“The impermanence of this floating world I feel over and over. It is harder to be the one left behind” Buddhist teaching

My intention with this post is not only to write about my personal experience of grief, but also to share some of the things that have been helpful – and, hopefully, may help you too. It is also a story of love.

My husband, Michael, died just before Christmas 2021. He was diagnosed with terminal cancer 18 months before that. It had started in his colon many years before but, by the time he was diagnosed, it had spread to the lining of his stomach and his lungs. We had virtually no inkling of this.

He thought he was a fit 72 year old – so did his family. He was not on any medication and had none of the common health issues of his age group and we were told, unhelpfully, and. on many occasions over the course of his decline, that his fitness and good health had masked his symptoms for many years WTF!

He had gone for his routine barefoot run on the beach the day before we got this diagnosis that would change our lives forever. We had been together for 54 years.

On Our Honeymoon in Ibiza 1972

This is Not Going to be about That Journey – but what I have experienced since he died because it as powerful as it is profound and unexpected.

And firstly – I want to apologise to everyone I have ever known who has gone through grief and loss because I HAD NO IDEA? No idea what you might be going through and, therefore, what I might do that could be of more help? I’m truly sorry.

A Seismic Shift. After Michael died I felt that the earth has opened up and I had fallen down a big black hole into a place that I didn’t recognize – nothing was the same and it is hard to get used to. It is unchartered territory – a foreign country – and one I am constantly trying to navigate through.

Initially, when Michael died, we felt a kind of relief that he was not suffering anymore and that he didn’t have to deal with the many indignities that came with his illness – which he bore so stoically. We wouldn’t have any more of those frightening conversations with medical staff that started with “I’m so sorry“. No more high speed dashes to hospitals and terrifying 2am talks with doctors in dingy ICU corridors.

COVID made it all 10 times more difficult with visiting times to hospitals limited and the family having to make the unbearable decisions of who was going to see him? Fortunately, the situation was better when he was home, with the family able to come and go. Even though, at the end, when he had lost almost half his body weight, he was still walking around, and had even attempted to climb a ladder and get up in the roof with our son – to get some fishing gear down – the day he died. Within an hour of this escapade he became very short of breath and went to lay down on the day bed outside. I then noticed that his lips were turning blue and went to call an ambulance – mysteriously, my phone suddenly was not working properly – no one I called could hear me? Michael’s last words to me were “I don’t need an ambulance _- I just need some Vicks rubbed on my chest” – he died ten minutes later, with me holding his hand before the ambulance got here.

For me, all of these experiences now run on a continuous loop in my head, especially him dying in front of me, like a horror movie – and I think our three children, and the eight grandchildren, were all suffering from some kind of post traumatic stress from what we had all experienced. Now, one year later, this bad movie is still there just behind my eyes, but it is not so constant.

This experience of grief really has been a total surprise to me because I really thought that I was quite informed and widely read around the subject – starting many years ago with Elizabeth Kubler-Ross’s book On Death and Dying and then a broad range of philosophical and spiritual works along the way. I have done the Byron Hospice Last Aid course and steer the committee that worked towards a Natural Burial Ground for Byron Shire. I also used to work in medical research and hospitals in the UK and Australia. None of this has prepared me for the grief. It prepared me for death, but not for grief.

IT IS WORTH NOTING THIS. Kubler-Ross and the “five stages” of grief – denial, anger, bargaining, depression and acceptance. These have become the accepted language around grief and have been used by medical and counselling professionals since her book was published in 1969. I don’t relate to these five stages at all; this is not my experience. I find grief to be more like the weather – YOU NEVER KNOW WHAT YOU ARE GOING TO GET. After doing some research, I found that Kubler-Ross’s studies have been used erroneously for decades because her five stages were based on interviews with terminal patients, NOT THOSE LEFT BEHIND. The misappropriation of her research on grief has been debunked loudly and often but it still continues to be regularly trotted out. Maybe the five stages lasting legacy is our desire for simplicity and a neat narrative around grief where all we have to do is go through them and then reach a full and final stop?

“This experience of grief has been a bit like childbirth It doesn’t matter how many books you read and classes you go to – nothing can actually prepare you for the reality” Our two daughters, Francesca and Edwina.

LESSON 1. GRIEVING IS A PLACE THAT IS SO VARIED AND SO VAST – LIKE AN OCEAN – THAT IT CAN ONLY BE DISCOVERED THROUGH OUR OWN MOST INTIMATE EXPERIENCES It will thrash you about and dump you to the sand and then, just when you are almost out of breath, shoot you to the surface to take on yet another wave and give you another gasping breath.

But it is a powerful and mysterious experience that can destroy us or enlighten us and time leads us to patches of calmer waters.

MY ADVICE – keep your eye on the weather and LEARN HOW TO SWIM.

Taking on the world together – at yet another protest. One of our first dates in London was to hear Michael Foot speak at an anti-nuclear rally.

Grief is irrational and the mind plays tricks on you. When I say that this has been a weird experience, I mean it. I hear a noise in the night and go to get up because I think it is Michael. I read something interesting and reach for the phone to call him and tell him about it. I was having a meeting the other day and someone started the conversation by saying “I was just talking to Michael” and I had to sit down because I felt like someone had punched me – of course she was talking about a different Michael but that’s how strange this all is.

Michael has been gone now for more than a year and yet, last Friday, this overwhelming feeling just hit me like a thunderbolt of ‘shit – he’s not coming back – ever’ with an absolute and terrible finality. I was bereft all day with the loss suddenly feeling new, all over again.

LESSON 2. FIND SOMETHING ON A DAILY BASIS THAT HELPS. I swim. Why? Because I have never had a swim that didn’t make me feel better. I tried to swim almost every day during Michael’s illness and it was often the only time I had to myself. It’s my exercise and my meditation – all I hear is my breathing and I lose myself in the rhythmic flop of arm over arm watching the bubbles stream from my fingertips. It cleanses my body and my soul and doesn’t matter if I’m crying really hard because my tears are washed away. If I am at the pool I also get to welcome the, often naked, changing room embraces from my other female swimming buddies. If I am at the beach I get to embrace the sky and ocean – and also say hello to the fish and dolphins. And, if you didn’t know it by now, exercise is good for you – it helps to recalibrate your mind and body. My eldest daughter has started going to boot camp on the beach at 5am three times a week. She says it has really helped to ‘get out of her head and into her body’ and shifted the desperate grief she was feeling.

Hundreds of garden visits over the years. Fortunately, Michael shared my interest – well the looking at them part; the tea rooms and the bookshops.

We have three children (47, 43 and 42) and eight grandchildren (4-18) and I have realised that we are all grieving in an intimate and different way. It made me question why? And then it dawned on me – partly from the very personal eulogies that they gave at Michael’s funeral which, let me tell you, I did not fully understand until then the very individual depth of feeling they had for their father and his personal relationship to each of them – is it the simple fact that they are blood and I am not? This was hard to grasp at first – and then I got it. Although they are a great comfort to me and my rock – we have no other family here in Australia – it is often difficult to be around each other because we are all feeling what is MISSING – like a big deep hole. But we are making a big effort to support each other and get together as often as possible. Last weekend we went away to the country for our eldest daughter’s birthday and did our best.

My tribe, my dear family. It was only after looking at this for a bit that the thought struck me crikey, Michael and I are responsible for this lot. So much for the zero population growth sticker I used to have on my car in the 60’s?

Children are a great circuit breaker. This was my youngest grandson on the phone on his fourth birthday.

“ Nanma, do you want to come over for dinner because everyone is dead at your place and you might be lonely”?

New Kids on the Block. The last of the ‘ten pound Poms’ on a camping trip to The Basin, Pittwater, Sydney, 1980.

LESSON 3. AUTONOMY AND GETTING PRACTICAL. Suddenly I am by myself when there were two of us to share the load. We had a definite division of labour before, but now I have to do it alone. Initially this made made me howl and feel very sorry for myself. Then I realised that my grief was as much a part about missing Michael as it was about the loss of my old life – plus my hopes and dreams for the future.

Since Michael died it is almost like I have a poltergeist in the house: two light switches have sparked and fallen off the wall, the hot water system failed, the garage roller door stopped working and the car died – all things he would have probably fixed in a jiffy. This is on top of having to make all decisions about my finances into the future. So I said, bugger it and set myself a challenge to get on with it. Plus, on top of this I had a pressing need because I still have a mortgage to pay.

DR GOOGLE, AND THE 74 SCREWDRIVERS MICHAEL LEFT BEHIND, HAVE BECOME MY BEST FRIENDS.

The financial challenge: This is a really important lesson, grieving or not, that will save you money and give you more peace of mind and stop your life from being an out of control mess – and do keep notes and paperwork – you may need it. As my good friend says – there’s no point in getting older unless you get smarter?

Having a valid will; I cannot stress the importance of this. Everyone over the age of 21 should have one. Also, after the death of a loved one, it is much simpler to negotiate your way around all of the legal and financial stuff if the next of kin is the sole executor, as I was, because it takes a while for the Death Certificate to be provided. I could just take a copy of the will along to sort stuff out, like cancelling and transferring services, bank accounts, driving licence etc.- the paperwork is endless, you might as well make it easier.

DO make sure that any primary assets – house, super fund, are in joint names.

DO make sure you have written down all passwords and usernames. This can be in one little notebook, well hidden.

• Mortgage. Contact your bank every year – or when the interest rates change – and make sure you are getting the best deal possible. But first, check what other banks’ rates are so you can bargain with them.
• Energy provider. Make sure you are on the right plan for you. Ask your neighbours. Spend an hour doing some research. I have reduced the bill by two-thirds.
• Telco. Likewise – if you are on a plan – make sure it is the right one for you. They can check your usage and tell you, but only if you ask. I’m saving at least $50 per month since I got to speak to a real person – insist!
• Insurances. There is all kinds of comparative stuff online , but I found that by consolidating house and car insurances I saved more with loyalty discounts – $400 per year on my house insurance alone.
• Centrelink. They make a one off bereavement payment – you just have to ask.
• Claim for everything you are entitled to – like rates rebate for pensioners. There are discounts on just about everything – especially travel, tickets to shows and entrance fees..

If you have lots of money and sensible things like superannuation, then consult a financial advisor.

We have always loved to travel and had many adventures over the years. This was our last to Sri Lanka in January 2019

The Silence. This is very hard to get used to. The only noises now in the house are made by me. I was used to hearing Michael: taking a shower, talking on the phone, playing his guitar, putting on some music, and tinkering in the garage (with some of the 74 screwdrivers!). Some of our happiest times were when he had chosen some music for me to cook dinner to and then we would sit down and eat whilst reading out bits of the paper to each other – and doing the crossword – over a bottle of wine Then he did the clearing up.

I realised that I have never lived by myself before. I lived at home until I got married and that’s how it has been ever since then. I’m finding the lack of having someone to talk to particularly difficult. I very much miss his enthusiasm for different things to me, his encouragement to try something I would not have thought of and then talking about it.

“There is usually someone to do something with, but no one to do nothing with” Esther Rantzen, British Journalist on how she felt after her husband died. This sums up exactly how I have felt. The quiet intimacy that you share when you are alone in the house with someone you have shared most of your life with.

Lesson 4. GET CREATIVE. Cooking and eating for one is not fun. This came to a head for me a couple of months ago as I sat down to another lone dinner. I grabbed an old newspaper out of the garage to do the crossword and saw that Michael had done half of it. That was enough for me to decide to bolt and get away from the house – there was too much Michael and yet he was not there at all. So I threw some things in the car and the next day headed out on the road not knowing where I was going or where I would end up. It was scary because, like a lot of women of my age, I was not that used to driving at speed or in the city – or by myself – I have lived in a small country town for 15 years. It does not have one set of traffic lights in the whole shire. Plus, Michael did most of the driving when we were together. Anyway 2,500 km and three weeks later I came back after travelling via Canberra and Sydney through country NSW. In the end I took the plunge and drove into Sydney realising that I needed to be with old friends, after spending days without having a conversation with anyone. It was good and bad in parts, but something shifted. For one, the bad dreams I was experiencing abated and I realised that I liked driving – I actually always knew this, but had forgotten it.

Our 54 years together was, inevitably, was not always married bliss and the conflicts we had came back to me in the weirdest of dreams. Night after night of endless traumatising angst – plus some really horrible ones too that revisited his illness. This was all very unsettling and I’m glad that my road trip has broken that spell.

I had also taken the advice of a friend in Sydney and did a nature journaling workshop on the way home. Like all new situations at the moment, I found it quite confronting because I feel like a turtle without a shell – raw and vulnerable. But again, after sitting at peace with nature, something shifted and I found the process of putting pen and paint to paper – interpreting the beautiful bush surrounding me – deeply satisfying and I have done a lot more since I got home. I suppose I can sum it up like this:

• The creative process shifts something in your head and squeezes out the feelings of loss and sadness.
• Whatever you create is new – a new memory – and nothing to do with the old ones.
• It stills the mind and helps you to focus – instead of being all over the place like a mad woman’s lunch.

I’m not sure who I am anymore? This is a very strange feeling – again, totally unexpected. As I walk around the house it’s as if the mirrors give me no reflection. I had always thought that I was a pretty independant person with quite a lot of autonomy in our relationship, but when I considered that we had been together since I was sixteen and we had shared most of the important developmental stages of our lives – it made more sense. We were sympatico and we automatically filled in and made up for the bits and pieces of each other that didn’t work so well – both emotionally, intellectually and physically. But so, what next?

Lesson 5. OPENING UP TO POWERFUL CONVERSATIONS AND BEING GRATEFUL. Since Michael died, I have had the most moving and profound conversations with people. I also began to feel extremely grateful for what we had for all those years, because it is not most people’s experience. I had never actually thought about this before – I think I was too busy living it?

“I have felt grief my whole life for what you and Michael had – you are so lucky” Louise 60, a single mum who has not had a long term partnership in her life and has mostly lived alone.

I started to look at the people in the street differently as I realised that everyone is carrying some grief for whatever is missing in their lives – whether it be for the loss of loved ones through death or broken relationships, and all the dashed hopes and dreams that go hand in hand with that grief. Then, I had momentary waves of gratitude wash over me – and now I know that if you are feeling gratitude, the grief gets pushed away.

60th birthday adventure to Greece. My Mumma Mia birthday

The man who made me feel like a woman is gone and I really hate it. When it was my birthday people were asking me what I was going to do? Then it hit me like a battering ram all over again. Michael and I went out on our first date on my 17th birthday. Since then, we have spent just about every one together and ordinarily I wouldn’t have had to plan a thing. We would wake up, hold hands, usually talk about the children and grandchildren, probably go for a swim and have a lazy brunch out somewhere and the day would just have BEEN without too many plans. Michael would always give me apt cards with romantic and often funny words – I probably have 54 of them tucked away in the house somewhere. I really miss dancing with him. We always had the music on and would often take a turn around the kitchen.

“I look at couples now and think – you poor buggers – one of you is going to get left behind “. Old family friend, Andrew, whose wife died a couple of weeks before Michael.

Lesson 6. WHAT HELPS? On a personal level, mostly talking to trusted friends and trying to keep busy with things to look forward to. This has been very difficult during COVID because so many much has been cancelled or postponed – but then – this is true for everyone.

I have tried going to counselling, but this didn’t work for me. I wish it had – like belief in god – I’m sure it would be a great comfort and safety net. The counsellors I went to all came with recommendations from the medical profession and I think it’s worth noting here what happened, just in case you are thinking I’m bonkers or really difficult. I’ll also add that I have many wonderful friends, who work in this field, and I have nothing but respect and admiration for them – these are actually the people I talk to the most, as a friend.

Counsellor 1. I first sought help in the early stages of Michael’s terminal diagnosis. In session two this counsellor told me that she thought I should leave Michael – I fled in disbelief and tears with a follow up letter of complaint from me to the practice. I never received a reply. I recently bumped into her – some two and half years later – and she apologised to me. All a little late, I thought. She had caused untold distress and harm and had been very unprofessional.

Counsellor 2. The first session went well – I thought. In the second, I discovered that his list of prescriptive platitudes was limited and he just kept repeating what he had said in session one. Running out of ideas, he then proceeded to start interpreting everything I said into little drawings – which I found quite bizarre and disconcerting. I didn’t go back.

Counsellor 3. This person came highly recommended by a doctor friend I trust and I went seeking help after Michael died. I didn’t find the first session at all helpful and, in fact, had a panic attack on the way home. I persevered to session two. She started this by saying that she thought the sessions would go a lot better if I “brought a sense of humour to them”. I was totally stunned into silence for about a minute. Then the horses started pounding in my chest and the ‘fight or flight’ response took over. I got up and left whilst saying “that for me, the sessions would have gone a lot better if she had brought a better dress sense to them” – she was wearing a denim trouser suit at the time – with very wide lapels. I’ll give her sense of humour.

I actually couldn’t make any of this up and I had to pay for it!

IMPORTANT NOTE FROM ME TO YOU If you are finding anything I am writing distressing and it is bringing up unwanted feelings for you – PLEASE REACH OUT and talk to someone. Suffering is part of the human condition and no one is immune – we are all in this together.

BEYOND BLUE 1300 22 4636 LIFELINE 13 11 14

KINDNESS I have been overwhelmed by the kindness of friends and neighbours, both during Michael’s illness and after he died; the meals left on the doorstep, the gorgeous plants and flowers, the cakes; the care parcels, the emails and letters, – many with beautiful personal memories of him and our family. I can’t tell you how much it has meant to us and kept us going. I urge you, DO pick up the phone and call. DO invite that person for a cup of tea; a meal out or a walk on the beach. DON’T give up because they say no – I have learned that it’s the nature of grief to pull the covers up and hide sometimes – to be quiet and just sit. It doesn’t mean to say that I am not lonely and sad – I just might not be ready and may just need a nudge.

And then I realised that it’s really important to be that person too – the one who reaches out and makes connection – part of the kindness glue that sticks us all together. DON’T BE THE PERSON who crosses the street rather than have to talk to you – or when they bump into you says, I meant to call or write. I have found that being part of a RECIPROCAL KINDNESS is very healing.

Family Father’s Day bushwalk 2019

Organizing a Funeral. This is absolutely the last thing you want to do when someone you love has died. My feeling at the time was to have something really simple – be done with it, and then crawl away into a hole with a bottle of gin. I did not want a spotlight on me – nor did I want to deal with the grief of everyone else – and talk to them. Also, where to start? We do not belong to any religious faith and so had no template to guide us – or so I thought. But, I had been working for a couple of years towards a Natural Burial Ground for Byron Shire and had had my eyes opened to the shenanigans of the commercial funeral industry and the negative environmental impacts of cremations and cemetery burials. What to do?

We are fortunate in this area, to have some wise people who have given this a lot of thought and decided that they wanted to provide a more natural approach to death and funerals, giving practical help and services. One of these is Zenith Virago, who started the nationally recognized Natural Death Centre – she is alo on our NBG committee. Zenith has given me a lot of support and some very good advice after Michael’s death – one of which was to give him a meaningful send-off because it would sustain us during the dark times that were to follow. How right she was.

Lesson 7. HOW TO SAY GOODBYE? I still feel the warmth of the love on the faces of the people all around as we walked along the path into Mullumbimby Cemetery with Michael being carried in a simple casket by our son, Nick, two son-in-laws, Brian and Blake, and Michael’s cousin, Walter – in clothes fittingly borrowed from Michael’s wardrobe (I want that tie back Walt!).

We were able to walk from home – following the hearse – with Indonesian gamelan music playing out of the car windows. Michael was not embalmed and had been simply dressed in his favourite cotton sarong and batik silk shirt – Nick had gone to the local funeral home, the day after Michael died, to wash him with some beautiful soap and dress him. His coffin was not plastic lined and of simple cardboard with rope handles – all biodegradable. Everyone can organize their own funeral, if they want to, and I will write about how at a later date. You can make it cheaper, greener and more personal.

“From my rotting body flowers shall grow, and I am in them – that is eternity”

Edvard Munch

After Michael died at home,outside, looking into the garden and the view of Mt. Chincogan, our children all gathered and we said our goodbyes over many hours as the black cockatoos flew overhead, calling to him and us. We could spend as much time as we wanted and when we were ready, he was taken away – not in a body bag, but covered in a patchwork quilt that the local CWA ladies had made. It was not traumatic, but quite beautiful – as it should be, but often is not. What a blessing it then was to find trays of food left on our doorstep by our neighbours.

One abiding memory from the funeral is when we had the ritualistic tossing of the earth onto the coffin.

My three year old grandson suddenly lit up and started to dash backwards and forwards from the pile of earth, tossing two handfuls at a time onto the casket with absolute glee. I could see the look on his face – at last, something fun!!

How terribly traumatic it would be to hold a funeral with COVID restrictions – I cannot imagine. We were very fortunate that these had lifted three days before Michael’s funeral and over 100 people were able to attend and come to our house afterwards Later, 30 of us went for a swim in the river at high tide in borrowed togs and towels – how Michael would have loved that. All washed in a ritualistic cleansing.

My choir (Biggest Little Town Choir) was able to sing for the first time in nine months at Michael’s funeral. They had practised the night before and I joined them at the cemetery as they sang the Sinead O’Connor song ‘In this heart’. I can’t tell you what an absolutely heart stopping joy it was to see them all standing there, after all that time, with me and for us. They are truly beautiful people and I love them – they epitomise the meaning of community’. I highly recommend finding your voice and singing too.

Biggest Little Town Choir of Mullumbimby – my happy place, my happy people.

I don’t ask myself the question WHY ME?

Because the answer is WHY NOT ME?

We are just the stuff of stars,

Particles of the endless universe waiting to return.

But, like the clock on the wall that has stopped, sometimes the timing is out.

I do not believe I shall ever see him again.

It’s just the universe doing its stuff.

The heart of my life; the life of my heart.

If it didn’t matter, it wouldn’t matter.

I mourn him uncomplicatedly, and absolutely.

This is my good luck, and also my bad luck

I miss him in every action and every inaction.

He may be gone, but he is still alive to me.

I don’t believe I will ever get used to this,

But I hope I will get better at it.

Every love story is a grief story in waiting.

With apologies to Julian Barnes

Do you want your last resting place to be part of the problem, or part of the solution? Click here to find out more.

https://growfoodslowfood.com/2020/01/21/natural-burial-grounds-fact-sheet/

HART to HEART . An article I collaborated on for the Sydney Morning Herald 25 March 2023

https://amp.smh.com.au/environment/sustainability/a-woman-s-final-act-of-love-to-ensure-her-husband-died-the-way-he-lived-20221124-p5c10a.html

It’s good to start the conversation around death and dying before it happens. Here is a wise and thoughtful place to start. https://www.naturaldeathcarecentre.org/