I am not heroic

suite francaise coverThe best book I’ve read this year is “Suite Francaise” by Irene Nemirovsky, about the French occupation during the Second World War. She was writing in 1942, living in wartime France. It was unfinished, because she was taken to Auschwitz before she had a chance to complete it. Her notebooks have only recently been discovered.  Its genius lies in the description of a war without the usual stereotypes – there are no descriptions of battles and it doesn’t even mention the word ‘Nazi’.  It explores how people react to a crisis and relate to one another and is a brilliant and painfully accurate observation of human nature. If you haven’t read it, you should buy it immediately.

It got me thinking about illness narratives and the language of warfare. What do I mean by ‘illness narrative’? An illness narrative is a story (with either a happy or sad ending) that we use to explain the nature of illness. (For more on this, please see the excellent blog post by No Poster Girl and her husband.)  A patient is allowed to have one of two stories:  they are either the conquering survivor or the tragic hero; either victor or victim.

 

Conquering Hero Narrative

If, for example, someone gets cancer, we automatically say they are ‘bravely fighting’.     People say, ‘I’m not going to let this illness defeat me’, and we cheer them on as they ride forth into battle. They have chemo, radiotherapy, surgery, rest – and we hold our breath for the news. The announcement of ‘remission’ is the equivalent of the announcement of ‘D-Day’.  We celebrate their bravery and achievement; they are victors, survivors – they have ‘beaten’ cancer.  We like this illness narrative, it fits with our idea that we can conquer anything if we put our mind to it. These people are heroes; they have faced the Great Enemy and won.

Joan of Arc

Tragic Hero Narrative

There is an acceptable alternative.  This is when someone gets a serious illness, but despite their brave fighting, the evil enemy overcomes.  It plays dirty, it doesn’t respond to the normal treatments.  The person dies, having heroically fought their illness but lost.  The story is sad, but it is also one that we understand.  We talk about people ‘losing their battle with cancer’ – we turn the patients into hero-martyrs. It helps to bring some sense of meaning to the profound loss we experience, it expresses some of the horror of the illness, and it is a way of honouring them.

These are the two illness narratives that we have: either the heroic victory or heroic defeat. 

 

But are these narratives helpful? Are they healthy? (no pun intended).  John Diamond wrote a brilliant memoir about the experience of having cancer, ‘C: Because cowards get cancer too’,  in which he exposed this myth of ‘clean, brave cancer’. The reality of cancer (as with the reality of warfare) is messy and undignified and terrifying.  He writes that he consciously didn’t write the kind of book that portrayed cancer patients as heroes:

My antipathy to the language of battles and fights has nothing to do with pacifism and everything to do with a hatred for the sort of morality which says that only those who fight hard against their cancer survive it or deserve to survive it – the corollary being that those who lose the fight deserved to do so.

Most cancer patients feel buoyant and positive and confident to ‘fight’ the illness at some points; and feel utterly despairing and depressed and defeated at others. Feeling confident does not guarantee survival. Feeling depressed does not automatically bring death.

 

And what of the illnesses that don’t fit into these narratives? As a  society, we know how to process the ‘acute’: the emergencies, the tragedies.  But we can’t handle the chronic; the non-fatal, ongoing, wearying, unsolvable illnesses. We don’t have the language, the categories, the ‘narratives’ to talk about it. We don’t know how to react to the person incapacitated for years with back pain, those housebound with M.E., the depression patient who doesn’t respond to treatment.  We don’t know whether we’re looking at a potential ‘tragedy’ case or ‘victory’ case, and it makes us suspicious and confused.

 

Chronic illness is the equivalent of the German occupation of France in the Second World War.  Nemirovsky describes life in rural France after the French had surrendered to the German army.  The Germans needed places to stay so they commandeered people’s houses. The average French villager would have had a German officer living with them in their house, taking their food, dictating where they could or couldn’t go.  In some senses life went on as normal, and they went on running their shops and househoulds.  They were not under threat, as long as they behaved.

In other ways it was very different. They had lost their freedom. There were new rules to be obeyed, and the sinister threat of death if those weren’t respected.   They had no idea how long this occupation would last and whether the Germans would be defeated or not.  Other countries were still fighting, but for France the outcome had already been decided, and they had to get used to this new way of life.  They had to live with the daily reminder of the shame of surrender.
French Refugees And US Soldier

With a chronic illness your life is completely changed; you no longer have control or final say over what you can eat, where you can go, what you can do – but you are still living.   Though there is still enmity with the illness that you have  surrendered to,  there is no ‘fighting’ anymore. You have no choice.  You need to get on with it. You make do.

Some days you cannot stand the thought of an enemy presence in your territory: “how dare this illness be in my life?” Some days you feel like rebelling; “maybe I just won’t rest today, maybe I won’t take my drugs today,  maybe I will do what I want” – though you know it is dangerous and futile.  Most days involve the reluctant acceptance of  coexistence of this enemy, seeking ways to make life as normal as possible.

 

This is not a heroic story.  Let’s face it – it’s not going to be a bestseller. It’s not got much plot or excitement (though perhaps some character development…) and it’s longwinded and banal.  If it were a novel it would probably be one of those Russian ones, with endless names to learn and keep track of.  (Or Moby Dick – “just kill the whale already, won’t you?!”) But it is my story and many others’, and needs to be told.

The story of chronic illness is long, ongoing, unfinished, and not as exciting or as accessible as the ‘victor/martyr-hero’ alternatives. But like Irene Nemirovsky’s novel, what it lacks in drama it makes up for in truth.

Over to you:

  • What situations in your life are like the German occupation of France; ongoing, unresolved, complex…?

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26 Responses to I am not heroic

  1. Sam 23rd February, 2012 at 2:47 pm #

    Tanya, this blog post has really resonated with me today. All too often, people judge my acceptance of my ME/CFS as defeat – that by not fighting against the restrictions it places on my life, I cannot expect to be any “healthier” than I am at present. It implies that my current severe symptoms are somehow of my own creation.
    And, sadly, it is often my Christian friends who fall into this category. That if only I “accept God’s healing” I will suddenly, miraculously, be well again. What they are saying, is that I have no faith, and my continuing illness is (once again) a result of my own inaction.
    But I disagree with them completely. Our illness shows us the true nature of faith, hope and patience. It’s a journey, not a battle.

    • Tanya 23rd February, 2012 at 7:51 pm #

      Sam – thank you so much for commenting on this, especially with the limited brain energy that ME brings! It is indeed sad that Christians fall into this trap of wanting quick, easy answers (and tending towards blaming the patient). It seems to be a ‘spiritualising’ of what society is saying about illness – that all illness must be ‘conquered’.

      I can thoroughly recommend ‘God on Mute’ by Pete Greig on this subject. He writes about suffering and unaswered prayer, drawing on his experience of wife’s debilitating epilepsy and his wrestling with God for not healing her. It helps to know there are others around in the same situation! Thanks for connecting with me.

  2. Emma 20th February, 2012 at 8:55 pm #

    This is such a good post Tanya – especially your observations about heroic defeat vs heroic victory. In both cases we’re also positing ourselves as the author of our fate – ‘success’ or ‘failure’ becomes a matter of pride or self-contempt, illness becomes morality and God is excluded.

    • Tanya 22nd February, 2012 at 11:19 am #

      “illness becomes morality” – I like that observation. That’s really helpful to point out that in both cases we are the author of our fate; the control is in our hands instead of God’s. I think that particular lie is such a pervasive one in our society! Thanks, Emma.

  3. Anita @ Dreaming Beneath the Spires 17th February, 2012 at 12:16 am #

    I guess serious illness is not something one thinks about until it happens to you, and then the icy hand of fear can grip one’s heart. I am in the middle of a health scare– two doctor’s visits and tests last week, two more next week–and was surprised at how fear gripped my heart. I guess illness can impose a completely different narrative on one’s life, and, if it’s something like cancer, can totally dominate the plot. But I am going to trust in God (at least until the tests results are in) and then either my trust will be vindicated, or trusting in God will have to take an entirely new meaning!!
    Just read the last few of your posts. They are excellent, you are really finding a very charming and interesting blogging voice. Looking forward to your guest post next Sunday

    • Tanya 17th February, 2012 at 11:10 am #

      I’m so sorry to hear about your health scare – I’m really hoping with you that it will all prove to be okay. I’m also praying for clarity, that the diagnosis will be quick and clear and you will know definitely what is causing your symptoms.

      Thank you so much for your affirmation of my posts – it means a lot! I’m also looking forward to guest-posting on your blog! Hope you have a good week.

  4. Alice 16th February, 2012 at 6:58 pm #

    How accurate to say that we don’t know what to do with illnesses (or other areas of life) that we can’t classify as heroic or triumphant. We’re often so reluctant to really care properly because we know it’s the long haul and that there may well not be any celebrations.

    The language we use is bizarre isn’t it? I watched an ad for men’s hair colour yesterday and they described a man who “wouldn’t give in to grey”. As though by sheer will he had a choice and grey was a weakness!!

    I think most of us don’t suffer beautifully and we feel terribly guilty – suspecting that everyone else does or would! So we apply battle language as armour – as long as people think we’re not going down without a fight, no one will discover quite how weak and weary and scared we are.

    Brilliant, brilliant post – thanks for honesty and dignity. I think you’re great. Xxx

    • Tanya 17th February, 2012 at 11:06 am #

      Thank you for this! It’s really helpful that you deconstruct the language of advertising to see what it says about our society. Once the language of heroic battle is applied to hair colour, it does all start to sound faintly ridiculous!

      Your point about us ‘not suffering beautifully’ is an astute one. I find it a comforting thought that other people may not be gracious and holy and serene in their suffering either! And I think that you’re right that fear is a big player in this. We need to conceal our fear. Battle language as armour – ironic, and true.

  5. Karmen White 16th February, 2012 at 5:46 pm #

    Tanya, I really enjoyed this blog! It hit a nerve to be honest. Society does love to make cancer victims heroes. Which, sometimes is true! Sometimes people show such dignity that they are quiet heroic. But what about long term sufferers of depression? I can’t tell you how many times I’ve heard people say in whispers behind a sufferers back, ‘they should just pull their socks up and get on with it.’ Or, ‘Its all in the mind, they need to shake themselves out of it’! It makes me desperately sad, that people soon lose patients with people who don’t ‘get better or worse’, they just…. are. We want people to fight, and if they are not fighting its because the illness is too strong. We can’t comprehend having an illness that can’t be conquered with drugs or operations or will power, we can’t except that for some healing we just have to wait. You may not think your story is heroic or a best seller and perhaps that’s true, but what I know is that each blog warns me against being narrow minded and judgemental. You are opening my eyes to what it means to suffer long term with an illness that people don’t understand and have no patience for. YOUR STORY makes me a better person, and for that I thank you xx

    • Karmen White 16th February, 2012 at 5:47 pm #

      ps. i need to read that book!! lol

    • Tanya 17th February, 2012 at 11:00 am #

      Karmen, you are SO encouraging! thanks so much for this, I’m so glad that you are connecting with these posts.

  6. Tallandrew 16th February, 2012 at 12:20 pm #

    This is quite brilliant Tanya. I’ve been uncomfortable with the language of battle for years because of the underlying unspoken feeling that the outcome is mostly down to the person who is suffering. It is salvation by effort, works, or simply by keeping your optimism up. (Lionel Shruvers novel ‘so much for that’ deals with some of these issues). thanks for giving an alternative metaphor for illness!

    • Tanya 17th February, 2012 at 10:49 am #

      Thank you for your kind words!

  7. Kevin 16th February, 2012 at 11:26 am #

    You’ve posed your readers a with challenging question that goes to the heart of how we try to make sense of all that may be happening to us when we are up against ‘life’ or acute illness or living with a long-term condition. I’m not sure I can answer your question but perhaps I may throw a few pebbles in the pond for further reflection. You have rightly drawn our attention to the powerful imagery that surrounds illness and battle, the siege, the victory and sometimes the defeat; a narrative that helps us to make some sense of the travails that illness can and does bring to us all. Metaphor is indeed helpful as illustrated by Susan Sontag in her books ‘Illness as Metaphor’ and ‘The metaphors of AIDS’, however they are also unhelpful in other ways. We live in a medicalised society, where we have accepted and expect that ‘pathogenesis’ rules the day. Yes we do need, and rightly so, our great Cathedrals of Care (Hospitals) were pathogenesis is the paramount concern, of identifying, treating and hopefully curing or halting the debilitating effects of illness, it’s in these fields of endeavour where the metaphor of the battle, the victor and th and disease and where the ‘survivor’ are most often found. But what of the places outside of Cathedrals of Care, i.e. the community, at home, in social care etc, where long term conditions are found and managed – you are right the narrative of illness here is unhelpful and limited. Our understanding of ‘health’ plays a big part in the narrative we choose to use to describe ourselves and how we perceive that we are seen by others. Health in a bio-medicalised world view is ‘the absence of illness or disease’ however in the social model of health view, health is a ‘resource for daily living’ and is concerned with physical, mental, social and spiritual well-being. It replaces (but does not reject) pathogenesis with ‘salutogenesis’, i.e. what creates health and well-being, in all of us, what makes us resiliant. Salutogenesis, as expounded by Aaron Antonovsky is the alternate view that suggests the salutoqenic model can influence our thinking of about the factors that form the basis of human health. Antonovsky’s fundamental contribution to this narrative was to point out the consequences of a pathological orientation toward sickness and disease, arguing persuasively that a far more useful view is obtained when researchers and clinicians (and ourselves) instead focus on health and the forces that help people maintain effective functioning even in the presence of hazardous influences. Salutogenesis complements the metaphor(s) of illness and offers a balance to pathogensis but does not negate that we all at times walk the road marked with suffering on which the Lord has promised he would not leave us or forsake us.

    • Tanya 17th February, 2012 at 10:48 am #

      Thanks for this, Kevin. I think I understand it (though I had to read it a few time through, so I may be wrong!) In some ways I can see that it’s useful to look at health in a more rounded way than just a binary ‘healthy’ or ‘not healthy’ pronouncement. People are complex and we are definitely more than our physical makeup. I suspect that the ‘salutogenesis’ approach is especially helpful in cases of mental illness, as there is more crossover than most other illnesses between the body chemistry and the effect on emotions and thoughts (and vice versa).

      But I have to confess I have significant reservations about this approach, mainly because I have seen this ‘bio-psycho-social’ approach used to abuse those with a physical illness by taking away welfare payments. There are instances of people with M.E. who have been assessed by an welfare-assessing doctors as being unable to walk, but then in their report they write ‘we are applying the bio-psycho-social model here so they are not eligible for benefit.’ In these kind of cases, bio-psycho-social becomes a by-word for ‘we think they’re faking it and there’s nothing really wrong with them’. It can also become an excuse for not treating what’s physically wrong with someone but instead talking through their emotional response to the illness. In principle, the bio-psycho-social model is a good idea, but in practice it seems to be distinctly more psycho-social than bio!

      Thanks for the comment; it’s great to have some kind of academic context to my random musings!

Trackbacks/Pingbacks

  1. Collection of Webs (12) « Sunshine Lenses - 20th February, 2012

    […] Tanya Marlow writes about the illness narative. Its a very interesting read: “As a  society, we know how to process the ‘acute’: the emergencies, the tragedies.  But we can’t handle the chronic; the non-fatal, ongoing, wearying, unsolvable illnesses. We don’t have the language, the categories, the ‘narratives’ to talk about it. We don’t know how to react to the person incapacitated for years with back pain, those housebound with M.E., the depression patient who doesn’t respond to treatment.  We don’t know whether we’re looking at a potential ‘tragedy’ case or ‘victory’ case, and it makes us suspicious and confused.” […]

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