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.
******************
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.
Sara. This is a beautiful thing you’ve written, I am crying for everyone I’ve known who have gone through what you’re going through, as well as for you. You are so right – we see grief and anger etc expressed so well in other cultures such as the Middle East and we shy away from it as being distasteful. You’re so right that suffering, death and loss are giving lip service to and not really dealt with.
I am so sorry that you’re going through this (I follow you on FB and I wondered when you said you spent a lot of time in bed, but felt I would be prying if I’d asked). I’m also sorry that I live far away from you, and don’t know you personally, because I for one would love to help you out with those guilt-free errands, company and an ear. As it is, I’m happy to be an ear in the ether, when you again get tired of being sweet and stoice and silent. It’s the least I can do to repay all the enjoyment you’ve given me with your writing. You have my email above, and I’m Michaela Cladingboel on FB.
x
Don’t be silent and stoic about how you are feeling. It is what it is, and the way you are feeling is valid and needs to be expressed even if only for your own well being! Your voice is so eloquent too! There is a lot fo value in what you have to say about this subject and it would be a waste not to hear it.
I am one of those people with a chronic illness, the onset of which almost resulted in me dying. The illness is not going to go away. It’s here every day for life. The only plus for me is that it is probably not going to kill me directly, but the comorbid disorders will get to me eventually. Some days are good and other days are completely unbearable.
I know what you mean about people drifting away and apart, or expecting silence from you. Sometimes it seems like if I have said some part of me is hurt or I am sick one day, and then I mention it again the next day I am being a whiny complainer. I see people’s eyes glaze over. I can see their sudden impatience with me. I could almost hear them say “Damn, she’s complaining again! Why doesn’t she just get up and act well?” Never mind that they know that what I have does not go away and the complaint is valid.
Many people have a limited capacity to understand chronic illness, death, and the change that occurs with somebody when they have discovered their mortality. I don’t know if that is because it puts them in touch with their own mortality and they become uncomfortable, whether they just have a limited amount of energy to extend towards thinking about or coping with illness and death, or if they (some of them) are too self involved to do more than give a cursory gesture of support to the person going through the process. Maybe nature instills in us an instinctive avoidance of the subject of death?
I don’t have a lot of faith in humanity so I don’t see much chance of changing that in most people. I don’t see the quality of life improving much across the board for our ill and dying. However there are people out there that give and give and give of their caring their time and their understanding.
I hope that you find those people in your life that can really be present with you, and be supportive without the strings of guilt. Death is as much a part of life as birth, and I hope that if you cannot forestall it, you find that person who can make it peaceful, if not joyous in some way.
Sara, this is amazing.
Please, please get this published somewhere in print. Any national publication will do! So many people are deeply afraid of death and dying, everyone seems to think that it is catching. Grief is buried and never expressed publicly (except for those forty minutes at a funeral) and I believe that it’s one of the great sadnesses in our society that so many people do not know how to deal with death and terminal illness.
I’m only 24, but have probably witnessed what people would call ‘too much death’- I have been the one person present for a few deaths, and one among many for a few more. I refuse to be comforted by people who are ill, because I know that they need comfort more than I do.
It’s a selfish thing to want a terminal patient to make *you* (general you) feel better about the fact that they are dying, and it is a reflection of how selfish society has become that it is expected.
Please don’t be sweet and stoic- your life is not about what other people want right now, in fact, if I recall correctly, nobody’s life is ever about what other people expect from them.
Also, I’m coming to Tasmania next month some time, if you need someone to clean the kitchen and dig in the garden for you I’ve got at least three days spare so you can chill and write and have cups of tea bought to you.
*hugs* from across Bass Strait.
–Rhi
Stoicism is overrated, I agree. Don’t be silent – it’s selfish, I know, but what you write here about life and dying helps me realise how cruel we are to people who need to be treated with love and care and support, not fear and some fairytale pretense that “everything is going to be just fine”.
(And I agree, somewhere along the way we lost the reality of death. All those rituals that people had around death and dying gave it a legitimacy in the community. People who were dying weren’t placed away from everyone else, their deaths were part of family life in the same way that their births were. Now we treat it like some dirty secret – as if it was some kind of communicable disease.)
Sara, I have watched two of my mum’s closest friends die from ovarian cancer. I asked her what I could do to help, and she told me exactly what you’ve just said. To go and visit, run errands, clean up, or just sit and listen. They were both lucky to have mum as a break from the rest of their friends and family, who all needed the comforting you describe. I could never understand why those friends felt that an hour with their sick friend meant an hour of counselling for *them*. Before they passed away, each told me that mum was one of the few who they could “be themselves” in front of. Scared, hurting, angry… raw.
Many of us wish we could help you with your wonderful garden, or to help in some way. We’ll keep on reading, and supporting as best we can. I think Dylan Thomas said it best…
“I found myself in the completely unreal situation of having, over and over, to comfort people when I told them I had cancer.”
Upon reading that, I found myself sitting bolt upright and trying my damnest not to shout, “That’s exactly it!!” I thank you for giving me the words I could not find. While I do not have cancer, I was assaulted a couple weeks ago in a Margaret Rivers manner and have gone through the agonising process of explaining to people as best as I can (which is terribly inadequate to them always) what I experienced upon their oh-so-polite demands for a synopsis. Because “it will make you feel better to talk about it”, which I should like to call a Bull Shit on, thank you. It has been my duty to placate and to ensure that everyone else feels comfortable with the situation, that they feel useful and as though they’ve done their share. They beg for my screams and tears when I can only dream of Leave Me The F*ck Alone. I would gladly give you my mourners and shoulder your enforced silence.
I do realise that assault and cancer are two entirely different jars of jam, but I wanted to thank you for explaining the phenomena I have been unable to name.
Hi Sara – I live in the Hobart area and would like to offer you my help in any way that I can – I am a single mum of two teenagers so don’t have a lot of time to spare but would still like to help you out – I am capable of garden chores, house cleaning and I work as an accountant – please let me know when and how I can help
I was told by a caring relative when I was having a bad day that we come into this world on our own and we leave it the same way ,I am sure she meant well.I have been stoic ,brave, pulled my self together and put on my brave face as long as I have my lipstick on it doesn’t matter has been the mantra.But it doesn’t matter it hasn’t helped its going to happen anyway- death.
Dear Sara
Your words are so bare and true that I want to stand and applause you. You out into words what my thoughts are on death and dying. I agree 100% with everythign you wrote. If I lived closer and you allowed me I would visit. On the good days and the bad. I used to be a volunteer with the local palliative care place, but that got shit down due I think in no small way to the modern day societies beliefs.
I have chronic ill health now and find that I am treated jsut as you outlined. People can not accept that I will cark it sooner than later and I find that I also have to put the brave front on. Of course my condition can be cured if I amke the right chlices, so they say.
Thanks for cutting out the BS.
Did stoicism come from the English stiff upper lip syndrome? Many other cultures don’t treat death & dying with the “hide them away” attitude.
I have been & always will be here for you & yes I do wish I lived closer so I could come & hold you hand, give you a hug & actually talk to you about your feelings rather than by writing because unlike you, my words always seem so inadequate & never say how I feel.
Sara, I live too far from you to offer any actual help, which I would gladly give otherwise. I can only send virtual hugs and support.
When my Nana died, we stayed with her, 3 generations of us, it is not scary to be with someone who is dying, especially at the end. It shouldn’t be, it should be the time to appreciate their life & love with them as they are leaving and show that.
I sometimes wonder when we [humans] became too important & busy to take the time to listen to people or just spend time with them and make them feel as if they are important and we care about them 🙁
I recently lost my cousin to cancer – it was fast, brutal and cruelly dehumanising for him and his family. He was the first of my generation to leave, and it has left us all very aware of our humanity and mortality. I have yet to call his wife and children to check on how they’re coping. I didn’t call him – I tried contacting him over email/internet – but I was too chicken to use a phone.
I know my cousin didn’t die alone. He was a beautiful man and was adored by his family. I’m not concerned for him – he’s fine now – but his family will suffer his loss for a long time. His daughter is younger than you were when you lost your mum. I can’t imagine the pain his wife feels.
What you’ve brought up with this is completely barefaced truth – and I am ashamed to say I’m as guilty as anyone of ignoring what I find difficult to face. Denial is a much easier place to exist.
Please don’t be silent again. Now that you’ve broken the silence and brought our attention to it, none of us should allow it to settle again on those we care about. I’ll be checking out a particular phone number soon – thinking of them really isn’t enough, is it…
Thank you for breaking your silence, Sara.
Sara, please, never feel you have to be silent to make other people comfortable, live with as much noise as you want! If you’ve only got a short time use it to it’s full extent. Ross, TK and I will be in Tasmania in August, let me know if you’d like some of our sort of noise to visit!
Much love to you.
Reading this brings home to me how lucky I was last year with my Dad. He died from mesothelioma and spent the last week of his life in the Pallative care unit at Prince Charles Hospital in Brisbane. The nurses there were the most amazing people I have ever met. However the thing that got me was the people who came to see him. The day before he passed away, it was like everyone knew, there was a stream of people in and out his room, talking, laughing and sharing. After he passed away everyone rallied around my mum and I, I dont think we cooked for a week and half, people were bringing food, and coming over and just being with us. Which was an amazing thing.
I am also in Hobart and if you need garden help please just yell in my general direction. I have been fascinated with your garden ever since I stumbled on your blog years ago. Its inspired me to try to grow my own food as best I can.
I send you wishes. I hope your time, when it comes, is not as lonely as you fear. I can’t imagine what you are going through and can only imagine your frustration. I have felt tired and frustated (with myself) around ill and dying friends – not knowing how to help, not knowing how to get past my or their reserve, not sure how to give them the time they need. And for some reason, unable to overcome the fatigue that comes over me even while I know I am not the one suffering. Why do I get tired when I am with someone suffering? Is that my lack of training in how to be with the dying or the ill? My lack of ability to express my emotions and to experience theirs? I expect so. I have no doubt it is a skill that needs to be taught and practiced just like any other. I sat with my mother as she died. Luckily I had several other family members and we shared the time as we all were tired. We all felt overwhelming relief when she died even though we all loved her dearly. My father was not with her when she died – he missed her by about 5 mins. I think she knew and passed away before he arrived. He also was tired. He sat with her, he in his late eighties, for four or more hours every day, having driven to see her. She would (having lost speech and much more in a vicious stroke) hit him, turn her back on him, shake her finger at him and ignore him. I can only imagine how angry and frustrated she was and how lonely at night, alone, unable to have him with her. Watching him leave each afternoon knowing she had a long lonely and humiliating night ahead of her. One of my sibliings saw her rarely in her last weeks – no longer coping with the desperate and longing looks she gave. The silent begging to be taken home. And a system that could not and would not allow her to leave the hospice. Yet, the hospice treated her with great dignity in her last days – setting up a bed for us to sleep beside her (and yet, none of us did – how sad but none of us could deal with it – we went home late and returned early refreshed, while she slept alone). I do feel guilty and also I do not, as I know we did our best. We did the best with the knowledge and the capacity we had. She died surrounded by her children and peacefully. I guess I would say that I hope you can be patient with your sadly deficient friends. Often we mean well but we don’t have the coping skills nor the skills to nuture and help. And we are all on our daily treadmills and few if any of us step off them so that we can have the time and energy for giving. I am childless after many years of trying to have children through IVF etc. I very quickly discovered not to share that experience. My friends and family were very sensitive and caring for the first couple of rounds of IVF. AFter five years I had few friends left on the journey with me and fewer still who understand. My husband was the victim of a malicious and nasty hate campaign at his work extending over around four years – sometimes covert, sometimes more obvious. He suffered badly and spent about a year on stress leave. No-one wanted to know that story – not anyone! His secretary and I supported him alone and bore the burden of his stress alone between us – and her with her own husband suffering his own career crisis. No one we encountered could deal with a second or third conversation on the matter. They couldn’t understand how he couldn’t deal with it or leave and get another job or fix it somehow. Some problems just aren’t fixable. These are not life threatening but they challenge friendships. For me, I have suffered the death of many unborn children stoichly, no-one ever saw me cry for my mother who I loved without reserve, and I made polite jokes over my and my husband’s stress to make it easier for others. Oh boy. We are a difficult society. My Maori sister-in-law shakes her head at us strange folk. Take care – I have been thinking of you and I hope you will accept my kind thoughts. A novice in training.
Thank you for writing that piece, it was very brave!
I am selfishly so angry that you have cancer; you are such an inspiring, influential, positive amazing worthwhile human being. It is not fair, it sucks and I am thinking a number of other expletives. Don’t hold back Sara in the immortal words of Dylan Thomas “Do not go gentle into that good night. Rage, rage against the dying of the light.” And I interpret that as don’t be stoic or suffer in silence, you deserve to have the stage and an audience strong enough to hear what you have to say. Your readers have basked in the awesomeness of your books and I for one (and I see many above) am more than happy to hear any words you have to say now.
I have had 3 lots of brain surgery in the last 4 years to fix a brain aneurysm and each time there was a 1/20 chance I could die. I have a 14 year old daughter with a moderate to severe disability and I have experienced the platitudes served out by people over the years. I would have appreciated having someone who I could be honest with about my feelings and someone to rage with me.
If you think you could cope with a complete stranger in the form of me, my 14 year old disabled daughter and very lively 4 year old daughter camping in your garden, I would be more than happy to hook up the campervan and take a drive down to spend as much time with you as you could handle. My husband could hold down the fort at home.
On a more realistic note if you just wanted someone to lend an ear, you can always call for a chat, I would be honoured to be able to help in any way I can. Sadly sometimes it is easier to be honest with a faceless stranger.
A weird thing happened while I was reading your post.
I was reading this, feeling that ‘I’m going to be like this’ because I am a single mother with 4 boys, (and everyone says that girls stay with their mother and boys go), no partner…. yadda yadda….
then as I got to the end my 18 year old,(ironically the child I butt heads with constantly) started singing the song that he wrote for me. The refrain is. “Oh, because I love you.”
It was like a message that I’m going to be ok…. that it’ll all be ok. And not just for me but for you too. I went into his room and hugged him and we had a lovely talk.
My sister in law was desperately ill with bowel cancer 15 years ago. She was so brave and stoic…. but one day I visited her in hospital two weeks before she died and we had a REAL talk… probably the only one we ever had. After reading what you’ve written, I’m even more glad that I took the time to pop in and see her that day. I’m glad you’ve written this. I don’t plan to get sick for at least another 50 years (and of course the cosmos or whatever will take note of this and abide by my wishes!) but I will never forget what you’ve said.
I have nothing profound to say, no words of wisdom or comfort. I have no concrete idea of what you’re going through and it would be presumptuous of me to tell you what to do or how to feel. Just know that I will never forget what you’ve written here, that your words resonate with not just me but with many others. (Bit of a shit that I’m saying this about your cancer and not about something more sunny. ) I’ll retreat into politeness.
Delightful post. Very well written. Toodle pip.
Thank you once again for your insight, wisdom and sleeve-wearing honesty, Sara. You are truly brave and strong.
good on you to rage and let the truth of your fears and emotions out. I will make sure my family all read your article so that when and if the time comes for one of us we will remember your wise words. I sat with my dad as he died in the repat Melb and brought my mum to Bendigo to be in our home as she died. My greatest guilt being I popped outside for half hour and she died in that moment. You have every right to ask more of those close to you and our misguided attitude to the terminally ill. Early in our marriage my husband conjured up a couple of impressive brain tumours and we experienced that AWKWARD feeling of those close to us especially his work being decidedly uncomfortable. Is it that we think death is catchy or once diagnosed people should be polite and die quickly? Of course you have every right to meet death and dying as you see fit. It makes us feel helpless that we cannot asist you and ease your pain.Your insights and clear articulation on such as stupidly taboo subject are a breath of fresh air. Mwahs.
My Aunt died of cancer several years ago. I was honoured to be one of the few people she talked to about how it felt and how hard it was. Something she said to me then I have never forgotten. She said, ‘ Cancer is like a suitcase you always carry around. It’s heavy and it hurts to carry it all the time and it’s exhausting. Some days you can rest it on the ground, but you can never put it down and walk away.’
In my blindness and my stupidity, I urged her to do things like leave cards for her children, presents for the moments ahead in their lives she would miss. She was angry about that; said it would be accepting she was going.
I think we do expect the dying to be positive, to be cheerful, to fight the good fight as it were. Maybe there’s another reason for that; we hear so much and are bombarded with so many messages about positive thinking and how you can ‘positive’ your way out of illness, I believe we want the ill to do exactly that. And then when they do open up and they share their pain and loneliness like you have done today, then we panic and wonder – have they given up?
Really, it is all about our own selfishness. We want to keep those we care about and love for longer, and then we push them away so it doesn’t hurt so much when they do pass.
Can I say that I’m sad that you’re feeling alone? I don’t think I’m the only one here who cares enough to speak to you daily via email… if we could. We might be a long way away, but we wouldn’t let the day pass in silence. I’m still imagining your courtyard and sweeping those leaves away for you.
If you did want to talk, my email is above.
Blessed Be.
Fool of a Took that I am, I should have read the Angry Post first. I’m an idiot for repeating what you have already pointed out about our unreasonable expectations of the effect of the ‘positive’.
Sara, I am so glad you are not being silent and stoic. Everything you wrote is true. If I were not on a remote island in British Columbia, Canada, I would willingly do anything for you. I also send you many, many virtual hugs and support.
sara you are an ispiriation i didnt realise it was so bad i have been reading your web site for some months now and look forward to reading all about your recipes and lifes experiences you are an inspiration to me and you are right the word death scares people away my father died of liver cancer he was an alchaholic the stupid so called doctor told him he did it to himself that made him punish himself for his dying but what of these people who die from liver cancer and have probably never drank a drop of alchohol . we did never speak to him of how he felt mum was angry with him in the end he died alone in the hospital mum was there but not in the room she waited and comforted him until she got so tiered she went in another room to sleep and he waited for that moment and slipped away that must be how he wanted it my father was a hard working man and did a shift work so he use to drink to help him sleep until it became a daily habit .he still insisted until the day he died that he would be indpendant even of his dying alone he use to do other peoples gardening mainly for the sick and dying and would always get upset when they did die but never spoke of his own fears and that is how i hope i will be one day just like dad keep on working be yourself but perhaps learn to talk about it . if you need someone to hang out your washing or help with your beautiful garden i volunteer very much to help you pleas ask me for help if you need my help with anything.i am only an email away and look forward to reading all about you and your journey i have never read your books but i have respect of knowning that you are a very caring inteligent brave person .
Thank you to everyone for your replies and support. I have been left in tears.
Trish – yes, what you said hits home. All we ask for in terms of help is that 2 hours a fortnight where someone else can uncomplainingly (which, surprisingly, is a condition that is hard to fulfill) do what you find difficult.
Auddie – I am glad you had your eureka moment. Too often the sick, the vulnerable, the victims have to comfort everyone around them – make *them* feel better! – when all they need is comfort themselves. It happens in all kinds of situations. Someone comes to visit – they need to know the details, then they need to be comforted and made to feel at ease. Frankly, I’m over it. Who needs that?
Lots of people always want to do the ‘visit’ thing. Have a cup of tea and a chat. For someone who is very sick, that is exhausting for them (I don’t think I can even explain to people what ‘exhausting’ means). The well can’t understand how the chronically ill, or the very ill, find holding a conversation utterly, totally impossible to maintain. “Having a cup of tea and a chat” involves me having to get up out of bed, making someone a cup of tea (this is exhausting for the ill!!!), feeling as though I need to drag myself down to the shops for some biscuits or pastries or something, sit there mentally exhausted while someone chats cheerfully on, end up in a fair bit of pain by the end of it, and, while on the one hand company is good, on the other hand it is so appallingly physically and mentally debilitating that it can do more harm than good. We’re trapped. Because I live alone I don’t have anyone to act as gatekeeper for me, *I* have to be the bad guy and say – this is too much, please leave. And of course then people get offended, fluff off in a huff, and you never see them again.
Minefield.
Now that I am venting *wink*. The other thing I noticed was that when I was first diagnosed (and I was very, very ill by this stage), and I was telling people I had cancer, suddenly I was flooded with people saying they simply *had* to come visit or stay.
Like I didn’t have enough to deal with? They hadn’t given a toss for the past 25 years but suddenly, now, they are all overcome with emotion and want to visit? They think I need this on top of everything else?
Again, I cam sympathise immensely with anyone who chooses not to tell family or friends. Suddenly it becomes all about the family and friend’s needs, and not about yours. I know someone above (or on Fb) said something about this and said that “they think I can’t handle it?” But it isn’t about *you*! It is amazing how suddenly it becomes about everyone else, so, yeah, I can seriously understand people just shutting the hell up about it. The ultimate self-protection plan.
OK, I am going to walk away for a few days. I need a break. LOL
My mother had trigeminal neuralgia, a nasty condition where a nerve in head head misfired and caused extreme pain. She lives in South Africa and didn’t talk to me about what she was going through. On two visits to Australia she suffered terrible bouts of pain but still would not talk about it and kept saying she was ok. She didn’t want to “burden” me with her pain and in doing so made me feel cut off and useless. I felt she didn’t trust in me. Sometimes people mistakenly believe that their friends and loved ones can’t handle the truth and in doing so can cut them off. Hopefully now that you have let people know how you feel and what you need, more friends will know what to do and say and feel able to help you.
I have had a few ups and downs in life and I have learnt that often people are more than willing to help but only offer help in the way they believe you need it. Very few people are able to put aside their own egos and offer the help you really need.
I am a huge fan, but a complete stranger. I wish we had met and were friends and I was free to come and take care of you, and be your “gatekeeper”. I hope that more of the people lucky enough to be your friend will step up to the plate and give you the support you need.
Samantha – again, that’s just why people *don’t* say anything – it becomes all about the person you haven’t told. They get in a huff, it becomes all about them, and you’re thinking. “No way am I telling anyone else ever again”.
Why do people think they have a right to be told? Why does it always have to be about them? That is *precisely* why people don’t tell! Not only does the person in pain have to carry that burden of pain, they *also* have to carry everyone else’s burden and fuss fuss fuss fuss and ego-dramas as well.
Sometimes people mistakenly believe they have a right to be told. They don’t.
Again, why does it so often have to be about everyone else? It is their feelings that apparently matter most, not the feelings or wishes of the person who is suffering.
If someone doesn’t tell *they have every right and every good reason not to do that*. Do NOT make it about yourself and your wounded ego. Respect what that person wants.
Hi Sara, I didn’t mean that you have to tell people about your feelings or what you are going through or that it is about their feelings. I believe that the people who care about you essentially want to help you but don’t know how. Even if they have been around illness or death before, everyone is different so they can’t know what YOU really need unless you tell them. You are doing a fantastic job of doing that now. You are also giving everyone who reads this blog so much insight and in so doing will help many people in your situation to be more free and people who love people in your situation to be more helpful.
Beautiful writing. Just beautiful.
About time you spit it out….good girl! Bet that felt good!
Oh BTW my visit is not about the end ..so don’t think you can talk me out of it..grin
I’m with Bronnie. When I visit it will not be to say goodbye, but hello even if I clean cat trays & “do” veggies or whatever. When you told me last time about the fluid build up the first thing OH said, do you want to go over & help her. I said no because I knew if you wanted that, you would ask as I have told you many times and that offer always holds good my dear girl and don’t you dare forget it.
Thank you Joy. *hug* (Bronnie, I live in terror of feb next year. ;)) It is difficult to ask, though. It is so, so, so hard. For now, apart from being totally exhausted, I am not doing too badly. And the total exhaustion can be helped if I can persuade my oncologist to let me have a blood transfusion later this week.
Brava!
Keep talking, shouting and rousing up the deniers. You, they, and all of us need this so.
Thank you Sara for the gentle reminder of the person behind the illness. I work in the medical profession and have always felt privileged when a patient allows me to see the real human being overwhelmed by fears and anxieties. However, now I realise that allowing my patients to express their inner turmoil should be my everyday practice. I promise to try. Although I live on the mainland – if there is anything I can do to give you a break – please ask. I would like to help – without complaint.
Thank you for writing this post, revealing so much of the pain, and the pressures and expectations surrounding illness and dying. I have had several cancers, and am free of them, as far as can be known. Like so many people I have lost family and friends, and for some time did some palliative care volunteer work. While I feel able to talk about dying, not everyone wants to do this, or, if they do, perhaps they want to talk only to a few people without pretence, and, of course, not necessarily to me. That is their right, but if people want to talk, I will listen and not try to rationalise or brush away the awful reality. Acknowledging the truth and reality of the situation is essential. I don’t generally have any sense of entitlement, but do strongly believe that people are entitled to the truth and should not be forced somehow into a pretence.
Despite knowing that I was recovering, it was not until my treatment had finished that I felt able to look back and acknowledge that it had been an awful experience – at that stage it was somehow safe to allow those feelings to come to the fore.
None of us can know how we would approach death, or bear the pain. When my father was dying, all of us gathered around. We asked him was there anything he wanted, and he said ‘I don’t want to be alone.’ So we were constantly with him, but nevertheless he died when no one was in the room. Some medical people told us that it often happens that some of the dying ‘wait’ until they are alone, while others, apparently comatose, wait until family members arrive.
I am glad that there is a person who has and is able to give you love and practical support.
I am the carer for my elderly husband, and it is often a sad and lonely task, with relatively little support from his family, and I am far away from my own family, and it is increasingly difficult to get any ‘time off”. Yet there is general support and sympathy, as caring for the elderly is something many people do. Yours is a harder situation by far. People do think of others – the terminally ill – and often want to help – but not to intrude, and it can be a difficult line between wanting, or being able to help, and transferring one’s own grief and sense of impending or actual loss.
I am dipping in and out of your book The Return of Arthur, enjoying it, and learning a lot, and I intend to give it to a friend who is studying in the general area and has a particular ‘thing’ about King Arthur. So before I read your post, you were already a part of my life.
I wish you good things for the rest of your life, and hope that the leaving of it is not dreadful. And I am with you about the ‘battle’ against cancer.
So true. I was really touched by your forum story. I think you are right. The chronically and terminally ill need help above everything else. (Even bathbombs and slippers) When I was growing up my mother was chronically ill (From when I was 8-13. I had no idea until years later. Completely oblivious.) and people said nice things to her for a couple of weeks and then nothing. Except for one friend who came every morning and did all the things that needed doing, but my Mum couldn’t do. Dishes, washing, vacuuming etc. She wasn’t even someone my Mum was particularly close to before this experience. She was the only one who knew that this was something my Mother needed. Your discussion has reminded me that all those who are ill need help. And that I need to be less oblivious!
I am dying a perfectly rational and fair death, my past is catching up with me. I can’t ever say “it isn’t fair” because every packet told me this may happen and I didn’t think it or I mattered. I do matter, dying gasping like a guppy sucks and I am bloody sick of assuring everyone else it is fine and I am fine with it, it is not, I am not. How do I deal with the fact it is completely self inflicted except by telling everyone I accept it? Of course I don’t, show me someone accepting death and I will show you a liar, resignation is not the same, welcoming the end of pain is not the same, not wanting to have to fight for every breath anymore knowing full well we did it to ourselves is not the same. I will have half the lifespan of my grandmother. Let me whinge when I need to.
don’t smoke
Hey Sara, I am always glad to hear from you. I don’t care whether it’s to bitch and moan (I mean that in a good way, I think bitching and moaning is a fundamental right!) or to talk about your veggie garden or whatnot. It’s your blog and I appreciate it any time you post something for us to read.
My close friend’s mum has lung cancer, which spread from breast cancer. I have made a few meals for her and her family just so one or two nights a fortnight it is one less thing to worry about. My friend said that at this stage they didn’t need me to come over and do any chores – perhaps also due to privacy reasons. My once-in-a-while cooking feels like I’m not doing anywhere near enough, but as you say, it’s about what she needs, not about me feeling useful.
And thanks Sara for mentioning the blood transfusion because that reminds me: another thing people can do – whether or not they know somebody who is ill – is donate blood! One little needle every 12 weeks is a small discomfort. This is a way everybody can help. And you get free juice and lollies 🙂
xx
Hi Sara,
I was wondering how you were getting along- I went past your house the other day pushing the pram. You probably would have heard its squeaky wheels…
Good luck with the blood transfusion. If it’d help and you’re feeling up to it, me and the Medium-sized Baby can pop down sometime and we’ll make you a cup of tea. Possibly some cake could be part of the equation too. Battenburg, if I can find a decent one, or failing that something from Jean Pascal’s.
Holler if I can be of use!
Stephen @ 325
Good on you Sara! Suffering in silence is just stupid.
I will continue raking. And since I can be of no help to you.. (And I doubt you would want my help even if I was in a position to offer it to you..) I can take your message and apply it to those people in my life who need it.
My mother also has a chronic illness, which means she has been slowly deteriorating over many years. She hates it, but there is nothing I or anyone else can do about it. All I can do is be there, and do what needs to be done, without complaint..
Thank you Sara for sharing!
Thank you for this post. It expresses so well what I think I am most worried about – I know my cancer is incurable, I don’t know how long I have and no-one wants me to even mention that I know my health will inevitably worsen and I will die, sooner rather than later.
I hope the transfusion helps.
Hi Sara,
It pains me to know that I cannot say anything that can help. I came to know you through Sara Douglass and through your books to your websites, finally to here in Nonsuch’s virtual space. I crave every word that you put down, even when they are said in anger to a world that wants you to ‘hole up’ and ’shut up’. I recall the places you have taken me in my imagination, smiling broadly at how you (effortlessly it seemed) could do it.
And I read this now, along with your past posts and know that you don’t have that freedom today. I can’t tell you how many times I have wished I could come and care for your precious garden for you. To give you even just one ounce of joy back for the countless amounts you have given me.
Tasmania is a long way from Tennessee. But I ‘visit’ with you often. I love getting to see your world, relishing with you as your kitchen became the one of your dreams and hearing even the merest glimpse of how YOU are doing.
I know these words are small to you. But I hope that they can at least give you a small smile.
Always here and always reading.
Vicky
One of the most comforting books I’ve ever read is WE DON’T DIE; GEORGE ANDERSON’S CONVERSATIONS WITH THE OTHER SIDE by Joel Martin and Patricia Romanowski (availabe at online outlets). It is not religious and well worth the read if you are up to it. There is also a sequel: WE ARE NOT FORGOTTEN.
I have devoured your books whole ever since I first stumbled on THE WAYFARER REDEMPTION five or ten years ago and I thank your for many hours of of enjoyable journeying to a distant created in your mind.
Remember, while there is breath, their is hope–they are doing wonderful things in treating cancer in Scotland right now and cancers that were formally found to be untreatable are no longer untreatable.
A real friend will hold your hand while you scream out your rage, fear, and pain when you need to. I’m sure that are many people holding out psychic hands to you now. Just reach out and you’ll find them there.
Sara
I was one of the forum members who jumped on the bandwagon to supposedly help with wishes & a card. I see now how exhausting that time must have been for her & how we made ourselves feel better instead of providing practical help.
I am ashamed & I should have known better. My husband has an unclassified form of muscular dystrophy which is slowly killing him. As his carer, I would love some practical help around the house. As his wife, I get the comments “I don’t know how you can cope” but they shy away from talking honestly to Jon. I want to say to them “I’m not the one dying from this, talk to Jon, allow him the right to tell you exactly how he feels, don’t let him die without being heard.”
Anyway, don’t you be silent. I (& many others) would be privileged to hear you, whether it be good, bad or ugly.
Thanks for sharing Sara, for someone like me with no illness and no-one close to me ill, its easy to fall into the cycles which society impress upon us, without consideration or thought. Pieces of writing, like this, are a good reminder not to follow the crowd, and the reasons why.
Hi Sara, I’m sorry to hear how ill you’ve been. I know when I’m sick I get angry, depressed and so on (I am incurable too) dealing with cancer..but hope keeps me going. One day at a time, I try to find something to cheer me up.
You have hit the nail on the head though about death being silent. Damon said to his father Bryce Courtney, just before he died, “It’s alright Dad”. Yes, he was trying to die silently without stressing his dad. Many times I’ve felt my onco doesn’t take what I say seriously and I just end up saying nothing. At least I have a good GP now, who listens.
You need family around you Sara, we are all virtually strangers, and have come to know you one way or another. We do care, but cannot help in a practical way due to distance or family commitments. That is the cold hard facts.
All I have is my family..and one or two close friends, and for me, that is enough and all I can cope with. I can’t cope with other people’s feelings, so I keep away from them. I like to get out and experience nature, animals, and suchlike..simple things. It’s now about ME, and I try not to put myself last anymore.
I really wish you all the best and don’t forget about hope. I wouldn’t worry about those celebs..it’s you that counts and everyone is different. You have such a beautiful garden and home, so much to live for.
Thank-you for sharing this with us all Sara.
I’ve e-mailed a copy of your post to my mother. Cancer is very prolific in our family it killed both my mothers parents and two of her brothers. Whenever someone in our family falls badly ill and is sent off for testing we dread that it will be cancer. I hope that if and when it strikes our family again we can take this lesson you have shared with us and apply it to our own situation.
I agree with Lucy’s comment, this is your blog and you can choose to use it however you want to. If you want express how you are feeling then please do. I still feel lucky to be able to come here and read your blog.
I would that I lived closer so I could offer some kind of useful help.
Sara, as always, you manage to use words to get to peel back the layers and get to the core of things. I wish i could do something to help, but know that I can’t. I can only thank you for writing with such power and conviction- your anger and frustration fairly leap off the screen.
There is one part of what you have been writing that I can relate to though. Your comments above about visitors being a drain reminded me of our experience after my Mum was diagnosed with cancer. Once news got out, the flood gates opened and we were overwhelmed by well-meaning people who wanted to visit her. The funny thing was that out of all those people who came to visit, chat, and have a cuppa and cake, only three washed up after themselves. The rest simply left.
Obviously they assumed Mum had special fairies that arrived with the diagnosis of cancer, and did all of the housework so that she would be free to entertain. Hmmm. It used to make my husband irate, and his solution was catch them as they were leaving, hand them a tea towel and point them in the direction of the kitchen. Some had the cheek to complain to Mum about it later. She thought it was hilarious.
I’m sure this sounds really trivial, but when someone is so weak that they can barely hold a book up to read, sitting up and attending to conversation, trying to smile and drink endless cups of tea is too much. In the end, Mum told us to “tell them all to bugger off”. Which we did, politely.
It took me 10 months, and several year after that, to understand that dying is about the person who is dying, her fears and her anger, her life. Once she is gone, the funeral is for the living to consider their mortality, their fears, their anger and their loss.
Thank you Sara for sharing your wise and beautiful thoughts with us. They are so important in today’s silent society. Now I know what to do next time someone around me is dying.
Hi Sara,
I’ve read your books and enjoyed them, but not your blog before. I’m too far away to be of any practical use whatsoever, but will be reading your blog from now on. Screech, sob, bitch, moan, laugh, cry, complain all you like, I think there’s a few people out here listening, and learning a bit about a better way to do things. I know I am. Thank you.
Sara, this made me feel what I often feel in the face of death and dying – inadequate, and at the same time, enriched. Thank you for challenging all of us to do better, be better, and for giving us a very clear idea of what we can do to help.
So beautifully written. Thank you for being so honest, and in sharing your story, you are helping others to help the people they love. I will say a little prayer for you tonight xo
Sara. My email addess is xxxxxxx@xxxx.com
I will not forget you. I will not turn away. If you need to vent, to whinge, to snarl, to cry … I am here. I am sorry that the soup and tending in the garden didn’t work.
If one faithful heart is all you need, email me.
Thank you Sara. I read this via the link Karen Brooks posted on Facebook. My father is dying – though not of cancer – and your beautiful words have given me such an insight into what he must be feeling. He is one of stoic ones, never complaining, more worried about how hard it must be for my mother, my sister and I. Every now and then when we’re alone, he makes the odd comment about ‘when IT happens’. I probably haven’t taken his cues to wanting to talk as well as I should have, not given him the opportunity to voice his fears. Well, that’s going to change as of today. From here on, I’ll be encouraging him to vent, to complain, to let us know how HE is feeling.
We have found that friends of many decades have dropped off the face of the earth, as well as some relatives who say they want to ‘remember him how he was’. Pfft. The most common reaction we have from people is to whisper behind his back: ‘how we you coping, he must be so hard to care for / don’t know how you do it’ rather than spending the time to sit down and talk to HIM honestly. Even my sister was horrified when I wrote and posted on Facebook, a tribute piece titled ‘I’m watching my father die slowly’. To her, it was far too confronting, yet he loved it, and it has bought us closer than ever.
So I thank you again, you’ve touched my life in a personal way you could never imagine. I’ve taken your words to heart, and will be using them to change the time my Dad has left for the better. Thank you for your honesty, your insights and for sharing your pain. I’ll be doing my best to stop the silence. xox
Sara
Please continue!! To be silent is to be ashamed, and there is nothing to be ashamed of. You have cancer. It is an ugly desease and there is nothing you could have done to prevent it. I have had two people in my life die from it. So Please continue to tell us how you feel and be honest about it. If there are people here who don’t like to hear it, they don’t have to read it.
I have seen what you described so many times. I work in a hospital and have been around several terminally ill and cancer patients. Even time I walk into one of those patients rooms it like they put on thier “happy face.” When I ask what else I can do for them, they simply smile and say nothing. Unfortunately I can not spend more than 15 mins with these patients, to just simply sit and hold their hand. When I leave thier rooms, I want to pull my hair and cry for them knowing that they are hurting and scared but unable to do anything about it. I wish I could print off some of you blogs to share with these patients and tell them its ok to rant and rave and scream and cry.
I know I am a stranger and live in the states, but am willing to be of any help that I might be. It would not be my first trip to Down Under. Nobody should be alone, either in sickness or in death. you have my e-mail above.
Thank you for your well written piece. Many of us unfortunately have read horror stories about the funeral business. Regrettably there are companies selling cremation urns online which are not much more reputable. While they spend lavish amounts of money on web sites dripping with sympathy – many of these companies are nothing more than a site that drop ships product. Beware of sellers that do not have a physical address or the names of the principals of the company on the site – what are they hiding from? I had an issue with a company called Perfect Memorials ( Perfectmemorials.com ) and there was no one from the company that would talk to me. While I could call to order an urn – I could not speak to an owner or manager over the phone – they insisted that we only communicate via email. An evasive tactic if I ever saw one! Perfect Memorials is really a company that invested heavily in the web – but puts very little into the human contact part of the funeral/memorial industry. I would be careful of Perfectmemorials.com and others like them.
Thank you so much to everyone who has taken the time to read and comment. It is very, very much appreciated. 🙂
It is a pleasure to ‘meet’ you Sara – I was recommended to read your amazing post by Frogdancer at her blog. After reading your words I feel truly humbled. You have enhanced my perspective on this tabboo subject and I shall never forget what you have said. I look forward to visiting your blog many times again in the future.
Too far away to be of any real use, I yet think of you often and wonder how your day-to-day is. Would that I could weed and polish the copper for you.
Dear Sara,
I just found about your cancer due to your writing about it. Hope in meantime you are better. If you ever would like to talk to me about Anything and Everything, I would be REALLY HAPPY!!!:).
I am really in love with your writing,
My Best,
Mariana
Sara, thank you for what you have written. It was often said that my grandmother didn’t complain, and while it was true, I wish that she had spoken to me as honestly as you have. You are not alone, there are so many of us here for you, though for those of us miles away, an email is the best we can do. Sending hugs and pats for your babies, Rachelle
Dear Sara
As I was reading, I had to stop myself from coming to this section and writing a comment before finishing my reading. My first reaction was “I want to write what I am feeling ‘right now’ not after I finish reading”. But then, I listened to my own ‘voice of experience’ and orderly completed the reading instead of going ahead with writing a comment.
And now I am here, writing, and almost speechless.
I am touched by your words. I am touched by your openness, I am sad. I am also happy to see you are writing like this, saying what you want to say without adornments, or rather, I should say, I like to see you are writing about a topic that is supposed to be sugarcoated in your usual straightforward style.
What I am trying to say is please keep writing about death and dying. Only the strong can talk about death and dying with the same openness and in the same candid way as one can talk about one’s garden, plants, and flowers.
After all, death and dying are flowers in one’s garden.
Sara, I want to add that the latest entry in your blog left me in shock. As you might know, I don’t come to this website often and I am not on FB either. I feel honored to have met you at the forums and that I had the opportunity to ‘chat’ with you on the boards as we did for some time before your leaving. I miss you there, same as many others do.
The boards are not the same without your presence there.
Having done battle with intense grief myself after losing my husband and above all my soulmate and having walked through the same stages as those of dying, I am slowly re-emerging and envisioning a path into the field of grief counselling.
Thank you for your words and for expressing your feelings like you did. What you wrote will be liberating at so many different levels to those who come to these pages and take the time to read.
We are miles away, but the written word is very powerful as well as it is healing. Please keep writing.
Thank you for sharing your angst, Sara. I’m sorry our society has created such a scenario, but it is so true. As an ex-RN (as I know you are) from a ward that including a palliative unit, I can tell you that some of the “carers” really do care (even so, I pray you don’t have to endure the impersonal situation over the comfort and familiarity of you own choosing).
Death and dying was something I personally struggled to deal with on the ward, and wished I could have been better at. I wish there had been accounts such as yours included in my training material or available on the ward, as it would have aided a greater understanding of the process.
I thank you now for baring your soul so beautifully and I’m sure you have helped many gain a much greater awareness of it all. So now, when faced with the inevitability of prolonged or terminal illness of some of those we care about (& possibly ourselves), we will be able to cope much better. I wish for only good things for you, Sara.
Dear Sara
I want to say thankyou for sharing with us all that is happening with you, sometimes all we need is someone to listen. I am a nurse in Hobart and I am more than happy to volunteer time each week to help with shopping, chores, appointments or just someone to listen.
Thankyou also for your fantastic literary works that I have loved over the years.
((Hugs))
Sara,
I have been an avid fan of your for many years, and have read I think everything that you have written, including all the various news items and blogs. It is with considerable distress that I read your latest blog, a magnificant and very touching piece of writing.
You are absolutely correct, we in todays society, me included, do not know how to treat or act around the terminally ill, and are a little daunted by it all. Sara, I have absolutely no real concept of what you are going through, only you can know that, but do not feel guilty, and yell and shout and express your fear and anguish and grief as often as you feel you need to. We, if we can do nothing else, will listen, hear and feel for you. I,as will so many others, will remain your companion, and a promise to be more stoic in future is not required.
Mike
Sara,
As a new nurse barely a year into my career, I have already been exposed to the sad truth of your words. I work on a unit on which i daily take care of those individuals suffering with chronic illnesses, and daily I see dying who must suffer because family cannot face death and their impending feelings of loss. You are completely correct when you say that Western culture cannot cope with death. I myself am ashamed to say that I have been one of those staff members who have been unable to stay by someone’s side, and many of my patients have had to die alone. I admit I am uncomfortable with death, even though it is merely a part of life. I want to thank you for speaking the raw truth of your feelings; it has become all too easy to forget about the fears of the dying in the bustle of my day, and that is not the nurse or the person I want to be. Thank you for your proverbial “shake”. I wish you the best, and may you be allowed the dignity in death that you deserve.
Thank you for writing this amazing piece. It brought me to tears.
My grandfather was diagnosed with lead poisoning a month ago and my mum told me he has now also contracted a neurological virus that has turned him in to what he calls a monster. Half of his face has fallen; he looks like he has had a stroke. At first I was angry with my grandmother for not keeping the family in the loop as we live a few hours away and don’t get to see them that often, but I read what you wrote and it totally changed my thinking. What right do I have to be upset about not being told? It is his choice to tell people, as he told my mum.
I also work at the local hospital in an admin role and I find it hard to ‘deal’ with sick people. I think it is because I am afraid of death, injury and illness. After reading your words I am inspired to make more of an effort to not avoid the issue of death and illness.
If you don’t mind I am going to post a link to this on FB so my friends can read this too.
Thank you for opening my eyes and my heart.
The guilt and fear of the living when confronted by the dying is difficult for most to step through.
When my Dad was dying of cancer, the rest of my family was so frightened of being left without him that they refused to acknowledge that he was going. My mom wouldn’t allow him to take too many oxycoton just in case he got addicted and that fear also forced his hand to undergo chemo and radiation therapy when there was no hope it could help. He was in the final stages of Pancreatic cancer at the time and her fear caused him so much more suffering than he needed to go through. The guilt he felt at the pain he caused her would leave him trembling and crying when she’d left the house for work.
Only Jason and I admitted he was dying, and we were with him. Talking when he wanted to talk, letting him sleep when that was what he needed. Helping him from his chair, getting him whatever he asked for. We even faced my mother’s wrath to let him to the one last thing he really wanted to do – drive his favourite car one more time to go visit his mother. 10 days later he was gone.
Watching Dad die was hard, but watching the pain my Mom caused was harder. The hardest thing I had to do in the 6 weeks before my Dad’s death was to sit down with my mom and gently tell her that she had to accept that he was dying and reveal to her the consequences of her fear. It helped.
Sara, I don’t want you to die, but that makes as much difference as saying I don’t want the sun to set or the storm to come. I’m just another person, who you knew by typed words on a screen years ago. We’re not close, we’re not even friends really, but one day I picked up a book called Battleaxe at Angus & Robertson and visited the website in the back and that action triggered a chain of events that completely changed my life. I made dear friends across the globe. I thought new thoughts. I found unselfish love with someone genuine and worthy.
I can do nothing except give you my permission. Go ahead and scream and rant and be bitter. I know I am. Bugger Stoicism. When the universe sees fit to take the most precious thing you have away, there should be no muffling the anger and resentment. As you celebrate the joys of life, so should you mourn its extinguishing. If I could do more, I would.
Mae
I read this last Sunday (I think it was a little bit different?) & have to say it has shaken me. No idea what to write or do anymore so will just wish you all the very best Sara. I know you’re hurting & finding your way down this very difficult path alone & frightened, I only pray the path turns into a runway with all lights blazing to show you the way.
Hi Sara
I have never heard of you until I read the sunday paper today and it had (The silence of the dying)in STM so I read it and cried.I just lost my husband of 20years to lung cancer he never smoked.He has been gone 10weeks.The day his doctor told him he only had 6-12 months it was like someone grabbed my insides out we went home and cried all night.We were so lucky because we both had 13 beautiful months to spend together before he peacefully died in his sleep with me next to him. I had him at home. I would not let him touch a hospital.Our family and friends where so great bringing in food and coming around the house was so loved. My husband and I spoke so much about dying and He told me he wasnt scared because he didnt know what to be scared about. I never believed in the after life but my darlings last day on this earth he was connecting with the other side. You cant explain it but he was so much at peace and he was just connecting it was beautiful to see.My husband never once di he comlain he was very brave.
I had a poem read at his funeral written by Canon Scott Holland
Death is Nothing at All
I have only slipped away in the next room,
I am I and you are you
Whatever we were to each other.that we still are.
Call me by my old familiar name;
Speak to me in the easy way, which you always used.
Put no difference into your tone;
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile think of me ,and pray for me.
Let my name be forever the same as it always was,
let it be spoken without effort
without the ghost of shadow on it
Life means all that in ever meant.
It is the sames it always was;
There is absolutely unbroken continuity.
I am but waiting for you, for an interval, somewhere very near, just around the corner… … all is well
Dear Sara
My sunday paper had your article in the STM this morning, I sat and cried for your pain and gutfelt honesty! You are so very right–why should you be stoic, passive, sweetly grateful that someone wants to vent their crap in your space etc etc, what utter bollocks!! Dying is part of living and it is not a clinical procedure conducted away from familiar surroundings.
Mum wanted none of that shit either when she was diagnosed with terminal cancer. I was full-time carer (my sisters both ran for cover) able to share chat time when she wanted, support dad who was in total denial and be the gatekeeper when the visitors were overbearing/tiring/boring. It was a celebration of everything that was my mum which she was able to share and experience complete with my newest grandson being breastfed sitting alongside. She had the delight of giving her personal treasured to her chosen recipients as well as chatting with her funeral director about the option of a farewell from home. Mum said it was so very different from the “shuffle the dying away” surrounding her parents and family–all the silly taboos most families have. She slipped away very serenely with dad and I beside her after telling me that morning she’d had a lovely dream of flying among the birds, but she was pissed off when she woke to find “I’m still bloody here!!”
I hope at least one of your friends can be your rock, wailing wall as well as gofer doofer so you can have the peace of mind plus the dignity of dying in your own bed with loving support. You are still your gorgeous vibrant self and will ever remain so!
Cheers, Sandra
Sara
I have just read your piece on dying and agree with everything you say.I was a registered nurse for 43yrs and saw at first hand how societies views on dying have changed. With modern technology people are not allowed to die with dignity but are shunted to side wards so not to upset other patients. ispent my last 15yrs working in age care and felt it was a privelege to spend time with residents who were dying. No-one should have to die alone andI hope that you find someone to be with you when you time come. My mother recently died, in the UK, at the hospital I trained and she she had no family with her when she went.
Sara – I just read about this blog in STM today and wanted to thank you for your honesty and for the insight into this uncomfortable subject. You hit the nail on the head, we have no idea what we are supposed to do or how to act around the dying and dealing with death because it is shunted away to hospital. Now I have a much better understanding of how to help without feeling uncomfortable and useless.
It’s been lovely reading your website too, I also love fresh, garden grown food and preserving an abundant harvest!
Wishing you well and hoping your friends help you through your tougher days.
Hi Sara
I read the piece in the Weekend Australian today and was so grateful. My 46 year old husband has metastatic bowel cancer and your comment re people saying “I’m thinking of you” resonated so loudly!! It drives me mad! “I wish there was something I can do to help” and “Let me know if there’s anything I can do” are just as bad. Yes, there is something you can do: make some food for us (doesn’t matter what) and drop it off to ease the load!! It’s really hard dealing with this and running a family: just do something practical! And I agree with you Sara about the “visit thing”: we are hurting/struggling too much too entertain and just want real, practical help that doesn’t impinge upon our limited energy reserves. I so hope the piece is widely read by friends/family of people with terminal illnesses, and I thank you for speaking these truths.
Oops, sorry I read the article in WA’s Sunday Times, not the Weekend Australian.
Sara, I too read your article in the STM today, W.A’s Sunday times.
Thank you. I watched a friends Father die from cancer and had contact with him and his wife during this time, I cleaned their home for them every fortnight. I admit at first I felt very uncomfortable knowing he wasn’t going to be around soon it really didn’t get any easier. There were times I wanted to say I didn’t want to do this any longer but I stuck with it. I would ask him how he was and his reply sometimes would be “I’ve felt better”…I think I wanted him to tell me really how he felt not sugar coat it, I remember thinking how can he be going each day without a murmur of complaint. I guess not wanting to upset anyone!
My hubby had a friend die recently and he wouldn’t visit him towards the end, I kept telling him to go, he needs to know that you care, but he didn’t.
I will take what you have said to try and help my friends and family if this need ever arises. Also tell them of your situation and how we as humans don’t have to die alone, quietly, or without sympathy and help.
I hope many people have read your article.
To acknowledge someone is dying is to acknowledge our own mortality. Fear, awkwardness, guilt because you are not sick, in pain, whatever. No words that can heal, comfort. “I am busy, but I can ..” already setting up a flash visit of the do-gooder. One friend who turns up, – ” dont’ know what to say, don’t know what to do, but here I am, I will make a cuppa and just sit with you while you rest, talk, laugh, cry,”- The best thing that happened for me. Honesty and open love, no pretence, no expectation, just acceptance of a shitty situation that nothing was going to change, but we will go through this together, even to the point of hospital bedside vigil until death. God Bless you Sara, may He grant you peace. Maureen Francis.
Sara, my hope is that you will continue to be honest and truthful and STILL have those around you that are true friends. I remember when I had two miscarriages over ten years ago and felt people wanted me to be quiet and suffer in silence, or at least act like I was fine with it all. I hope you will find people who can comfort you, and ignore their own discomfort.
Hi Sara, I have just read your article in the West Australians Sunday Times, I read it whilst spending the first of many trips to visit my elderly Uncle whom has pancreatic and lung cancer. I have since joined your FB site and so agree after nursing my father whom also passed away at 65 with pancreatic cancer. We always celebrate a life but very rarely talk about a death – anyone’s. My 5 year old daughter upon seeing me cry recently asked if her Uncle was going to die and I said Yes straight away. I have a beautuful book I have shared with her called The Life Cycle. I reside 2 and half hours drive from my Uncle and as he does not have any direct family and never married I want to be there for him and have decided to try as often as I can to make this journey. We have already spoken about his will, that he will not get over this, what it feels like to know you are dying. I have worked as a florist for many years and have made many casket arrangemnts, I started taking photos for my clients and have often had them come back and say how lovely to have a memory of the celebration of one’s life. Have you read The Household Guide to Dying by Debra Adelaide? Keep up your honesty and be free to express your emotions. Take care Helly
Hi Sara
Reading about you and your experience with cancer and dying has affected me greatly. My neighbour has cancer and when I heard the news I am ashamed to admit I avoided him, telling myself he probably didn’t want to speak to me either as he is sick and probably doesn’t want to talk about it. What do you talk about to someone with cancer? that’s the cliché. Truthfully you can talk about anything I suppose, let them decide what they want to talk about. I’m going to start treating him just as I did before. You are absolutely right, we are hopeless at dealing with death and the dying.
A friend sent me a text to let me know her sister has stopped treatment and they reckon she has only a few weeks to live. My responding text described her as ‘brave’ etc. But how is she brave? she didn’t choose to be in this situation, she just has to deal with it. Too often people talk well of the dead in tributes and memorials, it’s when they’re still alive it needs to be said, they’re not going to hear about it when they’re gone.
Thank you for this post and for your honesty, it’s what people unaffected by the threat of death need to hear. As cancer affects 1 in 3 people at some time in their lives it’s essential to learn what to expect and how we would want to be treated, to not be left to die alone.
Wow I’m not sure were to start I have just read the article in the Sunday Times in Perth and was pulled into looking at the article in full .
I re read your writing and found tears falling on the table
Why I wondered to myself then i decided to be honest at least with myself for heavens sake.
i have had uterine cancer and I was crying for all the times I wanted to cry but I just kept going so that my family would feel ok so many days I wanted to just stay in bed to just scream to smash anything but I never
i cooked I cleaned and I went to work feeling more often than not like crap
I so get what you have said I feel it with every part of me and I thank you for saying it as it is
I am not scared of death but Iam scared of dying alone
i care for my dad at home and I will do all I can do too keep him at home with us I hope that will be my gift to him
Iam going to promise to be honest with the people in my life
Thank you for sharing and may you continue to vent for a long long time 🙂
Sara, thankyou for voicing what so many people feel. The thing that surprised me the most about being chronically ill was the abandonment. By friends, family and even the medical system. They just don’t want to know about any of it.
I am part of an online support group. Even there people feel the need to apologize for venting. They are always told that they don’t need to apologize. If they can’t vent there, then where else? We are just so well trained not to complain. It is wonderful that you have written about this, thankyou so much!
I am so sorry that you are so very sick. There really is no justice in the world when someone who can write such wonderful books as you do, has to suffer something so atrocious.
Sara, I want to send you a four page article,I recieved via email, I found it very interesting, maybe give you some hope for the future.
please give me an e/mail address I can forward it to.
John, WA
Thankyou for this article. I was pointed to it by someone in our online support group. We die too quietly. So much of our scarce remaining energy goes into “doing the brave and cheerful”, rather than looking after ourselves. Nobody wants to know about our frankly appalling quality of life. Home care packages are cut. The government plans to censor websites about voluntary euthanasia, yet the systematically starved “health system” means we die neglected and suffering horribly. I believe there was a movie (”Network?”) in which the protagonist leaned out of a skyscraper window and yelled, “I’ve had enough, and I’m not going to put up with it anymore!” Me too, but the sicker you get, the less you can advocate for yourself. Sara, you represent us here. Thankyou.
Clytie (severe M.E.)
Sara,
Thank you for sharing, your words are honest and straight from the heart. Mostly, eye opening. I worked for a radiation oncologist for a few years as a secretary and one of the things he told me upon hiring me was that many of our patients are 100% alone. Many won’t survive no matter how hard we try. He explained to me that I am not required to but giving our patients hugs as they leave each day is for some, the only contact they receive. When I started, I was afraid of hugging, touching and such of other people (not just people with cancer! I was molested and raped as a child and have had issues with being touched and touching) but it didn’t take long to hug our patients every day the ended a treatment. To hug their spouses and family members. To celebrate when they completed treatment. To cry with their spouses, children or alone when the hospice/hospital call to say they passed on. I lost my mother 4 years ago to lung cancer and thankfully she wasn’t alone in her last hours. She was surrounded by her children and husband (I didn’t make it home in time).
Thank you for venting! This is not complaining, this is real! We as a people have become so thin skinned and I am so sorry you are sick. Cancer is an ugly, ugly illness and I want you to know that I send hugs from across the ocean.
Sara,
Thank you for writing this. I was sitting beside my sister and sister-in-law when they passed away in a hospital from cancer. I thought it was comforting for me to be with them but maybe the comfort was really in them knowing they had loved ones with them at that time. I understand better now how I let them comfort me when they were one really scare. It is not a good feeling. Because of your letter, I will try to be a better person to those that need help when they are sick.
I am back. I am currently reading The Infinity Gate and I am in love with it (as I was with the previous two books … but somehow, even more). For me, as well as, for all my present and future friends, you are IMMORTAL
Thank you for writing this. I (along with my mom) was with my grandmother when she died many years ago, and as uncomfortable as it was for (I was 16), I considered it a great honor to be there with her to comfort her in her final moments. My mom and I didn’t talk or ask her what she needed every 5 seconds so that we felt useful. We just sat there and held her hand and let her know we loved her. I don’t know in the end if it was a comfort to her or not, but I like to think so.
At age 24, I fell suddenly ill following a viral infection, which led to a chronic neuro immune disease I’ve now suffered with for 14 years. When I didn’t recover from the virus, people didn’t want to hear about it. “Who stays sick for more than 2 weeks?” someone actually said to me. Clearly, I had to be doing something wrong. I was urged to go back to work. To just think myself well. To push past it. And that’s what I did. I did everything in my power to appear normal so as to not inconvenience everyone with my apparent inability to cure myself. The end result? I collapsed. For the last 10 years, I have been bedridden and unable to speak above a whisper. I have felt near death more times than I’d like to think about, and always in those moments, I have been alone.
I am fortunate to have a wonderful, compassionate, loving fiance who understands my situation because he too suffers from the same illness. I have my mom who cares for me as best she can (my dad helps as well but often keeps a comfortable distance). I have a couple friends who have stayed in touch and been very supportive. But for the most part, the rest have disappeared. They don’t want to hear it. It’s too uncomfortable, too depressing, and it reminds them that they really don’t have all that much to complain about.. which is inconvenient.
So, I don’t talk about it much anymore. Like you, I’ve learned to keep silent.
Thank you for speaking up and breaking your silence.
I wish you love and hope and freedom of speech and expression during your journey with cancer. I wish you the right to openly cry and be scared. I wish you genuine support from your friends and family. I hope you are heard and seen. I hope your journey is with as little pain as possible, and I hope when there is pain, there is someone beside you to comfort and be there with you.
You are brave and beautiful.
People before me have said it all, but thank you for this post and I’m so sorry for your situation. I hope it’s all better than you think it’s going to be. I think people tend to keep away because they don’t want to be a nuisance. I’ve just five minutes ago heard that a friend’s husband has died very unexpectedly and I emailed her but thought I shouldn’t phone in case I was intruding. However, I think I’ll phone right now.
Thinking of you.. really – from Scotland.
Thank you. What you said needed to be said. Hope you are getting some of the practical help you need.
Wow,
I am one of those people who prefer to keep their emotions under control and out of the public view, but reading this at work, I had a hard time not leaking like a faucet. I agree with everything you said, even though I haven’t had to deal with this in my relatively young lifetime yet, I believe reading this has made me more capable to deal with these situations when I they do occur, thank you.
I hope that my friends and family can count on me being there for them when/if they want me there, and I can say that it would be because of you.
If there was anything I could ever do to thank you, I would be happy to. Thank you for taking time to write this out, especially considering as you said, the effort it can take to just hold a conversation at times.
I do plan on asking my friends and family to take the time to read this as well, in the hopes it might make a difference for them too.
Mike
Vancouver, Canada
Hi Sara
I read your Article in the Perth Sunday Times and while reading it I knew I would write to you, finally last night I read your blog and most of the comments. I am so glad that you wrote about your feelings and emotions and my heart goes out to you, I wish I could talk to you in person, so much I would like to talk to you about.
I know there will be lots of people disagreeing with me and maybe thinking I’m a nutcase, but that’s ok. I know and I can feel it so that this is God’s will that I’m writing this. I became a born again christian about six years ago, until then I always looked at myself as a christian, but I was so so wrong,there was something missing. All I was, was a Sunday Christian, in and out of church and what did I take home with me, how did I live during the week? I ended up not going to church anymore, I had all those wonderful excuses and after a few years I found myself in the pits, depressed and life wasn’t worth living any more. But God had other plans, I ended up at this church (where I am still going now) and it turned my whole life around. I still have lots to learn, but I know I’m on the right path.
But what I mostly want to share with you is to tell you that God is our healer, HE doesn’t want to see us in pain, He doesn’t want to see us sick or even terminally ill.
Tradition has taught us that God uses sickness, trial and tribulations to teach us. This idea, however, is not based on the word. God has never used sickness to discipline His children and keep them in line. Sickness is of the devil and God doesn’t need the devil to straighten us out.
But even if God is not the source of sickness, you may ask, isn’t it still true that He allows the devil to make us sick?
Yes. Not from the standpoint of correction, but from the standpoint of authority. God allows it because we do. He’s given us the right to make our own choices. According to Deuteronomy 30:19, He has set before us life and death, blessing and cursing. He has further instructed us to choose life. The choice of what we experience is up to us. It has been that way since creation. We have the power to live after God’s way and resist sickness or not to. We have the choice to let satan run over us, or use the authority we have been given.
Healing belongs to us. Isaiah 53 clearly says Jesus has borne our griefs, sickness, weakness and pain and carried our sorrows and that by his stripes we are healed and made whole. As far as God is concerned, healing is ours. Jesus has already paid the price for it. I know healing reqiures spiritual strength and courage. The manifestation of healing doesn’t always come instantly. We want it instantly and many times it comes that fast but other times it takes longer.
There have been so many great miracles, one of them I would love to share with you. In October last year, someone I know shared this with us at church. About three months ago his dad got diagnosed with a rare, very agressive cancer, because his dad is 83 years old the doctors told him they couldn’t do anything for him. A few times he flew over to the eastern states, where his parents live and they prayed together, then he was back they prayed over the phone and trusted God in healing and had complete faith. One day while beeing at work, he got a phonecall from his dad, telling him that he went for a checkup and the doctor said to his dad, “THAT MUST BE A MIRACLE THERE IS NO EVIDENCE, NO TRACE OF ANY CANCER IN YOUR BODY”. Praise the LORD! How great is our GOD! The world gives up on you…..BUT GOD!!!
Please Sara, feel free to contact me any time.
GOD BLESS YOU
Sybille
Hello, I want to add my voice to this well written post. As a volunteer with the chronic and terminally ill I have heard your words many times…..but patients say them only to me, they are afraid to upset their family members, or think they may discourage their friends from visiting. So sad really. We need more people in your position and condition to speak out for you know how your body, mind and soul feels as you go through the dying process.
I know Sybille (above) means well and believes everything she has written but it bothers me for I have lost my husband (hear attack), my son (drug over dose) and I have battled and survived Breast Cancer. Through all of this I have had a strong Faith, so to say that one loses their son or daughter, or spouse or even a parent because they don’t believe enough or pray enough is so not fair to so many people who have buried their loved ones. One is not better than another, one does not deserve to lose their child, I am sorry but I feel using God is just wrong…..I hope you are doing okay.
Wish I were closer to give a helping hand. Keeping you in my heart and prayers….Hugs
Thank you very much for opening up (and shouting out loud) about this. You have given me the understanding that I have been missing. My maternal grandfather died of cancer in late 2007. My relationship with him was not normal. It was distant because my Mum had nothing to do with him as her parents divorced when she was too young to remember. I remembered we only visited him and his family once with our Mother when my sisters and I were little. After my Mum and Dad seperated, my Dad encouraged contact with our ’stranger’ grandfather. Gramps, as he liked to be called, was always happy and excited to see us. Really, it was the only connection he had with his former family. Our relationship with him and his lovely wife, Nanna Pat was pick up where we last left off. Every year without fail, we receive xmas and birthday cards and we often write letters to them.
In 2001, Gramps lost his wife to cancer. All the time we had no idea. They both held back the news of her illness. I accepted it then, I knew Nanna Pat did not want to trouble us or she wanted to protect us (nail on the head for what you have written). We were advised not to attend the funeral by another family member, at the time this upset us, but eventually we saw the sense as we were the mysterious family members of Gramps’ past and it was the majority of Nanna Pat’s family that may have been unsettled by this during the time of their greif. Instead, sympathy cards sent and regular letters.
Gramps struggled with out Nanna. In a way, a whole part of him died with her. A year after, he traveled up to visist us (We all in Roxby Downs, he lived in Sailsbury at the time). That was the last we have seen him in person. Our lives accerlerated with work, Gramps hanging out at his shack in Pt Hughes fishing. Our letters and photos of expanding family sent, he never missed a xmas or birthday card.
Early 2007, I was planning my wedding, invitations sent and rsvps coming back. No reply from Gramps. It felt odd, I should just make a trip down to see him. I got caught up with the stress of a bloody wedding (at the time I regret not eloping!!) and forgotten.
In September, instead of getting a birthday card, I received a phone call from Gramps. He was a little distraught on the phone. He explained he only found the invitation that week. He was devastated to learn the wedding was earlier in May. I remember telling him its okay, trying to tell him not to stress over it. He repeatedly said he was ‘Down in the dumps’. I assumed it was his life without Nanna Pat that was getting to him. And he confrimed it by saying ‘You do know your birthday is the same day Pat died?’. I welled up with tears and said that I knew and I asked him how he was really going. He changed the subject, said that he will be mailing off my BD card with a cheque to go towards a wedding present.
That was the last converation I had with him. The following November, he passed with cancer. Again, none of us had not known.
I have beaten myself up inside for not pushing the issue for what he was going through. I have beaten myself up for not knocking on his door. I questioned what was the reason why he could not tell me? I realised the reason why he would have missed the wedding invitation earlier that year.
Sara, you now gave me understanding on what my Gramps and Nanna Pat went through. And you woke me up from my little spit of selfishness. I make my promise to be open and most definately aware about the scilence of death. My heart goes out to you. Thank you.
Dear Sara,
I must be the only person who hasn’t read this blog entry before now. I can’t tell you how relieved I am that you wrote down all the things I have been saying in my head about sick I am of suffering in silence. I suffer everyday, but you are correct in that people don’t want to hear about it after a few weeks, much less after 2 1/2 years of chronic pain and suffering. You friends DO fade away.. EVERYTHING you said was spot on! So thank you for making me feel a little less alone in my frustration and struggles. I’ll be happy to rake up those nasty black leaves sometimes…
Being sick sucks, but reading a book rocks!
Sara
This was the most eye-opening blog entry I have ever read. I am ashamed to admit that I was one of those terrible well-wishers. It has forever changed the way I will treat my sick friends. Never again will I be so self-important, and all-knowing. I will simply be there for my friends, with no judgement, and nothing but love. In whatever form it is they wish me to take.
Thank you
Erin
Hello Sara
Thank you for letting people know what it is like. I now have friends I have time for and friends that have limited time and contact. My greatest fear is not passing my oncoligists prescribed milestones. I have been in ressession now for 12 months. It doesnt make me feel better, just to put one foot infront of the other to ensure I pass the next.
I would like to join your Facebook page.
Warmest Thoughts
Wendy
Wow. This hit me… I’m 24 years old. My friend Tim has had seizures his whole life. Doctors couldn’t find a reason. Certain medications kept them at bay for a short time. We became friends when I was 18. We would talk on the phone every day, and I remember rushing to his house when his words would begin to slur, afraid of what would happen. Well he finally passed away this year, alone in his kitchen, from a seizure. I never felt so guilty for moving 2,000 miles away. He wanted so badly to be treated “normal.” He never wanted pity. This article makes me feel good about the times I stayed, to get him a cold pack, to call his mom. It also makes me sad to think of how alone he must have felt. It must be truly terrible to to know that you have a terminal illness. Thanks for writing these words, for myself and the world to read.
Hi Sara,
My son downloaded your blog and gave it to me to read. It was like a light going on !! I have mesothelioma which is a terminal cancer and I have experienced most of the things you outlined in your blog over the 2 years since diagnosis – the needing to make others feel better and the people drifting away when I haven’t a: got better or b: died.
Reading your words gave me permission to acknowledge the anger, frustration and isolation that I have been feeling about keeping up a bright, happy “positive’ outlook when I feel anything but that. Thank you for speaking up and breaking the ‘polite’ silence which we (the terminally ill) are buried under.
Beautifully written. Its always such a pleasure reading the Nonsuch blog.
Hi Sara,
Just found this link – thank you for your incredible courage to speak the truth on this topic! We helped care for my mother in law who died at home of liver cancer 2 years ago. At the time my boys were 2 and 6. At first I wondered how to “protect” them from seeing her pain and suffering. After praying about it I felt I was not to protect them but give them the experience early on to be part of death as we all await that fate. A few days before my mother in law died, my 2 year old climbed into bed with her, lied down and asked if he could spend the night and snuggle with her. My six year old also spend hours cuddling, reading, talking, looking at pictures, just being their in the entire process. My boys blessed my mother in law with their love and they are better people for having experienced it. It was one of the most painful experiences of my life being part of her death and watching my young children experience all that came with the agony of it. However today I feel so blessed that we had the opportunity to walk through death with her and I wouldn’t trade it for anything. The truth is for all the stoic ones who try to avoid the pain, they really only delay it and intensify it. In our hearts and souls we know as human beings it’s our destiny to be there for each other in times of suffering. I pray you will have loving caring people around you every moment. Any who have the opportunity to be with you and don’t will be losing a part of their humanity in the end. Your words of wisdom will live on and change lives, I’m sure of it. Thanks for writing so honestly and eloquently.
Wow, Sara, you have rocked me! So maybe my not having any close friends is not that I’m boring, but more that I’m too honest about my feelings??!!! I’m not good at hiding how I feel – chronic pain and fatigue gives me nothing for holding up walls – I tell all. I am so sad at your situation, and selfishly wish I could help you in your garden, as I have so often wished someone would offer to help me in mine. I have long been a fan of your writing and hope to read many more:) Very best wishes to you.
Hi Sara
I have just been given this link and I must congratulate you on having the Kahuna’s to give a voice to what is in the hearts of so many!
Recent events in my own life have forced me to re-evaluate how I perceive the world. As you said after initially finding out what has happened , no-one seems to be interested in how a person really feels, they want/need to feel as though they are “getting on with it ,fighting the good fight, keeping their chin up, being a trooper”or any one of a thousand cliche”s.
We seem to to forget that sometimes people need to scream their rage at the world, or to just have a good cry or a whine about the unfairness ,the pain, or just things in general,but as you said somewhere along the line these needs have become an “inconvenience/embarrassment” and even talking seriously about death seems to be frowned upon.
Why ? perhaps it reminds us to much of our own frailty, perhaps if we dont think of it / aren’t looking at death then death might not see us at all and forget about us, or perhaps we have become so wrapped up in our own little worlds we simply cant/wont/ dont want to be reminded of the pain and hurt in the world outside our front door, just maybe if we keep that door closed and just take an occassional peep out the window it will miss our own little house all together just like death.
I too would like to see this article published, I think perhaps it will help us to re-examine our attitudes to those around us who are dying.
This is your life it is being taken from you in a cruel, painful, really shitty way, I applaud you for speaking out,
I believe Shakepeare had it right, if you need to
Do not go gentle into that good light
Rage Rage at the dying of the light.
I hope you achieve all you need to before you die.
G’day! Sara I’m here “unconditionally”, always. No agenda. The impartial ear still hanging off my head, and you know i have never been one to go out of anywhere or anything quietly. Any time, convenient to yourself! xox Haych
Thanks Haych – I have made note of your number and removed it from your post. 🙂
Don’t be silent. Don’t be careful. And don’t be sweet. We’re here. We want to hear what you’re going through. We would like to help (even if we can’t).
Thank you so much for sharing, and please keep doing so.
You’re right. You’re absolutely right. It’s something I’ve never understood myself, why we isolate the sick and dying from the rest of us. Why we expect them to comfort us when they’re the ones who are suffering.
My first experience with a loved one dying was when I was 11. My Grandpa George was a very large and gentle man, with a heart of solid gold. He was diabetic, and about 73 years old. He had been a trucker until his 66th birthday, he drove all over North America, but would always stop in our city to give us souvenirs from everywhere he’d gone. I treasured those nights when he came to visit.
His diabetes worsened at an alarming rate, and by the time he was 74, he was completely blind, with no use of his legs, and had lost his perception of time. I won’t say he lost his mind, because he was very much still the same man, just… not where he thought he was in time.
He was living with my aunt for the last of his days, who was in a different province than we were. Still, we made a trip out to see him a month before he passed. I spent a lot of time with him, he liked to listen to the TV, so I would watch it with him. He thought he was in his truck, driving down the coast again, and I was so happy to pretend I was right there with him. I knew when I left that I would never see him again, and I was so angry that he had to stay there in that house, all alone. Sequestered to a quiet room in the corner of the house, only having company when he was to be fed, or changed, or rolled. I wanted him to go out with everyone he loved with him, but it didn’t happen.
He died the day I was hit by a car, and my parents didn’t tell me for 2 months, they were afraid I wouldn’t be able to handle it. I miss him still, and I vowed to do better.
You are my favourite author, and I have been raking your orchard every day for the past year and a half. It’s where I go to meditate, and I want you to know that you’re always in my thoughts.
I wanted to thank you for finishing Darkglass Mountain, they were amazing and I’ll cherish them always.
Sara, I’m here for you any time, night or day.
1 (000) 000-0000
xxxxxxx@xxxxx.com
You’re a brave, kind, and inspirational human being. You don’t need to suffer in silence.
Tassia, thank you for your post.
“My Grandpa George was a very large and gentle man, with a heart of solid gold.”
I hope someone will say that about me.
And, “He thought he was in his truck, driving down the coast again, and I was so happy to pretend I was right there with him.”
For that I love you dearly.
Thank you Sara for you post. It made me a better man even if I am not going to be around long.
Wes
Along with all the other comments of support, I would say don’t cut yourself off from those who do ring occasionally to express that they are thinking of you. Perhaps they also find it hard, or don’t know what to say. Perhaps they are a long way away, or they fear rejection if they offer to visit. Your illness most certainly does affect you greatly, that I don’t dispute but you do not carry the load alone. The pain won’t go away, but at the same time, don’t feed a situation where you are a a stranger to those who do care and who do love you. How often do you reach out to them, to ask how they are, or tell them how you are really feeling? There is nothing wrong with telling them that it hurts or that you are totally p!ssed off. But communication is a two way thing and perhaps they would like something more than a heart, false cheerfulness
And like you, I have lost a Mother who suffered silently for years and died alone in hospital. I took that five past six phone call one morning to be told that my Mother had just died. Why did I take the call that morning … because my Father was working very long hours hundreds of miles away to try and keep our family together. Like you, I too know the pain of losing loved ones. I too cry with inadequacy when I don’t know how to help those I love but know that I will loose way before their time.
In fact, like you, I have had my share of early morning phone calls that are made to notify loss and I dread the one that I know will come to tell me that I have lost a much loved sister.
I do believe that bit by bit we are going to get better as a society in this respect. There is much more talk in the public sphere about cancer in particular. My experience is that many people would like to be more appropriately involved with sick friends/family but don’t know how. They don’t understand that the small, practical and often easy things such as doing the shopping, or sitting companionably, or asking ‘what’s today been like?’ are so significant. We need to educate people bit by bit about how to go about good caring.
“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”!
• Speaking of which, all my attempts to bring to public attention a very touchy subject matter on the facebook, pertaining to the Ovarian Cancer Wrongly Diagnosed Casualties, fell on deaf ears. Unless facebook operatives were hell-bent to keep it out of sight out of mind. Sadly, published content didn’t appear in any search engine findings in spite of ticked, allow public listing check-box. Manifestly pointing to the required public search provision and thus search engines indexing.
I am hoping that by now you are feeling more energy and more strength and are enjoying your beautiful garden and home. I live in NSW so am unable to be practically supportive but I did think that maybe I would buy copies of your last series instead of reading them in the library. Perhaps if all of us bought your books instead of borrowing them that could help you by ensuring your cash flow while you focus on your health and psyche.
I am following your blogs on growing and preserving your own food and have been inspired to follow your lead. And I will rake up some of your garden in my mind when I have quiet moments. May you have the support and love around you that you deserve and long for – may you find miracles.
I found your story through Karen Brooks’ blog. She wrote about this topic in a recent column in the Courier-Mail and it “struck a chord” with me. Since July 2008 I have had a chronic condition leaving me with spinal cord damage, unknown cause. It is not life-threatening as yours is but I can relate to your comments about people wanting you to be better and sometimes not wanting to hear that I haven’t improved. I had a friend who was an inspiration to me who would visit and give me her time though she had cancer for many years. Sadly she left us early this year and your words made me think of her and how she passed. I hope that she was able to express her true feelings to someone, as with me and others she was always cheerful. Thank you for having the courage to write this.
This is a well written piece that got me thinking. It is a luxury of our modern life not to witness death at an early age. In the past many families lost children, and we didn’t have as much medical help to relieve pain. I am actually thankful that as a child and young adult death was a stranger to me. When I got older and saw my parents and many friends die I felt quite unsettled and a sadness descended on me that I know will never leave. I have been ‘battling’ cancer for several years now, and for the time being the grim reaper is held at bay. At the beginning I thought the term of ‘battle’ was a little silly, but now I feel it is relevant, at least to me. Perhaps we are not brave and perhaps we have no choice, but I think that is also true of many soldiers.
When my children were small I tried to introduce them to death by letting them be involved in the dying of our family pets. Even that is taken away from us now, our pets are taken away and ‘put down’. I feel we should have some kind of festival like ‘the day of the dead’ which they have in South American countries.
Love your view point! Strangely enough I learned how to die at 18. Being the child of older parents, friends and family died when I was young. I grew to hate death, I had no acceptance of the process.
At 18, I began working at a Nursing/Rehabilitation home. The RN that managed my wing of the unit, would have someone sit with those that were dying. She said “No one should die alone in an empty room.” We were encouraged to, hold their hand, read a book out loud, sing, or something that would let the person know they were not alone.
What a gift! I finally knew how to live with death.
My Aunt Bea had lost her husband George, Jan. 2002, she was with him. She spoke to him through his death.
My Aunt Bea passed from cancer in July 2002. (she was too busy for Dr’s and wouldn’t leave George’s side) Myself and 3 of her friends sat with her, held her hands, spoke to her, and prayed. It was peaceful, emotional, grief filled,….. Through the process of both of these deaths, I was asked by people what can we do? My reply was: Aunt Bea needs groceries, here’s the list. There is laundry to be done, could you help with that?, Could you make a meal for them on Sunday night, so I can go home and be with my family?, Can you come sit with Bea for a few hours, while I go get meds? Could you come spend the night, so I can go home to my family? Do NOT send cards, do NOT send flowers, come visit and be helpful. The response was wonderful, people really did want to help, they just didn’t know how. We had offers of meals, shopping, and everything she needed! People came, they cried, we cried… The comfort came from, dealing with death, sharing of fears, and just being together. If Aunt Bea needed to talk, there was always someone there to listen…..
My mom passed quite suddenly July 2006. While she had health problems, it wasn’t thought to be an imminent conclusion. My dad was with her, he was beside himself not knowing what to do. I wish I had been there to comfort them both…. Dad didn’t need much help, but if he did, he wasn’t shy about asking for it! LOL
My Aunt Ginny, passed Dec. 6th 2010, she had a stroke about 1 year prior. Being as my Uncle Charlie is 89, his era was one of defined roles in the home…. he never learned how to cook, clean, do laundry, or work a microwave. Hard to believe in this day and age. LOL We were asked again, “What can we bring/send, to help?”…. The answer was always, “You, your time.” The response was AMAZING!
For 1 year plus, he has had: meals provided EVERY day, help with cleaning, laundry, dishes, shopping, pharmacy runs, overnight helpers, etc… There was a calendar on the wall, with the all people that had signed up to provide help. Uncle Charlie had a friend that fielded calls, and asked people what they were willing to do. The response was HUGE, there were so many people that provided meals, they only had to cook extra once a month!!! There were offers of cleaning, laundry services, and overnight stays!
He even had people that would show the most humanity, and come help wash and clean her, several times a day!
While my Aunt was sick, he had her hospital bed placed in the living room. Charlie would sleep in the same small bed with her, holding her through the night. When you visited, you visited them both, she was not locked away in a room by herself, hiding her to make others feel comfortable. He spoke to her, as if there had been no change. If you had grief, it was shared with all in the room, there was nothing to be ashamed of!
When the time came, and Uncle Charlie knew she had only moments left. He and two friends were sitting around her bed in the living room, talking. She opened her eyes, but did not see….. Charlie climbed into bed with her, held her in his arms, and whispered prayers and love into her ears…..
People are still, helping Charlie, they still bring meals, help him clean, and offer services…. My hope is that others will see what took place, and take that with them.
I believe people wait to be invited to the death process. Over the years as you wrote, death has been hidden, ignored, and locked away. Feelings are repressed. I’d rather have someone to cry with, and share emotions, fears, and anger….
While I help, I bring my kids with me, so I can show by example. Involve them in the process… My kids are great at doing what needs to be done! They don’t shun the process, as others would do. I share the feelings, and explain the workings of death, so they understand death is not something to fear. Sometimes, we just listen, and hold a hand, or share a laugh. Whatever is needed, we try to do, we ask, “What do you need?”
Death is not polite, it won’t ask or care if you are ready!
In 2008 I was diagnosed with ESS, right now we are watching to see if it progresses. I am VERY fortunate, the Dr’s believe it was all removed with surgery.
One can only hope that I’ve learned enough, to handle my own death. I’d like to go out “one hot mess”. LOL I want to be able to share whatever I need to, and to just have someone to listen, when the time comes.
Great blog, wonderful point!! Thanks for sharing.
Dear Sara,
A month ago a woman, our “Head Goose” succumbed to the rare cancer that we, on our site, all have and battle daily. Since the cancer itself is rare, we “meet, greet, and know” each other on the website because in most cases we all live in different states and foreign countries. She had fought this cancer for almost 30 years and was known as one of the longest survivors. She and some other women started the group to support other women who were newly diagnosed; provide a place for love & support; to share information about successes and tips only one of us would know because we are the ones who live with this disease. Through to her last breath she used her iPad to communicate with us and we sent messages of love and support to her as well. She let us know what she needed and did NOT need or want; this was our guide to serving her as she was dying. She knew we were with her as she passed.
Two years ago I lost both my father-in-law and my father. Since my mother would not allow me to know my father was ill, nor would she allow me to see him, I received notice in a telephone call two hours before his death from my “sister”, who wouldn’t disclose my father’s location. I didn’t get to see my father before he died. The last time I DID see him he told me that I would not see him alive again. We talked about things, made peace with one another, and I told him if he would call me that I would come. I also told him that if I wasn’t there, it would be because I was not called, because we both knew my mother would not call me. And she didn’t.
On the other hand, I was able to help care for my father-in-law (I am a nurse as well). He was kept alive on a medication which is only used in Intensive Care for brief periods of time due to its ability to damage organs. On the day before he died, in hospice care because the 7 of us caring for him at home got the flu that was going around the hospital where he was staying before he was sent home. I am sorry to say that he SUFFERED greatly. His two sons and his wife would not give him permission to leave this life, so his suffering went on until that last day, when he “perked up” for a few hours. At about midnight, my mother-in-law started to “shoo” people away, sending them home. I told my husband that I needed…..WE needed to remain. I told my mother-in-law that we needed to stay and bid her goodbye. My husband fell asleep in the recliner chair three feet from his father’s bed. I sat on a chair, holding my father-in-law’s hand because he was so terrified to die. For the first couple of hours he talked about things from his life, what he regretted, what he was pleased with and then he closed his eyes, mumbling incoherently. The staff came to turn him, clean him, etc. and I continued to hold his hand. He was trying to speak and got frustrated because I couldn’t originally understand what he was saying. Then, it came to me: his last thoughts were of love for his wife and children! I told him I would tell them just that and said, “Fred, it’s time to go now, it’s okay, we’ll all be okay and you need to stop suffering.” I told him I understood, would tell his wife and sons of his message. I stayed with him, holding his hand and asked him not to be afraid, he squeezed my hand one last time as I watched his spirit leave his face. I am one of those who does not fear death, rather, I fear dying poorly……with prolonged suffering and with all the people who feel compelled to visit, etc.. I have told my family that help IS what help MEANS to the person receiving it. I have held many hands of many people as they pass away. I don’t know what they’re going towards and sometimes I can see them reaching out for someone that I cannot see.
Sara, thank you for your message, and I hope and trust that you will have EXACTLY what you want and need, when it is your time to go. Blessings, now and always.
Sara, thank you.
Death is so unfair. Illness is so unfair. It’s certainly not a comfortable part of life and nobody should be forced to pretend otherwise. I don’t rejoice in either and would love to be able to put a stop to both. Seriously. My dad also died alone and I railed at the fact that all I could do was phone during the night. The nurses were wonderful … but in the end they were doing rounds and so many patients need attention. Would he have wanted me by his side when he died? I don’t know – he was a very private person and very “old school” being a ’stoic Scot’.
People don’t know what to do to help. Tell them what you need and don’t hold back. I wish my schoolfriend had told me she was suffering anxiety and depression before she took her life. Be open about things. Shout it out.
Those who have suffered know how to give comfort – they know where you’re at because they’ve been there, faced it before. Others have a genuine gift and there should be more of those in the world.
Do what you can to satisfy your desires. Live the way you want and ‘leave’ the way you want. You’re an inspiration to a great number of people. Thanks for teaching us so much.
Dear Sara,
All I can offer is my kindest thoughts for you comfort. If you have the strength you might want to have a look at the SS site. Lots of goodwill and kindness for you there.
Thinking of you often.
Kate
Thank you. I have read your books all the way from the first Axis Trilogy. This piece though was such a generous gift to all of us caring for family and friends. Thank you for telling me what my friend hasn’t and for reminding me of what matters.
God Bless
“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”.
Sara, exactly the same happens when one is grieving, there is only one concern in those around you: Get better soon and don’t remind us of anything that has to do with death.
It starts as a lonely process, but at some point one finally realizes that one is alone in this process because it is so unique that anybody else becomes superfluous – or at least anybody else who expects that one gets better and soon – and then it is no longer “lonely”.
Sara, I am a phone call away *anytime* for you.
It is Mark from your old forum. I have been so self absorbed with my own health problems I did not know of the return of your cancer. I thought you were in the clear and was shocked a few minutes ago to find I was mistaken. What you have written here is thought provoking and so true when I remember the experiences of those close to me who have died after prolonged illness. I am sorry I can offer nothing but platitudes from here. Thank you for being who you are and sharing a lot of it with your fans. The time you met and had lunch with us Forum members at P.J O’Briens many years ago remains a fond memory of mine. Goodbye for now. Perhaps we will meet again in that field of tulips?
Sara,
I know I am reading this late and do not know if you will ever see this or if it will simply be buried in the website.
I have read this post and I am so glad I did. As a 22 year old in the masculine society of Australia I have often felt the pressure to be stoic and suffer lifes pains silently. But when I am alone in my own thoughts I am petrified of death. So often people say those cliches such as “im not scared of dying” and I thought that maybe there was something wrong with me that I could not reconcile this fear within myself. So again I thankyou for sharing your thoughts.
Thanks Again
Allen
I was overcome with the honesty of your essay. Your words reinforce my own small unpopular thoughts. We each deserve to look with last eyes at those we love. I wish it for me, for you, for us all.
I totally agree with you. This post really touched me as my darling father died alone in a nursing home, just hours after I had left him for the evening. To this day, ten years later, I cry about it often. I hate he we isolate the dying, hate it with a passion. Thank you for writing this article, it is very cathartic and when I originally read it I broke down crying. I have recommended this post to a number of my friends and I commend your bravery and insight.
Oh Sara, you will be greatly missed! I was so upset to read of your passing this morning, you have been an inspiration to us all and my most favourite author ever, my bookshelf is full of your works! I hope your final moments were spent with someone who cared enough to make sure you didn’t die alone and uncomforted. I feel terribly guilty as I wasn’t even aware you were ill, let alone sick unto death.I suppose it doesn’t matter now, because you are ‘at peace’ as they say. But how can they be sure?
farewell Sara your writings and wisdom will be missed.. ( A freind from Simple savings )xxx
that should be friend xx
What a beautifully articulated window into a reality I haven’t wanted to look at. I feel like a better person for having read it, and will certainly approach people with terminal illness in a different manner. Sara’s legacy is so much more than only fiction.
It saddens me to think it has taken a facebook post about Sara’s death for me to find her blog. What I have missed out on. I shall spend the next few days reading through it as this blog entry was so full of things that people don’t talk about. It is enlightening.
I hope someone was with you at the end Sara. RIP.
I am only sorry that I didn’t discover this blog before. I had Hodgkins Lymphoma, thankfully clear, and the number of people who said they wanted help but couldn’t be bothered was amazing, but there were also people willing to help, willing to share, who I now regard as my closest of friends.
I’m sorry I discovered this blog through your death, you brought tears to my eyes. Thank you for your writing.
Your article was sad but truthful and very moving. I hope you had someone with you in the end. Rest in peace Sara Douglass.
My mother had her first stroke when I was sixteen. I spent the next seven years of my life taking care of her until she died. She died holding my hands and crying.
During the time she was sick, only one of her many friends stuck around. All her life my mother had done everything for everyone and when she needed help, they all disappeared. I learned a valuable lesson at that time. The only friends that matter are the ones that will stay and clean your sink when you are on your knees vomiting. All others need not apply.
Three years after my mother died, my father died. Unlike my mother, his was sudden, an aneurysm that took him away from me in an instant. I spent the funeral and wake comforting everyone else. I had lost my father, yet I was the one doing the comforting! I was expected to be brave, sweet, stoic. I am still angry about it. No one wanted to see me cry and I felt too much their discomfort to simply scream and rage like I wanted to.
The dying get short shrift in our society, no one wants to take the time to help out and see the face of their own mortality. But the ones left behind are also abandoned. No one wants to know our grief and pain. Both my parents died while I held their hands and told them I loved them.
But I cleaned that house alone for seven years.
Thank you so much for writing this.
My father was an absolute asshole.
No, wait for it, this is relevant.
As I read this, I couldn’t help thinking of him. It’s been a little over a year since he passed away, and I still remember it vividly. He, too, had cancer, and it struck him down FAST. He first started showing signs of something being wrong (misdiagnosed as pancreatitus and ulcers, among other things) in November of 2009. He was in and out of the hospital. He was gone as of June 28th, 2010.
But my point is, he refused to be sweet, stoic, or silent. And he knew from the beginning, I think, that this was the end of his road. And he was NOT going to go out silently. It didn’t make it easy on those of us who wound up left behind, it didn’t help us be comforted or think that he would be alright. At the time, I admit… part of me resented him for it. The very, very selfish part of me, I admit. I was scared, I didn’t know what life would be like without him, and I couldn’t imagine it. I was scared. My fiancee was scared. Mom was scared. My brother was trying to be the stoic one, and my sister was succeeding at being stoic. But I made no bones about being frightened.
Dad did comfort me a couple of times, but I remember feeling bad about it later… I’m the youngest, and he did worry about me. But in the end, all I cared about was that he knew I loved him, and I know he loved me. And I realize I knew that all along.
He railed against the doctors, he complained, told them they were missing something, demanded pain medicine to the point that he convinced an entire hospital that he was addicted to the painkillers and there wasn’t actually anything wrong with him. IT got to the point that a doctor called the HOUSE to talk to mom and told her that he refused to have anything to DO with dad and his “damned addiction” anymore. The doctors convinced us that he was addicted, and that he was fine… And then one of them listened to dad and did some more tests, and they found cancer. Already stage four.
I have a serious dislike of hospitals now because of this.
However… having read what you’ve written has given me a whole new respect for the way dad handled his sickness and death. I can’t blame him. I don’t want to die. I certainly don’t want to die in pain as my pancreas is slowly replaced with cancerous tissue (the autopsy revealed that he had less than 14% of his pancreas left at the end… no wonder it presented as pancreatitus).
I resolve not to conform to society’s norms. I may be called an asshole posthumosly, but damnit, this is my life.
Thanks dad, for teaching me the right way to say goodbye. Raging against the universe and resisting to the very end – we should definitely take a page from the way death USED to be handled. It’s a horrible thing – yes, it’s a part of life, but there’s no reason we should just accept it and roll over.
And thank you, for writing this, even though I’m crying now. Thank you, for making people think.
Thank you for this kick to the head. I’ve generally tried to follow a rule of doing helpful things for the folks I know who are dying, but a lot of people who don’t want to do that have asked me,”Why don’t you send a card or something?” My mother was an RN in ICU for years before she retired, and she taught me that it’s ridiculous to project your own need for ease and comfort and what has become in modern society “Box-checking” on people who have really serious problems, dying falling into that category. Box-checking is my term for what happens when people see a situation that needs to be handled or reacted to, and they do something–send a card, etc.–and feel that they’ve “checked the box.” They have done something, so they don’t need to feel the need to do more. Thank you for making it plain that this is not what is needed, that actual help is what’s wanted. Please publish your article so that this information gets the exposure it needs. More people need to know this. Bless you for sharing your experience. You have done a real service.
I hear you.
I’m listening.
Thank you.
Beautifully written, open and raw, how shallow we have become for a so called modern society and then to add insult to injury the family’s left behind are expected to deal with the loss of their loved one’s stoically and sweetly and get on with life. In some cultures your are given time to grieve and openly display it and how I wish I could do just that!
Dear Sara
I have read bits and pieces of your gardening site as I have had time. I have enjoyed reading it. This last entry is just so sad and I feel for you. I live in Adelaide and cannot help you, but my prayers are with you and your family and helpers. I cannot do much else at this distance but pray for you and hope that you do not die alone. A few years ago a group of us sat with a lady as she lay dying and I hope that you have friends and family with you. I really hope that you will be allowed to stay in your garden which you have filled with your energy and your love and have made it into a healing place of beauty. Good luck to you and your family.
God Bless you for your honesty and the courage to say what you feel! You need to know that you are allowed to feel this hurt and annoyance. You do not have to apologize or ease the pain of others all the time. You need to save your strength for yourself and your survival. It is OK to be angry at life, the universe and everything. It is OK to feel tired of your illness and keeping up a facade!
(This is in addition to the last entry – Sorry I Pressed the wrong button too early)
Now you can rest in peace Sara. The rest of us will continue on the shouting for you.
This has been an amazing read! I know Sara Douglass only from her endorsement of the Colin Taber ‘Ossard’ novels and was sad to read of her passing as a member of Simple Savings. Thank you, Sara.
Please do not be stoic and silent. We need to “occupy” death and chronic illness. I read your writing for the first time today. I have no idea what other topics you have written on. A fellow patient with chronic illness shared this article and that’s how I found you. We need what you’re saying. Thank you!
I hope you find happiness, Sara.
And to all you disrespectful douches who come on here to advertise, pretending to read her words and then write a comment that is so rude I can not describe it, makes absoloutly no sense, and butchers English grammar as we know it–
Get out.
To all the people on here who expect Sara to “holler” when she wants something…helllloooooooooo, she isn’t going to do that, you need to get off your backsides and go to her & DO SOMETHING FOR HER. Weed the garden, make a cuppa, do the dishes, do the laundry etc etc etc. Don’t wait to be told what she’d like. She isn’t going to tell you. You’re exactly the same as the people she’s speaking about, you just hide behind the cop-out by saying “tell me if you need anything”! Of course she bloody needs things. JUST DO IT!
I don’t know that everyone feels like you do. They may from time to time as they go through different stages of grief. I don’t know anyone with a terminal illness who has died alone either by the way. Not everyone is of the same temperament or personality as you. Fine, if that’s how you feel. I’m all for people feeling the feelings they actually feel but again you need to allow everyone the freedom to feel what THEY feel and not tell everyone that they need to feel like you do about their illness. Why are you so alone for starters? Plenty of people want to stay really positive because it’s been proven that much healing is derived from our positive outlook. How do YOU know staying positive doesn’t make some people feel better? It doesn’t make you feel better but you’re not everyone. I disagree that we shun death as well. You make some good points but I don’t agree with it all.
Sara, your post has done wonders for me over the last year. I’m so sorry that you’re gone. Your works were wonderful, your gardening inspiring, and I’m eve learning to preserve! And I’m in Vegas, it’s seriosuly work. When I read this, you were already gone, but what you wrote, lives on and has, at least, changed this person. I love you and you’re beautiful, wherever you are. I hope you went loudly, proudly, and without a hint of sweetness! 🙂
This article changed the way I looked at death and those near it. I now know how to be more supportive to those in need:
-let them know that its OK to be sad about dying and to share that sadness
-support their day to day activities if necessary (likely)
-be with them when they die.