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Archive for December, 2014

barometer

You maybe read the story about the Scottish nurse who came back to the UK after nursing Ebola patients in Sierra Leone?

Because she had travelled from West Africa she was “screened” at Heathrow – they checked her temperature. It was normal. She told them she felt fevered and unwell but they said her temperature was normal. She returned to the screening area an hour later because she was concerned that she was unwell and had her temperature checked “by officials” (did they have any medical training?) a further six times, but each time the thermometer said she didn’t have a fever so they sent her on her way to Scotland. She’s now (at time of writing) being treated in hospital for Ebola.

What amazes me, yet sadly doesn’t really surprise me, about this story is – imagine this – a nurse comes to see you, tells you she has just returned from West Africa where she has been nursing patients with Ebola and now she feels unwell. What would you do? Right. You’d listen to her story, hear what she was experiencing (feeling unwell), and hear what she’d been doing recently (travelling in West Africa and treating patients with infections in a hospital). Would you be happy to rely on the reading from a single piece of equipment (a thermometer) to determine what you should do next?

Nope, I wouldn’t.

Who would?

Only someone who had designed a “process” (probably described in a manual somewhere) which said check the temperature. A process that basically says something like if the temperature is normal, OK, say “on you go”. If not normal, do something (I don’t know exactly what the officials are told to do if the thermometer tells them there is a problem….we didn’t get that far in this case)

I was once told by a young doctor they were taught “Don’t listen to the patient, they lie all the time. Only the results tell the truth

You know what? That wasn’t good teaching then, and it isn’t now.

When it comes to the practice of Medicine, you ignore the patient’s story at your peril.

And the same rule applies when designing a health care system.

Health and illness are experiences people have, not readings on equipment.

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In the London Review of Books, Hilary Mantel has written an extremely thought provoking review of Brian Dillon’s “Tormented Hope: Nine Hypochondriac Lives”.

For some of us, the question ‘Am I ill or well?’ is not at all straightforward, but contentious and guilt-ridden. I feel ill, but have I any right to the feeling? I feel ill, but has my feeling any organic basis? I feel ill, but who am I to say so? Someone else must decide (my doctor, my mother) whether the illness is real by other people’s standards, or only by mine. Is it a respectable illness? Does it stand up to scientific scrutiny? Or is it just one of my body’s weasel stratagems, to get attention, to get a rest, to avoid doing something it doesn’t want to do? Some of us perceive our body as fundamentally dishonest, and illness as a scam it has thought up.

 

We understand, almost instinctively, the nuanced difference between disease and illness. As Eric Cassell put it so clearly – “illness is what a man has, and disease is what an organ has”. Or “illness is what you go to the doctor with, and disease is what you come home with”. However, both doctors and patients are caught up in the blurred boundary between these two concepts. For doctors, once a sensation is classified as a symptom, it becomes a signpost to a pathology (or it is dismissed as “psychological”). For all of us, though, we live with the possibility that any sensation might be a symptom. For the hypochondriac, every sensation might be a symptom. As Hilary Mantel says – 

 

In hypochondria, the whole imagination is medicalised; on the one hand, the state is sordid and comic, on the other hand, perfectly comprehensible. It is the dismaying opaqueness of human flesh that drives us to anxiety and despair. What in God’s name is going on in there? Why are our bodies not made with hinged flaps or transparent panels, so that we can have a look? Why must we exist in perpetual uncertainty (only ended by death) as to whether we are well or ill?

Am I well, or am I ill? Who decides?

Brian Dillon consoles us that ‘hypochondriacs are almost always other people.’ The condition exists on a continuum, with fraud at one end, delusion in the middle and medical incompetence at the other end; he is a benefits cheat, you are a hypochondriac, I am as yet undiagnosed.

One issue is symptoms, which are a particular way of classifying sensations. Are some more real, somehow, than others? Do they need accompanying physical changes in the body to be real?  

Many people are simply hyper-aware of bodily sensations, and so are driven continually to check in with themselves, examining visceral events as a man about to confess to a priest examines his conscience; like the believer scrutinising himself for sin, they expect to find something bad, perhaps something mortal. Forgiveness, and cure, are only ever partial and temporary; there will always be another lapse, some internal quaking or queasiness, some torsion or stricture, some lightness in the head or hammering of the pulse, some stiffness in the joint or trembling of the limb, or perhaps even an absence of sensation, a numbness, a deficit, a failure of the appetite.

A researcher called Kurt Kroenke has published many studies where he shows, time and again, that not only is the percentage of people listing symptoms which they have equal whether they are attending medical clinics, or are simply stopped in the street and asked, but the actual symptoms people complain of are the largely the same whether they are attending for health care, or just going about their normal lives. Clearly, not only are sensations not usually symptoms but symptoms do not equal disease.

Bodily, and psychic sensations are part of being alive. But we humans are compelled somehow to try to find the underlying meaning of everything..including sensations. Isn’t this the crux of the issue? Who gives meaning to your daily life, your lived experience, your sensations, thoughts, and feelings?

In the days before internet information and misinformation became available, patients often came away from a consultation with the feeling that they did not own their own bodies, that they were in some way owned by the doctor or the NHS. Now perhaps Google owns our bodies; it is possible to have access, at a keystroke, to a dazing plurality of opinion. There is an illness out there for every need, a disease to fit any symptom. And it is not just individuals who manufacture disease. As drug patents expire, the pharmacological companies invent new illnesses, such as social anxiety disorder, for which an otherwise obsolete formulation can be prescribed. For this ruse to work, the patient must accept a description of himself as sick, not just odd; so shyness, for example, becomes a pathology, not just an inconvenient character trait. We need not be in pain, or produce florid symptoms, to benefit from the new, enveloping, knowledge-based hypochondria. We are all subtly wrong in some way, most of the time: ill at ease in the world. We can stand a bit of readjustment, physical or mental, a bit of fine-tuning. Our lifelong itch for self-improvement can be scratched by a cosmetic surgeon with his scalpel or needle, our feelings of loss assuaged by a pill that will return us to a state of self-possession. For hypochondria, the future is golden.

It’s not just doctors who interpret your sensations now, there are interpretations everywhere, and some of them are deliberately invented for marketing purposes. 

Living involves experiencing sensations, and being human involves sense-making. Trying to understand what is happening now may be an inescapable part of Life. Deciding what meaning fits best is, ultimately, down to the individual – either by simply accepting the interpretation of an other, or by consciously, rationally, working it out in our own terms.

Entangled as they might be, the untangling of sensations is up to us.

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In the second part of the A to Z of Becoming, Z stands for the verb, zoom.

What I suggest you do with this verb, is think of a camera lens – the kind that zooms – it can zoom in, and it can zoom out.

A few years back I climbed the hill to the Inari Shrine just outside of Kyoto. I took photos (of course) and what follows here is the sequence, starting at the entrance gate, then looking back towards the gate, and beyond to Kyoto, as I climb the hill. See if you can pick out the entrance gate in all the photos.

inari

inari and kyoto

inari and kyoto

inari and kyoto

Imagine now, that you are standing on top of this hill, and you zoom in on the gate you passed through at the start of the climb. You can either do that using a camera lens, or you can do it using your memory or imagination.

As you zoom in, and zoom back out, the context changes. You see what you saw before but in a different, broader, or narrower, setting.

That’s what zooming does for us. It allows us not to get stuck on one single viewpoint, but to see whatever we are looking at in a number of different contexts.

You can do the same with time.

You can stand here, at this point in the year, today, this very day, and zoom out to remember or imagine this day in the context of this week, of this month, of this year, of this life even. Then zoom back in again, to focus on the present.

Can you do that to see forward as well as back?

Fushimi Inari Shrine

You can, if you use your imagination…..

By the way, the shrine has many passageways like this one –Fushimi Inari Shrine Torii Gates

and this one –

Fushimi Inari Shrine Torii Gates

– where you can’t zoom very far forwards, or backwards, you can only see as far at the next curve, and as far back as the last one – keeps you focused on the here and now! It’s good to focus on the here and now, but a bit of zooming can broaden or deepen your awareness.

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silver lining

Have you ever looked up at a cloud and wondered about just where its edges are?

You’ll be familiar with the idea that every cloud has a silver lining….like the one I’ve photographed here. When we talk about that we have this kind of image in our minds, an image of a grey cloud with a bright white silver edge.

But where exactly is the edge of a cloud?

If a cloud is droplets of water, where do those droplets become so numerous that they constitute a cloud? Watch any cloud for a moment and you’ll see the edge slowly, but constantly, changing. The cloud literally changes its shape before your eyes.

I find that fascinating. And it can be a nice contemplation or meditation too.

Either to keep your attention on the cloud, observing the changes at its edges, bringing your mind gently back to the cloud every time it drifts off into some other thoughts.

Or think of a cloud as a model to consider other “objects” in the world – yourself for example. Where are your edges, and how are they changing?

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two trees

The first thing to catch my eye was the light…..the colour, the deep, vibrant red of the setting sun. I picked up my camera and stepped out into the garden.

As I framed the shot the silhouette of the tree drew me to it, the contrast of the black in front of the red, the spindly shapes of the bare branches over the soft, flowing bands of clouds.

Then as I looked the second tree came into my field of attention, its shape, and its soft haziness. It looked to me like it had elements of the clouds behind it and the tree in the foreground, but melded both into something unique in itself – less spiky than the foreground tree, and less black too, but more angular and edgy than the clouds and blacker than them.

Looks good.

Click!

Not a typical sunset photo. Not a typical tree photo either. It draws me in…..

What goes through your mind in those moments leading up to “click!”?

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I read a lot about complexity, and especially about complex adaptive systems, because it’s the most useful conceptual model I’ve found so far when I’m considering real life issues like health, illness, economics, personal growth (and so on!). An article entitled “Occupational Science and Social Complexity” by Aaron M. Eakman recently reviewed this model in the context of occupational science, and I thought I’d share a couple of the sections with you because he nicely clarifies some key points.

In the article there is a good summary of “characteristics [which] are common to complex systems”. He describes seven of them, and I’ve put in bold what I consider to be amongst the most important points to take on board –

1) Relationships between components of the system are non-linear,
meaning that a small perturbation may lead to dramatically large effects. By contrast, in linear systems the effect is always directly proportional to a cause.

2) Local rules affecting the relationships between components of the system lead to the emergence of global system order;

3) Both negative (damping) and positive (amplifying) feedback are often found in complex systems. The effects of an element’s behavior or the emergent behavior of the system are fed back in such a way that the element itself is altered.

4) Complex systems are usually open systems; they exchange some form of energy or information with their environment.

5) Complex systems are historical systems that change over time, and prior states may have an influence on present states.

6) The components of a complex system may themselves be complex systems. For example, an economy is made up of organizations, which are made up of people – all of which are complex systems.

7) Complex systems may exhibit behaviors that are emergent; they may have properties that can only be studied at a higher system level.

Think what these characteristics mean when you are considering a human being, an organisation, or a society. What are seeing are organisms or organisations which are undergoing constant, unpredictable change. You can guess how things are going to go, based on prior knowledge and experience of other situations which you judge to be similar, but you’re going to have to be constant alert to the fact that things are very likely to go some other way entirely, and you’ll need to adjust your choices accordingly.

In fact living creatures, particularly multi-cellular ones, like human beings can be thought of as a particular kind of complex system – a “CAS” (Complex Adaptive System).

Complex adaptive systems are special cases of complex systems which are adaptive in that they have the capacity to change and learn from experience. John Holland describes a complex adaptive system as a dynamic network of many agents (which may represent cells, species, individuals, firms, nations) acting in parallel, constantly acting and reacting to what the other agents are doing. The control of a complex adaptive system tends to be highly dispersed and decentralized. If there is to be any coherent behavior in the system, it has to arise from competition and cooperation among the agents themselves.

In other words, we don’t just constantly change, frequently in unpredictable ways, but we adapt – our changes are not entirely random, they are informed – informed by prior knowledge and experience and informed by constant feedback in the here and now.

That last point about coherent behaviour arising from “competition and cooperation” is a challening one. There are a lot of people who think that competition is THE key in understanding life and evolution. There are others who say, no, it’s cooperation which is the key. It seems the reality is, it’s both.

Complexity science eschews reductionism and determinism by focusing on the emergent properties of a system and the non-linear interactions of a system’s components. Complexity science recognizes that such systems cannot be understood simply by understanding the parts – the interactions among the parts and the consequences of these interactions are equally significant.

Modern Medicine is still stuck in the reductionist and deterministic paradigms. And the problem is they just do NOT reflect reality. We don’t just need the science which shows us how particular cells or organs work. We need the science which shows how what happens when active agents begin to compete and co-operate. We need to discover just how a complex system adapts, repairs, heals and evolves. The old idea of “fixing” the “wonky bits” only works (and only for a limited time) where the scenario conforms to reductionist and deterministic paradigms (in Acute Care for example)

One more thought provoking point from this article –

Finally, Byrne (1998) has asserted that as a basis for social action: Complexity/chaos offers the possibility of an engaged science not founded in pride, in the assertion of an absolute knowledge as the basis for social programmes, but rather in a humility about the complexity of the world coupled with a hopeful belief in the potential of human beings for doing something about it.

Byrne, D. (1998). Complexity theory and the social sciences. New York: Routledge.

I couldn’t agree more.

Humilty

and

Hope

Let’s proceed on that basis.

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Yesterday was the shortest day of the year in the Northern hemisphere, so I popped out to the garden and captured the last of the light after the sun sank below the horizon.

last light of the shortest day

I noticed that there was a plane way above me, heading north, so took another shot to include that too.

flying into the night

Look carefully, it’s just above and to the right of the tree at the far left of the frame.

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