Cancer

Welcome to Sara Douglass Worlds

Welcome to SaraDouglassWorlds.com, the new cyber home of the extraordinary writer, Sara Douglass, originally located at SaraDouglass.com. Many of you will know (and I apologise in advance to those of you who are about to learn this) that on the 27 September 2011, Sara died of ovarian cancer after a long and extremely painful struggle. After her death, I was told that she had entrusted her literary estate and creative legacy to me.

sara-karen-in-nonsuch-gardensAllow me to introduce myself, my name is Karen Brooks and I was Sara’s friend for over twenty years – a writer and academic like Sara who was not only my beloved friend, but mentor and inspiration as well. Along with my husband, Stephen, I was Sara’s primary carer for the last nine months of her life. The best and worst thing I’ve ever done…

Humbled, privileged beyond words with Sara’s amazing gift, it has taken almost three years to resurrect her website after it became swallowed by red tape, ridiculous legalities and what appears to be a great deal of ineptitude on the part of various domain providers and hosts. Not even lawyers’ letters and emails, threats and promises could restore what was now rightfully mine – this precious legacy I’d been given. I despaired – I really did. But, just when all seemed lost, a woman named Gina (and new fan of Sara’s) swooped into my life and accomplished what I begun to think impossible. Due to her perseverance, incredible contacts, energy and knowledge (as well the generosity and support of my own website host and designer, Oliver from MediaBox), we now have saradouglassworlds.com and nonsuchkitchengardens.com to enjoy.

Thank you Gina. I cannot recommend this lady highly enough.

While I’ve made the decision to maintain nonsuchkitchengardens as a memorial site, this one is different in that not only does it contain some material you may not have seen before, I will be posting updates when relevant and invite you, Sara’s fans, to post your views and share your insights and pleasure in her work with each other. If you have anything you’d really like to know or see, please feel free to ask – though, be warned, asking doesn’t always guarantee the answer you might like 😉

I have also duplicated some material across both the Nonsuch site and this one as some things are too important not to – such as Sara’s Silence of the Dying blog post.

I hope you enjoy the SaraDouglassWorlds.com as much as Gina and I have enjoyed bringing it back. For those of you who knew Sara and her wonderful imagination, it’s a bitter-sweet experience revisiting your favourite places and characters, I know; for those of you who have only just stumbled upon her work, I envy your voyage of discovery.

Whoever you are, old fan or new, you are a friend and I warmly welcome you to the worlds of the wonderful Sara Douglass. May you soar with the stars.

Karen Brooks
8th April 2014
Hobart, Tasmania, Australia

Karen Brooks: One year on…

It’s hard to believe that a year has passed since Sara died. It’s not that the reality of her death isn’t apparent; the ache of her absence is constant and painful. Rather, I think it’s because through her books, short stories and lingering cyber-presence she continues to touch, challenge and move us.

In some ways, it’s as if she’s still here.

Like many of her friends and fans, I’ve been reading her books again – it’s a way of bringing her closer, providing comfort in bleak and sad times. What re-reading her novels has also served, is to remind me of what an astonishing talent she possessed.

From her very first novel, BattleAxe (which changed the landscape of fantasy publishing in Australia) right through to her final books, The Devil’s Diadem and the posthumously published collection of short stories, The Hall of Lost Footsteps, the breadth and depth of her work, the way she used and transformed history, invented complex and rich societies; the liveliness and courage of her characters, their weaknesses and strengths, passions and foibles, are all there to enjoy whenever we want.

The problem with this, of course, is that the experience is bitter-sweet. On the one hand, you plunge into a novel (actually, you’re grabbed by the throat and dragged into the world between the pages whether you’re ready or not) and lose yourself in an astounding tale. On the other, once the final line is finished, there’s the cruel reminder that never again will there be the opportunity to dive into a new Sara Douglass invention.
Every day around the world, someone who has had the Douglass experience wakes to the knowledge that they won’t again – at least, not in the same, thrilling way that first encounters engender – and they too mourn what we’ve all lost.

For those who are Sara Douglass Worlds’ virgins, understand how much you’re envied. But how lucky are we that she’s left behind such a legacy for us to discover or revisit over and over and extract whatever pleasures, memories and wonder we can? That was Sara’s gift to all of us; one she willingly and lovingly gave.

Then, there’s also the powerful truths contained in her blogs, like the one reproduced here, The Silence of the Dying. Here, Sara discusses death, giving voice to those who cannot speak for themselves as well as bearing her heart and fears in such a raw and frank way. Reading it again isn’t easy, but it is a privilege; a difficult, demanding one, but a privilege nonetheless and I’m grateful to Harper Collins and Voyager for this.

Sara’s words, the lyrical, sensual, sorrowful and authoritative, however, are only one aspect of Sara’s life and thus death. For those who truly knew and loved her – those few whom she admitted into her extremely private world – her loss is both a yawning chasm and a constant whisper, a murmur in the heart and soul that reminds you of the joy her love bestowed and the anguish it’s no more. The song of her surcease should be sung – not as a dirge, but as a sweet refrain.

In commemorating Sara’s death, I think it’s more appropriate we remember her life. We should, on this day especially, celebrate her accomplishments. But let’s not forget the amazing, beautiful woman behind the words – her knowledge, compassion, honesty, empathy and her delight in a life cut brutally short.

We’re so fortunate Sara’s spirit lives on her words. Every time we read or recall these, it’s comforting to know that, like her characters, she is also brought to life again and again and again…

Karen Brooks


This memorial was posted on the VoyagerOnline blog, you can read the post here.

Karen Brooks: Loss, Grief and the Healing Power of Words

Editors note: This article was taken from Karen Brook’s personal blog.


I have been absent a while, haven’t I? For that I’m so sorry and please, I ask that you read and accept this blog as a rather poor attempt to both apologise  and explain why before I beg your forgiveness and let you know that I’m back and invite you to return as well…

karen-sara-selfie-kitchenThe reason I’ve been gone is twofold: I’ve had several operations this year, related to post-cancer complications, and which mean I now have a pacemaker. It’s been hard to become accustomed to and I’ve had periods of terrible illness and pain. But all that pales by comparison with my second reason for deserting this cyberspace and puts what I’ve been through into perspective – the terrible illness and death of my beloved friend, Sara Warneke who most of you know as the writer Sara Douglass.

Ten and half months ago now, my partner, Stephen, and I shifted temporarily to Hobart, Tasmania, to care for Sara as she tried to deal with the last stages of ovarian cancer. I have written about this elsewhere, mainly in my obituary for Sara on the Voyager website a day after she died.  You can read it here or on the Voyager website.

(I should add that Lucy Sussex also wrote the most amazing obituary for Sara that’s appeared in many newspapers.) I also write about Sara – her life, influence and works as well as our relationship that spans twenty years – in the Introduction to the beautiful compilation of her short stories, The Hall of Lost Footsteps, which was published posthumously by Tinconderoga Publications.

HallofLostFootsteps-200x300Together, these, along with a brief piece I wrote about Sara in Australian Author, explain the months and weeks that led up to her death and give a glimpse into our long-term friendship. What none of these do, however, is elucidate the impact her death has had in other ways and on other people – not just me, but Stephen, her other very close and loving friend (and mine too), Dr Frances Thiele (who adored and was in turn, adored by Sara), or the grief felt by her family, other friends, and loyal fans.

While I always knew the day of Sara’s death would come and, as she became sicker, tried to prepare myself (as did Stephen), it wasn’t until almost a week after she died, that the reality of her absence hit me. She really wasn’t going to phone or text me again. When I went to her house, she wasn’t going to open the door and fold me in one those tight hugs I loved receiving. She was gone… for real. For good. When the realisation struck, I felt like the sun hadn’t gone behind a cloud so much as imploded; as if the lights had gone off in not only my house, but, for the time being, my life, and plunged me into a grey world of shadows and murkiness leaving me to stumble and misapprehend.

Sara had been my anchor for the last nine months, my life had been tied to hers in the most intimate and loving of ways and now, suddenly, I was cast adrift. I could no longer talk to her, hold her, share my thoughts and fears, and she couldn’t with me either. A part of my world that, despite the encroaching presence of death was remarkably light and love and hope-filled, had been swallowed by darkness and, worse, an enormous silence that I didn’t see, despite everything being there in front of me, coming. It was the strangest and scariest of sensations. There was not the silence associated with quietude or stillness, but an agitation that had no way of being expressed or relieved. As if the frequency we operated on and within could no longer be tuned. There was only static, no clear signal. Weighed by grief, I swam in circles, barely staying afloat, my ears pricked for a sound, a sign, for a signifier that this lostness was temporary. For Stephen it was the same. We lived and worked in a haze, thinking we were coping when in reality, we were sinking into this hungry silence.

And yet…

Every time we spoke of her, recalled something either with each other, or Fran, or someone else including the many and beautiful homage on FaceBook and other cyber-pages, the silence cracked and the load diminished slightly. Memories came in the most unexpected form and ways. The first time Sara’s cat, Luther, walked into my arms and curled into my neck like he’d always belonged, giving me the audible cuddle that we call a purr, an image of Sara with all her cats surrounding her filled my mind and put me strangely at peace.

sara-frannie-kitchenI laughed out loud, scaring the other cats and, most of all, myself – but not Luther. After that, each time one of the others came to us for attention, licking, purring, kneading our legs and arms in the way cats do, putting you on edge as you wait for the claws to stick, we found our pain eased and smiles bloomed where tears had once fallen.

Then there were the notes – to me, herself, to others – that we found and treasured. Simple things, like remembering to pay the ‘butcher lady,’ put the bins out, remind Karen about Cromwell (one of the Birmans); there were lists of ‘things to do’ which conjured both sadness and delight at her orderliness; or the folder of recipes that Sara used and which we all enjoyed at her table together, using produce she grew in her garden and which we harvested and cooked as a family. These little paper treasures rip a hole in you when you find them, but then they catapult you back to the moment and the unexpected recall has its own terrible beauty. I loved finding these things, how they would throw us off emotional balance, only to repair our hearts after all. Together, they amounted to a record of a person and life that was rich, complex, giving and simple at the same time – one that we were privileged to share.

When the gardens of Nonsuch began to bloom a few weeks ago, our souls felt renewed. Here was the life that, together, Sara and, later when she became too sick, Stephen under her instructions, planted and nurtured. I felt Sara in every new bud, every blossom that burst into life and colour. Bees hummed, butterflies danced and birds sang while the supine cats, grooming themselves in the sunlight, pretended not to watch them. This was her creation, her gift to everyone, continuing, just like her stories will as well.

stephen-sara-mt-wellington-windyAfter weeks of not being able to conjure a word or creative thought and becoming despondent about that, a story, unbidden but so very welcome, took seed in my mind. I was in, of all places,  a Whisky Distillery when it happened, taking me by complete surprise. I was in no ordinary distillery mind. I was in Larks in Hobart with my sister and her friend who were visiting. This place, like so many others around Hobart, has also become a special part of our shared life with Sara. You see, not long after we arrived here, Stephen and I introduced Sara to the joys of a locally made Whisky liqueur – Slainte – that is made by Larks.

It’s like nothing I have ever tasted before – pure golden sweetness followed by a warm caramel heat that coats your throat before it delivers a small kick below the heart. It is magic. The first time Stephen and I tried it, we knew Sara would love it, and bought her some. We were right. Sara called the woman who made it a goddess and swore it was ambrosia. Stephen would ensure there was always some for Sara and Larks, in a spirit of generosity, not only discounted what we bought, but gave Sara a bottle for free with every order as well. That a simple drink could bring so much pleasure amidst so much pain….

slainteIt seems fitting somehow that the first time I returned to this place after Sara died, a place that though Sara had never graced its cosy rooms nonetheless brought her so much comfort and joy, I found a story – the basis for my next novel. It was there, waiting for me, and I accepted the gift of its presence gratefully.

Doing the research and starting the writing process has brought me a healing I never expected. It’s not quick and nor would I want it to be, but it is a sweet and tender ache that brings with it unexpected bouts of sadness followed by moments of sheer joy – joy in the power of words and imagined characters to transport you beyond your own life and propel you into times and places otherwise denied. This is something Sara knew as well and used after her initial diagnosis and towards the end. It might be escapism, but it’s also a blessing. I like to believe, perhaps indulgently, that Sara made sure that tale came to me on that day the way it did. Anyhow, that’s my story and I’m sticking to it.

Every word I write now, I raise an imaginary glass to my darling friend: Slainte Sara.

So, there you have it.  That’s why I’ve been absent from my website and blog – I retreated for a time, firstly to begin my own process of recovery and then to care for a friend who needed me, needed Stephen too. That I needed her just as much was always apparent to me, but her death has made that awareness acute and hard to overcome. She didn’t choose to leave me, us, this life, her life, and that’s why I’ve struggled so hard with her absence: the unjustness of it. What I didn’t expect was that, just as she was in life, she’s there beside me in death and, in my writing, whether it be this blog or the stories I have yet to tell, she will be with me every syllable of the way.

There you are, my friends. I am back. I hope you forgive me. After all, we have a journey to take and I have many tales to tell…

Thank you.

Editors note: This post originally appeared on the website of Karen Brooks. Karen and her husband Stephen were Sara’s carers for the last nine months of her life until she passed away.

SMH: Late author’s lasting legacy

sara-in-office-featuredSara Douglass was world-famous for her novels, but her blog about dying, featured in the Sunday Times, captured WA’s attention.

She sparked a flood of letters when her controversial blog entry, The Silence of the Dying, featured in the Sunday Times last year. And now she has found peace.

Award-winning fantasy author Sara Douglass had her ashes scattered over her gardens at her home in Tasmania on Friday after passing away from ovarian cancer, aged 54. (September 30th, 2011)

The former South Australian nurse turned medieval history lecturer shot to international fame with her Axis Trilogy.

A collection of short stories, The Hall of Lost Footsteps, was finished just before her death and will be published in November (2011).

Douglass, whose real name was Sara Warneke, gained unexpected attention mid last year when her blog was featured in Sunday Times , giving a raw, funny and honest account of dying.

It included how the well-meaning drown people in soft toys, cards and empty platitudes, while the seriously ill are forced to cheer up loved ones. Assuming loved ones still want to visit, that is.

“Our collective attention span for someone who is ill lasts about two weeks,” she wrote. “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?”

“I have begun to notice death all about me,” she also noted. “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, demoralising, terrifying deterioration that is generally accomplished amid great isolation.”

The response was enormous, and Douglass told The Sunday Times she was greatly warmed by the outpouring of emails and feedback.

“Incredible,” she emailed later about the huge response. “And such a shame. As a society we deal with death very badly. I am glad if I could help – and shed light on just what one person goes through.”

The author is survived by two sisters and a brother. They posted a tribute online recalling her as “possessively private” and someone “who could see a funny angle to most situations”.

Douglass’s close friend of 20 years, and carer for the past nine months, Karen Brooks, wrote this week: “She seemed to find inner peace. She died, as she lived  on her own terms, in her own time. Her death was quick.”

Brooks spread the author’s ashes “over her beloved garden with her cats and a bottle of bubbly as witnesses”.

She also shed some light on Douglass’s final days, which the author had always said she hoped would be spent at home.

“The final days were, by her choice, in a palliative care ward in Hobart,” Brooks wrote in a tribute. “Despite what she wrote in her forthright and amazing blog, ‘The Silence of the Dying’, Sara chose not to die at home.

“After two weeks in hospital and then just over two in palliative care, she made the decision, despite everything being set in place (care teams organised, doctor ready, and I was to move in with her), not to return.

“I think it was emotionally too hard for her – the distancing from her old life had begun. The palliative care ward was comfortable, the ambience was warm, the staff caring, frank and compassionate: just like Sara.”

Douglass’s five adored cats, featured regularly in her blogs, will be adopted by Brooks and her husband, Stephen.

Read The Silence of the Dying blog post here.

This article was written by Sheryl-Lee Kerr and originally appeared in The Sunday Times, the Sunday edition of perthnow.com.au.

Herald Sun: Australian fantasy writer Sara Douglass dies of ovarian cancer

BEST-selling Australian fantasy writer Sara Douglass has died. Douglass, 54, died from ovarian cancer at 5am (AEST) today.

HarperCollins publishing director Shona Martyn believed Douglass led the way for female fantasy writers.

“At the time that she was signed most fantasy writers around the world were men but Australian women particularly have become very significant fantasy writers and I think she gave confidence not only to a lot of female writers – she was very supportive of female writers – but also to a lot of readers…” Ms Martyn said.

Douglass, who was diagnosed with cancer in 2008, was the first Australian author signed to HarperCollins’ Voyager Fantasy list in 1995.

Her book, BattleAxe, sold almost one million copies in Australia alone, Ms Martyn said.

South-Australian born Douglass published a number of fantasy series, including The Axis Trilogy, as well as stand-alone fiction, non-fiction and a collection of short stories.

On the Harper Voyager Facebook site today, Voyager publisher Stephanie Smith wrote: “Sara Douglass was an extraordinary woman and one of the world’s greatest storytellers.

“I cannot express the personal sorrow I feel at the loss of Sara from our lives. It was an honour and a joy to receive her new manuscripts and to work as her editor.

“Although an intensely private person, she was always generous with advice and encouragement to other writers and in her communication with everyone who visited her websites.”

Douglass’s fans have sent their condolences to her family and friends via the Facebook Sara Douglass Official Fan Page.

One fan wrote: “You gave me so many hours of enjoyment while I flew through your books to find out what happened next … you will be forever missed, but never forgotten.”

While another described Douglass as an amazing woman and author.

Douglass, whose birth name was Sara Warneke, lived in Cornelian Bay, Tasmania. Her mother also died from ovarian cancer and Douglass wrote about her own diagnosis on her blog.

Written by Jennifer Chapman for AAP, appearing in the Herald Sun.

Karen Brooks: Obituary

Sara-2011The outpouring of grief that has followed the death of Sara Douglass (Sara Mary Warneke), who died on Tuesday morning has surprised no-one – except, had she lived to see the effect of her passing, Sara herself.

How do I know? Having been Sara’s close friend and confidant for twenty years – and having followed in her career-footsteps (from academic to author; as she did for many others, she both inspired and encouraged me) and being in the process of recovering from cancer myself – I’ve spent the last nine months caring for Sara, along with my husband, Stephen. We shifted to Tasmania at the beginning of the year and have been privileged to share the best and worst of times with the woman who called me her soul-sister.

Though Sara was an intensely private person, when Stephanie Smith, Sara’s editor and good friend at Harper Collins, asked me if I could write an obituary, revealing something of Sara’s last weeks, I agreed. Sara had a deep affection for her readers and fans and loved connecting with them through cyberspace – through the early years of her message board and its various discussions, to her blog and websites (her homepage and the Nonsuch garden) and FaceBook. So, without disrespecting her privacy and with a heavy heart, let me briefly invite you into Sara’s, Stephen’s and my world – a world that with her death, for us at least, has been cast adrift and irrevocably shattered.

Her final weeks were not easy; even the seemingly simple act of showering tired her for an entire day. Nonetheless, Sara maintained her wonderful sense of humour and acerbic wit, and her curiousity and concern for others. She managed to edit and see the publication of what is now her final novel, the magnificent The Devil’s Diadem and even saw (though didn’t read) the advance readers’ copies of her collection of short stories, The Hall of Lost Footsteps, which is being published in November by Ticonderoga Publications.

karen-sara-stephen-selfieAccompanying her to every medical appointment, ensuring she had meals, clean clothes and well-fed cats, Stephen and I spent as much time as we could with Sara and did what we could for Sara. And typically of her, she was incredibly undemanding and often apologised (for what, we still don’t know!). I don’t know how many times she thanked us. We didn’t feel (and still don’t) that we deserved her thanks … we loved her and still do love her and it was a joy to see and be with her, as others who know her can attest.

While she sometimes appeared aloof, it was often because she didn’t hear what was said – Sara was quite deaf and relied on hearing aids – but distant she was not. On the contrary, she was one of the most loving and affectionate people I know who would embrace you in the warmest of hugs and squeeze you tight. I will miss those hugs more than I can say.

Visited by a few dear girlfriends (she was selective about who she let into her life) who travelled to Tasmania to see her, she very much enjoyed their company, but was also glad to be by herself again. She was a very solitary person who lived in her imagination as much as she did in the real world. I think she would be overwhelmed by what people are expressing on various forums now; she would be laughing in her unrestrained and contagious way and shaking her head in bewilderment.

Her final days were, by her choice, in a palliative care ward in Hobart. Despite what she wrote in her forthright and amazing blog, ‘The Silence of the Dying’, Sara chose not to die at home. After two weeks in hospital and then just over two in palliative care, she made the decision, despite everything being set in place (care teams organised, doctor ready, and I was to move in with her), not to return. I think it was emotionally too hard for her – the distancing from her old life had begun. The palliative care ward was comfortable, the ambience was warm, the staff caring, frank and compassionate: just like Sara. There was a garden on the balcony outside her window.

At first she felt guilty that she experienced relief at her decision not to go back home, but we quickly assuaged that and told her it was both normal and perfectly all right to feel such things.

After that, she seemed to find inner peace.

Then, she died.

She died as she lived – on her own terms, in her own time. Her death was quick.

She looked peaceful, serene even, her alabaster skin glowing, her hair softly framing her face. It’s an image that will live in my mind forever.
In accordance with Sara’s wishes, there’s no funeral or formal celebration of her life. She wanted ‘no fuss’. That is so Sara! As I promised, I’m following these wishes – it’s the least I can do.

Sara will be cremated on the 29 September at 10 a.m. There will be three people present. I will read from both BattleAxe (the part where StarDrifter sings the Star Song) and from page 511 of The Devil’s Diadem to the end. I will also read selections from the various tributes that family, friends and fans have left. I will make sure you’re all there with Stephen and me as we say another goodbye.

Then, as the sun sets on Friday the 30th of September, I will spread her ashes over her beloved garden with her cats and a bottle of bubbly as witnesses. I ask that, wherever you are in the world – real and virtual – you raise a glass or pause, and for just a moment, help us send Sara on the first steps in the eternal dance of stars.

I know she’s poised to soar and once she departs, she’ll twinkle brightly forever – in our hearts, minds and every time someone picks up her books and reads her astounding and beautiful words.

Vale Sara.


Editors Note: Karen Brooks had been Sara’s friend for over 20 years and with her husband Stephen was her carer for the 9 months before she passed away.

This obituary was posted on the VoyagerOnline blog, the original post can be read here.

 

The Silence of the Dying

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

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

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

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

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

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

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

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

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

Death should be silent. Confined. Stoic.

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

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

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

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

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

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

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

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

Bliss for the incapacitated or chronically ill.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am tired of keeping silent.

******************

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

©2010 Sara Douglass Enterprises


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

The Guilt of Cancer

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


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

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

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

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

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

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

You can read the full review at the link above.

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

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

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

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

That is so bloody unfair.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All the guilt people with cancer are forced to bear …

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

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

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

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

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

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

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

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

Guest Blog: Sara Douglass ‘Escape from the Starship Enterprise’

I’ve escaped my evil abductors and made it back home! I went into hospital on Wednesday morning and awoke to find myself trapped on Starship Enterprise – honestly, the nurses station of the High Dependency unit reminded me of the bridge of Starship Enterprise – it was so cool! I had a serious case of ex-ICU-nurse envy! They controlled everything from great sweep of a bridge from where they surveyed their domain of about 6 captives.

We were all tied to our beds by a variety of strange communication devices that were wired into our bodies (seriously, I still have the holes to prove it, I am covered in plastic patches from where they took out wires) and we were all surrounded by Machines That Go Beep! Occasionally … actually, fairly often … the Machines That Go Beep! would become Machines That Go BEEP! BEEP! BEEP! BEEP! BEEP! and then that got Captain Kirk and his cronies moving, let me tell you. It kept all of us captives awake and in torture, too.

I had an epidural pre-op and the main problem was that epidural which firstly caused a crisis during the op when it caused my BP to drop out of control and the next few days were spent trying to get the BP back above 60/20 (we were aiming for 100 over anything at all, we’d take anything, but that 100 was pretty damn hard to achieve) and by the fact that about 6 hours post-op the epidural began to fail. By 10 hours post-op I had all my sensation back, I was in agony, and they couldn’t give me anything apart from Panadol (oh, Plu-eeeeze!) as my BP was so bad. So I spent a serious night in agony and don’t want to go back there any time soon.

Captain Kirk also had devised a super form of water torture called “let’s drag the ice block down Sara’s body again and see if any of the numbness has returned” and so every hour out would come the ice block and torture would commence. Dick Cheney would be seriously envious of this kind of torture.

I honestly kept trying to phone home to people but Kirk’s communication devices sensed every time I tried to use my mobile – I tried to ring friends five or six times but every time one of his lieutenants would inform Capt Kirk that the Alien in Bed 104 was trying to communicate with her fellow aliens and they’d cut off all signals. They could do all kinds of cool things from their bridge!

High dependency was staffed by some of the kindest people – and the hunkiest – most of the staff were male and they were GODS. Honestly. Gods. And they offered to take off their clothes to help raise my BP! Wasn’t that just the sweetest offer? 🙂 (Having got me in a lustful frame of mind they then refused to come through on their offer, which I decided was yet another form of torturing the poor, captive aliens.)
So gradually I got better and the staff found out my secret place for stashing my hated nasal probes (in the lifting mechanism of the bed, which seriously stuffed it up). They eventually put me on a morphine infusion which I controlled which wasn’t as cool as it sounds, but it was better than the stuffing panadol! LOL

Every day they got me out of bed which was so painful that I would literally burst into tears when they said it was time to get out. Better than the ice cube torture was the get out of bed torture. (Truly, the getting out of bed torture always left me sobbing, morphine or no morphine.)

On Saturday things started to get better and out came all the tubes and devices and off I went back to the surgical ward which was a strange and silent place compared to the Starship Enterprise. And yesterday I came home!

Surgeon said there was less cancer than she’d anticipated (you should have seen me in Recovery trying to feel about for a colostomy bag! LOL) and that she has got 99% of it out, and there is just a teensy tiny bit left in a couple of places on my bowel but that chemo should clean it up. She gave me the double thumbs up on the operation and ‘stuff’.

Oh yeah, and the epidural – it took the anaesthetist three frigging goes to get it in and by the end they had to have 3 people holding me down as it was so agonizing (the pain wasn’t in my back but everywhere else as the guy kept hitting nerves). After my horror experience I would not recommend them for anyone else – the side effects are appalling. I managed to have a chat to the alien in the bed next to me on Starship Enterprise and her anaesthetist had to have 3 goes to get hers in, too, but at least hers was working.

Once the Alien in the bed next to me and I were transferred back to a ‘normal’ ward we got quite friendly – she also has ovarian cancer (she was diagnosed 8 years ago) and has had two tussles with it since).

Three Cheers for the Starship Enterprise! 🙂


Hip hip hooray! I’m sure you’re all as pleased as we are to hear about how Sara is doing — and that her sense of humour is still very much in place! For more info on Sara and her books, or what she’s up to at the moment, click here to visit her official website. And don’t forget to join her rake squad!