I am so pleased to be able to share with you all the report I submitted for my Churchill Fellowship. Some of you might know that when I sat to write I came up with about 80,000 words and so it was with the help of two incredibly supportive and courageous women that I identified the main points and created something manageable for a report. Annetta and Pia, I can not thank you enough. The rest has not gone to waste, I am considering options for putting it into a book.
You will find the report is now available on my Fellowship page on the website of the Winston Churchill Memorial Trust. Just click the ‘download now’ button and the report will appear.
I hope there’s a little something that resonates with you all here. It has been a labour of love and I am very excited about what we can now bring to the changing landscape of death and dying in Australia.
Time just seems to fly. Sometimes I wonder if that is how I will feel when my own life comes to its inevitable end. I hope to look back on the people I have loved, the places I have been and all the beautiful moments that I have shared with the special people in my life. But will I think it’s all been too fleeting?
There are few things more powerful in the world than our memories and connections with each other – often with age, our memories fade but the feelings they leave us can most often stay a lifetime. In the last six months, we have been making some of those beautiful lifetime connections.
As many of you know I went traveling in 2019 after being awarded a Churchill Fellowship. Upon my return in November, I began writing the required report. Only, I wrote a small book instead and had to rework the highlights into a report. In the coming weeks that report or a version of it will be made available through the Churchill Trust.
In case you thought we’d gone quiet, here’s what we got up to in 2019 – we gave educational sessions to Whittle Ward, Calvery Pastoral Carers, Specialist Palliative Care South, Community Nurses, a lung transplant support group, spoke at the Gibson Ward Dying to Know Day, joined the Bereavement Care Network, had a stall at the Wellness Expo at PW1, hosted a table at the Shining A Light on Death event, attended the Palliative Care Tas conference, did a guest lecture spot about funerals at a Falmouth University group (UK), we met with groups in their homes and made our way to Bruny Island for an education session for their residents as well. On top of this, while overseas I attended the National Home Funeral Alliance conference and the Bath University Centre for Death and Society conference as well. There have been a few radio spots, I was interviewed for Choice Magazines investigations into death and funerals – https://www.choice.com.au/health-and-body/healthy-ageing/ageing-and-retirement/articles/funerals-investigation-the-future-of-funerals and we teamed up with a friend from Groundbreakers in the north of the state to lobby our Government for common sense in their changes to the Burial and Cremation Act – not to make natural burial so difficult to achieve for small groups.
My submission to the Department of Premier and Cabinet can be found here — http://www.dpac.tas.gov.au/__data/assets/pdf_file/0006/478581/Rebecca_Lyons.pdf
Sadly, while the Government amended the legislation to allow their own lease arrangements to continue, they would not be convinced to allow leasehold land for cemeteries despite good arguments by the Greens, Labour and the Independents in favour of this arrangement which happens overseas regularly.
So where to for 2020?
Here’s some things to keep in mind. We are very proud to present Maria Lazovic and her Living Funeral workshop. Information and tickets can be found here – https://www.trybooking.com/book/event?eid=593102& . This is a first for Hobart and it will be a unique experience to delve into confronting your own mortality.
We will be at the 2020 Wellness expo on February 29, so make your way down to say hello to us and if you haven’t already, take the opportunity to spend some time in a coffin.
In March I will be addressing Hobart’s University of the Third Age which is a very exciting opportunity to make more inroads into community education.
There is discussions about an upcoming shroud-making workshop including a session on dressing the dead and we have a few other potential events in the making… and there’s going to be more writing to come as well.
In June Zenith Virago will be hosting DeathWalker training in Tasmania, more information can be found here – http://www.naturaldeathcarecentre.org/events/tasmania-deathwalker-training/
If you have any ideas, things you’d like to see or you have a group you’d like us to chat with – please don’t hesitate in letting us know.
I look forward to sharing the report with you and some of my many photos, soon.
Dying to know… dying to get there…. dying to see you again…
It’s amazing how often we hear people talk about what they are dying to do…..
When I logged in tonight I realised it has been four months since I wrote a blog post. The death of my Grandmother. And she was dying to die. She had lived an incredible life and she had had enough. Since then I feel like the world has been turning a little too fast.
I have done talks at various places, the Whittle Ward, Southern Palliative Care Service, a Lung Transplant support group… You n’ Taboo has been asked to have a table at a new event this week coming called ‘Shining a Light on Death’ – https://www.trybooking.com/book/event?eid=508476, we are organising ourselves to have a spot at a Dying to Know Day event at Sorell – 3rd August 10-4pm, Sorell RSL Memorial Hall, 49 Cole Street, SORELL, Tasmania 7172 Australia…. And I have had the beautiful offer to speak to a group of Pastoral Carers in the coming weeks, a group of Bruny Island residents in November when I get back… The word is spreading. We have also worked with some beautiful people in helping them farewell their kin.
Behind the scenes, we have been busily working on the legislative reforms which are ongoing – public submissions close on the 21st July 2019 if you are interested in commenting on the changes, they can be found on the Department of Premier and Cabinet website here – http://www.dpac.tas.gov.au/divisions/local_government/review_of_tasmanian_cemeteries_legislation
The bulk, however, of the last four months, has been filled with planning and preparation for my Churchill Fellowship, I leave in August. I have been connecting with like-minded professionals and services who have extended invitations to me with open hearts. It has been a blessing.
Here’s a list of just some of the places and people I am planning on visiting –
- Frome Compassionate Communities Project – UK
- Bath University Centre for Death and Society (and their conference) – UK
- Promessa – Sweeden
- To the Roots – Prague
- Capsula Mundi – Italy
- Tate Mortuary – Utah
- Funeral Consumers Alliance – Utah
- National Home Funeral Alliance (conference) – Minnesota
- Alua Arthur, Brigitta Kastenbaum, Shari Wolf and various other Doulas and death professionals – Los Angeles
- Crestone End of Life Project (pyre) – Colorado
- Ramsey Creek Conservation Burial – South Carolina
- Amy Cunningham of Fitting Tributes – New York
- Museum of death, various above-ground cemeteries and the history of Jazz funerals – New Orleans
- Evia microfinance tours celebrating the day of the dead in rural Mexican villages
I encourage you all to jump on facebook and like our page there. About two weeks before I go I will start to post links to all the people and places in my itinerary, I encourage you to check them out. While I am away, time and wifi permitting, I also plan to post updates.
The purpose of this entire project is because we are all dying to live. Live better, live healthier, live richer and more meaningful lives, live happier, live more content… live in peace……. and I believe to do that we need to make peace with our mortality. We need to stare it in the face, take it on board and make out living conscious choices based on the comfortable truth that one day it will all come to an end. What we choose to do in this life will determine the legacy we leave in the hearts and minds of those whose lives we touch along the way. In that way, nothing is without purpose or value.
So this project, my Fellowship, is to look at the human relationship to death and ceremony through alternative technologies and approaches. I want to see what the relationship to death and ceremony is in places in the world where they are doing things differently. Not ‘alternative’ as in hippy, but alternative as in different to how we do death here. Where we sanitise, medicalise and professionalise the process and take it out of the families hands from the point of death, often from before that. The objective it to write a report and formulate some way in which I can help to make a change in Australia about how the before and after death experience is done here in good old Oz and how we can do it better.
It’s a big undertaking. But I undertake it with love and compassion and an open heart and mind… I honestly believe the family led funerals make for a better lived experience, a better grief and bereavement journey and I want that for us here in Australia.
I welcome your comments, questions, suggestions as always.
Many of you would have seen a few days ago a post I put on our facebook page letting you all know we were in the process of our very own home funeral. Gladys Mary Steele, my grandmother, at the grand old age of 98 took her leave of the world and our family just under a week ago.
For the last four years, Nana had lived in a Nursing Home after my mum got unwell and I needed to return to work. Prior to that, she had lived in the family home for 28 years. The separation was hard at the time and it did not get easier. Now, it is final and so much harder.
Over the course of the 5 days following her death, we have had the most incredible bonding experience as a family and friend group. We are so blessed to have around us such incredible, talented, caring people with a deep and strong capacity when it comes to holding space for us. There will never be the words to thank all of those who have stood by us over the last few days.
On the 14th of March Gladys died and we took her home. We went to the Nursing home and transported her back to the family home. As my mum said, that was her coming home to where she always should have been. Over the next few days we looked after her, we cooled her, we spoke to her, we shared her memories and her stories. We spoke to family and friends. We had well wishes from those who knew and loved her and we planned here ceremony.
There’s a bit of organising to do when a family choose to look after someone in death as they did in life and plan their own ceremony but it is such a blessing to take the time to do it. The journey of grief and bereavement is always a hard one but in those precious moments after death, if you take the time to stay an integral part of the process that follows, there is a special kind of authenticity and rawness that makes it all so worthwhile.
Our family decided to paint her Pod, we chose a Peace Pod for her vessel and we were able to pick it up undercoated to allow us to personalise it just for her. And over the next few days, as people came and went and the layers of paint went on, the layers of our grief began to knit us together. We painted, talked, drank wine, we laughed and hugged. My mum had the idea that we should put doves on her Pod and that became a canvas for those at the funeral to write their farewell messages to the most exquisite of ladies. The whole thing was a cathartic experience and I would not have traded it for the world.
It’s quite a special thing to be able to design something so special for someone so loved. We made the montages, we designed the booklets, we picked the catering, bought bottles of her favourite wine. Then we wrote. We wrote her ceremony and our tributes. We gathered musicians who could play her favourite tunes, we did all we could to do her justice and we took our time doing it. When someone dies, there’s always time.
And it was perfect.
Here’s the thing. It will always be perfect. Perfect does not mean polished or professional, it does not mean everything goes like clockwork or to plan and it does not mean that no mistakes will be made. But it is perfect because the family made it their own, they put their time and handiwork and effort and love into making the journey from death to farewell the community and family experience it can be. And they were able to express their love, gratitude and deep sense of privilege through the making of a farewell.
And that is what we did.
So share the stories of your loved ones as we have done these past few days. Take those moments to share and bond and be as we have done. We sat in the silence when we needed to and we allowed the noise to surround us when we needed that as well. Both have filled and sustained us these past few days along with our incredible tribe.
For my Nana, I will tell her stories and re-tell them as she did for me in sharing the stories of her parents and grandparents. She will always be in my heart and her stories, her memory and the memory of this special journey will stay well and truly alive as part of the history of my family: a history that I intend on seeing passed on again and again. It is a rich tapestry of invaluable knowledge and understanding; woven into it is a wisdom and a humanity that cannot be taught anywhere else. I have my Nana to thank for that and I will hold on to her memory now and the memory of her death care and ceremony, with a grip as sure as the tides and a will as fierce as the winds. Anything less would not do her justice.
A big shout out and a hearty hello to all of the people who came and visited us today and joined our mailing list as well. We are so grateful for all of the conversations, and congratulations received in relation to this work we are doing.
Now you will not have heard from us in a good while now and that is because we have been very busy. I have been working on a Natural Burial Project, finalising the Churchill Fellowship Itinerary so that flights can be booked and most of all we have been helping families with Family Led Funerals.
What a humbling and special start to the year we have had, being able to help families keep their loved ones at home after death and plan ceremony and burial or cremation. We have had such a warm reception into the communities we have encountered so far and overwhelmingly the feedback has been that people who continue to be an integral part of the journey after death, helping to look after their loved one in death as they have done in life, makes for a beautiful and healing grief and bereavement. This is not a disempowering process and for many, it is the future. But, it is also the past. It is a reclaiming of tradition, of how things used to be right here in Australia and how they still are for many places in the world.
Our public education is also growing. Most recently I gave a talk to a group of Palliative nurses in Hobart and there’s a second talk booked for 2 weeks time. I have also been approached by a cancer support group to talk them through the options around dying and death in Tasmania.
Once I have my itinerary set for the Churchill travel I will start sharing a little about the places I am going and the people I am meeting with (and hoping to meet). It is going to be a very exciting journey and I hope you all can follow it with me.
We are on the countdown for Christmas and I wanted to share with you what has been happening in the last few weeks.
Many of the Doulas and people working in this alternate space got together for dinner a few weeks ago to share ideas, developments and talk about future prospects. There are some very exciting things happening, some of which I will share with you into the new year.
I had a date at Government house to receive my Churchill Fellowship award and then dashed off to Deloraine to join Ediwn and Mea on her Peace Pod stall and talk death with the good people of Tasmania and beyond. My planning for Churchill is in full swing. I am making the final arrangements of meeting with people and thankfully have a few months to research travel options before I do those final bookings!
We held a workshop on shrouds and natural burials which was well received and so much of the day was simply taken up with people having the most beautiful honest conversations about death, body disposal, choices and options. I think we all learned from each other something special and new and our heartfelt thanks go to all of those people who attended, supported and helped us make the day what it was. The day consisted of seeing a new concept in shroud design, understanding where they came from as a practice, talking about home funerals and I shared some photos of when my great aunt dies and we took her home for a few days… We learned to wrap and move a body, we communed over lunch and shared our own unique and beautiful experiences. We have had a request to run it again, maybe up north and another down south and so I am thinking it won’t be the last time we do it. I’d be grateful for any of you thinking about it to register your interest and we will look at a little bit of planning into the new year.
AND…. You may have caught a short 5 min clip on it they played Monday arvo on the drive program (my chat with Joel from ABC starts here at about 17min 30sec in.https://www.abc.net.au/…/hoba…/programs/drive/drive/10556854).
The longer version was played this morning – https://www.abc.net.au/radio/hobart/programs/statewideweekends/natural-burial/10597116
I have included some photos of all of these things below, the award ceremony, Deloraine Craft Fair, Shroud workshop etc…
Oh, and Let me know what you think of the interview 🙂
I read a lot of books, those about dying and death. Personal accounts, peoples views, medical perspectives, books that are designed to connect us with our own mortality, books that offer a new way of doing dying and death as a community and society (which is often really the re-discovery of old ways).
The book that I finished this afternoon had me in tears nearly every time I opened its sacred pages. Tears of joy, sorrow, intense knowing, tears of challenge and elation, relief and disbelief. This book invites you in with a warm hug, it places you in the centre of peoples hearts and you are carried through their journey, privileged to share their thoughts, feelings and actions… all the while it is as if they are somehow unfolding right before you. The heart, the love, the experience seems so tangible and I could not help to become completely immersed – submerged in the writing. More than once I’ve had to stop reading this on the Tassielink bus to work for fear of falling apart and arriving in town with makeup running down my face – more than once I have guarded my time to read a few more pages quite jealously against all the other ‘life’ stuff that pull my attention away from absorbing a good book.
This is so much more than a book about death and likewise, more than a book about life. The pages carry a profound and sacred message that sits so beautifully within me while reminding me of how much I still have to learn. This book is proof to me that the way we are engaging with people at You n’ Taboo and our work dedicated to encouraging a shift in the space of how we ‘do’ dying and death as a community, as a tribe – it means something. It can add value to our experiences and heal some of the disconnects our community has had in decades past. This book is a lesson, a reminder and a promise all in one… and proof that there is an immense benefit in embracing a mindful and planned ‘good death’. But this book is more than just that too. It is a testament to the strength of those people and their humanity – it is a book that takes the reader by the hand and says, “You can do it too”. This book cements my firm belief that we all have this ancestral knowledge in our bones of how to care for the dying and how to be with the dead if only we can open our heart and minds to it.
The author is both courageous and humble. She is wise and kind. I am so glad I connected with her prior to reading her book as I may have just been lost for words or not has the courage to reach out at all. As much as she admits she is still learning, she is the maiden, mother and crone combined. She writes with the innocence and vulnerability of the maiden in a way not often displayed in day to day humdrum of life, she is the mother in her nurturing and protective approaches yet still free from ego in her telling of them and she is the crone in all these things, so very wise and enlightened in what she lays bare for the reader to absorb.
This book, ‘The Final Act of Grace’ by Mary Dwyer should be read by everyone including nurses, palliative carers and specialists, doulas, funeral directors, those scared of dying, those grieving, those coming to terms with someone’s imminent death… It is masterfully crafted as a piece of writing, it is a beacon of hope for all of us who want to see this shift in society towards death awareness, mindfulness and literacy and it is one of the most personal and moving accounts of a journey towards death and the bereavement after death that I have ever read. Ever. The wisdom and insight contained herein is remarkable and profound.
I challenge you not to consider your own end and that of those you love. I challenge you to read this and not come away feeling like you can be even better as a human. This book is a gift to your soul, I challenge you not to be changed.
Thank you Mary for your honesty, for your vulnerability and willingness to share this journey with the world.
We’ve has a marvelous day today at the Natural Death Expo, held in line with Dying to Know Day 2018 and in conjunction with the Tamar Peace Festival. What incredible people we have here in Tasmania. Today we met hospital workers, a mayor, retirees, a man living with a stroke, community leaders, refugees, women of substance and power, men of incredible courage, inventors, entrepreneurs, the socially conscious and community-minded… It was a truly lovely day.
There are people right here in Tasmania working to bring about change in the space of dying and death, they are striving for natural burial here where there is none, they are walking the end of life path with the dying and making beautiful things like coffins and shrouds to help families with a personal, affordable and meaningful approach to death. But there are people in other spaces too, all working towards peace in their own way – they are waging war on plastic, they are educating about sustainable living, they are advocating for acceptance, challenging misconceptions and harmful habits, they are champions of disseminating knowledge… just like we are, they are reclaiming ancient wisdom and finding the benefits of community and family approaches to life – and death.
For us, we were buoyed today, not only by getting to spend time with the peers and colleagues we have on this journey but also by you – the general public who were so keen to engage with us, tell us your stories and ask us your questions. I hope we helped to answer them.
Next week we host our Hobart event, a flyer is attached below. Take a look at our facebook event for more details.
I’d like to share with you all an article that was published this morning online. Doing death differently.
It’s not a new thing here in Australia, although our choices are still very limited, that may not be the case for too much longer. The whole idea of doing death well, in all its facets, is beginning to become a much more public conversation… we are on the verge of much bigger things. In Australia and indeed worldwide, there are people and places working hard to reconnect their communities with this ancient wisdom of doing death well. Edwin and I are so incredibly lucky and grateful to call some of these people friends, acquaintances and colleges… so pleased to be able to play our small part as we all strive to bring about this reconnection within our communities in a compassionate, gentle and tangible way.
Note – There are many people, amazing people, not mentioned here… many of them you will find in our resources page.
I can scarce believe it has been so long since our last post. It has been a tumultuous few weeks for our family but I want to share with you some of the good stuff.
You would have seen last week a whole bunch of Facebook posts (for those of you who follow our page) showing you some of the goings on at the 2018 Compassionate Communities Death Literacy Conference in Sydney. I was lucky enough to attend both days of the conference and the launch of their most recent research. What is abundantly clear is that the majority of us have had death experiences… we have experienced the death of someone close, we have sat at their bedside, held caring roles and provided emotional support… we feel comfortable talking about it even… but my experience is, we don’t. At least not without someone pushing the subject.
The conference was wonderful. So many like-minded people in the same room, learning from each other and exchanging ideas… it was always going to be good. I learned to reconsider some of my language around dying and death, I learned a lot from a more medical perspective and compassionate approach to Palliative Care… I spoke to Professors, Doctors, Nurses, Therapists, Doulas, Funeral Directors, Designers, Marketers all these people trying to make a difference in this space.
I also learned about the National Death Literacy Index. This is something being put together by Groundswell and it will be a communal resource of what is actually out there for people to access in terms of information and services. Hats off to the Groundswell team for their almighty work!
I have come away from the conference much richer in knowledge and blessed with yet another perspective with which to think about this work. More than that, thanks to the generosity of those i shared this time with, I have also come away with some lovely ideas on how to bring this to the community in different ways.
My top take homes –
- make a shift from care-based approaches to value-based approaches to end of life care
- we are not normalising death, it is normal… we are socialising it
- some hospitals and institutions are beginning to allow families to take their loved one home – this is encouraging – policies are slowly changing to allow for peoples legal rights
- Frome – community connectors and how it works on the ground. A brilliant example. Read more here – https://www.resurgence.org/magazine/article5039-compassionate-community-project.html
- Compassionate Communities support Compassionate Cities – there’s a Charter we need to be encouraging Councils to adopt
- Aprox 30% of people are receiving futile treatment at end of life that they do not want
- Social change is possible… if there are 24 million people in Australia and approx 160,000 die each year… and if each of those 160,000 has 16 people directly affected around them then that’s 2,500,000 bereaved people each year.. or 5 million ever 2 years… If we can change even some of those experiences then in 10 years we are looking at real social change
- community is everything. most conversations about dying and death happen when you bring family and friends together
- ‘death may not be a taboo anymore but taboos still exist in this place especially in being vulnerable’ – Prof. Debbie Horsfall
- change needs to happen on both levels, from academia, and from the ground. there is room for lived experiences
- change in how palliative care is perceived will change how it is accessed and this will provide better outcomes and experiences
- ‘social relationships are the most powerful tool we have for the longevity of life’ Dr. Julian Abel
- do things with people, not to them
- work on increasing the communities capacity to look after their own – something I am proud to say I think we are already slowly doing
- about 25% of people who die die with cancer, so 75% of people do not and yet Palliative care services are taken up with 95% cancer patients
- Donty tell people what they should do… ‘no one wants to be “should” on’ Eltham Day
Read about Groundswell and their projects, research, and initiatives – http://www.thegroundswellproject.com/
Before flying home, I took a moment to visit an exhibition in Sydney that has me intrigued, called Real Bodies. There’s a little controversy around this exhibition it appears. These are apparently real bodies which have undergone the process of plastination, something I had not heard about. It allows the bodies to be displayed in such a way that they can be intimately examined. I listed to a medical fella explaining the inner workings of the body to his little girl by pointing things our to her… I saw people repulsed and intrigued at the same time. It was fascinating the see what cancer looks like… Incredible to get up close with each organ inside us… this is how we are made! The bodies are intriguing but I had to keep reminding myself that these are apparently real! I wondered, what lives did they lead.. what did they stand for… and how did they end up here? Maybe I should have asked those protestors.
If you would like to know a little more about the technique, you can go here – https://bodyworlds.com/plastination/plastination-technique/