Cancer

The Silence of the Dying

sara-in-office-featuredMany years ago I did an hour long interview on Adelaide radio (with Jeremy Cordeaux, I think, but my memory may be wrong). The interview was supposed to promote one of my recent publications, but for some reason we quickly strayed onto the subject of death and dying, and there we stayed for the entire hour. I proposed that as a society we have lost all ability to die well. Unlike pre-industrial western society, modern western society is ill at ease with death, we are not taught how to die, and very few people are comfortable around death or the dying. There is a great silence about the subject, and a great silence imposed on the dying. During the programme a Catholic priest called in to agree with the premise (the first and last time a Catholic priest and I have ever agreed on anything) that modern society cannot deal with death. We just have no idea. We are terrified of it. We ignore it and we ignore the dying.

Today I’d like to take that conversation a little further, discuss modern discomfort with death, and discuss the silence that modern western society imposes on the dying. Recently I’ve had it hammered home on a couple of occasions how much the dying are supposed to keep silent, that ‘dying well’ in today’s society means keeping your mouth firmly closed and, preferably, behind closed doors.

Never shall a complaint pass your lips. How many times have we all heard that praise sung of the dying and recently departed, “They never complained”?

Death in pre-industrial society was a raucous and social event. There was much hair-tearing, shrieking and breast beating, and that was just among the onlookers. Who can forget the peripatetic late-medieval Margery Kempe who shrieked and wailed so exuberantly she was in demand at all the death beds she happened across? Suffering, if not quite celebrated, was at least something to which everyone could relate, and with which everyone was at ease. People were comfortable with death and with the dying. Death was not shunted away out of sight. Grief was not subdued. Emotions were not repressed. If someone was in pain or feeling a bit grim or was frightened, they were allowed to express those feelings. Unless they died suddenly, most people died amid familiar company and in their own homes amid familiar surroundings. Children were trained in the art and craft of dying well from an early age (by being present at community death beds). Death and dying was familiar, and its journey’s milestones well marked and recognizable. People prepared from an early age to die, they were always prepared, for none knew when death would strike.

Not any more. Now we ignore death. We shunt it away. Children are protected from it (and adults wish they could be protected from it). The dying are often not allowed to express what they are really feeling, but are expected (by many pressures) to be positive, bright and cheerful as ‘this will make them feel better’ (actually, it doesn’t make the dying feel better at all, it just makes them feel worse, but it does make their dying more bearable for those who have to be with them).

When it comes to death and dying, we impose a dreadful silence on the dying lest they discomfort the living too greatly.

I have done no study as to when the change took place, but it must have been about or just before the Industrial Revolution — perhaps with the mass movement into the cities and the subsequent destruction of traditional communities and community ties, perhaps with the rise of the modern medical profession who demanded to control every aspect of illness, perhaps with the loosening grip of religion on people’s lives during the Enlightenment.

Certainly by the nineteenth century silence and restraint had overtaken the dying. The Victorian ideal was of the dying suffering sweetly and stoically and silently (we’ve all read the novels, we’ve all seen the paintings). Those who didn’t die sweetly and stoically and silently but who bayed their distress to the moon generally ended badly by dropping their candle on their flammable nightgown, and then expiring nastily in the subsequent conflagration which took out the east tower of whatever gothic mansion they inhabited. The lingering commotion and the smouldering ruins always disturbed everyone’s breakfast the next morning. There was much tsk tsk tsk-ing over the marmalade.

By the mid-nineteenth century, if not earlier, the lesson was clearly implanted in our society’s collective subconscious.

Death should be silent. Confined. Stoic.

Sweet, stoic and silent was the way to go. (Again I remind you that a sweet, stoic and silent death is still praised innumerable times in today’s society; by the time we have reached early adulthood we have all heard it many, many times over.) The one exception is the terminally ill child. Terminally ill children are uncritizable saints. The terminally ill adult is simply tedious (particularly if they try to express their fears).

All this silence and stoicism scares the hell out of me.

In that radio interview many years ago I spoke as a historian. Today I speak as one among the dying. Two years ago I was diagnosed with cancer. Six months ago it came back. It is going to kill me at some stage. Now everyone wants a date, an expected life span, an answer to the ‘how long have you got?’ question. I don’t know. I’m sorry to be inconvenient. I am not in danger of imminent demise, but I will not live very long. So now I discuss this entire ‘how we treat the dying’ with uncomfortable personal experience.

Now, with death lurking somewhere in the house, I have begun to notice death all about me. I resent every celebrity who ‘has lost their long battle with cancer’. Oh God, what a cliché. Can no one think of anything better? It isn’t anything so noble as a ‘battle’ gallantly lost, I am afraid. It is just a brutal, frustrating, grinding, painful, demoralizing, terrifying deterioration that is generally accomplished amid great isolation.

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks. After that they’re on their own. From my own experience and talking to others with bad cancer or chronic illness, I’ve noticed a terrible trend. After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. People drop you off their Facebook news feed. Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

This is an all too often common experience. I described once it to a psychologist, thinking myself very witty, as having all the lights in the house turned off one by one until you were in one dark room all alone; she said everyone described it like that. People withdraw, emotionally and physically. You suddenly find a great and cold space about you where once there was support. For me there has been a single person who has made the effort to keep in daily contact with me, to see how I am, how I am feeling, and listen uncomplainingly to my whining. She has been my lifeline. She also suffers from terrible cancer and its aftermath, and has endured the same distancing of her friends.

The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.

People also don’t know how to help the sick and dying. I remember a year or so ago, on a popular Australian forum, there was a huge thread generated on how to help a member who was undergoing massive and life-changing surgery that would incapacitate her for months. People asked what they could do. I suggested that if one among them, or many taking it in turns, could promise this woman two hours of their time every week or fortnight for the next few months then that would help tremendously. In this two hours they could clean, run errands, hang out the washing, whatever. And they had to do all this while not once complaining about how busy their own lives were, or how bad their back was, or how many problems they had to cope with in life. Just two hours a fortnight, with no emotional-guilt strings attached. Whatever she wanted or needed. Freely given.

Bliss for the incapacitated or chronically ill.

But that was too difficult. Instead the poor woman was buried under a mountain of soft toys, dressing gowns, bath salts and bombs, daintily embroidered hankies, a forest’s worth of Hallmark cards, chocolates and flowers and exhortations that everyone was ‘thinking of her’.

None of which helped her in any way, of course, but all of which assuaged the guilt of the gift-givers who mostly promptly forgot her and her daily horrific struggle through life.

Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it.

Instead, too often, it is up to the sick and the dying to comfort the well and the un-dying.

Just take a moment to think about this, take a moment to see if you have ever experienced it yourself. The dying — sweet, stoic, silent — comforting those who are to be left behind. I know I experienced it when first I was diagnosed with cancer. I found myself in the completely unreal situation of having, over and over, to comfort people when I told them I had cancer. In the end I just stopped telling people, because almost invariably I was placed into the bizarre situation of comforting the well by saying everything would be all right (which, of course, it won’t, but that’s what people needed to hear to make them comfortable about me again).

The dying have been indoctrinated from a very young age into this sweet, stoic and silent state. They earn praise for always being ‘positive’ and ‘bright’ and ‘never complaining’. Perhaps they are bright and positive and uncomplaining, but I am certain they lay in their beds with their fear and anger and grief and pain and frustration completely repressed while modern expectation forces them, the dying, to comfort the living.

I am sick of this tawdry game. I am sick to death of comforting people when all I want is to be comforted. I am sick of being abandoned by people for months on end only to be told eventually that ‘I knew they were thinking of me, right?’ I am sick of being exhorted to be silent and sweet and stoic. I know I face a long and lonely death and no, I don’t think I should just accept that.

I don’t think I should keep silent about it.

I have witnessed many people die. As a child I watched my mother die a terrible death from the same cancer that is going to kill me. As a registered nurse for seventeen years I have seen scores of people die. I have watched the dying keep cheerful and reassuring while their family were there (forced by modern expectation of how people should die), only to break down and scream their terror when the family have gone. The one thing they all said, desperately, was “Don’t let me die alone.” But mostly they did die alone, doors closed on them by staff who were too frantically busy to sit with them, and relatives who have gone home and not thought to sit with their parent or sibling. People do die alone, and often not even with the slight comfort of a stranger nurse holding their hand. If you put your relative into a hospital or a hospice or a nursing home, then their chances of dying alone and uncomforted increase tremendously. I want to die at home, but I am realistic enough to know that my chances of that are almost nil as impersonal ‘carers’ force me into a system that will remove me from any comfort I might have gained by dying in familiar, loved and comforting surroundings.

My mother, who died of the same cancer which will kill me, kept mostly stoic through three years of tremendous suffering. But I do remember one time, close to her death, when my father and I went to visit her in hospital. She was close to breaking point that evening. She wept, she complained, she expressed her fears in vivid, terrifying words. I recall how uncomfortable I was, and how relieved I was when she dried her tears and once more became cheerful and comforting herself. I was twelve at the time, and maybe I should feel no guilt about it, but I do now, for I know all too well how she felt, and how much she needed comforting far more than me.

She died in her cold impersonal hospital room in the early hours of the morning, likely not even with the comfort of a stranger nurse with her, certainly with none of her family there.

The great irony is that now I face the same death, from the same cancer.

That is the death that awaits many of us, me likely a little sooner than you, but in the great scheme of things that’s neither here nor there. Not everyone dies alone, but many do.

Not everyone suffers alone, but most do it to some extent.

It is the way we have set up the modern art of death.

I am tired of the discomfort that surrounds the chronically and terminally ill. I am tired of the abandonment. I am tired of having to lie to people about how I am feeling just so I keep them around. I am tired of having to feel a failure when I need to confess to the doctor or nurse that the pain is too great and I need something stronger.

I am tired of being made to feel guilty when I want to express my fear and anguish and grief.

I am tired of keeping silent.

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Thank you for reading this far, and being my companion this far. I promise to be more stoic in future. But just for one day I needed to break that silence.

©2010 Sara Douglass Enterprises


Editors note: This article was originally a blog post on Sara’s nonsuchkitchengardens.com website.

The Guilt of Cancer

This article is a post from the NonsuchKitchenGardens.com blog put up by Sara on 15th December 2009. It is a precursor to the Silence of the Dying article. 


If you’re not up to reading a really, really angry post, with a few choice words, then please go no further.

Before I get started, though, I would like to truly thank Dr Karen R Brooks, an author, academic and newspaper columnist, who over the past few months has been such a loving, outstanding support. Thank you, Karen. I love you dearly.

I have been feeling angry for a long time, but it is very hard to articulate that anger (or I felt so guilty about trying to articulate it that I simply could not voice it). But the other day Karen (thank you, sweetheart) sent me an excerpt of a review of a book by Barbara Ehrenreich. It suddenly not only made sense of everything I’d been feeling, but in one wondrous swoop it lifted from my shoulders all that guilt I’d been carrying about (and which burdens so many people with cancer). It also made me very angry (yes, even more so!), because as I thought more about what the review said, I realised how people with cancer are made to feel guilty in so many subtle, different ways.

This post is a healing post for me, because it is the post where I am going to say, “Sorry, but I’m not falling for that guilt trap again.” I am absolutely over people who make those with cancer feel guilty.

The review of Barbara Ehrenreich’s book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, appeared in the Washington Post in mid-November this year. Here is the part of that review Karen sent me:

… studies proclaiming a link between a positive attitude and cancer survival … are full of problems and discounted by most researchers. Furthermore, the popular insistence that cheerfulness can help beat the big C, while it can be a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining, leaves patients in the uncomfortable position of having to deny their very real anger and sadness, even to themselves, for fear of being complicit in their own illness.

You can read the full review at the link above.

That small excerpt in itself hit a horribly painful nerve deep within me. How many times have I been made to feel guilty that I was depressed, or hopeless, or scared? That if I entertained those feelings, well then, I was simply going to allow the cancer to beat me, and it would all be my own fault if I died. How many times have I sat on my sofa, all alone, shaking in fear because I couldn’t banish the dark thoughts, and thinking those dark thoughts alone would condemn me? How many people have prattled on to me about the ‘power of positive thinking’, not realising that all they were doing was deepening my own pain, forcing me to suppress any feelings of anger or fright or grief — all emotions I was utterly entitled to feel. Perhaps they thought they were making me feel better. Instead they greatly increased my pain.

People diagnosed with cancer go through a huge range of powerful emotions. They are absolutely entitled to every one of those emotions, they need to move through them (in the same way people need to move through the grieving process), and they need to move through them at their own pace. Telling people to brighten up, or buck up, or try and put it behind you, or thinking like that won’t get you anywhere, or try to be positive, and numerous other empty platitudes, does such immense, immense harm.

I’ll repeat something that review said “… the popular insistence that cheerfulness can help beat the big C, while it can be a great convenience for health workers and even friends of the afflicted, who might prefer fake cheer to complaining …” So be positive and cheerful, girl. Not only will that kill your cancer, it will make everyone about you feel that much brighter, too, as you’ll be such a nicer person to be around!

Oh dear, yes. I never realised until I developed cancer myself what a burden it can be – simply because the person with cancer often has to console many of the people about them. That is not true of everyone. I have family and friends who have been immensely strong for me, and I thank them and love them so much for it. But as for others, who I had to work hard to console and who, after a while, gave up actually asking me how I felt and came out with factual statements like, “Hello! I bet you’re feeling a whole lot better today! Right? Great!” … well, what can I say. I was forced constantly to say yes, I was feeling better, when all I wanted was someone to console me because I was hurting so badly inside. People with cancer have a double burden to carry – they not only somehow have to make it right for themselves, they often have to make it right for those about them, too. You are literally forced into false cheerfulness by the needs of those about you.

That is so bloody unfair.

Once that review got me thinking, I remembered many of the other subtle guilts I have been forced to feel.

One of the great guilt trips (which appears in many guises) is that you yourself are responsible for your own cancer, perhaps by hiding deep secrets or bad feelings (or whatever harmful little pimple of bad emotion you harbour deep inside). You have cancer? Then it is all your own fault, man, because you’ve been harbouring ‘unresolved issues’ haven’t you? This is a great one in alternative medicine. As just one example, on this page, about half way down, it states the belief of Louise Hay that “cancer is connected with deep hurt, long standing resentment. Or a deep secret or grief eating away at the self.” The site helpfully gives us Hay’s healing affirmation which we can say ten times a day in which we manage to forgive ourselves.

We have to forgive ourselves. Oh, well then, why don’t we just go all out and crucify ourselves at the same time and get it all over and done with. Thanks. Very. Much. Peace, light and harmony to you, too.

I also have problems with those who advocate alternative approaches to treating cancer because that often also increases stress and guilt. Despite what I say below, I am not against alternative approaches to treating cancer at all. I will happily try something if it resonates with me; I have most certainly tried alternative practices (although I’ve given up trying to forgive myself!). I don’t want to get into a debate about whether or not conventional medicine is better or worse than alternative medicine in treating cancer. Everyone is free to make their own choices and I fully support anyone with cancer going down Route A as opposed to Route B. Whatever makes you happiest, most comfortable and more confident, then do it. You can also mix both conventional and alternative happily and with few problems, and there are very, very few conventional medical practitioners who will want to try and stop you trying alternative approaches (whatever conspiracy theory the alternatives are trying to push down your throat).

What I hate (and deeply resent) is the guilt that gets ladled about on so many alternative medicine sites.

I have already mentioned Louise Hay’s theory that we’re all responsible for our own cancers by harbouring unresolved grief etc. The site where I found that little gem (www.cancerfightingstrategies.com) presents a guide to some alternative approaches to treating cancer, (but is heavily biased and the author of the site never identifies themselves, nor provides contact info – a big, big no no).

There was one thing on one page that soured the entire site for me – and, yes, it was the guilt thing again. The author discusses the idea that cancer cells feed off sugar, and suggests (as do many others) that you eliminate all refined sugars from your diet: “Cut out all sugars, cookies, chips, etc. Now of course, you may not want to change your habits. That’s okay, you have every right to live or die as you like.”

Bloody hell. What a patronizing bastard (or bitch – as they don’t identify themselves I can’t decide which way to go). I eat a pretty sensible diet. I don’t ‘do’ chocolate or crisps or cookies, or very, very rarely. I eat lots of organic veggies. I cook from scratch from whole, healthy foods. But my single love is a cup of milky, sweet tea. Now even that is denied me, because some ghostly voice will be echoing inside, ‘You know you’re killing yourself with this cup of tea, don’t you?’ (And, of course, the animal protein in the milk will do me in, too, as so many happily advise.)

I have to feel guilty about a single bloody cup of tea with milk and sugar. You may think this a small, insignificant thing – but it isn’t. Multiply this a thousand times by all the things the alternative practitioners tell you not to do (because if you do them you are feeding your cancer and are, quite simply, responsible for killing yourself) and your life becomes a nightmare of guilt and fear.

There are so many sites like this on the web. They each have an agenda to push, and they don’t hold back on using the guilt trip to get you onto their particular hobbyhorse. Everywhere you go there is someone laying further guilt on you. Very quietly. Very subtly. Any pleasure is denied, even a decent sob, because it will likely kill you … and it is most certainly your fault you have cancer in the first place.

A word also about what happens to someone who suddenly announces she or he has cancer. Every single one of us, I am certain, gets inundated by well-meaning people about alternative approaches to treating cancer. We are referred to countless websites, articles and books about miraculous waters, minerals, enzymes, juices, diets, meditations, teas, amazing berries from the foothills of the Himalayas, courses, healing hands/back supports/magical dusters, and the amazing power of dancing naked under the moon at midnight. Amid countless others.

Personally, I have been referred (completely unasked) to well over one hundred different web sites and/or approaches. Can I just point out, very politely (and without screaming, which is what I really want to do), what this does to someone? All of you well-meaning people are now forcing me to choose between over one hundred conflicting bits of advice about which route to go down. Can’t you understand that I now sit on my sofa and shake in fear about choosing the wrong one? Do I really need this kind of incredible stress?

It is the same as if all these people have taken me to one hundred different conventional doctors, all with different approaches, and then sat me back and said, ‘Make sure you pick the right approach, or else you’ll die’. (Need I point out the guilt issue again.) From talking to other people with cancer, as others with serious diseases, this is a pet hate of many – that they are inundated with unasked-for advice by the well-meaning who simply worsen an already incredibly stressful time.

If someone asks for the information, then by all means hand it over. If someone doesn’t ask for it, then please stop ladling out the advice. It does not help. It makes it much, much worse. Please credit whoever it is with cancer (or whatever serious disease) that they have enough intelligence to know who Mr Google is, and that they know what Mr Google can do, and that if they want to avail themselves of Mr Google then they bloody well will all on their own. And if they don’t want to avail themselves of Mr Google, then please accept that this is their right, too.

I know that if I keel over one day, then many of these people who push this or that bit of advice are going to suck their teeth and scratch their arses and say (or think), “If only she’d done what I’d suggested …”. And, yes, conventional practitioners will say it too, if their advice has been ignored.

Anyone with cancer knows that at their death there are going to be countless multitudes lining up to say, “Oh, if only she/he had taken my advice …”.

All the guilt people with cancer are forced to bear …

A single issue keeps coming up with alternative medicine sites and spokespeople. If all these alternative approaches were so bloody wonderful, why don’t conventional doctors push them? Well, the alternative medicine practitioners and their fans mutter, that’s because the conventional medical practitioners won’t make any money this way so they’re hardly going to tell you about them are they?

Oh God, that makes me so fucking angry. It always has to be a conspiracy, doesn’t it? The fact that the alternative medical practitioners are going to make money from their alternative medicines and treatments is never mentioned! There is an entire industry out there feeding off the terror (and the guilt) of the hopeless, and I find that vile.

Why are there so any people ‘out there’ who insist, and insist on telling me (or by insinuating it by suggesting this, that, or ninety-eight other alternatives), that I have taken the wrong route? Do you really think you are doing me a kindness? Where in God’s name is your humanity?

I can only speak of my own personal experience here, but none of the surgeons, doctors, oncologists and nurses who have seen me throughout my (conventional) treatment have proved to be black-hearted money grabbers who have intentionally withheld information from me because it won’t make them a penny. They have all been genuinely caring individuals who have done their very best for me.*

Not one of them has sat back and moralized about thinking positive and seeking a higher spiritual plane by eating an alkaline diet (or via whatever means) when I’ve been sitting sobbing in front of them. They have simply held my hand, or hugged me, and told me they understand, and asked what they could do for me. They have been brilliant. They have never once made me feel guilty. They have never once pointed the finger at me and said, “It’s your fault”, nor have they once insinuated it, and yet alternative medicine and all those platitudes offered by the well-meaning does this over and over and over in a myriad of subtle, horrid ways.

Well, I am past the guilt. I am angered by all those who ladle out the guilt, but I am now past it.

So now I am going to have a cup of tea with some sugar in it, and think some glum thoughts, just because I damn well can.

*There was one extraordinary doctor who gave me some expensive treatment one day. When I fronted at reception to pay, the doctor poked her head into the reception area and said to the receptionist, “There is no charge. She has been through enough already.” That, my friends, is conventional medicine. And that, my friends, was such humanity and compassion that it even now, months later, leaves me in tears.