How to Live Well with Chronic Pain and Illness - A Book Review

Toni Bernhard with her puppy, Scout

Toni Bernhard's new book is her third, and I love them all. But this one is my favourite. Even more than usual, I felt while reading it that she was speaking to me directly. Not all writers have this gift.

Written in the easy, flowing style so typical of Toni's writing, it's astonishingly comprehensive, covering everything from the everyday difficulties of living with chronic pain or illness, to help for the friends and families of sufferers to understand what it's like to live with chronic illness, day upon day, year upon year. This was important to me, as I expect to many other sufferers, because virtually everyone I know in what Toni describes as the "parallel world" of the chronically sick finds it hard to deal with insensitive comments made by (often well-meaning) people who are ignorant of what their struggles involve.

As with Toni's previous books, it's clearly written from a Buddhist perspective. Here though, there seems less emphasis on formal Buddhist practices and philosophy, and perhaps a little more on practical ways of coping and "living well". Toni still introduces practices that have helped her to find equanimity and strength throughout the 14 years (so far) of her illness, and she's totally disarming in her openness about her struggles and occasional failures to respond to them with equanimity. There is not a trace of self pity, however. Much of the book seems written with a view to empathising and feeling compassion for her fellow sufferers and their carers. There are also delightful touches of humour. But it remains a very practical book, and she really does show that finding equanimity, retaining the aspects of life that can still give us pleasure even though we're ill, and being compassionate with ourselves (either in response to physical suffering, or when we fail to respond to it in helpful ways), can help to enrich our lives and reduce the mental suffering that so often accompanies chronic illness. Toni's compassion, wisdom and practical experience of living with illness, shine through every page.

I cannot stress enough how easy this book is to read. The chapters are many and short, each dealing with a different aspect of living with chronic pain and illness. This may be important for many readers, because pain and illness affect concentration for a lot of sufferers - so the shorter the chapters, the easier the read. Each chapter is also helpfully subdivided. This also has the benefit of making it easy to dip in to the book and pick out sections that may be relevant to difficulties we're experiencing at that time.

As with her previous books, Toni's loved ones make appearances in the many little stories that illustrate her own experiences and difficulties. Especially when you've read all three books, you may come to feel you almost know Toni's husband, children, granddaughters and even her playful Labrador puppy. These personal appearances never intrude, however. They always help to make some point clearer, by bringing experiences from her real life to show how a life that's been turned upside down can still be responded to in ways that help to reduce suffering. Toni is also honest in recognising that in certain respects she's lucky. Many chronically ill people have no partner, no family, no home of their own, no income, or (in America) little or no health insurance. She recognises that their own experiences may be much more difficult. All this, together with her disarming honesty about her own difficulties, reveal a woman who feels very much a part of the chronic illness community, rather than an expert dispensing wisdom from on high. Although, as I said earlier, she is indeed very wise!

This is one of the very best 'self help' books I've ever read. Reading it brought me comfort, help and companionship during a difficult pain flare. I've lived with chronic pain for eleven years now, and Toni's latest book is one of those that will never be far from my bedside.


How to Live Well with Chronic Pain and Illness: A Mindful Guide is available from Amazon and all good bookshops.

Enough

This is different from anything I’ve posted previously on this blog. It’s edited from a Facebook status update (on 11 September) that grew and grew – surely the longest I’ve ever shared. Some may even feel that it’s incompatible with a blog that tends to reflect a Buddhist (though secular) outlook – I don’t know. I just know that I wanted to share. I’ve seen and read about so much bloodshed in the past fifteen years. Certainly, I regard the events of 11^th September 2001 as a terrible atrocity. My heart tells me that, and international law tells me that. But I am tired of reading those words, ‘Never Forget’, as if the million or more deaths that followed, supposedly in response to that criminal act, are less important – less worthy of remembrance. To me, 20^th March is the anniversary of a far bigger tragedy than 9/11, and an even greater crime. So I want to share the feelings, some of the thoughts behind that remembrance. I also think that these feelings spring from the same part of me that’s attracted to Buddhist ethics and practices. I kind of float in and out of Buddhism just as I float in and out of a very limited form of peace activism. But the source of both in me, the core values of justice and peace, the horror of bloodshed and inhumanity, remains constant.

TRIGGER WARNING: Although I’ve tried not to be gratuitous in describing the visceral effects of war, there may be passages that would be traumatic or harmful for some people to read. One particular sentence comes to mind. It was important to me to express, however briefly, something of the reality of war, as an antidote to the newspeak through which it is often presented. Clearly, however, I don’t want my words to hurt anyone, so it’s up to the reader’s best judgement as to whether to read further.

Thirteen years ago, when the US was attacked by mostly Saudi Arabian criminals, I tended to see war as something that happened on the news. I didn't like it, but I didn't feel very personally involved. By 2003, when mostly American criminals attacked Iraq, I was politicised - and like at least a million other people in the UK, I took to the streets.

After becoming chronically ill a year later with neuropathic pain, I spent several years campaigning against various related War in Terror issues, but mostly the war on Iraq. I had to give it up eventually because the continuing sense of horror, and the pressures I was putting on myself, became too much for me and I broke down. But for a couple of years I kept myself aware and informed, and I felt very emotionally involved. When people questioned my views I defended them, arguing often and at great length. I tried to be logical and I knew I was much more knowledgeable than I'd used to be, but the passion always came through. And of course, I got nowhere. People who believed in war continued to do so, and my mind didn't change either.

Now, and especially since Israel's latest barbaric assaults on Gaza, I feel like I can hardly be bothered to discuss it. I've seen and read about so much insanity, cruelty and horror, that I don't have much respect left for the views of people who defend, say, the Iraq War, or Israel's slaughter of the Palestinians. I even find it a bit difficult to want to stay friends with people who espouse such views. I know, of course, that they have a moral and legal right to express them, and much of my peace activism was concerned with defending the right to free speech. I know that it's a fact of life that my friends and I aren't going to agree on everything, and that in some ways this is a good thing. But increasingly, I seem to have no respect for pro-war views. I mean, for frack's sake, have people never heard of international law, or the UN Charter???

International law is meant to protect all of us from the chaos, the slaughter and the 'scourge of war'. The UN Charter permits going to war only in very rare and desperate circumstances. It's not okay, for instance, to respond to terrorist attacks by fighting a war that causes suffering and death to millions of people who had nothing to do with those attacks. That simply trashes the memory of the victims of 9/11 in the worst way imaginable. And international humanitarian law declares that in those rare circumstances where war is necessary, it's a crime to target civilians or civilian infrastructure, no matter what the reason or provocation. It is never, ever okay to not discriminate between a military enemy and innocent civilians. It is never, never, NEVER okay to murder children!

In reality, and increasingly it seems, war never follows the rules laid out in the UN Charter and the Geneva Conventions. It sometimes seems to have good intentions, but those are almost always based on lies, lies used to justify wars that shouldn't even be taking place. And no military, anywhere, seems to translate international humanitarian law into practice. Whole suburbs or even towns are flattened in order to kill a few terrorists. In the case of Iraq, a whole country was virtually destroyed. Large parts of Gaza look like Hiroshima after the bomb, and little Palestinian girls are decapitated (aren't we supposed to be better than ISIS?), disembowelled or, in one photograph that I can't forget, have the back half of their skulls blown off. Sometimes the military gets its man (and sometimes not), but it often takes a hundred or a thousand more people with him. Some estimates suggest that a million Iraqi people died as a direct result of the 2003 invasion. Women get killed. Old people with dementia get killed. Children get killed. Babies get killed. It's a wonder that every single person in those countries doesn't hate us. It would be understandable if they did.

I'm sick and tired of it. I'm sick of nice, sane, friendly people defending war in terms of 'security' or 'freedom'. War as it is fought today is obscene. It is streets filled with burning flesh, blood and intestines. It is real people, REAL CHILDREN, screaming in fear and pain. It is never fought with good cause, and is never conducted in as way that protects innocent people and adheres to international law. There is no such thing as a ‘surgical strike’ - the war on Gaza demonstrates that. War is terrible, unjust suffering inflicted on human beings by other human beings. It is sick and evil and it can almost never be justified. The pilots who brought down the World Trade Centre thirteen years ago were criminals, not an army! The fact that something needed to be done did not mean it was okay to invade, occupy and flatten countries. It's never remotely okay to kill children, no matter what the provocation. 

I can no longer feel bothered to argue with people. Anyone who thinks these atrocities are justified by 9/11 is either ignorant, unaware or has no moral centre left. People justify Israel's actions in the last few months even though 500 children were killed, and thousands more injured, hundreds of thousands displaced, orphaned or traumatised. I don't even want to speculate about the number of kids killed in Iraq or Afghanistan. And I am losing tolerance for people who defend these things. It’s not as if the UN Charter and Geneva Conventions aren't available online for everyone to see!

Rest in peace, all you thousands of victims of 9/11. Rest in peace, all you millions of people who suffered in the subsequent War on Terror. Slaughtered civilians everywhere, your lives are all equal, even though it is constantly implied that they aren't. Your deaths aren't 'regrettable but justified' - they are terrible, wicked crimes.

I’m aware that I need to find a calmer, more ‘Buddhist’ place in me that can respond to these matters in a more centred way. But this is how I felt on 11^th September 2014. This is my 9/11 piece for this year.

Cunning Foxes and Wily Coyotes

Lately I’ve been enjoying a film and a book, very different in character yet united by a common theme. The film is the animated comedy ‘Fantastic Mr Fox’, directed by Wes Anderson and based on the story by Road Dahl. The book is called ‘Prodigal Summer’ by Barbara Kingsolver, and although it’s a novel it cleverly integrates a lot of science, in a way that it always remains a part of the story rather than as an ‘expository lump’. I’m not a scientist, but Kingsolver is, and in this book one of her main characters is concerned with the role of predators in ecosystems. She studies coyotes.

This character, the aptly named Deanna Wolfe, tries passionately to explain to her lover, a farmer who hunts coyotes, why predators are more important to an environment than prey animals. In an ecosystem, there are relatively few ‘top predators’, such as bears and wolves, but lots of prey animals, from deer to mice and squirrels. Shooting most or all of the local top predators can have devastating effects beyond the loss of a single noble species, because the prey animals then multiply. Squashing spiders causes flies to increase; killing foxes can cause a plague of rabbits that eat the farmer’s carrots. The increase of the top predator’s natural prey can also crowd out other species, causing their extinction. Often we cannot predict the effects of wiping out a predator population, but it will nearly always cause problems for a previously stable ecosystem.

Deanna has written a thesis which attempts to explain why the wily coyote, despite being the ‘most despised animal’ in the United States, killed in hundreds of thousands every year (a horrible statistic), actually increases in numbers when it’s hunted. Something happens to their breeding. It may be that when their population is under threat, all of the females in a pack start to breed, instead of just the alpha female. Or perhaps something hormonal causes bigger litters. Either way, the efforts of farmers to protect their lambs seems to make the problem worse. Mothers, fathers, pups are killed for nothing – except for money: the annual ‘coyote bounty’.

This got me thinking about foxes. Here in a UK, a lot of people love foxes, but a lot of people hate them. This hatred and distrust has been coded in tradition (partly through ritualistic and cruel aristocratic ‘sport’) for centuries. They kill our chickens! farmers rage. They raid our wheelie bins! townies complain. This hatred is pointless, because there’s nothing to hate; it’s just a focus for people’s frustration, a scapegoating. In a touching scene in ‘Fantastic Mr Fox’, Mrs Fox (rather sexily voiced by Meryl Streep) asks her husband, “Why did you lie to me, when you promised you’d never go raiding the farmer’s birds again?” Mr Fox (a characterful George Clooney) replies regretfully that he doesn’t know. “I’m a wild animal”, is all he can say. And of course, that’s right. How can we hate an animal for doing what it can’t help? Foxes just do what they do. They can’t make a choice to do something else.

In the British countryside and towns, foxes are the top predator. They are often called pests by angry homeowners, but they are not pests. By preying on rats, mice, even insects, they help keep down pest numbers. They do us a great service. True, they also kill birds, just like our lovable moggies do. But the RSPB insists that the decline of garden birds has more to do with our own effects on the ecosystem than with predation by cats and foxes. As so often, foxes are scapegoated for our own failings. 

Going back to the fictional Deanna’s thesis, I wondered if foxes also breed differently when they’re hunted. Who knows? – it may or may not be. But when culls have been tried in the past, they’ve always failed. Killing foxes in towns costs a lot of public money (which surely we can ill afford), yet despite the killings, foxes maintain a fairly stable population. Numbers don’t increase, but they stay roughly the same. It seems that foxes from the countryside or other town areas simply move into spaces left available by cullings, glad of the opportunities provided. Foxes are a wonderfully adaptable species, and we punish them for that adaptability, viewing it suspiciously as cleverness, slyness or cunning. Once again, this is scapegoating; foxes are too like us humans, the most adaptable mammal species on the planet. And we make them pay – but for nothing, it seems, than enjoyment, sport or revenge. Yes, some predators can be wiped out, and their loss is devastating beyond their extinction as a single species. But foxes’ numbers remain the same; coyotes’ actually increase. By killing them, we cause blood and suffering, and the starvation of cubs, all for nothing.

‘Fantastic Mr Fox’ ends with the foxes and other animals, having been persecuted throughout the film by the farmers, making a new home underneath a supermarket owned by the same farmers. Adaptable to the end, they have lost their home in the hill under the beautiful tree, but have made a new life where they can raid an unlimited supply of food every night. ‘Destroy’ them in one place, and they pop up in another. Mr Fox is fantastic indeed!

There’s no question whose side the film is on. It celebrates the wit, the audacity, the adaptability, and the cunning, of the fox. As we should do. And that goes for the wily coyote as well. We may have to put up with nuisances from both species, but hating them is just silly, and we need them too.

Waking Up to the End of Suffering

Having read Toni Bernhard’s first book, ‘How to Be Sick’, I was already acquainted with her beautiful and unique writing style. 'How to Wake Up', her second book, is no exception. The writing is clear, easy to read, almost conversational – and the content is wise, practical and helpful. Several friends of mine have noted that it feels as if Toni is speaking to them personally, and my own experience is just the same. As someone who has suffered from chronic pain for nearly ten years now, this is exactly the kind of book I need when I’m struggling with pain or anxiety. I’m used to keeping ‘How to Be Sick’ near me whenever I’m alone or in a flare-up, and it feels like having a supportive friend at my side just when I need one the most.

Partly this must be because Toni has herself suffered from an ME/CFS type of illness since 2001. I’d found the earlier chapters of ‘How to Be Sick’ almost heartrending to read, because in them she described powerfully (but without a trace of self-pity) the early stages of her illness, which began with severe flu-like symptoms during a trip of Paris. ‘How to Wake Up’ feels less personal, because she has already told that story. But she remains unafraid to illustrate the wise, Buddhist-inspired practices she describes, with stories from her own experience and those of her friends. This makes the book both touching and, in the end, more ‘real’, because you know the practices as well as the feelings she describes (common to so many of us in life’s difficulties, not just pain or illness) arise from real, personal experience. In both books, we feel we know not only her but also her husband and her hound dog, through so many of their ‘ten thousand joys and sorrows’ (to quote a Buddhist phrase). We know that we’re not alone in our own difficulties.

On a personal note, I also like the version of Buddhism that comes across in this book especially. If I’m a Buddhist at all then I’m a secular one, and whilst this book is in a broad sense spiritual, it doesn’t come across as at all religious. Toni doesn’t believe the Buddha’s enlightenment, or ‘awakening’, as she calls it, had anything supernatural about it, and she doesn’t allude to rebirth in a literal or religious sense either. So anyone who, like me, feels uncomfortable with ideas of ‘faith’ and the supernatural, need not worry here. These are practices that can be followed by anyone, whatever faith or lack of faith they happen to have.

Kim Stanley Robinson (the science fiction writer, no less!) endorsed this book by describing it as ‘something to cherish and practice’. I’d go even further and say that if anyone wanted a book that explains what the core practices and ethics of Buddhism are (without any of the religious accretions), they couldn’t do better than to read this book. The Buddha’s life’s work was about ‘suffering and the end of suffering’ (no matter what pain or difficulties we may experience), and in beautiful, practical ways, ‘the end of suffering’ is what this lovely book teaches so well.

Over the Hills: A Family's Odyssey of Healing in Mongolia

This is a rather personal review of a film I saw two nights ago, and am still thinking about.

Kristin Neff is a psychology professor at the University of Texas, in Austin. A few years ago she wrote and published ‘Self-Compassion’, a book (or to be precise, one of three books) which has recently changed my life – not in an instant, road-to-Damascus kind of way, but by gradually affecting how I see life, myself and other people. Like many others, I was brought up to have compassion for other people. I think I already understood that it was okay to have self-compassion as well – but not that it was so fundamental to health and well-being, or that there was so much research-based evidence for its effectiveness. Being given permission to love oneself is a wonderful thing. I don’t know if that sounds trite or not, but it’s how it feels to me.

Watching online interviews and listening to guided meditations by Kristin has deepened my admiration for her, and been a moving experience also. Now, seeing the film ‘The Horse Boy’, produced by Kristin’s husband Rupert Isaacson, has affected me in a different way but possibly just as deeply. Hence this movie review!

Kristin met Rupert, an English travel writer and human rights worker, in India while researching her PhD. They married and had a son called Rowan, who at the age of two was diagnosed with autism. Hearing this was, in Rupert’s words, “like being hit across the face with a baseball bat”. After years of suffering Rowan’s severe tantrums (neurological in cause, so he was unable to help it), and of encouraging him in vain to speak fully and to use the toilet, they suddenly discovered that his symptoms diminished greatly when he was with horses (Rupert has worked with horses all his life, and loves them). What was more, Rowan and his neighbour’s horse Betsy clearly had some kind of deep mutual understanding, on a non-verbal level. When he was placed on Betsy’s back, he spoke his first full sentence (he also said “I love you” for the first time, to Betsy). And there was something similar going on between Rowan and other kinds of animals, who would often let him play with them to an extent that they wouldn’t with neurotypical children. Watching these scenes in the film was very moving for me, and was the first challenge to my previous thinking about animals. I know that animals can communicate with humans, of course (all cat or dog lovers know that), and that they may experience love or something like it. But this was different. Rowan had a relationship with Betsy that his dad, a passionate horse lover, had never seen or experienced.

What Rupert eventually persuaded Kristin to do next was “something crazy”, as he put it. The family of three set off for Mongolia, and eventually Siberia, to see if the shamans of a remote tribe could help Rowan. They rode into the steppes and the mountains, on horseback. Rupert had encountered shamans in his human rights work with indigenous peoples around the world, but this was an adventure that very few people, if any, can have experienced. The resulting film, directed by Michel Orion Scott and narrated by Rupert, is ‘The Horse Boy’.

At all times, it’s very moving. It’s also warm, tender, upsetting and joyful by turns – and very beautiful to look at, despite the low-budget photography. Some of the rituals that Kristin and Rupert partake in are strange, some physically painful. At times Rowan seems to be regressing, and his parents’ concern and self-doubt are distressing to see. Ultimately the outcome is exhilarating and happy, however. I won’t give too much away, but suffice it that while Rowan by the end of the film is still autistic, he’s a changed boy. And Kristin and Rupert see that change before their eyes, in the middle of the Asian continent.

How to account for it? Rupert believes without much doubt that the shamans did it; Kristin is more sceptical but open to that as one of the explanations. The film’s main effect on me, apart from leaving me deeply moved, was to lead me to question my assumptions about traditional healers. I’m a sceptic in regard to methods that haven’t been tested and validated scientifically, and I have to admit that I admire this trait in myself and others. But after years of trying every Western medical treatment without success, something profound happened here in Mongolia and the Siberian mountains, and especially at the final stage of the journey. What was it? I’ve no idea, but although I’d like to keep that sceptical part of myself alive, I’m less dismissive now of the claims and methods used by other cultures, even if they do explain their success in terms of spirit worlds I find it hard to believe in.

Other aspects were baffling too, as well as deeply moving. I’ve mentioned Rowan’s relationships with horses as well as other animals. These scenes were delightful and mysterious too. What was going on? How did horses have this incredible ability to calm Rowan’s neurological tantrums, and how did he bring forth such gentleness in them? In certain moments, it’s as if we were seeing the animals through Rowan’s eyes, and I felt myself loving the horses, the reindeer and baby goats, and Rowan too. I feel as if I’d never realised on such a deep level how beautiful these animals are. The people were beautiful as well, from Kristin and Rupert to the descendants of the first people in the world ever to ride animals – the Siberian reindeer people, now reduced to a tribe of only two hundred. I felt in awe of the beauty of both animals and human beings – and simultaneously baffled by the apparent fact that the world is ruled by a handful of psychopaths. I didn’t know whether to have renewed faith in human nature, or despair at how civilisation is so thin despite so much goodness flowing from person to person, from person to animal and back again…

I was also struck by the beauty and fullness of Kristin and Rupert’s lives together, and with Rowan. A mysterious scene took place knee-deep in the waters of Lake Sharga, as the married couple reverently washed each other’s hair. It felt very solemn and deeply loving. Was it one of the rituals? I don’t think it was said, but it looked like it. Yet it also looked like a natural expression of a couple’s love.

I found myself tenderly regretting that I’d never had children. In years past I wouldn’t have been ready emotionally, for such a responsibility; now, with my chronic pain and anxiety, we wouldn’t be able to cope either practically or financially. But seeing Kristin and Rupert, so patient and gentle with Rowan despite being pushed to their limits both physically and emotionally, I felt a wistfulness that this aspect of life would not be part of mine. Not only had Kristin and Rupert had a child (another mystery: Rowan had been born premature, seven years to the hour since Rupert had first spoken to Kristin!), but they had come halfway around the world with an autistic boy, trekking on horseback through the wilderness (Kristin admits to never having been a horse girl!) in search of a healing which they couldn’t know for sure would even work. To call that a gamble is an understatement; no wonder it took Kristin so long to be persuaded in the first place.

That was another cause of my wistfulness: the fact that they were willing to take that slim chance. That they engaged with life to such a degree. Even when I was well, I was never like that. I tended to shy away from risk, like a nervous horse…

Ultimately, though, this is what makes ‘The Horse Boy’ such a joyful, life-affirming story. A story that began with sudden, premature agony and then turned to joy; followed by concern, worry and despair as Rowan’s strange behaviours led to a diagnosis; and then years of stress and often exhaustion as they battled to cope with Rowan’s affliction, sometimes before the eyes of misunderstanding strangers… A crazy adventure that would never have happened without this apparent ‘curse’ (Rupert admits to being a better father than he would have been if Rowan was a neurotypical child, because he was forced to listen to what his son needed)… The unearthly beauty of the mountains and the Siberian taiga… Rupert gently and humorously singing to Rowan as he held him on horseback: a traditional tune called ‘Over the Hills’, which I know from ‘The Beggar’s Opera’ and Roger Eno’s album ‘Swimming’… Meetings with beautiful people and animals, the beginning of Rowan’s first ever friendship with another child, and finally a shaman who ‘worked’ on Rowan without any grand gestures or showmanship, but simply said that Rowan would be better… And he was.

I was astonished and affected by the beauty of this film. Like a quiet hymn to the mysterious wonder of life, of animals, of people, and of a beautiful, gentle family. It left me questioning what autism really is, what was special about Rowan’s mind that, even when so afflicted, he had such direct and loving communication with animals. In fact, I’m questioning a whole lot of things. The world somehow seems a bigger place, with more mysterious workings that I’d previously realised.

I have many friends who love the work of Kristin Neff. She has brought them (and me) consolation in the midst of severe difficulty, and the realisation that we have the inborn capacity to give ourselves compassion through any suffering. I feel sure that they will all love this film. And anyone who knows anyone with autism, or is interested in relationships between people and animals, should certainly see it. But most of all, it’s just a wonderful film.

‘The Horse Boy’ is available online at http://www.horseboymovie.com/. There is also a book of the same title by Rupert Isaacson, available at the same website or from Amazon. I haven’t read it yet, but I’m just about to!

          Jockey was a Piper’s son,

          And fell in love when he was young;

          But the only tune that he could play,

          Was, Over the Hills, and far away.

          And I would love you all the day,

          Every night would kiss and play,

          If with me you’d fondly stray

          Over the Hills and far away. 

All photos are taken from the publicity materials on ‘The Horse Boy’ website. 

Different Kinds of Nirvana

One of the things that attracts me to Buddhism is that it’s not really a religion. It is, of course, but I think I agree with the secular Buddhist teacher Stephen Batchelor that elements such as literal rebirth and karma are largely cultural – they aren’t uniquely the Buddha’s teachings. The Buddha didn’t teach a set of beliefs as such; a study of the vast Pali canon suggests that Siddartha Gotama was evasive when asked metaphysical questions. What he taught was actions. Being mindful, practising meditation and following ethics based on the principle of non-harming – these are practical, pragmatic ways of living life without adding unnecessary suffering.

I’m attracted also to a sense of joyfulness, peacefulness and compassion. Those qualities of equanimity, gentle humour and deep compassion that the Dalai Lama seems to exude, are characteristic (though to a lesser extent, perhaps) of a lot of sincere and experienced Buddhists. When I first joined my local Buddhist group, I was greeted by a lovely, friendly, gentle group of people – as mixed as any group, but all with a noticeable tendency not to be judgemental – and a small shrine centred around a statue of a serene Buddha – a human being with a mysterious half-smile. No almost-naked man hanging bleeding on a cross. No sins to be forgiven.

I still like this group, although I don’t attend often. One cause of slight alienation for me is the absolute reverence with which the Buddha is often spoken of. At the start of every session we ‘salute’ the shrine - hands together, with a chant and then a bow - and so far I’ve felt a little too embarrassed to ask what this means. It feels to me almost as if he’s thought of as perfect – as if his enlightenment that night under the Bodhi tree (did it really happen like that? – who knows; it’s a lovely myth) resulted in a uniquely perfect person. But there are no perfect persons. That would make him a God. And it would make Buddhism a little more like the other religions that I cannot relate to because of the similar leaps of faith that they require one to make.

I have a kind of shrine as well – two of them, in fact. In my bedroom, a rather feminine Buddha rests sweetly with hands and face on one knee, while downstairs, a more traditional statue sits in the familiar lotus position. I don’t salute them, though, or revere them as such. They represent for me a kind of ideal of equanimity and peace with life, which it seems the Buddha found (at least for much of the time), and which brings me a little more calm when I gaze at them. As my friend Toni says in her book ‘How to Be Sick’: ‘The Buddha inspires me because he never claimed to be more than a human being. He found pain just as painful as you and I do. I take this as a reminder that the equanimity and joy we see in the many images of him are within the reach of every one of us.’

In a small discussion group I was part of one evening, we talked about the human tendencies of craving and aversion which, from the Buddhist viewpoint, cause so much suffering. The group leader said that experiencing pleasure almost inevitably carries with it a craving to prolong the experience, as unpleasant experiences create powerful feelings of aversion. As I remember it, he said that the ideal emotional state would be a kind of ‘flatlining’, because then we wouldn’t feel craving or aversion and suffering would be greatly reduced. I found this very hard to accept, and so did another group member, who said that she could experience pleasure and then let go of it, because there would be other pleasures to enjoy later. As Toni said to me when I told her this, who wants to live by flatlining? What mindfulness and other practices help us to do, she said, is to experience each moment fully, with its joy or its pain, and then to let go of it. Buddhism recognises that all life, all experiences, all feelings, all thoughts, are impermanent – but that doesn’t mean we can’t enjoy them while they’re here.

Because my main reason for joining the Buddhist group was to meet other people in a kind of sangha (spiritual fellowship), and to meditate with others, I began to attend only on practice nights. I found other activities hard to relate to; although ideas of literal rebirth and such aren’t forced on any of us, it feels like a different kind of Buddhism from the one which I have at last come to accept. If I can find a more secular group, more based on meditation practice and living in the here and now, I will. But I’ve made some lovely friends in this group, so I’d like to recognise the beautiful things we have in common, and take part in it from time to time.

Last week was meant to be a practice night, but this was changed, and I found myself studying the complex subject of the Wheel of Life. This is a symbolic, pictorial way of exploring the law of conditionality and its effects on human life. As one goes round the wheel, we see how the course of an unenlightened life takes us from birth to death to birth again, with experience, sensation, attachment, craving and aversion in between. I wasn’t sure about this, either. For one thing, it felt as if we were being taught doctrine – and after years of Sunday masses full of it, I don’t feel comfortable finding it again in a Buddhist guise.

One of my problems is that I’m a habitual sceptic when it comes to anything metaphysical. Sure, we have mystical experiences. I have them sometimes when I listen to Beethoven’s string quartets - but if anyone tries to explain them in terms of God or whatever, I shut my ears again! Now Buddhism isn’t a theistic religion (thank God!), but many Buddhist traditions still require you to believe in something without evidence. This means that they are inevitably doctrinal in their way of teaching. And in my case, it makes the idea of literal rebirth a big stumbling block.

Although some of the imagery feels a bit anachronistic, I accept that the Wheel of Life is a subtle concept; as more than one group member said, one can find something new in it each time one studies it. I’ll have to take that on faith, but I do believe them! I wondered if it could still have something profound to say about life, whether or not we believe in reincarnation. Well, I haven’t studied the concept before, but it seems to me that it probably does.

At the same time, something else bothered me. It all felt rather negative and depressing – like the idea of emotional flatlining instead of fully experiencing life. Thinking about rebirth, I suppose I wouldn’t want to keep being born again indefinitely. It would be pretty tedious having to go through adolescence and pain and working for bullying employers again – and that’s if I didn’t end up in a war zone! But then, given that none of the Buddhists I know seem to remember any previous lives, every life would feel like the first one anyway. Why was the group teacher, a relaxed, smiling and likeable man with a sense of humour (and who probably enjoys life on the whole), so intent on escaping the cycle and floating off into nirvana? (I ought to add that he’s also one of my Facebook friends!). Is this life really so bad – at least for many of us in the developed world?

True, I think the Buddha was right when he said that life is dukkha (suffering, unsatisfactoriness) – it isn’t the way any of us would ideally want it to be. It does include a lot of suffering, and it’s certainly far from perfect. But it includes a lot of joy as well – and I speak as someone who really would love life to be different, given that it includes chronic pain and anxiety and is all too limited by these difficulties. I can’t help thinking that this interpretation of the Buddha’s teachings is all too reminiscent of other religions, and their ‘bias against the living world’ (as Tara Brach puts it). Religions tend to hold that the spiritual world is ‘higher’ and more perfect than the material one. Hence the need to reject physical temptations in order to reach heaven (as in traditional Christianity), or to attain full enlightenment, nirvana and an ultimate escape from the cycle of rebirth (in Buddhism). The emphasis is a kind of anti-life. And I don’t relate easily to that, because despite all my difficulties, I love life. Perhaps that just means I’m not very enlightened – well, I know I’m not, so perhaps the non-secular Buddhists have a point!

One morning a few weeks ago, I was walking down the street from my local pharmacy, preoccupied with pain and anxiety – in a flare-up, family problems, difficult appointment with my doctor… All in all, I wasn’t very cheerful. And then I looked up, and saw that the trees lining the road had finally, after a long winter, come into leaf. The leaves were that vivid, fresh green that they only have when they’re new, and the sun was shining though them in a brilliant blue sky. It completely took my breath away, and I felt my heart rejoicing.

I hadn’t made any conscious effort or decision. I hadn’t reluctantly put time and Beethoven aside, and settled down to dutifully meditate (it can feel rather like that at times). Quite involuntarily, the physical world had swiftly brought me out of my ruminations and into the present moment.

Isn’t present moment awareness what the Buddha’s teaching is about? Yet here, in a moment that probably lasted just a few seconds, I was rejoicing, awe-struck by the beauty of the real, physical world.

It reminded me of a wonderful passage in the final chapter of Tara Brach’s new book, ‘True Refuge’. Tara is one of the teachers who introduced me to the beauty and consolation of Buddhist thought, who helped me to realise that here was something that might actually have a deep meaning for my life. She describes a day when she too was suffering physically and mentally (like me, she has a chronic pain condition), and when she too was brought into a joyful present moment awareness by the beauty of the world around her. I’m quoting this long passage because, while it’s quite metaphysical and based on something we’d probably need to experience ourselves to fully ‘get’, at the same time it’s so beautiful and moving. Reading it gives me hope that I may have the potential to fully love life, despite the difficulties in my mind and body. After all, is loving and cherishing life necessarily the same as craving it?

It also raises a question – one which I’m quite willing to accept may result from my lack of experience and knowledge of the Buddha’s teachings. This period of scepticism may just be something I’m going through, before reaching a deeper understanding that others in my Buddhist group already have.

The question is this: if present moment awareness can bring the sweetness of life so vividly and joyfully alive, why would one need to escape this world in order to experience nirvana?

Then I paused—the resentment toward my body caught my attention. As I looked more closely, the resentment quickly gave way to a familiar grief. Why couldn’t I just walk on this earth without feeling pain? Tears started to flow as I contacted the enormity of my frustration and longing. “I want to feel alive. I want to feel alive. Please. Please. May I feel fully alive.” Naming it opened me to what was behind the longing: I love life. Embedded in the grief, as always, was love. A voice inside me was repeating the words over and over, as a delicate, tingling warmth filled my heart.

I’d been holding back this love, holding back from fully engaging with life. It was a reaction to feeling betrayed by my body, a defense against more loss. But in my fear of being attached to health, I’d not allowed myself to feel the truth—I love life. Qigong wasn’t about fueling attachment, it was about fully embracing aliveness. At that moment I decided to stop holding back my love.

As I allowed the “I love life” feeling to be as full as it wanted, the “I” fell away. Even the notion of life fell away. What was left was an open radiant heart—as wide as the world.

This tender presence was loving everything: the soft streaks of pinks and grays in the sky, the smell of eucalyptus, the soaring vultures, the songbirds. It was loving the woman who was standing silently about two hundred feet away, also gazing at the colors of dawn. It was loving the changing painful and pleasurable sensations in this body. Now, sending chi to my knees made intuitive sense. It was awareness’s natural and caring response to its creation. “I” wasn’t loving life—awareness was loving life.

This experience led me to see and release a limiting and unconscious belief that I’d held for some time—a belief that the realm of formless awareness was more spiritual and valuable than the living forms of this world. This bias against the living world can be seen in many religious traditions. It emerges in some interpretations of the Buddha’s teachings as an insistence on guarding ourselves against the pleasures of the senses—beauty, lovemaking, music, play. It emerges in the superior status of monks over nuns, in valuing monastic life over family and lay life, and in the warnings against attachment in close personal relationships. I now believe this bias comes from fear and mistrust of life itself. For me, recognizing this in my own psyche was a gift.

We do not need to transcend the real world to realize our true nature and to live in freedom. In fact, we can’t. We are aliveness and we are the formless presence that is its source; we are embodied emptiness. The more we love the world of form, the more we discover an undivided presence, empty of any sense of self or other. And the more we realize the open, formless space of awareness, the more unconditionally we love the changing shapes of creation.

The Heart Sutra from the Buddhist Mahayana texts tells us: “Form is emptiness, emptiness is also form. Emptiness is not other than form, form is not other than emptiness.” We can’t separate the ocean from the waves. Our path is to realize the vast oceanness of our being, and to cherish the waves that appear on the surface.

During the final days of the retreat, my willingness to love life unfolded into a very deep, stable happiness. The happiness wasn’t reliant on things being a certain way—my moods and physical comfort went up and down. I was happy for no reason. This unconditioned happiness or well-being is a flavor of awakening. It arises when we trust our essence as awareness, and know that this entire living world is part of our heart. Being happy for no reason gave me a kind of confidence or faith that no matter what happened, everything would be fine.

I returned home and jumped into a delicious daily ritual of meditation and qigong. During those first weeks I’d go to the river and scramble down through rocks and bushes to a secluded beach. Nourished by the sounds of rushing water, the firm sand and early morning air, I practiced presence in movement and stillness. You can probably imagine what came next. After I hurt my knee on the small incline down to the beach, I moved my practice to our deck. Some of the arm movements strained my neck so I had to minimize them. Then standing up started to strain my legs, so I began to practice in a chair. Then it rained for a week straight.

And yet, it was all really okay. More than okay. One of those wet mornings as I was sitting, my mind became very quiet. My attention opened gently and fully to the changing flow of experience—aching, waves of tiredness, fleeting thoughts, sounds of rain. Continuing to pay attention, I felt the subtle sense of aliveness (chi energy) that pervades my whole body. This aliveness was not solid, it was spacious, a dance of light. The more I opened to this aliveness, the more I could sense an alert inner stillness, the background inner space of pure being. And the more I rested in that stillness, the more vividly alive the world became.

After about thirty minutes I opened my eyes and looked at the lush fern that hangs in our bedroom, at its delicacy and grace. I was in love with the fern, with the particularity of its form (how did this universe come up with ferns?), and with the vibrancy and light of its being. In that moment, the fern was as wondrous as any glorious scene by the river. I was awareness loving my creation. And I was happy for no reason. I didn’t need to have things go my way. I was grateful for the capacity to enjoy life, just as it is.

Adapted from  True Refuge (2013)

All photos my copyright, except the Wheel of Life image (artist unknown).

How to Be Sick With Grace

For the past five years, since who-knows-what triggered a nervous breakdown in the spring of 2008, I’ve been an anxious little bunny. Intermittently, at least. It’s always there in the background, and it needs careful managing if I’m to keep it there. But it’s also nine years since I first developed chronic pain. The anniversary is only a few days away – 24 May. I turn to that thought not with an eager bunny hop, but a kind of regretful sigh. Very few of us look forward to our birthdays as we get older, as it’s an uneasy reminder of you-know-what. But at least with birthdays we have something to actually celebrate!

Nine years sick – as they would say across the pond. Over here it’s ‘ill’ – or, if you’re a supporter of the Con-Dem government, or believe what you read in the shit rags – ‘fraud’.

Imagine the relief I felt when I opened Facebook one day and found that my friend Toni Bernhard had posted her new blog piece: ’12 Tips from 12 Years Sick’. When I first ‘met’ her she was just posting ’10 Tips from 10 Years Sick’, and now I’ve known her as a friend and been helped in very practical (and spiritual) ways by her work, for two years. That’s a pretty happy anniversary, even if our mutual ‘sickness’ anniversaries, which both occur at around the same time (French Open Grand Slam – tennis is one of several shared interests), are not.

Toni Bernhard used to be a law professor at the University of California in Davis. In May 2001, on a trip with her husband to Paris, she fell ill with what she thought was severe flu. She still hasn’t recovered. Her doctors have classed her illness, which prevents this life-loving, hard working ex-professor from spending much of her life outside her bedroom, as Chronic Fatigue Syndrome (M.E. in the UK) – which many people now suspect to be several (or many) discrete illness(es). Toni sometimes wryly refers to it as ‘Parisian Flu’.

I discovered Toni’s work while listening to a recorded talk by Tara Brach, which mentioned a new and remarkable book, ‘How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers’. And it is remarkable: a clear but conversational self-help book, with an autobiographical thread running through it. It’s so helpful and at the same time so personal, that when I read it I feel almost as if she’s talking to me personally. And yet it’s become a bestseller and has helped countless thousands of people like me.

Apart from this rare personal quality, other things that struck me in her writing included a total openness about how it took her years to ‘get it right’ – and how she still struggles with her illness at times, even now. She understands how it feels to hear the remark that every chronically ill person has to endure at times: “But you don’t look sick!” And she believes, and more importantly shows, how it is possible to find joy and equanimity even when our lives have taken a drastic turn, and left us with something painful and lifelong (possibly) that we didn’t ask for. She’s one of the least judgemental people I’ve ever known – a wonderful expression of Buddhist practice in the midst of very difficult circumstances.

I wrote Toni a ‘fan email’, and she responded quickly with just the same caring and friendly tone as I’d found in her book. We then connected on Facebook, which in a way has become an extension of her work, as her page attracted thousands of chronically ill admirers of her book, all seeking a connection with fellow sufferers and wanting to apply the Buddhist-inspired ‘practices’ in ‘How To Be Sick’ to their radically changed lives. Another page, also inspired by Toni’s work, has a much smaller membership and is very important to me personally. All of us in the group are struggling at times, and we all express so much mutual support and caring that it’s a beautiful experience – a kind of model Buddhist ‘sangha’ (spiritual fellowship) for people with chronic health problems. I’ve made some very, very dear friends through Toni’s work, and of course Toni is one of them.

When I first met Toni I wasn’t a Buddhist, although I did try to apply practices such as mindfulness to help cope with pain and anxiety. Now I think I am a Buddhist, albeit a secular one with an attitude towards this ancient ‘faith’ very similar to that in Toni’s book. Whatever her private, personal beliefs, her book doesn’t mention rebirth in a literal sense, for example. It’s a purely practical approach which can be applied to anyone’s life, whether they consider themselves Buddhist or not. Toni has helped me resolve more than one confusion about Buddhist thought, and is one of the people who have helped me to accept that I can try to follow the Buddha’s core teachings without a belief in anything beyond the material universe. I’m very grateful to her for this, too.

So I can safely say that she’s one of the teachers who, in recent years, has helped to change my life. Like her, I find refuge from my difficulties in the music of Mozart and Beethoven, and the love of our partners and pets – we already had those things in common. But I also find it in the friendship and support of people I would never have met without her – giving me the opportunity to give to others with similar struggles in life, and to receive from them too. And now I can also find refuge in the teachings of the Buddha, which Toni has helped to clarify for me, and who (in her words) ‘never claimed to be more than a human being. He found pain just as painful as you and I do. I take this as a reminder that the equanimity and joy we see in the many images of him are within the reach of every one of us’ (from ‘How to Be Sick’).

In September, Toni’s second book, ‘How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow’, will be published. I wish her all possible success with it, all the more so because I can only imagine how hard it must have been to write it while suffering with severe flu that never goes away. And I’m having to apply a little Buddhist equanimity to manage my own craving to read it! Meanwhile, here’s a link to Toni’s latest blog post, for any of my followers who haven’t discovered her regular ‘Psychology Today’ blog. Of her ’12 Tips’, I especially like No 2 (I know I’m in pain, I know I’m disabled, and that’s good enough for me); No 4 – which redefines the concept of work and usefulness to society; and No 7 – after all, where on earth would I and many of my friends be without the internet? Our hidden ‘culture of the sick’, unobserved by most of the rest of the world, has a vital and compassionate life in the world on our computers – and my, do we need it!

12 Tips from 12 Years Sick 

Thank you, Toni, for everything else you’ve shared with so many of us. My chronic illnesses are still difficult to manage, but you are one of my treasured guides on how to live with them easier. There are joys in life which I would never have discovered, if I hadn’t been nine years sick.