to want a professional politician like Hilary Clinton any more. Donald Trump was the Republican candidate, and yet he has quite casually started cosying up to the Democrats, like a footballer suddenly deciding to play for the other side in the middle of a game. The laity imagine that politics is not a game, but the point of the game is that when you recognize an opposing side, you recognize that your position must be open to challenge. Trump’s advisors are either military or bizarre characters that have crawled out from various dark recesses of the internet. He lets off unconsidered tweets like trapped wind. He isn’t a professional. And many people like this.

Even the Pope has got professional Catholic theologians jumping up and down on their mitres and birettas, and pulling out what’s left on their scalps, with his latest idea – to reach out to divorcees: maybe they can remarry he suggests. What next, the theologians cry, condom machines in St Peters Square? The laity may not like Catholic teaching, they protest, but they should at least know what it is. The question “Is the Pope a Catholic?’ should surely remain that ultimate rhetorical question, they whimper.

The academic world is also at the mercy of the laity. The most recent storm in a teacup is over a proposed study of trans-gender people later wanting to de-transition, which was turned down on the grounds that the research might upset people. Unlike some highly contentious research you might think this one might be quite useful. But where the laity has decided there can be only one answer, there is no place for the academic question.

On the other hand… Have you ever tried reading research papers? A cement of deliberately obfuscating jargon carefully laid over an unwillingness to make the effort to think clearly. And are any of our current crop of professional politicians who are going out to bat for us abroad what you’d really call professional? I mean, David Davis (‘I was out of my depth all my life, and not grinning but drowning’)? Or Boris Johnson (Flashman meets Bertie Wooster)?

And then lawyers – my brother Roddy knew with uncanny perspicacity that I hadn’t sorted out a will, and he dragged me with my piffling financial affairs to the very grand old firm in Lincoln’s Inn where he used to work, to get it sorted out. He said that when he started out there were 20 thousand solicitors in the country. There are now 200 thousand, and most of these, he said, are complete duds or shysters. Roddy hates legal muddle.

But doctors too are on the ropes. The laity are looking up their symptoms on the internet and coming to their own conclusions. In my own case, I now know that we had a much clearer idea of my symptoms and what they might mean than both my GP and a neurologist he sent me to see. The consequent delay in treatment may well have been what has made the disease fatal. The laity can no longer be treated as passive consumers of professional medical wisdom, though the system has yet to accommodate the new reality (unless you go private). I see that a study of depression in older patients advises GPs that a patient ‘who consistently annoys you could well be depressed or have a personality disorder.’ One doesn’t know quite where to start with this – except to say, ‘WTF?’

Having said that, in oncology the professionals are desperately holding the fort against the dark powers of ‘alternative’ medicine offering ‘cures’ for cancer, with plausible ‘scientific’ guff and inspiring personal testimonies, and tales of conspiracies by the ‘pharmaceutical companies’ – ‘what nobody wants to tell you about cancer’. The headline ‘the truth about cancer’ signals that what we are talking about here is a kind of religious faith. A prayer. It’s about hope as well as fear. By its nature slow, uncertain, unseen, cancer naturally produces a gently narcotic secretion of hope. As the sequence of treatments fail, one by one, to halt the progress of the disease, the hope simply metastasizes. Because in a few cases the disease can quite miraculously go into reverse, at least for a while, there is any number of people out there with their miraculous cure, consisting in anything they happened to be on, or doing, or having done to them at the time.

The ancient Greek physician Galen said ‘confidence and hope do more good than physic.’ The modern medical profession is not at all easy with this, but it is aware of the power of placebos. What is truly extraordinary is research showing that placebos are effective even when the patient knows they are being given placebos. It is as if at some level the mind appreciates that our objective experience is in a sense, secondary; the mental state we bring to our experience is primary. Whatever the object, we always experience our own mental state. With the placebo, we know it is only the mind that will make the difference. But it can be trusted to do this.

It can, though, work just as effectively in the opposite direction, so to speak. A few years ago I was called out to a hospice to talk to a bloke with advanced cancer who had thought of himself as a Buddhist for many years. We sat in the garden in the sunshine, and he wanted to know what would happen to him at death. Of course I said I couldn’t tell him, but I reassured him that, whatever happened, what he experienced would be his own mind. In that sense it wouldn’t be anything he was not equipped to meet with confidence. Within a few days the chap was dead. It was as if he just needed that reassurance from a ‘professional’, someone who appeared to have the authority to offer it.

My own hopes are pretty limited now. On 13 September we saw the oncologist. The hormone therapy hasn’t worked, the tumours have grown; I’m now on chemo. I was concerned about the tumour at the base of my brain, and losing my marbles, but it seems that actually this is underneath the base of the skull, which offers a bit of protection to the brain. The main concern is the liver. You can manage ok with quite of bit of unpleasantness in the lungs and the bones. Not so much with the liver, so it will be liver failure that inflicts the coup de grace. Because my cancer is rather rare, the doctors are flying blind and hoping for the best. My chances of surviving very long into the new year seem to be narrowing.

Anyway, for all my skepticism, I’m getting quite a lot of non-professional support. I’m having cranio-sacral therapy from a very kind friend, Vilasamani, and I’m going to a nice lady in St Johns Wood called Gretchen for acupuncture and herbal bits and bobs. And there’s the pills and vitamins and special dietary stuff that Claudia and my son’s mother, Dom, give me to swallow - chia seeds, apricot kernels…. and a rather pricey marijuana or hemp oil. And one thing I’m doing which I do think may well be effective in reducing side effects, but which is not officially recommended yet, is fasting for three days around the chemo.

My hope is for little more than to be able to decline at a rate we can manage and contain. However, the tumour in the bone is now giving me some pain in the hips: how fast will it get worse? My hope is not to be bedridden too soon (wheelchair?). And I also have some back pain (I presume from the lung tumour.) The chemo has opened up my tongue ulcer, which had almost healed over. This is a frustrating setback – once more, a side order of pain with every meal. And one of my main pleasures used to be sleep; now I wake regularly through the night because of the buzzy, electrical flickering from the nerve damage around my eye, with very occasional sharp pain in the eye. Again, will this pain become more persistent (hardly bears thinking about really)?

At present I can meditate my way through this, but it is hard work getting quiet. I used to have a student with quite severe cerebral palsy, who couldn’t sit still; I get a slight sense of what he has to work through with meditation. The practice though, is to sit with your experience, to keep meeting it as it is, to be soft and curious with an experience that you don’t want to know about. So that is what I try to do. It is to be receptive, both to what is being communicated and to my own unwillingness to hear. I tend to sit there with that assumption we have that one is just dealing in meditation with some internal communication. But I think it’s helpful to challenge that assumption, and to meditate in a way that takes you beyond yourself.

What is being communicated comes with the experience of the breath. But in order to be able to listen, I have to calm that compulsive flinching away from what is unwanted (as if my experience could by some miracle be other than it is). Ducking around difficult stuff may have worked in the past – but not now. And there is one thing this experience of mine has going for it once it gets past my guard. This is that it is our secret and most intimate link with one another. One never wanted to get that close. This helpless, hopeless brute reality has to force itself on you. But maybe at some point the breath is found to carry some quality of belonging, of our belonging to one another, and of a sense of care that is maybe less self-protective, that can relax and break open to the world. I say 'maybe' because my self-concern tends to tighten its grip under the pressure of constant discomfort. What the meditation does is open a space in which that self-concern sits with a deeper awareness and understanding that I'm afraid in my case doesn't really get a look in otherwise.

We associate dying with loss, of the future, of what being alive means. In reality, loss does not leave you with less life. It’s a different life, with its own interests. Loss, the dropping away of things, reveals some larger perspectives that you don’t usually get without a lot of strong practice. Some of those perspectives – regrets and so on – may be uncomfortable, but others quite liberating. A friend of mine, Paul, said his mother when she was dying simply dropped her long held habit of watching Coronation Street, and reading novels, but she enjoyed painting. I’m not sure I have that sort of clarity as yet, I’m afraid I've been watching Game of Thrones avidly (top-notch tosh – though I could do without the dragons and their bloody doe-eyed mother). I don’t enjoy eating quite as most people do, but after months not being able to take in or taste anything at all, I love my morning coffee, strong, milky, sweet, and bread and peanut butter, with banana (to make mastication without saliva easier) – though eating anything stings the mouth at present. But sweet things are not at all bad. I enjoy some music. I enjoy meditation, even when it’s work. I feel I’m still curious, in touch, alive to the life of things. Also, I don’t have the usual mental detritus swirling round my head repeatedly. There is a nice simplicity to a life that is firmly tethered to the question of how to manage this trip to the hospital, this meeting, this immediate bit of food, this walk to the shop, this footstep. The breath naturally becomes the common reference point. 

Dying fairly early does mean that you get quite a lot of attention that is much less likely to be there for someone in their eighties who may have lost contact with a lot of people from their working life. Something that one can easily overlook amidst the downsides of dying early, is the love and appreciation one gets. It’s almost as if people just need that excuse to reach out to another person who they know is in pain, with kindness. We are all in pain; we all need kindness – or rather, we all need to be kind – I mean, when it feels difficult to be feel kind. Again, I think kindness is to be soft and curious with something you don’t really want to know about. My situation is a new one for me, and from my present point of view I have come to regret having lost sight of things or not having had time for things that now seem to be the only things that matter.

However, one has to try to limit the visits one gets offered even from people that ordinarily you would be delighted to spend time with. I think what can be a bit tiring is two quite different, even incompatible world views coming together. A world that is ending, closing, and a world that isn’t, that appears to be endlessly open. One view is saying hello, what’s next, the other’s saying good-bye, nothing’s next. Both my sisters have lost their husbands, one of them, Helen, to cancer not long ago. The other, Janet, to a road accident (which was much worse, at least for her - it’s as if your life goes over a cliff.) Both of them are able to bring these two perspectives together. So they are quite relaxing to be with.

With my brothers – both older than me - I get a refreshing taste of the old-school English approach. Hector’s response to my bad news is to tuck into his takeaway lunch with relish. I ask how he is and he tells me briefly about his two hours with the dentist, and his neuralgia. Then we get on to more interesting matters. We talk over the opening Champions League football results. We talk about Simon Rattle, the newly arrived chief conductor of the London Symphony Orchestra. Hector feels there is something ‘earthbound’ about his conducting (basically the kiss of death for a conductor). So it’s not that you pretend that the elephant in the room isn’t there; but you chat cheerfully about other things in order to put dying in its place, to make dying secondary to life, as simply another event – and by no means the most important event – in one’s life, and certainly not a matter of huge significance for the life around you that will continue when yours is done.

The response of professional Buddhists is slightly different. Axiomatic to Buddhism is that you don’t take exception to death and dying, as an intolerable interference with life. Rather the opposite. The fact that life ends is built into its meaning. More than this, they take the view that dying propels you into a certain privileged perspective on things. This period of uncertainty about my continuing existence is regarded as opening up reaches of the mind that tend by their nature not to be available to inspection except under the pressure of a lot of sustained practice. My situation at present is therefore looked upon as extremely fertile ground for practice. (Not that it really feels like this.) Anyway, the main concern of Buddhists tends to be: how are you bearing up? Are you able to maintain reasonably positive mental states through it all so as to best take advantage of it? The basic attitude is that the person dying is not going through something that sets them apart from others. We are all dying. It’s just that I know I am and you (probably) don’t. In your case those men coming for you with that long black bag and zipping you up in it is an event in the future that gets lost amongst all the other things that you are planning to do first. In my case, the long black zip-up bag is my future.

Hector also talked about accompanying his wife to church every week. She has shifted her allegiance recently to a different denomination. Traditionally, your religion was laid down at birth, and you remained loyal to it, like one sticks to supporting a football team, however useless or unattractive it became. Consequently, the priests used to be in charge. Today it’s the laity that calls the shots. If the church doesn’t deliver, they’ll go elsewhere.

In Buddhism it’s no different. Traditionally in Buddhism, the laity did not really practice Buddhism as such at all. They just supported those who did, the monks. In the far east, the laity were given some very basic forms of largely devotional concentrative practice to do, that they could manage around their daily life – e.g. what is now known as ‘chanting’ Buddhism, Nichiren Sho Shu, where the practice is to recite ‘Nam myoho renge kyo’ ‘Homage to the White Lotus Sutra’.

It was only in the twentieth century that meditation became widely available to the laity. My own teacher back in the seventies, Mr Goenka, was taught by the chief accountant of the Burmese railways in the 1940s, U Ba Khin. And his teacher, Saya Thetgyi (1873-1945), who was taught the Vipassana method along with other lay people by a monk, Ledi Sayadaw, was at least nominally lay. However, these lay teachers remained good lay Buddhists. When one of Saya Thetgyi’s students put together a book of his teaching, Saya Thetgyi had the whole print run brought to him and set fire to the lot. U Ba Khin would not countenance the communication of this teaching for ‘therapeutic’ purposes. And as for Mr Goenka, he was appalled when IMS was founded in Massachusetts with the intention of teaching Thai as well as Burmese forms of practice. He told them that in teaching from more than one lineage they would be ‘doing the work of Mara’ – i.e. the devil’s work. And maybe he was on to something, because it was on a retreat at IMS that the modern mindfulness industry was conceived by Jon Kabat Zinn.

Kabat Zinn recognized that the only priests and shamans and magicians of our age that count are scientists and doctors, neuroscientists and psychiatrists. To appease them, he not only offered mindfulness as a secular practice for everyone, he dropped any mention of Buddhism at all. You don’t even need to be a Buddhist at all to teach it. In a way, very Zen (Jon Kabat Zinn’s original tradition). Most mindfulness professionals – i.e. officially trained and certified mindfulness teachers - are now non-Buddhists. So now you get lots of books on mindfulness (e.g, Mindful Sex, god help us) written by non-Buddhists; mindfulness is now not only therapeutic, it is widely regarded as therapy. It might seem that Mara’s work is done and he has his feet under the table. I’m not so sure. If Buddhists can give freely to people what they feel they need, without asking for any recognition in return, this is surely in the spirit of the Dharma, the Buddha’s teaching. No other tradition has that self-effacing generosity.

In being a professional, there is an inevitable element of performance, depending on your seniority. (An extreme example of this is the elaborate dance of Church of England bishops around the issue of same sex marriage.) I was never very senior (or professional to be honest). But still, it is good to be able at last to drop the whole performance of being a Buddhist. To take off the hat. And to see how it has accommodated me for this, the sharp end of things.