‘The democracy of death’

For this past week I have sat for many hours at the bedside of a dying man. I have sat and watched and waited for this man, my husband’s brother, to take his final breath.

Between us we kept a constant vigil. We sat. We watched over and waited for this man who had never married, who had no children of his own and who apart from his sisters and brothers had few other meaningful associations in the world.

I was not there when he died but his sisters and one brother stayed with him till the end, determined that he should not die alone.

This man had lived the life of an alcoholic, in and out of detoxification centres, constantly on the road, and often in trouble with the law.

I sat at one remove but I was not alone in this. Even his two sisters, who maintained the most consistent and loving presence in his dying days, seemed at one remove, not so far removed as one of his older brothers, who had refused to have anything to do with the dying man on the grounds it was his own fault for the life he had led.

But the other siblings, all four of them, felt differently. They would honour this brother and the parents who bore him however far he had run off course.

A sanitised representation of death from 1959.

It was my own brother who asked me to take the photos. ‘I’m curious he had said. I don’t know what dying looks like.’ Typical of my brother, I thought, this curiosity about the way things work. But I share this curiosity, which I fear I can only feed if I stand at one remove.

When I told my husband on the telephone about my brother’s request, my husband also asked me to take photos. He was overseas himself and could not be there in those last few days.

He, too, wanted to see something of his brother’s dying, but his desire comes of fraternal feelings, not mere curiosity. When my husband sees the photos I expect he will cry.

My sister in law, the oldest sister, sat the longest. She came each morning early with her knitting and stayed late. She knitted a child’s cardigan in bright colours, while her younger sister quilted, stitching together a grey coloured backing onto vivid patchwork.

The oldest brother visited from time to time. This brother was perhaps closest to the dying man, but this brother found it hard to sit and watch as his youngest brother disappeared.

I came to take my husband’s place. I came to help his sisters say goodbye to his youngest brother.

And I told myself it was okay to take these photos. It was okay to provide a record of these last few days for those who could not be there.

My sister in law suggested we take photos of the quilt that lay atop the dying man. Uncanny, this quilt. My sister in law had made a batch of quilts several years ago, which she had given away to charity. One or two of these quilts had found their way into the hospice in which her brother was now dying.

And here in room nine on the bed which they had allocated to him, my sister in law came again across the quilt she had made twelve years earlier. It pleased her to think that her quilt, in soft blues and greys, flecked with red, might now warm her brother as he lay dying.

My sister in law sat knitting alongside her dying brother’s bedside and I clicked my camera trying to capture the essence of this man through his face. My sister in law reminded me of the women who sat beside the guillotine during the French Revolution.

She laughed when I told her this. It made sense to her, watching and waiting for her brother to die, not complicit and yet feeling guilty somehow that her little brother should leave this world before her.

Only one of her other brothers did not visit. He lives interstate, but physical distance was not the issue. He wanted little to do with his dying brother because he was angry.
‘It’s his own fault,’ he said. ‘Look at the way he lived.’

The photos show the image of a man whose face is taut, the cheek bones etched onto skin, a grimace, a look of sadness. The nurses kept him free of pain. The medication was potent. My brother in law was almost oblivious to our presence. His eyes closed, his mouth slack. But I sensed he knew we were there.

I have the photos transferred to my computer screen, images of a dying man and I think of the controversy over Annie Leibovitz’s decision to photograph her partner, Susan Sondheim in her dying days. In the Guardian, Emma Brockes writes about the controversy surrounding Leibovitz’s decision to publish pictures not only of Sondheim but also of her dying father, to demonstrate ‘the democracy of death’.

How could she do this? people asked. What gave her the right? How could she make public to the world these images of a once proud and beautiful woman, broken down into a body that represented only death and decay? Shocking pictures that haunt the viewer and remind us of our mortality.

How would I feel if such images were taken of me, not simply without clothes as it were, but me without the advantage of skin and flesh and hair and carefully applied makeup – not that I wear much of that these days?

How would I feel?

I cannot say.

Perhaps it is like childbirth, this dying time, when other things matter far more than appearance.

Our bodies become the vehicles for our essence and in our deaths nothing can touch us anymore.

I do not post the photos here out of respect, not so much for the man who is now dead, but to his siblings who live on. Like Leiboviz, I have agonised over this decision, wanting to share the face of death with you, but unlike Leibovitz I am not a photographer. My photos, I fear, do not constitute art.

84 thoughts on “‘The democracy of death’”

  1. We were with my father almost constantly in his dying days. He slipped away within five minutes of us leaving him for a brief break. I suspect he wanted this privacy. Unfortunately the memories of him in the last days superimpose any other mental pictures. I was with my mother as she died, and the same applies. The very last memories are the sharpest, in both definition and emotion.

  2. So sad that the oldest brother could not relent, in the face of death, and forgive…..He who is without sin and all that. How blessed your brother-in-law was to have most of his loyal family around him at the hour of his death. I hope he is finally at peace.

  3. (( )))

    it's not art we need, this world, what we need is honesty. that is, i believe, what leibovitz was after. that is what you are after. the photographs are almost irrelevant any more. we should all sit vigil like this out of respect for each difficult life lived and each death that will come, our own included.

    the synchronicity of the quilt is so beautiful it is painful, the story over twelve years coalesced like the pattern of the quilt itself.

    i'm glad your brother-in-law passed while not experiencing pain. hopefully he found in the last lengths of his life, or in death, some peace.


  4. I don't think there is any negative ethical issue over publishing such photos, but more the fear of people and their own impending deaths.

    To me it seems the ethical issues relate more to giving up on a sibling and not being there when needed just because he didn't lead the sort of life that was expected of him. If he'd had any number of diseases other than alcoholism he wouldn't have been rejected. Oh, maybe mental illness would have also caused rejection.

    I don't mind if someone wants to take pictures of me dying. What the heck I'm dying, not entering a beauty contest. The real vs the surreal I suppose.

  5. The democracy of death, what an irony, death, the only thing we can take as something sure in our lives, lives of uncertainty. Depending on the nature and circumstances of an individual´s life, death could be even considered the biggest of all balsams, the biggest prove that, despite all the suffering in this world, there are still some traces of mercy (not my own words, but of some of the many humble farmers and "cowboys" I have met in my life, tough people, pragmatic people, somehow, wise people whose existence haven´t ever had the space for comfort and philosophical issues, but only the crude and raw facts of the everyday struggle for survival, dwelling in a place, a reallity that leads me to ask myself, where the frontier of that what make us humans lie?) The only certain promise that a truce is going one day to arrive, the death, should be the motto of a lot of people whose existence has been miserable and that at the same time, have made miserable the existence of those who surround them. In that way I somehow understand the attitude of your brother in law. Sometimes the only way for dealing with an extreme sorrow, is indifference. I experienced it with my own father, whose only heritage for me was one of scars both in body and mind. A matter of contrasts and personal experience. In this world of misteries and facts that permantly defy our notions of moral and justice, Death can be either end or beginning. And maybe the idea of a picture is a brilliant one despite it all, like journalists documenting our own personal wars, in both victory and defeat.

  6. I feel akin to those who have already written, Elizabeth. Pictures, stories in non-linear form, almost written like icons. If you had permission to take them you probably have permission to use them.

    We have strange and fearful ideas about death in the western world. I have always thought of death as the last stage of life. And we companion others as the time arises — for their sakes and for our own. We are all the same continuity.

    Marvellously written, Elizabeth. Blessings and Bear hugs, for you and the family.

  7. Elisabeth, I have no problems with death images, it is one of our last taboos, and I think Annie Leibovitz was probably the most appropriate person to take images such as these, and especially considering the subject.
    As a nurse I have sat beside many patients in their last hours but oddly I have never had the privilege of watching over any of my own family.
    However, my nursing experience makes me believe that everyone dies at their right time either alone or in company.
    Many people would be distressed if their loved one died at the only moments they were left alone, but I honestly believe they were waiting to be alone.
    My FIL died surrounded by his wife and 4 children and only a short time after his last child arrived at his bed. Oddly, none of the SIL's, DIL's or g'child could be there for a number of strange coincidental reasons which further confirms my belief. It is an event that is imprinted on my mind.

    Many years ago I don't know that I could have sat with my mother with out strained 'alcoholic' relationship and often worried that I would have no choice but to become her carer. Now, 30 years on, my understanding of her, and memories unclouded with alcohol, have given me a different perspective, and I understand each of your SIL's and BIL's reactions.
    Sadly, both my parents died alone in different circumstances and, in spite of my belief, I wonder if anything could have changed that.
    Karen C

  8. You ask an interesting question.
    In so many ways, this post resonates… a family member who did not or could not live well and now, we have just learned, the consequences are upon them.

    I remember seeing an interview with Spike Milligan speaking of death being the taboo of the late twentieth/ twentyfirst century. In the nineteenth century death was different… during my thesis research days I read many detailed accounts of the death of somebody of significance – whether a missionary or an Aboriginal Person. There were no photographs of them after their probably because there were few cameras in those circles, but I suspect that is the primary reason why not.

  9. I wonder of the curiosity about death, the need to present. The need to have a record, proof of a persons final phase. I’m thinking dust in the wind for some reason, though its probably not applicable.
    I really enjoyed this read.

  10. I am so glad you were there with him. The book 'The Dance of Mourning' is all about the history of death, and she uses photos and paintings from far, far back, and talks about how death used to be photographed.

    I was there when my Grandmother was dying. I know how that feels, to sit, watch, to wait.

    Bless your heartxo

  11. When Christopher Isherwood was dying, his partner of 33 years, Don Bachardy, was with him. Bachardy was a portraitist and as he sat by Isherwood's bedside, he drew his lover's portrait. Over and over and over.

    I found one of those images at ArtSlant.

    In a scene in the documentary "Chris & Don: a Love Story" Don Bachardy pulls out sketchpads filled with portraits of Christopher Isherwood from his last days, even ones done of the body once life had left it. It's deeply affecting to see Don turn the pages.

  12. You always know how to say what others sometimes avoid, no matter how much it needs to be said. You have a strong voice Elisabeth, and you write clear enough that it can be understood even if so far away it is barely audible. That is a gift, some words just mumble at extremely low decibels, but yours still come through as if they were Morse Code.

    It reminds me of a dream I had, accepting I was dead, sorry, excepting I was not dead. Not as of yet anyway. I was aware of the presence but only as plays of light, or like that of visible heat when the room was already lit, like a swirling of the air if it had been water and you don't see the fish but heard it and turned to see just a ripple and then it's gone. Even if it is only and inch or two beneath the murky surface. Even if it turns around and is also staring at you when you only see the swirls (even if it takes your picture)

  13. It used to be a custom, I guess at the turn of last century, and before, to always take pictures of the dead. I can remember going through my grandmother's photos and seeing all the dead relatives. As a child I thought it was creepy. Now, what difference does it make?

  14. Dear Elisabeth

    I am intrigued by your choice of title – democracy meaning 'a system of government by the whole people or the eligible members'. I wonder if the death which awaits us all – no ineligible members – is our only true, universal government? I expect you chose the word for its universal, levelling meaning.

    Portraits of the dead are compelling. The portraits from Fayum, of 1st century BC to roughly 3rd century CE, were painted as if alive, but often the subjects were either dying or already deceased. And these beautiful portraits were not visible for long, even if they were on display during funeral rites, as they were incorporated into the mummy of the deceased – sometimes even painted directly onto the body wrappings. Have you seen any? They are eerily life-like, faces from 2000 years ago one could easily see at the shops.

    Sorry, I have drifted a long way from your dying brother in law.

    I am glad he was not alone in the time leading to his death. The quilt on his bed is a wonderful symbol of love offered freely and circling back to the giver.

    How families behave when one of their member dies speaks such truth, not only about the relationship with the dying person, but also with the self. 'Not being able to forgive' seems so much more about the one withholding forgiveness and their feelings about themselves than it does about the dying one, who is merely the target of other's misery.

    A sensitive, searching and loving post Elisabeth.

    Best wishes Isabel

  15. Interesting that there's less of an ethical dilemma over publishing photos of random 'uncivilised' deaths, from war, accident or natural disaster, for example. What's the difference? Death has the ability to turn civilised into uncivilised no matter what its circumstances.

  16. Posting your photos is not necessary as your words paint the picture so well. I too have sat with the dying. It's an awesome process and no-one should have to do this alone. It's not a time to hold on to old grudges. How wonderful that you could be there, and the sisters, knitting and sewing. What a time-honoured tradition.
    I took photos of a relative recently after she died, in case any of the other relatives who weren't there, would want to see them. But no-one asked to. They preferred to remember her in her better day.s

  17. What a sad life, Elisabeth.
    Perhaps as a child he had no supportive love, but only judgmental love. No one sets out to trash their whole future, surely?
    I'm pleased that you didn't post the photos, (altho I realise that you might change your mind on that): as you know, I believe that the dead have the rights to their own lives, inconvenient tho that may be.
    Honesty is a much overrated quality in my opinion, and its antonym is often cruelty. Kindness and respect stand higher in the virtues.
    Susan Sontag's son said that his mother was "humiliated posthumously" by those photos. I would agree. Some artistic ambition overrides …well, judgement, decency, love, consideration, respect and what we call "human values".
    Artistic gifts do not redeem the person: some brilliant artists in all fields have lived cruel and selfish lives. That they made some great art does not necessarily endorse their moral or ethical choices.

  18. I am glad that almost all of his family chose to keep vigil. No-one should die alone and usually there are very good reasons why one lives the life one lives – he must have had his. And yes, you are right. I am sure he would sense that you were there.

    As for the photographs. That is your choice to do and you have that right.

  19. That's a meaningful thought, Elephant's Child, and one I had not considered until now when you mention it: that a person might prefer to die alone, if only in those few brief moments when most of the saying goodbye has been done, almost as if to slip away unnoticed.

    In a way, that's what people do when they die in their sleep, but in such cases they often miss out on the goodbyes.

    Thanks, Elephant's Child.

  20. I agree Molly, it's sad that one of the group should choose to stay away. But maybe, in time, he'll relent, and in the meantime, as you say, the others have been extraordinary in their generosity to such a wretched soul, as the one who lay dying, nor have they condemned too loudly the one who chooses to stay away. I am proud of them.

    Thanks, Molly.

  21. The quilt is a powerful motif for the ways in which these events have coalesced, as you put it so beautifully here, erin.

    And as for art, I sometimes wonder whether the words art and life are like the words fact and fiction: two words we use to distinguish one thing from anther and yet at times, to me at least, they are indistinguishable.

    Thanks, erin.

  22. I agree, Rubye Jack, there are certain conditions that cop such awful and negative judgments, as if a person chooses actively and consciously to become an alcoholic, a drug addict, a gambler a binge eater, what ever.

    Often these symptoms are attempts at pain relief when no other relief is forth coming. And I suspect the one who refuses to become involved is suffering, too, but he cannot bear to know or to acknowledge how much. And so, worse than for the others, he suffers alone.

    Thanks, Rubye Jack.

  23. Alberto, if I were an artist like you, if I were able to handle the medium of photography as beautifully as you do, if words were not my only medium, then I might want to publish the photos I have taken here and allow them to speak for themselves. But I cannot do this.

    I must use my words. But I am grateful to you for standing up for the one who cannot use his words, the one who cannot bear to share the family's grief in public.

    In families like ours, where the curse of alcoholism is riddled through the personalities of many who make the lives of others a misery, it is hard to know when to draw the line at forgiveness.

    Sometimes people confuse their rage towards a sibling with their rage towards a parent.

    In this case, going back through the generations, the fathers, the uncles and grandfathers, though not all, have been alcoholics.

    Some are spared and others succumb. Some fight it and others give in. I do not know that we can say why this is. It may have to do with strength of character. Equally it may have to do with circumstance or the help that's available or a person's ability to use the help available. It's all so complex.

    Thank you for your beautiful comment here, Alberto. I appreciate it very much. I can feel the honesty of your own personal experience flooding through. And I'm grateful.

  24. There's this thing about death, Rob-bear. It gets to us all, both metaphorically, and in the end, literally.

    I agree with you about the western world's fear of death today, as if it's something we can only talk about in euphemisms. I'm sure the fact of our mortality and our fear of it are connected here. And yet, how much easier it would be for all of us were we able to talk about death more openly, were we able to grieve more openly and at the same time be more able to enjoy the lives we have when we have them and feel less of that dreaded survivor guilt.

    Thanks, Rob-bear.

  25. I agree, Karen, it may well be that some people choose to die alone, even when they need not. It's so hard to know.

    I tried to speak to my brother in law about my absent husband's best wishes to him and his urge to give his brother permission to go. I have heard that some people need a sort of permission to die.

    My brother in law seemed to accept my words at the time. He could not speak but he nodded his head. Even so, and even with his sisters likewise encouraging him to feel he could go, he hung on for over a week in the most dire of circumstances. I can only imagine how much he weighed in the end, not much more than a child. He had not eaten for over two weeks when he died. It amazes me how long a body can go on even in such circumstances.

    Your comment is so poignant, Karen, especially in relation to your inability to be with your parents when they died.

    Often when our parents have let us down, it seems to me it is much harder to feel well disposed towards them when they go. But still, even when we are adults, our parents' deaths can leave us feeling orphaned.

    Thanks, Karen.

  26. Quite thought provoking. I saw my father about a month before he died. My younger brother asked me to visit my father with him in the very last days, a three hour drive away. I did not. I wanted to remember my father in earlier times, not as a shadow of what he was. I might think the same way come the time for my death. That is not wanting people around to see me at my worst, assuming I am unlucky enough to not die of heart attack in my sleep.

    Whatever, you did good.

  27. This is a poignant and moving piece without being mawkish. I smiled at your sister-in-law's response to your remark about knitting at the Guillotine. Even at such tragic times there is humour.
    I suppose we are all curious, maybe fearful, about the manner of our passing. It is, of course, inescapable and entirely, completely personal to the one involved in the process of dying.
    Perhaps your brother-in-law was comforted to be part of his family once more and delayed his departure for that reason.

  28. I'm the living dead at the moment: cough cough cough. Cigarettes, roll-your-owns. "Port Royal" tobacco if you want to know.

    I won't be dying in bed -with or without an audience; I'm keeping a gun to blow my brains out.

    Oh, how unromantic.

    Yes, typical troll.

  29. the fading away of the body releasing the essence of the soul couldn't be art as much as a moment to be opened up and celebrated . . . . not necesarily with trumpets and drums as much as with the small joy that comes with the letting go of suffering . . . . .steven

  30. A bloke died suddenly in his car at Chadstone shopping centre, he got five days of parking fines on his windscreen before they found out; they just kept putting them on. Bureaucracy doesn't falter, you're not dead until you can prove it.

  31. I suspect Spike Milligan had a point, Christine, about death as the great taboo of the twentieth century, and now the twenty first. It flies in the face of our desire for perfection, I suppose.

    And yes, I agree, the consequences for the family member who did not live life as some think he should are enormous, ostracism and now an early death.

    Thanks, Christine.

  32. As an artist you'd most likely be aware of our need to keep a record, especially a visual record and perhaps even have thoughts on Annie Liebovitz's view that she did not like to photograph close friends as a rule. She feared that her photos would not show them in the light they like, and she did not want to hurt their feelings. That's also in part a dilemma for the writer, especially the writer of non-fiction.

    Thanks, Anthony.

  33. Don Bachardy's drawings of Christopher Isherwood as he lay dying are very beautiful, however disquieting. Thanks for alerting me to them. To me they seem all the more poignant given the connection between the two men. Perhaps it's a case of the degree to which true love seeks to preserve.

    Thanks, Glenn.

  34. Thanks for your kind words here, Dusty. I'm glad my words make sense to you. The fact that they should evoke the memory of a dream is heartening. And what a dream.


  35. The tradition of taking photos of the dead is also very much within my family, Manzanita. In part I think because my parents travelled across the world from Holland to Australia and could not be there for the deaths and funerals of their loved ones, but even before that in Holland and elsewhere in Europe I gather people typically photographed their dead.

    It seems creepy to us these days but perhaps it's because we are not familiar with it, or perhaps again it's that contemporary fear of death.

    Thanks, Manzanita.

  36. I had a phone call just now, Isabel, from one of the sisters in law who tells me that the wayward brother from interstate has contacted her and thanked her for making their brother's death the experience that it was.

    He may not come to the funeral but at least he is reconciling himself to the siblings that live on. A good thing I think.

    I have not seen any of the images you describe here, faces from 2000 years ago. As you say they must seem very eerie. I have an image in my mind from pictures of the Patagonian mummies I saw in a book a few years ago. They too are eerie. To think that these people once lived and breathed as we do today, only thousands of years ago.

    Thanks for your kindness, Isabel.

  37. I agree, Red. We seem to hesitate less at the sight of dead soldiers or political tyrants and the like than we do of ordinary people.

    Perhaps it's that old idea that somehow death is fair enough in war when directed towards the soldiers or the instigators. I'm not so sure.

    I watched a documentary about the American cvil war and the death photography in it was horrific, not because the soldiers were dead but because of the way they died.

    Thanks Red Nomad, for this additional and sobering perspective here.

  38. Some years ago my daughter bought me a book of photographs by Véronique Vial called Women Before 10 a.m. which, as the title suggests, consists of photographs of women—mostly actresses and models—taken before ten o’clock in the morning. I thought it was an inspired choice and there are some lovely photos but when I read your post the two that jumped to mind were of Demi Moore who, partly because of time constraints, asked to be photographed at her mother’s house; her mother was dying at the time. Vial writes in the notes, “It was not the crash course on death that I imagined, but love.”

    Needless to say all I can find online are some of the prettier photos. I have a short story about a man who photographs his mother after her death. The story was called ‘Camera Obscura’. An excerpt:

    Probably the most difficult pictures I ever had to take were actually of my mother. She was dead at the time so it was a relatively straightforward shoot. The undertaker let me in and, to the man’s credit, never expressed the slightest sign of surprise when he saw my bags. I suppose in that line of business you get used to stifling your true feelings. I think for me that was when I began to realise where my photography was going. They used to make death masks of the greats. I remember seeing one of Beethoven and Chopin too I believe. I wasn’t just capturing a fleeting moment that was gone and forever lost otherwise, I was acknowledging the limitations of humans: it takes us time to see things, sometimes a very long time. My mother never liked to be photographed when she was alive. She would always object to my pointing “that thing” at her. Yes, take pictures of people if you have to, just not of her. There were times when she would pose – if an event were to be recorded – but even then she loathed taking centre stage. The best I could hope for was to capture her in a group shot and edit out the rest in the darkroom and I only got away with that the once and, much as she berated me for it, the picture still sat on her mantelpiece till the day she died. There were no flies on my mum. When I was a child I looked at her with a child’s eyes. Now I am a man and things are starting to come together. That would not be so easy for me if I only had a man’s faulty memory to rely on.
            No one ever saw that last set. None were ever published though they were among my best work. I collected them for myself under the title “Still Life” and I look at each of those metaphysical moments faithfully on her birthday every year. I’m not sure what I’m looking for but as I get older they seem easier to look at and the looking makes more sense.

    I did not photograph my mother after she died but that is so typical of me. Considering how much I enjoyed taking photos over the years it is surprising—and a little sad—how many things in my life have gone unrecorded.

    I am a writer though and, as I’ve mentioned before, when I find myself in situations like this the writer in my takes control and so it is not hard for me to imagine a photographer’s need to unpack his equipment and set to work. That is the beauty of being a writer; we’re much less in your face. I have only witnessed two deaths, my mother’s and my last mother-in-law’s. My poem ‘Losers and Winners’ is about that time (it's in the book) although it was years later I wrote it. I’ve never written about Mum’s death, at least not yet.

    I have no problem with Leibovitz’s decision. Nor do I have a problem with Lou Reed’s album Magic and Loss inspired in part by the illnesses and eventual deaths of two close friends. As he says in the final track:

          There's a bit of magic in everything
          and then some loss to even things out.

  39. Sorry Lis,
    I am conscious my response sounded a little abrupt… we learned this week that my husband's children's mother is ill…to what extent we don't know -she is beginning treatment this week. It is terribly terribly sad in so many many ways. Your post hit a spot!

  40. Such a brave thing to do, Elisabeth, to look through a camera aperture and photograph the dying. I don't know what 'art' means in this context. Who decides what is art in this context?

    The problem for me with the alcoholic narrative is that it is a single story and I know that there are always multiple narratives there beneath the single story. Untreated depression, child abuse, mood disorders, some frightening secret, some crime, some private unrevealed anguish, the unlived dreams. Despite the photographs, those other stories may have gone with him to the grave.

    The quilt moves me, the intimacy of a sister's homemade quilt making its way to him, so without family. All the stories that go into a quilt, that patchwork and the bringing together of shapes, the comfort at the end. The sister knitting, not Madame LaFarge, no guillotine, no sadism or triumph — you not her as voyeur, recording the dying in a dispassionate lens.

    Distancing and detaching. The brother and his unforgiving anger, perhaps that too a species of grief.

  41. Such an interesting blog so full of unanswered questions. Your brother in law did not die alone which I feel is very important so good for you all who sat on vigil. Somehow I feel that dying alone must be so very lonely. You don't know if he knew you were there but he may have felt your presence.

  42. I've never yet been in the situation you found yourself in, Elisabeth so I can't – or wouldn't dare – presume to make a judgment on whether taking photos is appropriate or not.

    LC sat by his mother's bedside and was there when she died and I remember stroking my grandfather's face as he writhed in agony, wishing that I could unplug something, inject with something anything to give him the peace and pain-free exit such a kind and dignified man deserved.

    My best friend in Oz is taking weekly photos of her mother who is now in a nursing home and suffering from Alzheimers, lack of mobility and a recent heart attack. They are disturbing to see (she sends them to me and other members of her family who aren't nearby) but I respect her decision to take them.

  43. I wasn't close to either set of my grandparents, who are the only family members I've lost to death. So I don't know what it means to sit and wait and watch death come. For that reason, I am a lot like many other people in that death makes me very, very uncomfortable. My first emotion was pure dread when I read that you took photographs, because I was terrified you would post them. And while I wouldn't judge anyone who did post photos (people who condemn Leibovitz's decision need to know it was her personal choice and they need to respect that), I can tell you that I'd have a very, very hard time with it.

    My fiancee's brother drowned, saving a little boy's life, when he was 25. My fiancee took pictures of his brother's body in the coffin, something he said helped him deal with the grief. Again – I do not understand that. But I am cognizant enough to know that I don't understand because I have never had to, and I have no right to push that privilege onto others.

    We all grieve, and remember, in different ways. I don't think anyone has the right to say who is right and who is wrong.

  44. Sitting with my brother in law at his bedside as he lay dying, Juliet, all the grudges seem to melt away. Not that I held many towards him. As I keep saying I sat at one remove, but I could see this transformation in his sisters and hear it in my husband's voice every time we spoke about it on the telephone long distance, at least twice a day during this difficult time.

    You are so right about the need to sit with others during this special and painful time. This time when we balance up the dying with the living.

    Thanks, Juliet.

  45. You're right, Frances, I do still feel ambivalent about the publication of those photos but it feels right to have kept them for those who knew and loved my brother in law.

    As for the lovelessness of his life, it was not entirely so, but perhaps there were other things that got in the way. He was the youngest in a large family. His parents may well have felt worm out by the time he came along. It's not an excuse just a tentative beginning hypothesis about why this son in a family of four boys should have carried this particular load of suffering so great that his life became one of alcoholism. I do not judge here. I know how hard it is to live in a world filled with difficulties and pain. I know how easy it is to make mistakes

    Thanks, Frances.

  46. The decision to publish the photos or not was not an easy one, Pat. I prefer to face things as best I can and to me sometimes an image speaks more than words.

    Equally, as Frances suggests above, it is not straightforward. Her concern lies with the rights of the dead, and mine is with the needs of the living. They can seem to clash at times.

    In any case, I appreciate the decision was mine to make in this instance. And it's a decision I did not make alone. As I often do in such instances I first consulted some of my children, and took their advice.

    I don't always take their advice, but in this instance, I erred on the side of inaction. There's this wonderful saying that I often draw upon: 'When in doubt defer.' Now is not the time

    Thanks, Pat – Weaver.

  47. I can understand your wish to stay away, Andrew. It would not be mine, but, as you say, you prefer to remember your father in better times.

    And maybe you'd prefer your friends and loved ones did not see you in that dying state also, but you never know. You might find great comfort in the companionship of others at such a time irrespective of how you look.

    It's funny how much the way we look is a subjective thing, not necessarily based on the reality of how we might appear to others but of how we feel inside.

    There are days when I can feel 'ugly' and it's not necessarily true in relation to my appearance. It has more to do with feeling bad inside. And it can shift so that in a matter of hours I no longer feel ugly without changing anything of my external appearance.

    I've moved off the track here, but I was thinking about the old cliche, 'beauty is in the eye of the beholder' and perhaps the same applies to death.

    From what I understand, often when people are dying they withdraw from others around them, they seem to prefer to be alone. They usually towards the end have little say in whether others stay with them or not. Even so they can seem to close in on themselves.

    I fear we tend to over-interpret the experience of those who are dying in much the way we might anthropomorphise the experience of animals. We often don't know how the dying person feels, we can only intuit it from our own feelings.

    Thanks, Andrew.

  48. Humour is a great comforter, Janice, as you say ,and my husband and his siblings are a particularly humorous lot. They can be irreverent and downright mischievous in the face of the sober and sensible. It's one of the things I most value in them all. Their straightforward honesty and ability to laugh in the face of great sorrow and pain. They are neither too precious about themselves nor do they expect others to be likewise.

    Thanks, Janice.

  49. Your comment doesn't feel troll-like to me Robert, but if I dare to take you seriously, even in your humour, you will perhaps turn around to mock me.

    Even so I'll try to respond. You might intend to blow out your brains rather than live your last days in a death bed with or without an audience but instead there might come a time when you don't get the choice.

    My brother in law had plans for how he would die but once he got into the hospital system he lost most of his ability to choose and along with that his body collapsed and he lost the capacity to act.

    Thanks, Robert. Your comment feels sad. My father died from the consequences of emphysema and it was not a pretty sight. I can still hear his cough, Craven A, filter tipped, three packets a day.

  50. I felt enormous relief, Steven, after my brother in law died. And I believe it was a relief for all of us to see him released from his suffering and for us to be released from the long slow and awful death watch we needed to attend.

    And you're right, Steven, it was not art, it was life.

    Thank you.

  51. I agree with you, too Ms Moon, In time the photos might well lose their immediacy as personal mementos and could then become reflections of art, but not yet, not now. For now they are still too raw, too close to the actual event, and to the man who once was.

    Thanks, Ms Moon.

  52. When I started to blog, Cheryl I chose not to put up photos, relying on my words alone. But more recently I have tried to introduce at least one photo with each post, not only to break up the text, but also to exemplify something of the issues with which I grapple.

    This post proved the most difficult. It is so hard to represent death visually without risking an affront. I am not interested in gratuitous displays of anything that disturbs people and yet the photo of my dying brother in law seemed to beg for inclusion. Having made the decision to leave it out, the best I could do was try to describe it.

    Thanks Cheryl. It's good to see you here.

  53. I'm with you here, Robert. Bureaucracy does not falter in the face of death, not like the people who make it up. Once the machine of the bureaucratic mob gets into action, mechanised and determined, nothing is sacred.

    Thanks again, Robert.

  54. There are so many things in your post. To me, taking photographs is something which can be both valuable and legitimate, but obviously not in every situation.
    I took photographs of my father during his last few days. He was bedridden, and knew he was dying. He said he did not want to be alone. His large family and grandchildren gathered around. He died while no one was in the room. We children did the daytime and our stepmother cared for him at night, but we had not set out when we received the call to say he had died.
    I look back on those photographs now and they are very precious to me, although confronting, perhaps, to others. I made a sculpture, from memory, of my father's dying, which I think my children cannot cope with.
    But I could not have taken photos of my husband as he died. That was too intimate and intrinsic to my life, all my attention was focussed on him.
    I think the dying are owed truth, empathy, love and and our presence and touch. Awesome is an overused word, but the passing from life to death cannot be described otherwise.

  55. Camera Obscura, Jim, that's a powerful piece of writing. In my mind's eye, I can see the man at his mother's bed unpacking his equipment preparing to take the photos of his mother now dead, photos he could never have taken while she lived.

    It put me in mind of my own mother, who by way of contrast loves to have her photograph taken. Even in death I fancy she would pose. I say this with tongue in cheek. I cannot imagine my mother's death even now, and I was far away from him when my father died.

    Maybe you might now find a way of writing about your mother's death, well after the event, when images can come back unexpectedly once you lose yourself to them. I needn't say this to you, Jim. You're a writer you know what I'm talking about. That was part of the difficulty writing this post. It's still so raw it's hard to manage the multitude of freshly emerging memories.

    Thanks, Jim

  56. I didn't find your comment abrupt, Christine, so you needn't apologise.

    I can only imagine how hard it is for your family at this time. It sounds like another situation where some are close, the immediate children for instance, and others more removed, as I was with my brother in law.

    It makes for a strange intensity. My best wishes to you at this time. Thanks, Christine.

  57. I didn't want to present the alcoholic narrative as a single story, Mary, but there was no time to allow for more details and I wanted to somehow get across the reason why some people might be less compassionate than they would otherwise be.

    I hate the notion that all alcoholics are the same. They're not, any more than all diabetics are the same, all cancer sufferers are the same, all schizophrenics are the same.

    My mother inflicted this notion on us as we were growing up. Along with her favourite mantra. I've blogged about it before: 'Sons of alcoholics become alcoholics and daughters of alcoholics marry them.' As if we are all destined to the same predictable fate, which is ridiculous.

    I suspect one of my brothers out of five may be an alcoholic and only one of my sisters may have married one. It's not to say we don't many of us struggle with an overlay of anxiety about alcohol and maybe even a tendency to drink too much at times, but alcohol does not run our lives the way my mother predicted. And my father's difficulties went well beyond his alcohol addiction.

    I agree with you as well about the idiosyncratic nature of grief. People can get into rages when they mourn, rather than cry. And sometimes people avoid situations when they feel grief stricken.
    Whose to say there's only one way to deal with our grief?

    Thanks, Mary La.

  58. I think my brother in law knew we were there, Cuby Poet, but you're right, we will never know for sure. In any case it was a comfort for us to be there with him. These sorts of efforts cross backwards and forwards.

    Thanks, Cuby Poet.

  59. Oh Elisabeth, I didn't mean that YOU were putting out a single story — rather that any mention of 'alcoholism' inevitably brings to mind that reductionist over-determined narrative of the 'town drunk'.

    Just wanted to say I came back to give you a link to a review of Roland Barthes' Mourning Diary and his search for a photograph of his beloved mother, but I can't find the review I had in mind. What we search for in photographs of the dead or dying, a fascinating quest.

  60. It's a complex issue this one, Kath, the issue of photographing people in vulnerable positions. It's akin to the business of writing about people in vulnerable positions, but maybe seems more blatant. Perhaps it's the ease with which we take photographs and in which we can view them, whereas reading and writing take time. They are not as immediate.

    In any case, I recognise how hard it is to view such images. To me it can be like changing a baby's nappy. It's okay when it's your own baby but harder when it's someone else's.

    Thanks, Kath.

  61. I agree Tracy, grief is such a personal matter and the idea that someone might get relief by keeping an image of their dead loved one nearby might well be their way of dealing with the loss.

    There may be a fine line between grief that is constructive as in mourning, however long it might take and complicated as it might seem, as opposed to the grief that comes on endlessly, like Miss Haversham's grief in Great Expectations.

    Grief is 'designed' I think to help people move beyond the trauma of loss but sometimes people can get stuck in it. But there's little use in casting harsh judgements.

    Thanks, Tracy.

  62. I couldn't agree with you more Persiflage, that as you put t so well: 'the dying are owed truth, empathy, love and and our presence and touch'.

    I can understand your appreciation of those photographs of your father in his dying days, Persiflage. How precious they must be to you. And that you could not take such photographs when your husband was dying.

    As for your children's misgivings, it's harder for younger folk, I suspect. The closer we get to dying ourselves age and experience wise the more readily we can accept these things without squirming.

    I, too, remember finding photographs of my dead relatives off-putting when I was young.

    Thanks, Persiflage.

  63. I'll try to find roland Barthes' Mourning Diary, Mary. Thanks for alerting me to it, and please don't imagine I was thinking you found me reductionist in my thinking. I agree with you: how easy it is to reduce the story of people's struggles with alcohol to one simple story, when their stories are multiple and complex.

    Thanks again, Mary.

  64. I stayed away when my mother was on her deathbed, partly because I didn't know, or wasn't sure, that it WAS her deathbed. Nobody involved actually used the term "deathbed". Nobody actually used the word "dying". Instead, hints were dropped, hints that I didn't pick up on. Or did I? Did I use the vagueness of a hint as an excuse to stay away? I loved my mother, but there were unresolved issues between us. Maybe I was afraid of that final conversation. Suppose, on her deathbed, she had said something that unnerved me, even angered me. I can imagined the reaction of some poor nurse walking into the hospital room and seeing me yelling at a dying woman. The whole thing was also complicated by the fact that I lost my job shortly before her final illness. Most of the time I think of myself as an agnostic, or, if I'm really in a pessimistc mood, an athiest. But at that moment, I didn't seem to be either. Instead, I thought, God wouldn't POSSIBLY let her die knowing her oldest son was out of work. Well, God, or fate, or blind chance did just that. I regret not saying goodby to her, but who knows if I would have even had I been by her bedside. According to those who were by her bedside, she was zonked out of her mind on drugs much of the time, as are most people who die in a hospital. If there is such a thing as life after death, I imagine for her it was like emerging from a stupor, not realizing she had died in the first place.

    I've been a fan of Annie Leibovitz's work since she first appeared in Rolling Stone way back when. As for Susan Sontag, she was a gutsy woman who dared to say only a week or so after 9/11 that it might have been blowback for US foreign policy. You can imagine the shitstorm that raged over THAT comment.

    Sontag thought art must rise above the personel, and Leibovitz disagreed. Opposites attract.

  65. This is such a poignant comment, Kirk, it's hard to know how to respond.

    I recognise the feeling of not taking a hint in the belief that there is no hint there. Rather like the woman who has no idea that her husband's having an affair and vice versa, even when it's staring them in the face.

    This is not quite the analogy I'm looking for in relation to your not recognising your mother's pending death. As you say, there was unfinished business between you. Now I suppose in some ways it remains so. To me that's sad.

    I know that Sontag and Leibovitz were both feisty women in their own rights. I did not realise they held such divergent views.

    Thanks, Kirk.

  66. I took several pictures of my mom in her last weeks on earth when we knew she was dying. My sister had a baby and even death could not cover the joy in my mom's eyes. I also took one the day before we decided we could no longer look after her and had to put her in Palliative care. It was to be the last picture taken of her. I have mixed feelings about it. You can tell she is dying but the picture is so raw and beautiful. It hurts to look at it but it also hurts to not look at it.
    When she was actively dying I wanted to take a locket of her beautiful curly hair but certain family members didn't approve so I didn't. Even after she died and I had left the room I went back to cut a piece but then I felt like I was desecrating her body. I wish I had a piece of her hair now.
    Death is a strange thing.
    It is so taboo. We take hundreds of pictures of birth but none of dying. I think we have gone so far into the "never show weakness of defeat" we don't want to allow it in. But why? We are all made of flesh and blood and dying is our destiny. Maybe photos would help people in the process after a loved one dies. I know the one photo I have of my mom helps me. It helps me see the most beautiful woman I ever knew coming to her end of this life and ready to go one to another. It isn't morbid or shocking. It isn't intrusive or creepy. It is a picture just for me. It is precious.

  67. Dear Elisabeth, I have once worked as an orderly at a retirement center, the end station for so many people. I have never seen anyone die there, as my time there was short, but I saw many on their dead bed. I disliked working there with my entire being.
    I feel that death is a part of life, whether we like it or not. Once I am gone, I care very little about who sees me or not, or in what state I am in. After all, the privacy we feel about our bodies is somehow connected to the soul, I feel once that is gone, the body is nothing but a shell.
    I am so sorry for your loss dear friend,

  68. My father was Catholic, when he died the funeral was foreboding, dark and disquieting. My mother did not convert and embraced life. So when she died three years later, she had already made arrangements for cremation and an uplifting memorial service with family and friends. My mother's was the most memorable of experiences with death.

  69. You're so right, Birdie, death is taboo, akin to illness and disability and all the things that bespeak the frailty of our human bodies.

    I'm glad you managed to take some photos of your mother as she was dying. I can understand how precious these must be, even if they are painful to look at. How sad it is that you did not get a lock of your mother's hair.

    The preciousness of these reminders of those we have loved who have died is so underestimated. I reckon again it has to do with our fear of facing our own mortality.

    Thanks, Birdie.

  70. That's a striking contrast, Robert, between the funerals of your father and mother.

    We had something similar by way of contrast when my husband's parents died within about three years of one anther. Both were Catholic celebrations but the funeral for the father in this instance seemed to me more lively and it, too, was the second funeral in line.

    Maybe it's also harder when one parents remains behind to mourn the loss of their spouse. Once both parents have gone it is a different experience I imagine. Of course religious persuasions must also affect the nature of the event.

    Thanks, Robert the skeptic.

  71. Thank you for your condolences, Zuzana. It sounds like it was a painful place in which to work, that nursing home. They can be such dreadful places and the specter of death and decay must hang over them – at least over some of them – like a constant cloud.

    I'm with you when it comes to the end of our bodily presence, even so it's still hard for me to imagine being the dead or dying one, despite my knowing it's inevitable one day.

    Thanks, Zuzana.

  72. We all react in ways that are very unique. I don't know why we are so pulled and pushed emotionally when we face another individual dying except perhaps by fear of our own time.
    We seem to put guilt and perusal suffering into the scenario.
    Grieving then becomes a process that has to be mastered in order to be at peace.

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