The burden of modern death

(When the link is posted, I'll place it here....hiorta)

The post reads as follows:
Just finished reading an interesting blog by a fantasy author who is dying of cancer, of the societal need to not be a bother, it's something i thought about ever since the Shooter guy Bird went on the rampage, and some people said living with your mum made you mad or some other unsubstanciated claim. Obviously many people will know generational living was a part of our and still is a part of many cultures, the older people imparting their Wisdom to the younger and nary a mass murder in sight.
My first thought about folk staying with their parents was "what about looking after them when they are old" but people devolve the responsibilty of parents into nursing homes these days, not all of course but it is a big industry. I have a candid relationship with my Grandmother and she is terrified of going into a home "to die", anyway i thought some of this tied in with it, and i think it's an interesting perspective.


Many 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.

Hiorta

Are we allowed to contact this person and be a friend at a distance? Via email or responding to his/her blog? I am so appalled and saddened to think of anyone in that position feeling that their pain is unacceptable to others. Please let us know, if you know.

Alan

Sara Douglass wrote it, she has an official fan page on facebook

Wes wrote:Sara Douglass wrote it, she has an official fan page on facebook

She also has a website:

March 20th 2010:

I have finally succumbed to Facebook and have started up a fan page there. It will be the easiest way to contact me, and to catch up on news of forthcoming books etc etc etc. You can find me listed as Sara Douglass, Official Fan Page (the other Sara Douglass page is run by Tor and I can have no input there). Celebrate the 15th anniversary of BattleAxe by becoming a fan!

May 30th 2009:

Hello everyone. I went very quiet for a while as I went back into chemo for three months. But now all treatment has been finished, I am in remission, and I am cast back into the cold, dark world all by myself again. So now it is just fingers crossed that I remain cancer free and that the original cancer was not aggressive. My surgeon oncologist will be keeping a close eye on me.

I am back to trying to live a more normal life. Both cancer, surgery and 6 months of chemotherapy really knocked me about. I'm concentrating now on regaining strength and fitness.

My life now is my garden, particularly my kitchen garden. The entire garden descended into a nightmarish mess for about a year as I was ill, so I have been spending as much time as possible fighting the weeds (damn it, why is there no chemo regime for weeds??). This winter I am putting in new raised beds which will extend my food growing area and I really want to get as close to self-sufficiency in food as I can.

So that is what I have been doing.

To everyone who has emailed and written in - thank you so much, Your support has meant a great deal to me. I apologize for not answering everyone personally - but too many of you wrote!

I am taking most of the rest of this year off, gardening as much as I can, and then back to writing. I have a new book planned and am looking forward to starting it.

Once again - thank you for all your support.

I saw the article here;
http://taboard3.com/forum/index.php?s=1c8015d6864c4fd42719331b3e5e3d79&showtopic=118900
There has no link been give so far.

It is for people in such a position - and those who might later arrive - that a practical knowledge of Spiritualism could make a huge difference to.

I am not sure the picture painted by Hiorta is generally true. I suspect some of it is cultural. I am sure it is true in many instances though.

Firstly, the need to comfort others affected by our own illness is an expression of selflessness. To see the pain our suffering causes others and to seek to ameliorate it is, perhaps, a kindness. It is not something that should be an obligation placed on the sick person but it is, as far as I can see, a selfless act, particularly under the circumstances.

I see many expressions of grief and weeping over those who have passed. Often this is a private expression either alone or with friends. If that is what a person is most comfortable with, I do not see the harm.

I like stoicism, I think we need more of it in society and not less. It is about controlling our expressions and the effect they have on others and in this context and there should be more moderation in the showy displays of emotion we often see, particularly where there is no real relationship with the object of our emotions for example Princess Diana etc.

The absence of ability to comfort is not confined to those who are terminally ill. In my own experience others often have difficulty in consoling and supporting those who are suffering from almost any serious life-problem and prefer not to mention it. I think this is because often folks do not have the skills or willingness to put their own needs to one side for a while and focus on the needs of another in a constructive way.

I don't think anyone should feel guilty for expressing anguish and fear, but there is a time and a place and it is perhaps selfish to do so in an uncontrolled way in the presence of those who we know may be unable to deal with it maturely.

It is a sad indictment that the person referred to seems to have no-one near her who is a good enough friend and mature enough to give her what she needs.

Where is Spiritualism in all this? Other than for the works of mediums and researchers gone by as far as I can see, modern Spiritualism as very little to offer but fine words and historical references. I am sure there are individual mediums out there doing great work but I have seen very little evidence that Spiritualism as a body has much effect or to show of any practical value other than its list of rather trite teachings.