On Loss & Chronic Illness - Acceptance

[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]

I managed to do the audio for this but it's not brilliant:

As I've mentioned in previous posts, the Kubler-Ross stages of grief are not about a fixed and inevitable sequence. They are merely common experiences which are likely to happen in this approximate order following loss. However, with chronic illness as with other dramatic and complicated losses, we are very likely to revisit earlier stages.

This is the bad news about acceptance; the first time we feel that we've accepted our loss is undoubtedly a breakthrough, but this is very unlikely to be something that happens once and forever. This is partly why I've been writing about loss and chronic illness a full twenty years since I first got sick. I have absolutely come to terms with what happened back then. I sometimes have to come to terms with what is happening now.

Our dominant triumph over adversity narrative means that those stories about chronic illness which aren't about the search for a cure or heroically raising Awareness are usually about spectacular reinvention: Chronic illness ended my career as a stock-broker but now I'm building a million pound empire by hand-knitting mushroom-warmers.

Reinvention is inevitable but the creation of a new life which somehow mitigates all the problems associated with chronic illness is unlikely. It's a very rare chronic illness which doesn't fluctuate over time. Some are very likely to deteriorate. Some have a good chance of improving to some extent, which is not a straight-forward prospect either. Life circumstances can and probably will change in a way that draws loss back into focus.

It may be you find peace, comfort and creative fulfilment in spending your days hand-knitting mushroom-warmers. But this could happen without making a penny and there's no realistic prospect of replacing a stock-broker's income. It won't get you out of the house or provide the interactions or social standing associated with your previous work. Plus, despite the relative low pressure, knitting good-quality items and selling such knitted items is neither effortless, stress-free nor unaffected by fallow periods.

By definition, chronic illness can't be fixed. But having come to terms with that, it is vitally important to recognise that the life-changing effects of chronic illness cannot be magicked away either. My previous posts have been about how our disablist culture makes it so much more difficult to move through stages of grief when we become chronically ill. This post is about making sure we don't replace all that with some other equally futile struggle imposed by a culture that doesn't want us to let go of this particular kind of loss.

For the first ten or so years of my illness, my energy was focussed on a sequence of rather unhelpful questions:

How can I regain my health?

If I can't regain my health, how can I complete my formal education?

If I can't complete my education, how can I make money when I'm too sick to work?

If I can't make money, how can I stop other people thinking I'm a waste of space?

Ultimately, for me, the answer was the same in every case. At 35, I am in worse health than in my late teens, I have just 3 GCSEs to my name and I've been dependent on benefits my whole adult life. Various adventures in higher education came to nothing. I am occasionally paid for my work but could never do enough to regularly supplement my income, let alone replace the state benefits I receive. We live in a culture where a successful person is generally understood to be someone with a well-paid fulfilling job. By that measure, I am a complete and utter failure.

Of course, I am not and nearly nobody thinks I am. But we do need to talk about status.

Small children are told not to compare themselves with others, but then schools, advertising and often even their parents will ask them to do just that. This only increases as we get older, as we are sold the political myth of meritocracy; the idea that how rich, successful, beautiful and healthy people are is a reflection of their virtues and personal efforts. Or perhaps worse; the idea that this should be the case and if we're not as rich, successful, beautiful and healthy as we deserve to be, then something has gone drastically wrong – either with ourselves or with other people.

People with chronic illnesses don't live apart from our status-anxious society, and circumstances – isolation, frustration, time on our hands – can make status-anxiety even worse than for folks who are busy getting on with other things. The whole game is rigged, but we have even less opportunity than most to even take a punt.

Even folk who are able to work with chronic illness are acutely aware of the scrounger rhetoric which might be applied to anyone who is not functioning at a hundred percent. We hear about the “hard working families” for whom politicians claim to speak (so not us?), as well as receiving the steady drip of advertising and aspirational TV where the most valuable people are wealthy healthy consumers. Even cultural advice around health is status-based; there's a reason New Age magazines promote total silence (bad news for most human brains) as necessary for “true rest”, why newspapers focus on exotically-grown produce your gran never heard of as health-giving foods, when all their nutrients can be found in cheap local veg and cereals. Health is about status too and there's cultural capital to be gained in looking after yourself expensively and elaborately.

Added to this are the dominant stories of tragedy and triumph over adversity which are told about people like us, the supercrip image of every disabled person we see on TV who is neither a villain nor an object of pity. They are geniuses with mental illness, they are blind pilots, they are wheelchair-users who climb mountains. It's bad enough that we can't possibly keep up with our peers, can't work as much as them, can't earn as much, can't do as much in any regard and have far more limited choices around family and relationships. If we start comparing ourselves to the most visible disabled people within our culture, we're in even more trouble.

Of course, we rarely talk about this stuff explicitly; we don't acknowledge the race, so it's hard to come to terms when you have well and truly fallen out of it.

I've not entirely sorted myself out with status. Working makes me feel good. But interruptions to that are frustrating to me not only because I can't do the thing I find uniquely enjoyable and fulfilling. Nor is it even the lack of feedback, which matters too – few people write only for the page. The less I write, the less I feel like a writer. The less paid work I do (which isn't much at the best of times), the less I feel like a writer. The more slowly I move towards getting a novel published, the less I feel like a writer. And of course my identity shouldn't hinge on being any one thing, but there's part of me that feels that if I am not a writer, I am not anything; I am without value. Which is nonsense and I know it.

I know other people who are able to do even less of the things they are passionate about, or people whose health is much better than mine who lack such a central focus. I don't for a moment think less of them; I know I'm extremely lucky that writing was always there. But this is the nature of status-anxiety; we anticipate judgement in situations where we'd never pass any ourselves. Just the other day, my Mum explained her nervousness about a couple of upcoming social events, in terms of her being “just a school secretary”. She explained that being in her sixties and still working for the kind of pay that a school secretary receives suggests someone who lacks the ambition, drive and intelligence to get further and do something more impressive.

So I said, “If you imagine other people think that about you, what do you imagine people think about me?”

And of course, she didn't imagine anyone would turn their nose up at me or any of her friends or family members who are out of work, or who work as cleaners or in supermarkets; she would be positively outraged at the suggestion that any of us were in these positions because we lacked ambition, drive or intelligence. We apply a different standard to ourselves, but every time we vocalise this unexamined, we risk raising the unrealistic standards of those around us.

One of the biggest problems is that disabled people are conditioned to explain ourselves to others in much the same way we would explain ourselves to doctors or the DWP; there's a reason why we answer rude questions when others would not. I have heard friends explain their conditions and their work/benefit status to strangers in all kinds of circumstances where people didn't need to know about either.

Of course, people respond to the information they're given. If you tell someone you're a jet pilot, they will talk to you about planes and travel. If you tell someone you have Lupus and haven't worked for five years, they will come up with an anecdote about an uncle who had Lyme Disease (it begins with L, after all), a deeply personal question about your condition and a suggestion for work they imagine you might be able to do because it doesn't involve a lot of standing up.

This is bound to make you feel fairly crap about yourself, and reinforces the idea that you are set apart from other people, from some mythical normal world of health and success.

I imagine this is made even more difficult for firmly middle class sick people who don't meet any of the millions of working people who readily avoid talking about their jobs because they're either boring or unpleasant (some wealthier people have rubbish jobs, but they're handsomely paid and respected for the tedium). For perhaps the majority of working people, even when it's reasonably enjoyable and fulfilling, work doesn't reflect who a person is, but merely what they do on weekdays to pay the bills.

It is not that people with chronic illness should be ashamed of anything – our health, our work status or anything else - but there's much to be gained from presenting ourselves as who we really are, what we really do, rather than starting all interactions with the excuse we have for not being like other people.

There's one of those inspiration porn memes which features an amputee child running on a race track with the slogan, “What's your excuse?”

And of course it's silly and offensive in ways that don't need to be covered here, but there's a tiny part of me which responds, “I have an excuse. Do I need to let anyone know about that?”

Some people feel they do. As mentioned in my Sadness post, I have come across folks who perform the role cast to them as unfortunate ill person, motivated in part by the mistaken belief that the bullying and skepticism disabled people face is due to ignorance, and enough information can put everything right. I'm not talking about folk who merely discuss their health or even complain about it a lot, but the chronic illness equivalent of those women who perform motherhood – not just talking about or referring to the experience, but placing every topic of conversation within that context, vocalising the most mundane aspects of it, demonstrating how they're doing the right thing (often elaborately and expensively) at all times. Either involves a lot of generalisation; motherhood feels like this, life with chronic illness feels like that. And while the performance of motherhood tends to exude positivity – it's the toughest job in the world but the most rewarding! – the performance of chronic illness is about suffering; it's just the toughest damn job in the world.

It is an ongoing sick note to the world and of course, that answers the issue of status: I would be doing amazing things if I was not ill, but instead I'm doing an amazing job of being ill, fighting it and documenting it to inspire and inform others. And this can be really difficult for the rest of us to be around.

It contributes to a culture where disabled people are defined by our impairments and non-disabled people believe they have a right to expect a moving and detailed account of our lives and suffering – non-disabled people get to keep the power. Bullies get to keep on bullying.

Yet beyond this, even though I am acutely conscious of these politics, when I meet with such performances, I find myself doubting my own perspective on illness. I've always managed to be reasonably upbeat but at this point in my life, I find myself particularly blessed; I am married to Stephen, I have some great friends, my family relationships are the best they've ever been, I love my home which has a garden and the garden has hedgehogs living in it. I have some big health-related frustrations impact on my work – especially this year – and upsets and worries occur from time to time, but otherwise, I'm really enjoying my life.

Stephen has always enjoyed the Eurovision Song Contest and because I'm so cool, the first time I watched it with him, I kept thinking, “I can't be enjoying it this much. Not really. There is nothing cool about this. Maybe I am only enjoying it ironically?”

And in the same way, when confronted by people whose mission it is to let the world know, in all their interactions, how an illness like the one I have has ruined their lives, there's a part of me that thinks, “Maybe I'm kidding myself? Maybe it is impossible to be as content as I think I am?” After all, these folks have much of our culture on their side; we're not supposed to be happy.

But louder than that, there's a part of me which thinks, “Maybe other people think badly of me, because I don't do this stuff. Maybe when I'm not around for a while, people just think I don't care about them, that I'm busy with other things. Maybe people look at how little I achieve and assume I'm just lazy. Maybe people think I'm a scrounger. Maybe people think I don't look after myself properly because I don't detail all the boring ways I look after myself.”

And of course, this is why people do this stuff in the first place; this performance of illness is, to some extent, what our culture expects of us. If I was a character in a book or a film, the first thing you'd know about me was my medical history; my character or people close to me would discuss it at length. You would see me gritting my teeth in pain, taking medicine, lying about looking unwell and so forth. You would see this because my character would be all about pathos; my illness would function as a reason to feel sorry for me and for those who care for me.

In the face of oppressions, big and small, some folk imagine that sympathy will hold back the dogs. In reality, there's no way round the fact that some people will pass judgement on me given the society I live in. It's very rare these days that anyone expresses anger towards me, but when they do, they always manage some snide remark about my health or the way I manage it. No amount of information is ever going to shut that down.

Avoiding these kinds of people and this kind of thinking is as essential to acceptance as avoiding folks who constantly talk about how fat and hideous they are and what diets they're on when you're trying to feel okay about the size of your bum.

The question I should have asked much sooner than I did was

How can I live the best possible life I can within what limitations I have?

Which sounds obvious and easy enough, but is in fact a tremendously complex question. It demands we look at what our actual limits are - and not in a pseudo-existentialist, the only limits are the ones we impose upon ourselves kind of way. Our health is not only a limitation, but most likely a changing limitation. We all need some money so we need to source this, whether through a new way of working, wrestling the benefits system, relying on a working partner or finding some kindly eccentric benefactor. We need food, clean clothes and to live in a reasonably sanitary environment, so we need some way of making sure that happens. If we are a parent or a carer, we need to make sure that parenting or caring carries on. All these limitations are real, often quite messy and prone to change even when our health doesn't.

And then there's the matter of what is best. If there's any left after we have secured our basic maintenance, what should we spend our time and energy on? The thing that's most fun, the thing that's most fulfilling, the thing that's most useful to the world or the thing which makes us most comfortable materially?

Of course, these are not chronic illness questions, but being alive questions. Everyone has limitations. Everyone. Some people undoubtedly have much easier lives than you or I, but very many people who don't have chronic illness nevertheless face a lot of limitations and complexities on their particular journeys through life.

There's a tendency for people with chronic illness to feel set apart from some mythical well world where everything is straight-forward and I understand that – I have had conversations with friends and family where it's taken me less time to say what I've been up to in a month than they take to report on a single day.

However, acceptance means moving on from the sense that our little piece of the world has stopped turning while everything else carries on like nothing's happened, that sense that separates us from those with different experiences. In the same way, when we finally come to terms with a death, the imposing sense of that empty chair eases; the chair remains empty, but it no longer dominates the room.

Again, this is complicated by the fact that acceptance isn't a happy ending we arrive at just once – with chronic illness, we are likely to experience loss again, our world will once again stall on its rotation. But having reached acceptance already, it gets easier to ride out our inclination toward denial, anger, bargaining and sadness and get it turning once again.

On Loss & Chronic Illness - Sadness

Content Note: Discussion of depression, mention of suicidal thoughts.
Mr Goldfish has provided audio for this post:


My general plan in writing these blog posts was that I would conclude with Acceptance on 26th August, the 20th anniversary of my becoming ill. I suppose it is fitting that the last several months have been pretty rough and things didn't go according to plan. 

The forth stage in the Kubler-Ross model of grief is usually described as depression, but I'm going to talk about sadness. Depression and extreme sadness are different but despite many attempts to draw one, there's no magical dividing line between the two. Both can cause physical pain and profound exhaustion, both can damage one's physical health, quite apart from the ways they effect behaviour. Either one can lead into the other.

However, in general:

• Depression may feature a great mix of negative emotions including extreme sadness but also raging anger, prolonged anxiety, panic or profound numbness. Extreme sadness is more often mixed with more positive emotions, like nostalgia, gratitude and love - sadness can be bittersweet, depression not so much.

• Depressive reasoning tends to lead to more extreme, pessimistic and strongly-held conclusions. A non-depressed sad person may feel despair that life has irrevocably changed, and wonder how on Earth they will be able to cope. A depressed person may feel certain that life is and will remain unbearable and they will not be able to cope.

• Depression is more likely to be unrelenting. A common experience when someone first realises they're depressed is that they're in a situation where they would usually expect to feel much better - in the company of good friends, doing something they love etc., and they still feel completely flat or on the verge of tears. Sad people inevitably feel out of place in situations where others are happy and celebrating, but it may be more possible to temporarily lift one's spirits. In the same way, a sad person may feel that others understand and support them, while a depressed person may feel very extremely alone - feeling either like a burden to their loved ones, or suspicious that others don't truly know or like them.

Although it is impossible to draw a neat line, it is important to consider the differences; sadness can be horrible but depression can be dangerous. Because the lives of people with chronic illness - whether physical, mental or a bit of both - are often difficult, it is easy for both us and other people to mistake depressive symptoms as a normal response to our primary condition or even part of that illness. A bit of a tangent, but an important point.

The Kubler-Ross model is an imperfect model of what happens to everyone coming to terms with loss. Some people skip stages, or experience these stages in a different order and of course, some losses, like those experienced during chronic illness, are ongoing - we sometimes return to stages of denial, anger or bargaining when the loss deepens or we're somehow reminded of loss we thought we'd gotten over.

Sadness is the black hole that the psyche holds out against if at all possible. Whether consciously or not, we tend to go to considerable lengths to avoid the sadness. Unlike the stages before it, sadness gives you nothing to do; denial, anger and bargaining each push a person towards some kind of strategy, whether carrying on as if nothing has happened, raging against the situation or negotiating a reprieve. Sadness acknowledges the finality of loss - even if an illness might improve, there's a certain kind of life which will never now be lived. Sadness is hopelessness and helplessness and as I've mentioned before, the mind will perform all kinds of scary tricks rather that to consider itself helpless. To return briefly to my tangent about depression, I have experienced depression on two occasions and to be honest, neither of these were very heavy on sadness; I was scared and angry (mostly at myself). I was scared of feeling the sadness I could see coming and that fear made me want to die.

However, eventually, sadness is an almost inevitable feature of loss. It is deeply unpleasant, of course, but it is natural and often necessary. While we live in a culture which will, at least sometimes, tell you that anger is useful (and it sometimes is), it is rare to hear that sadness is sometimes absolutely vital in order to cope with loss. We expect people to be sad, of course, but we expect that to happen in an orderly culturally-appropriate manner - bereaved people can find themselves subject to disapproval for grieving either too long or not long enough (or, as is perhaps most common, fluctuating in their grief over time).

Meanwhile, the saying goes that you don't know what you've lost 'til it's gone - that's never been my experience. My experience is that you don't necessarily know what you've got until you acknowledge what other things are gone - that other possibilities that have fallen away. For me, sadness has been the great stock-taking; it shows you both what you've lost and everything you have left.

Whenever I have lost loved ones, I am reminded of how generally very lucky I've been with the people in my life, how lucky I am with those still living, and all the gifts my loved ones give me. Every time I grieve for my health – or the slightly better health I was enjoying a short while ago – I become only more acutely aware of the people and things that make life pleasurable even when I'm stuck in bed all day and asleep for most of it.

This was not always the case, because for many years, I tried to avoid this sadness. If I ever cried about my health, I would cry in fear and guilt; I blamed myself and felt that if things carried on in this direction, I wouldn't be able cope and I would be an even greater burden on the rest of the world. Part of this was because I believed I was useless and worse health always meant a greater degree of uselessness. In my first marriage, my worst health meant an escalation of abuse. But part of this was because I never allowed myself to actually think about what I had lost within that panicked grappling around for answers.

I've been especially conscious of this during the last several months when I have been having a long crappy patch. I'm having to give up my editing work at The F Word. I've achieved very little work of any kind. Small fun projects and social engagements have fallen away. A painless complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot of energy to get checked out and put me in something of a morbid state of mind for a few days here and there. I got sad.

However, when September arrived and I began to think about the autumn, I was looking forward to the months ahead. And to be honest, for most of the time I've been ill, I would have been in a complete panic. I would be thinking about the theatre tickets I have for the middle of October* and despairing that I might not be able to go, and it will be a huge waste of money and a grave disappointment to myself and other people. I would probably, even this early, start to worry about Christmas – whether I could be better by then, or whether my ill health would mess things up for other people. I would be panicking about the last four months of the year and how little I had achieved this year so far, and how another year would pass without meeting X, Y or Z objective.

And of course my life is much better now than it has ever been, so there are lots of reasons why I can entertain the idea that I may spend a big chunk of the next few months in bed without feeling desperate. But part of it is that I let myself get sad. I never used to do that. I have let myself cry over things I have had to give up. I have let myself cry over the uncertainty. Then I've thought about those things in my life more reliable than my health and felt extremely grateful.

This is not a “So really bad things are good things in disguise” argument; there are obvious tangible ways my life would improve if my health did (and if nobody I cared about ever suffered or died – is this so much to ask?). All I'm saying is that the things that help us cope with sadness are not present until that sadness is felt. I have perhaps been lucky in my life not to be struck with any spectacular tragedy, but in my experience, fear and guilt are a lot more difficult to negotiate than sadness.

I'm getting repetitive with sentiments along the lines of "our culture is pretty messed up about this emotion" - and of course, in a way, this is inevitable. Simplifying the breadth of human experience into particular and thus limiting narratives is kind of what culture does.

Modern philosophies are particularly bad with sadness. There's a whole world of books and seminars dedicated to positive thinking which involves eliminating negative thoughts - or even a bodged-up version of Buddhism which places the responsibility for all unhappy feelings at the feet of those who feel them. Even some versions of Christianity - historically sometimes too accepting of sadness and suffering - now demand that followers face every negative event with a smile because it's all God's plan and those who lament their experiences somehow lack faith.

Disabled people find ourselves in a double bind with this sort of thing. We are expected to be sad people, perhaps especially people with chronic illness who have lost a non-disabled life and who have debilitating and sometimes demoralising symptoms. Many disabled people actively resist that; to be sad is to give in to the problem – to give in to the stereotype. Many many disabled people are encouraged instead to stay in earlier stages of the grieving process; to stay in denial and pretend that things will improve at any moment, to dedicate one's time and energy to regimes and therapies which promise to bring about recovery, to not “give up”, to get angry and stay angry in order to “battle” illness. In other words, we are pressured to live up to another stereotype.

Stigma is also a problem. Some people with physical chronic illness who've been through dismissal and misdiagnosis live in fear of being perceived as even slightly depressed. And many politicised disabled people don't want to be seen as being sad about things they know to be morally neutral facts of their experience - facts for which are automatically met with pity and unwanted sympathy from strangers. It can feel like being sad – or certainly expressing sadness - about our impairments is somehow letting the side down.

On the other hand, sadness is often portrayed as a romantic or heroic characteristic, something which leads a brooding genius to stare out the window, a single tear staining his cheek. We're pretty uncomfortable about depression as a chronic messy illness, but there is a significant element of our culture which regards sad people as deeper thinkers, more sensitive and empathetic - so long as we don't see them crying in public or wandering the streets in dirty clothes.

And often, people with some kinds of chronic illness feel obliged to, to some extent, perform their role as an unfortunate ill person. Not necessarily for sympathy (although perhaps sometimes, for a good cause – you never see anyone raising Awareness in newspapers and magazines with a smile on their face). But more often, I think this performance is simply for peace – fed up of hearing that they don't look or seem sick, or of newspaper stories about benefit fraud whose headlines amount to Disabled person seen having a good time, there's a temptation to show the world that you're suffering.

I know some people are really afraid of their lives looking too good; too comfortable, too happy. And this is also about our unequal society in a more general way; marginalised people of all stripes who seem to be having a good life are those who most offend bigots – as Chimamanda Ngozi Adichie says, "There are people who dislike you because you do not dislike yourself.”

Happy disabled people are, after all, the least deserving of pity and for some people, our only purpose is as objects of pity to make non-disabled folk feel good about themselves. Unhappy disabled people are far less provocative (at least if their unhappiness is relatively quiet and passive).

All this risks undermining authentic psychological reactions to the losses we experience through chronic illness. We are stuck between a tragic rock and a plucky hard place.

It's not that we shouldn't feel sad (or angry, grateful, defiant, whatever) – but that we should give ourselves emotional space to feel whatever we happen to feel. We should reject both tragedy and the triumph over it as personal narratives.

Because I feel sadness is largely something we must ride out rather than something we need to work through, here are some tips for managing sadness - not for curing it, or moving on from it, but managing sadness rather as you might care for a physical wound:

Attend to your physical comfort.

Make sure your diet is as pleasant and nutritious as possible, that you are keeping warm (or adequately cool during those few days of the year when it's a bit too hot), are wearing attractive comfortable clothes and are spending your time in as comfortable a position as you can manage. If possible, work out some appropriate physical exercise and keep to it. When possible, get a little sunshine and fresh air. Don't fight the temptation to sleep unless you have a good reason to. If you have one available, have an attractive person rub lotion into your back.

It's really amazing how much physical comfort effects mood; I remember my mood once transforming after I changed my socks when one had a hole in it - I hadn't really noticed the hole, but the world seemed considerably more bearable in its absence (if you donate items to homeless people or refugees, priorities good strong socks).

Do not try to avoid negative thoughts or universal sadness triggers.

You can't avoid negative thoughts. You can promote positive ones. You can talk about your negative thoughts and get a better perspective on them. Just writing down your negative thoughts can help you begin to sort them out. However, even when negative thoughts are irrational and unhelpful (which, you know, they aren't always), they can't simply be willed away, or drowned out with loud cheerful music.

Folk sensibly attempt to control their exposure to material which upsets them, but this is only possible for fairly specific material - like avoiding graphic depictions of a particular kind of violence or checking whether thedog dies. Trying to avoid things – thoughts, stories, conversations, news etc. - which are sad is not only a futile and miserable exercise, but also a recipe for anxiety. Even if you're not feeling sad or reading about something sad, something may come up at any moment to change that. So you're left feeling on guard and unable to fully engage in anything new or potentially interesting.

I find it helpful to consider passive activity like the music playlists I put together. A good all-round playlist has a combination of fast and slow tracks, upbeat and sadder songs. If you're reading, watching TV or whatever, then sad content will come up even in comedies and children's shows (especially children's movies - goodness me!), and that's okay so long as it's part of a mix. Material which is interesting, where you're learning stuff, or which allows you to have a conversation with other people (now or later) is also very good.

Express your sadness.

When someone you love died last month or even five years ago today, it is entirely socially acceptable (if not always easy) to talk about your sadness. With chronic illness, when sadness effects us can be fairly random – or at least random to other people who don't see whatever events have triggered the spell. However, I strongly recommend trying to tell someone, just so this thing can be heard and acknowledged. Failing talking to a friend, write about it, compose a song, draw a sad picture to get it down in some form. It is when sadness is not expressed that it is most likely to fester and mutate into something else; something bigger and messier. Not just a fresh depression, which is a risk, but also common or garden bitterness and resentment.

Look forward to small events which will happen.

It's probably an instinctive habit for people with chronic illness to look forward to the next meal, the next episode of a television programme or the next chapter of a book, but it is sometimes necessary to do this consciously. When you feel sad about the way your life is, it can feel pathetic to get excited about the small stuff, but the small stuff really is amazing. We live in an amazing world. That's not a reason not to be sad - terrible things happen in this amazing world of ours - but it is a reason to value all the joy we have available to us today. The sun will rise in the morning and the flowers will bloom in the spring. If possible, plant some bulbs.

Keep a record of your gratitude and pride.

This is hard but helps me a lot when I'm struggling at all. Get a notebook or allocate a text file and towards the end of each day, write down something you're grateful for and something you're proud of. It doesn't have to be anything amazing - you might be grateful for having a nice warm pair of socks and proud that you wrote out a birthday card. If you have more things to feel grateful for or proud of, write them all down. This does not cure sadness or any other negative emotion, but it allows you to focus, regularly, on good things you have in your life and good things you have in yourself.

* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray! 

On Loss & Chronic Illness - Denial

Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.

I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:


For the first two years I was sick, I wasn't in denial so much as ignorant then optimistic. My health was up and down, so I assumed that very soon, things would pick up, and up and up and up. All the strategies I was given were about resisting my illness. Do as much as you can. Keep going. Have a go, even when it hurts. Stay positive.

By the third year, it had gone on too long. The idea that I would not be going to university at the same time as my peers was unthinkable. It wasn't that my academic career had ever been central to my identity before then, but all my other identities had dropped away. My greatest passion - acting - was now impossible. My role in all friendships and within the family had greatly diminished. I couldn't sing more than a few lines. I couldn't make art. I couldn't write stories. I was struggling even to read.

All I had left – and what my parents were most worried about, the one thing, apart from my health, that others asked me about – were my studies. I didn't have anyone breathing down my neck on this, but I felt an immense pressure. If I stayed sick, I was going to let everyone down.

Here are some ridiculous things I did in that third year:

• I went from studying a single GCSE to trying to cram two A-Levels into one year. If you're not familiar with the English and Welsh education system, that's increasing my workload by about five times, without any improvement in health.

• I began to write the story of how I got better. In the past tense. When writing anything was a tremendous effort. Which is why I only used up the first few pages of the lovely new notebook I'd chosen to write in. Such a waste!

• Most ridiculously, I asked my parents for a new bicycle for my eighteenth birthday. Before I was ill, I used to cycle all over the place. I'd had a few bikes before, but never a new one and I had absolutely never bought or asked for anything which I didn't then use. Thus I reasoned, my capacity to balance on a bicycle seat and peddle with my malfunctioning legs would just have to improve accordingly.

All this may sound daft, but I want you to imagine this in a bad movie. A sick girl who has significant trouble walking buys a bicycle because she's determined she'll recover to a point where she can cycle again. She begins to write the story of how it's going to happen. She takes on all the work she needs to get her into university (Cambridge said they'd consider me with just two A-Levels, given the circumstances).

She has to get better. She deserves to! She has hope in the face of dwindling odds. This girl isn't a fool – she's a hero. The final scene of the movie has her either peddling off into the sunset or with a shot of the pristine unused bicycle, propped up against her gravestone.

I didn't die, though my health got much worse and I entered a darker, uglier level of self-doubt. Maybe I was kidding myself about trying so hard, when really I wasn't? Maybe on some unconscious level I wanted to be ill? Maybe I didn't want to be ill but a part of me was making myself ill just to spite myself and cause distress to everyone around me? By this point, I was cutting myself and stockpiling meds. Soon after, I got together with my first husband, who hurt me even more.

.......

On the 26^th August this year, I will have been ill for twenty years. I'm not upset about that, but I've been thinking about it and want to write something about loss and chronic illness. I want to use the Kubler-Ross model of coming to terms with loss which, though imperfect, covers all the bases; the process of denial, anger, bargaining, sadness and acceptance.

Denial is a psychological defense against very difficult facts, but it's almost impossible to sustain on your own. Usually, when a loved one dies, it can take a few weeks at least to fully comprehend the fact - it's healthy the pain doesn't come at once. But sometimes, someone is informed of a death and simply refuses to believe it. This usually lasts moments, or minutes and occasionally a few hours. Then it shifts, because however gently they are treated, everyone around them is contradicting their belief. Abuse victims can remain in denial about the nature of their relationships for years, because there's either no opposition – other people smile and nod when they say everything is fine – or that opposition is discredited by the abuser.

Meanwhile – and this will be a recurring theme as I write about loss – with chronic illness, you can't just come to terms with these facts in one dose, even it is spread out over months. There will be other losses, relapses and complications, - even remissions that stabilise far below the point you hoped for. There may be points where you realise you have to drop some work you're doing, studies or hobbies, a point you realise you can't have the family you'd like or can't play your preferred role within your family. You'll miss events - weddings, parties, Christenings etc. - which will never happen again. You may lose friends, when your  illness gets boring. There are all kinds of ways which you won't get to be the person you wanted to be - not because you chose to be someone else, but because of illness.

Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier. I wasn't devastated by the death of my maternal grandmother last year, but the fact I was too sick to attend her funeral sent me into a couple of months of emotional disorientation.

Fortunately, you don't have to mourn for the whole thing at every set-back, but loss is dark pool which settles for a while, only to be disturbed again; sometimes a mere ripple, sometimes a splash.

After that terrible third year, I never again counted so completely on my health improving, but there would be other times I overestimated my (usually deterioating) health and stamina when I really should have known better, times when I worked on the basis that my good days would be my normal days from now on This would always coincide with desperation, self-doubt and external pressure.

.........

As soon as I started to think about writing about chronic illness and the Kubler-Ross model, I noticed how our culture discourages people with chronic illness from getting to that final phase of acceptance. Our culture actively encourages denial (as well as anger, sadness and bargaining especially). As I say, it's almost impossible to maintain denial on your own.

I generally enjoy my life very much. I'm writing about loss, but loss is part of life and doesn't stop it being mostly great. However, sometimes I'll have this conversation when someone implores me to keep positive. Not that they think I'm not making the most of life, but because I'm not highly invested in the prospect of getting better. I'll hear that I shouldn't “give up” - I should keep hoping for a cure, pestering my doctors for tests and experimental treatments, trying alternative therapies, restrictive diets and so on. I hear this both from other sick people who have got themselves a bit stuck, and from healthy people who really have no concept of how incredibly short life is and how very much shorter life is if you have to rest more than half the day.

However, I have many advantages when I roll my eyes at this. Meeting the disability rights movement made such a difference; it made my illness personal and private, separated out the things I can attempt to address (physical access, social attitudes etc.) and released me from the sense of obligation to fit our culture's model of a deserving sick person.

Some people are much less lucky and get stuck on denial, even after years of illness. A few times, I've come across people who are convinced that they have found the answer and – understandably, altruistically – wish to share the good news with other people. In the worse case, I was put in touch with a friend of a friend, a man in this thirties whose parents were spending twelve thousand pounds a year on a single nutritional therapy regime. Twelve thousand pounds – it crossed my mind that even if this worked and I regained full health, I could probably never earn enough to pay for it. But of course, it didn't work.

He'd been on this regime for a year or so when the therapist used some kind of mystical scanner and declared that the illness had left his body. Completely cured, his body and immune system remained weak and just needed building up again (with this ongoing course of expensive therapy, funnily enough). But as our conversation progressed, I realised that he hadn't really seen much improvement at all; this weakness was basically all the symptoms he'd had before, only with a different explanation.

Someone who has never encountered this might think such a person would have to be terribly gullible, foolish and perhaps a little unhinged. He wasn't. He was a pleasant, sensible father of three who had worked as a teacher before he was ill. He just couldn't see a life where he didn't get well. Given their financial investment, his family obviously had the same imaginative block. It wasn't that he was pretending to be well - he still wasn't able to work or walk significant distances  – but having been told that he was well, he chose to believe it.

I describe this as the worst case because, well, twelve thousand pounds a year. But there have been others and it's always tragic. You generally lose touch with these people, not because of arguments (you don't argue with this) but because it becomes impossible for them. How can you face people around whom you evangelised about a cure, when two or three years later, you are still demonstrably unwell?

But of course, in terms of stories, our culture loves this stuff.  Illness is something to be fought - Beechams will help you fight a cold, David Bowie just lost his battle with cancer. This is all denial; There is no cure for the common cold - if you have anything but a mild cold, you will feel rotten and infect people around you. Whatever courageous attitude Bowie adopted towards his illness, he died because of a great collection of circumstances which amount to bad luck - had he survived, he wouldn't have fought it off, but merely been luckier.

Hope is a great thing and looking after one's health is entirely sensible. Placing faith in the impossible (or even the rather unlikely) is a waste of life.

.......

There's one more point to be made about denial, which makes it unique among the phases of grief: other people will try to get in on the act for sinister purposes. 

Naturally, some folk do go into denial about the deteriorating health of a loved one. They desperately want there to be a simple solution, and for things to go back to normal, so they pretend that's going to happen. This can cause a lot of stress, but it's unlikely to last long. 

However, the very first thing a person does if they wish to bully, undermine or control any disabled person, but especially one who is sick with subjective unseeable symptoms, is to cast doubt on their impairment, speculate that they could try a bit harder, that their account of things is inconsistent, that maybe there's a part of them that is seeking attention. 

And these two things – someone profoundly distressed about another's state of health, and someone exploiting the opportunity to exert power over them – can be easily confused, with disastrous consequences. When friends, family, quack therapists and occasionally even medical professionals get up to that crap, a sick person can be easily dragged into that very dark and ugly place I described earlier (Is it me? Am I doing this to myself?).

Again, this cruelty is in our culture. This is what the benefits agencies do – they endlessly question perception and imply dishonesty in rock solid cases. This is what newspapers do when they complain about scroungers. People who do this to their own family and friends aren't in the least bit original, but their message must not be mistaken for love or concern. This is all about power. 

My top survival tip – not just when it comes to chronic illness, but life in general – is to trust yourself, your feelings and your experiences. This doesn't mean experiences mean what you think they mean (honestly, it was just a satellite – if you look at the sky for long enough, you'll see dozens), or that you should act on all your whims. The mind can play tricks on you, and you may have irrational thoughts, but you almost certainly do know roughly what's going on with you.

On some level, I knew I wasn't going to ride a bicycle again any time soon. But I was trying to defy my own reality. When others attempt to defy your reality on any matter - not to merely disagree with you, but suggest that what you feel is not what you feel -  you need to give them a very wide berth. 

Who would play you in the movie of your life?

This conversational game, common among young teenagers, had two separate sets of rules for me. At school, the game was an exercise in vanity and flattery; which actor was basically the older, more gorgeous version of you? If you struggled to name one, friends would make flattering suggestions; being a tall, brown-haired white girl, I should naturally have been played by Julia Roberts. Among my youth theatre friends, the game was about identifying which actor (if any) had the colossal talent required to depict the full melodrama of your life. Few have such a range, darling! A young Diana Rigg might have pulled it off, but barely!

I still think about this game occasionally, when I reflect on the fact that people in movies never look anything like me. Foz Meadows recently described this as The Perfect Hair Problem; women on screen vary so little in their appearance that they usually have the very same hairstyle, and that hairstyle remains perfect, come rain, shine or zombie apocalypse. Women on screen are overwhelmingly white, thin and without visible impairments, even more so than men. There are more transgender women than trans men on screen, but these numbers are minute and of course, they're often not played by actual trans women.

Women on screen are also overwhelmingly young. Even female characters who you'd expect to be middle-aged in real life - experts, senior managers and politicians, high-ranking police officers, the mothers of adult characters and the partners of middle-aged men - are played by inexplicably young women. Angelina Jolie is just a year older than Colin Farrell but was cast as his mother in Alexander. However, often middle aged women characters who might exist (especially mothers), have conveniently died before the start of the film. Occasionally - although the practice is far more common in the theatre – a middle aged or older woman might even be played by a man (the St Trinians movies, Hairspray, Orlando etc.).

A big part of the problem is about story-telling. You notice things like perfect hair far more when a character is actually written like a real person who would not have perfect hair. In the movie of my life, there's only one woman who has perfect, long, shiny and mechanically-straightened hair and even then only some of the time. Often, however, I find myself watching a movie, understanding that the (only significant) female character is not a character at all, but an object, a sexy lamp, the girl. It's not that she must be beautiful in a very particular way because she is eye-candy so much as the fact she needs to look like that so we recognise what she is. She can't be black or a wheelchair-user, not because audiences won't find such a woman as attractive but because the girl is never black, let alone a wheelchair-user. If this woman just wore glasses and kept them on her face throughout a movie (as opposed to taking them off as she comes out of her shell), it might start a revolution.

When we talk about the visual representation of minorities and women, the issues of story-telling, casting and the cultural baggage that goes with it are intermingled. One of the reasons folk were so upset about Eddie Redmayne’s casting as Stephen Hawking in Theory of Everything was that, even before the film was made, it was obvious both what kind of movie it would be and how it would be received. Redmayne was destined for critical acclaim, not for his courageous attempt to portray extraordinary genius, but for putting his able-bodied self into the position of a wheelchair-user. It didn’t really matter how well he imitated Hawking’s physical mannerisms because nobody really cares – he just had to look uncomfortable enough, disabled enough, and he was bound to be lauded. In Redmayne’s next biopic, he’s playing transgender pioneer Lili Elbe. Rinse and repeat.

Although there’s no serious argument for casting actors with the same sexual orientation as their characters, the pattern is the same with gay male characters, as with transgender women and disabled men: Non-disabled, cisgender, straight white men routinely play gay men, disabled men and transgender women in epic, often tragic movies which invite massive critical acclaim. The Fast Show’s parody of Forest Gump is almost twenty years old but the same movie is still being made right now:
 

Meanwhile, the most common objection to casting an actor with visible impairments to play a disabled role is that the character has to be non-disabled for some scenes, as was the case with Theory of Everything. This is only because almost every damn story with a disabled protagonist features the acquisition of impairment as a central dramatic narrative. Disability remains a metaphor for film-makers, rather than an incidental aspect of a character's life. I hope that, come an occasion for my biopic to be made, my getting sick will be the least interesting event of my life. It's already fairly low on the list.

Casting can't be about perfect authenticity. In the film of my life, someone with my particular condition would struggle to act in a film - I certainly couldn't play myself and my impersonation is seamless. However, this is about the representation of disabled people as a social group. We're all invisible for the same reason and the visibility of one of us benefits us all. As well as everyone else, who gets to see us as people rather than symbols.

Rigorous realism only matters when realism means representation. When they cast 5’7” Tom Cruise as Jack Reacher, a character who is 6’5” in the books, movie-makers weren’t contributing to an ongoing under-representation of tall men (in fact, very tall men are over-represented, while very-almost-average height Cruise is widely mocked for being a short-arse). Fans of the books may have a complaint but tall men do not. However, when the movie Stonewall, supposed to be depicting the Stonewall Riots, invents a macho young white cisgender male hero and sidelines the real-life trans women, lesbians and femme gay men of colour, well that's a scandalous erasure. See also from this year, Aloha, a film set on Hawaii with only white protagonists, including a white woman who, conveniently, is not supposed to look like she possesses the Chinese and Pacific Islander heritage of her character.

One of the problems we have is that campaigns around representation fail to take an intersectional approach. I often see articles about the casting of non-disabled actors in disabled roles which insist that nobody would stand for this being done to people of colour - "blacking up" is a thing of the past. And yet, routinely, characters of colour are either erased in novel adaptations or historic dramas or played by actors with much paler skins. Ridley Scott defended his Exodus: Gods and Kings (a film where Ancient Egypt is run by white people);

"I can’t mount a film of this budget, where I have to rely on tax rebates in Spain, and say that my lead actor is Mohammad so-and-so from such-and-such, I’m just not going to get it financed."

In other words, it’s a racist world, so even massively powerful, rich and influential film-makers are compelled to be racist. We hear the same arguments made about the casting of all marginalised people. These actors are not well-known because they're not often cast so we can't cast them now because they're not well-known.

(Please read this by Jon Ronson speaking to Middle-Eastern American actors about their chronic type-casting as terrorists - it is both hilarious and tragic.)

Frankly, any deviation from the perfect-haired women and more various but still rather samey men would be of benefit to the majority of us who don't see ourselves on screen. Whenever I see prominent women of colour, short, fat, trans or older women in movies, I feel better - any kind of diversity suggests there might be room in this visual universe for me. When I see prominent visibly disabled women on screen (once every five years or so), I feel more like a real person.

In this post I've concentrated on film because television does much better. Television increasingly features transgender people in trans roles, far more incidental disabled characters and greater ethnic diversity than you'll see at the cinema. British television especially features a far more diverse variety of women fulfilling a variety of roles. It's not a perfect medium, but it demonstrates time and again that audiences don't switch off when a drama doesn't look like every other drama before it.

Blogging Against Disablism Day 2015 will be on Friday, 1st May

Blogging Against Disablism Day 2015 is now underway. Please click here to see this year's blogs.

The tenth annual Blogging Against Disablism day will be on Friday, 1st May 2015. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.

How to take part.

1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. Everyone is welcome.

2. Spread the word by linking to this site (http://tinyurl.com/BADD2015), displaying our banner and/ or telling everyone about it on blogs, newsgroups, Facebook, Twitter, Pinterest and so on (we are using the hashtag #badd2015). The entire success of Blogging Against Disablism Day depends entirely on bloggers and readers telling other bloggers and readers in advance.

3. Write a post on the subject of disability discrimination, disablism or ableism and publish it on May 1st - or as close as you are able. Podcasts, videos and on-line art are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous nine BADD, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism, sexism and other forms of discrimination. Every year I have been asked, so it's worth saying; the discrimination experienced by people with mental ill health is disablism, so naturally posts about that are welcome.

You can see the archives for previous years here: 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013 and 2014.

Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you've written in the past as you wish.

4. Come back here to Diary of a Goldfish on the day to let everyone know that you've posted and to check out what other people have written. I shall post links to everyone's posts (slowly) throughout the day, creating an archive. However, I do need you to comment and leave the URL of your post or else I shan't find your post and won't be able to link to it.

We have both a Twitter account @BADDtweets and a Facebook Page where there will be notifications of new posts and updates to the archive during the day.


Accessibility

Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are welcome to contribute with podcasts, video-blogging or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Friday is going to be left out of the archive.

If anyone has any questions about web accessibility, I recommend the Accessify Forum. I am not an expert on web accessibility myself, so if there are any suggestions about how I can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com


The Linguistic Amnesty

Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, please respect the language that people use, particularly to describe themselves in their own contributions. We all have personal preferences, there are cultural variations and different political positions which affect the language we use. Meanwhile, non-disabled contributors can become nervous about using the most appropriate language to use, so please cut everyone as much slack as possible on the day.

At the same time, do not feel you have to use the same language that I do, even to talk about "disablism". If you prefer to blog against disability discrimination, ableism or blog for disability equality, then feel free to do so.

I've written a basic guide to the Language of Disability which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves.


Links and Banners

To link back to this post, simply copy and paste the following code:
<a href="http://tinyurl.com/BADD2015">Blogging Against Disablism Day</a>

These banners have seemed popular over the last couple of years and I am yet to think of anything better. If anyone fancies editing these images or coming up with something new, then please do so. You are free to use and mess with these as you like, so long as you use them in support of Blogging Against Disablism Day. If you already have the banner, you just need to change the URL that it links to from last year's BADD. Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.

This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:
<a href="http://tinyurl.com/BADD2015"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s320/bad01.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0"/></a>

And here's the code for the narrower one (which can be seen here):

<a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBcSXhbGbBoyrY0-GAalrKdtUWPwWQTlGr_KGjwqaib4Vx7LulQ5Rs1vsOqW7dpMR6Xeu3aMYUcD3C706N8H0VQjVudXHd8aF7WjybL3oQvvs279oLeFzlw_EI6Gj39jdGTxWa/s320/narrowbanner1.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0"/></a>


This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:

<a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26LD1wFZHKQUjLZVidcpqpMYIShd5fQv1SdOqhq_sEBzfge8XPkjKt7lzKqF8z074XxcSMV_tBokCZNqwvhsL7XoQUHT-uTmlRXUmXLRyaZN7gwx9_GK3px24NqZJtqtWNyxJ/s320/bad02.gif " alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0" /></a>

And here's the code for the narrower one (which can be seen here):

<a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8W6vcwqHTdo6DFd43RZLo-I2dW4AtRPUIUUfs4WRgR8Z8zWP7h6Rbv7p1O7xk0S_piFLUpD1MHHPvmEP9c5jgAeFLBvldADkcq97LRRHBN2199lTJs6P2BXnTGWBQVV8te0bL/s320/narrowbanner2.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0" /></a>

Please leave a comment (including the URL of your blog) to let everyone know you are joining in and I shall add a link to you on the sidebar. Also, if you have any questions, please ask.

On writing & listening to music

My iPod is rather like a vortex manipulator; the most primitive transport through time and space. Music can make me feel most like myself, my secret cool self, the self where all things are possible and then again, music can make me feel most like someone else entirely. Music in an effective way of changing gears. Music is an effective way of changing masks.

If you know what sort of music a person likes and particularly, the way they hear it, you know an awful lot about them. I find it really useful to give distinct musical tastes to characters. Outside fiction, of course, you nearly never know how other people hear music, which is why it can be so reassuring that Barrack Obama cited Ready or Not as his favourite track, yet so devastating when David Cameron professed to love the Smiths. Yet, try to consider just how David Cameron actually might listen to the Smiths. The lyrics change their meaning. The colours of the music are completely altered. Can you imagine? He hears “It’s so easy to laugh, it’s so easy to hate; it takes strength to be gentle and kind.” and is moved to demolish the welfare state while vilifying the poor.

The article I linked to documenting Cameron’s love for the Smiths quotes him as saying, "The lyrics – even the ones I disagree with – are great, and often amusing.”

That's interesting, because not everyone listens to pop music thinking, "Now, that's an ideological point of view I disagree with, but that cat sure be laying down some the phat rhymes."  So that's another thing to consider, when using music to tune into fictional characters; Charles Manson thought that the Beatles' White Album was all about race war. People hear and interpret lyrics differently; sometimes they don't matter and sometimes they're everything.

Tragically, David Cameron is not a fictional character, but if he were, understanding how he enjoyed the Smiths would be very useful to his creator. Playing the Smiths while writing about him would be useful. No reader need know about any of this - the subject need never be raised. But it's co-ordinates in time and space.

That having said, there's no harm in musical references. A detective with an eccentric taste in music has become a cliche in British detective fiction, but that's only because it worked so well with Morse (classical, particularly Wagner) or Rebus (rock, particularly The Rolling Stones). I’m really excited in movies and TV shows when they pick distinct music which a character actively chooses to listen to - McNulty listening to The Tokens' version of The Lion Sleeps Tonight while tailing Stringer Bell or Walter White racing along the desert highway to A Horse With No Name.

There are people – and therefore there must be fictional characters – who either can’t or don’t appreciate music (I have known a few extremely lovely and poetic people who are either deaf or just not bothered for music). In these cases, it may be necessary to plug into some other piece of culture that a character is into; a favourite movie, TV programme, a favourite painting or whatever. Only naturally, you can’t do that while writing, and it often takes more time and consideration.

Beyond the matter of character, I use music as an aid to concentration. I can only work for short spells and time, energy and peace arrive at fairly random intervals. I have to get in there as quick as I can.

This music is not music that I would particularly enjoy in other circumstances, because it has to meet the following criteria:

1. A track has to be at least four minutes long. Longer is good.
2. A track can't have a lot of variation - the classical music I love provides long movements, but often with too much going on.  
3. I must be very familiar with this track for some reason, even if that reason isn't love for the music.

There's a fair amount of classic music that's good for this, as is goth music; Bauhaus' Bela Legosi's Dead goes on forever. Red Lorry Yellow Lorry's Talk About The Weather is shorter but you can play it on repeat and not notice that it's ended and started again. Dance tracks from the 1990s which became numbingly familiar on the bus to and from high school are also very useful; Adamski & Seal's Killer or What is love? by Haddaway. That kind of nonsense. 

I don't dislike this music, but if I were a fictional character, it would not be mine.  

There are dangers listening to music when writing, apart from obvious things like singing, dancing and spending half an hour rearranging a playlist before you’ve even got started.

The first is feeling it too much. When I was younger, I treated fiction-writing much as I treated dramatic performance, as if, should I only feel everything a fictional character feels, the reader would too. Only actually, feeling it all makes it impossible to write. Your tears may short the keyboard but that doesn't make for articulate prose. As music is such a catalyst to strong emotion, it’s sometimes best to listen to a tune before writing in silence. You can take notes. No, don't just copy down the lyrics - what are you? Twelve?

The second is feeling hampered by the fact that nothing you can write in words can ever be as expressive and exciting as music, because music is the bomb. You’re thinking about the way a character feels, you listen to a track and know that you cannot express their feeling better than what you just heard. It’s true, you really can’t. But music cannot tell complex narratives with all the richness that entails. It's different. You can practice your guitar later on.

The third is the temptation to nerd out about music in writing, which is always unwise when one's purpose is to get on and tell a story. There are exceptions - here is one, from Howards End. 

This is what the Devil looks like.

We never take enough time to consider why tyrants are popular. Some of them, including Northern Europe's own mustachioed bogeyman, were elected by the people. Elsewhere in the world in recent years, people have voted for Putin, Morsi, Mugabe, al-Assad, even if the count is often rigged. But we’re not baffled, not really; these people who believed that the Devil was their best option either lived in the past, or they live in the developing world, which is as good as living in the past. They are vulnerable, gullible, much less sophisticated than us. The Devil walks in, horns polished to a shine, fork-tail swishing in the cloud of sulphurous gas that surrounds him and they have no idea at all.

Only this is what the Devil looks like. The Devil looks just fine. He can talk okay, is arguably charismatic, but his magnetism is not supernatural. He comes across as a decent sort of chap. He makes a few extreme statements - so sometimes he goes a little too far - but at least the man is honest, horns unpolished, refreshing in his candor. And he's funny. Charming rather than seductive. His blunders only prove that he is human.

He is nothing special, this Devil. I don't mean merely that he doesn't look that special, but if we’re honest (and we rarely are about this), evil is quite commonplace. The Devil has many guises; tyrannical regimes come in many bitter flavours. Yet there are three things all tyrants have in common:

• They happen to have massive, massive power.
• They use fear-mongering and scapegoating to maintain their power.
• They are in love with their own reflection, with an anxious need to protect and manipulate their image, as they imagine it to be, in the eyes of the world.

The massive power is what makes all the difference. It's an external factor; something that other people, circumstances, history or brute force makes happen. Look around for a leader who merely meets the second and third criteria and you have three out of our last five Prime Ministers. We only point and say, "Look, it's the Devil!" when they've been completely let off their reigns. When hundreds or thousands of their own people are imprisoned or violently killed.

So this is what the Devil looks like; like so many other politicians with a suit and a sound bite. And that’s part of our trouble when discussing his rise. People called Thatcher a fascist. People have described Blair as a murderer and Cameron as a man with no conscience. We’re not talking about people you’d leave your pet goldfish with – not if you didn't want it be sold off, drowned or abandoned with nothing to eat.

Only none of them made a bid for power on a platform of socially-retrograde authoritarian nationalism (or, you know, Fascism), suggesting we be afraid of our neighbours, with fellow candidates advocating the execution of minorities and political opponents. Other sinister political figures of my lifetime had a far nicer image to preserve. That's part of the reigns I mentioned.

A lot of people can smell the sulphur just now.

There’s a now much-quoted blog post by poet Michael Rosen which includes the passage:

"Fascism arrives as your friend.
It will restore your honour,
make you feel proud,
protect your house,
give you a job,
clean up the neighbourhood,
remind you of how great you once were,
clear out the venal and the corrupt,
remove anything you feel is unlike you..."

On Twitter, Steve Graby objected: “Worth remembering fascism comes as your friend IF you are white, straight/cis and non-disabled. Otherwise it's pretty blatantly your enemy from the start.”

That would surely be the case if everyone knew what the Devil stands for. But it is not a civil duty to keep track of all the political goings on, to read the full manifesto rather than the single-page pamphlet. It is not morally irresponsible to zone out while the politicians bicker on the breakfast news. And many ordinary fallible people do. Most people who vote for the Devil care about one or two issues and see that guy as the guy who’s going to fix them.  A lot of people vote for the Devil just because they don’t like their other options. Evil is commonplace, but naivety is pandemic. It's part of our charm.

This is what the Devil looks like. The horns and the fork-tail? All that's in the small print. There’s good and bad news about all this:

The bad news is that ordinary and fallible people can be taken in by the Devil. They don't have to be very bad or stupid, just misguided. Worse news is that you are as ordinary and fallible as the next person. He would have to wear very different clothes to fool you, of course. And maybe you do read the small print, and maybe you’d never place your vote on anyone less than a saint (abstention again, is it?), but at some point, in some context, you may well shake the Devil’s hand.

The good news is that people who support the Devil, vote for the Devil, are not evil or beyond reason. There’s as little reason to despair of your neighbours as to fear them. Better news is that a population of ordinary, fallible people in a country not yet overwhelmed with despair due to famine, mass poverty, internal divisions and war are more than capable of keeping the Devil in his place.

Despair is always the danger. Right now, politicians are so despairing of their own people that they grit their teeth and flare their nostrils, trying not to gag on the sulphur and give away the fact they can smell it. Meanwhile, some of them are, themselves, a little bit evil and the presence of the Devil beside them can only improve their own precious image. But politicians aren't very important.

Last week, I was rolling round my village, looking at potential places to live. And the thought crossed my mind,

"What if people put party political posters in their front windows? What if we find somewhere perfect but we know, without meeting them, that the neighbours are a bunch of bastards who hate people like us, our friends and families?"

And I knew I was wrong at the time (and I saw just one poster, in the house of someone who always parks their sports car on the pavement so that my wheelchair is in danger of scraping the paintwork as I pass). Then this weekend, I hear that I should prefer not to live next door to Romanians and I felt even more guilty. It would be reasonable to assume that people with those posters in their windows are ordinary, fallible, just not paying so much attention, maybe with a little less to lose.

This is what the Devil looks like. His potential power lies in our despair at each other.