The Final Year

NOTE: This was written in October 2018 and is actually the first post in this blog.

There are many ways of writing about my mum’s final year and death. One story is about how it ended: how in the final days I was finally able to say the things I most wanted to say; how we sent off the final draft of the book she had been writing at 7pm the night she died; how when she died she went under a full moon, the stars shining bright. This tale might also tell of the day after she died, how I heard her say, “I love you darling”, clear as a bell. Nothing was wrong, it all happened in its right time, all was well. And that is true. In the midst of the chaos of that year and the edgy, unsettled, fearsome stress of the three years before, something had come together in a deep way, and peace found us.

Another story, and it is the one I am still struggling to come to terms with goes more like this…. I don’t regret a minute; we all responded the best we could and so much good came from it: work, relationships, creative endeavours. And the last year, even more so than the three before, at times felt criminal: I was (and am) filled with a kind of nausea as I watched the toxic chemicals poured into her system and knew that they flowed into the waterways; I am appalled at all the plastic gowns, gloves, tableware and ‘food’ that was made and thrown away. I am in awe of the knowledge that kept her alive and shocked by the toll it took on her and on all of us. For all that was known so little was able to foretold about what it would be like: not one prognosis came true, most side-effects were beyond our worst fears. It was like endless castles in the air that we could never inhabit in the way we thought we would. It often felt like a litany of increasing horrors no knowing which was worse: the disease or the treatments. I am saddened by the cost to my health and her partner’s, and the price exacted on all the lives that were drawn in to her slowed dying.

Of course, like all people in these situations, we struggled on amidst the ongoing gruelling treatments designed to “give her more time” (which she wanted). We smiled bravely as we set out on another endless trip through city traffic to the hospital that felt sterile and lifeless and far away from the garden and wooden walls of home. I hid the desperation rushing through my heart that was born of watching my mother’s body and mind crumble and dissolve before me. And I wept on the highways as I made yet another three hour trip between home and her house, sighed as I crawled into bed hoping to keep juggling my own just burgeoning life and her fading one. And as I sat in my lounge room considering my week to come I wondered if this would be the one where I would receive the call that would let me know the final descent was actually happening. For four years I did this – we all did our own versions of this.

It was a time of fear and frustration, horror and love, wanting it to be over and not wanting it to be over. It was a time of looking at how we do medicine and wondering, ‘what the fuck?!’ while also marvelling: ‘A stem cell transplant!? You mean the cells hear the call of the dying river of blood and organise themselves to rebuild an entire immune system? What little superheroes!’

But what does it mean to live much of four years in a hospital, separated from home and garden and people, and what does that life add up to, really? For my mum, at least it was a book written, and meaningful time with family and friends. But even so, for me, something was lost about what it means to be human. Somewhere in the concrete and glass and plastic walls, amidst the blood tests and prognoses and endless antibiotics, somewhere in the ED for the fourteenth time, or perhaps earlier when she lay in bed that first time and they offered the truth: multiple myeloma, no cure, but we can….

I keep coming back to this: How have we forgotten how to die? How to let go, how to step into whatever is next, how to say goodbye? How to grieve what feels incomplete and how to recognise when we need to be swift in ourselves and with others in finding the endings we need in our souls? How to just be thankful for the time and the experiences, with all their loose-ended storylines, and go?

This month we spread her ashes: my astonishing, gone, fiery mother’s ashes. There were books yet to be written, travel she still wanted to do, conversations that she longed to have. Like all bereaved people I go to tell her something only to remember there is no one at the end of the phone, I see a movie and cry because she would have loved it. There will always be things that will not get to happen. And that is ok.

Her remains are now in the landscape that she loved the most, buried beside the woman who had been her beloved teacher. This small outstation in the Northern Territory was where she spent her happiest years, the years that we spoke of so often as being somehow the most true of our lives: the long, long days of fishing and being with people who invited us to be family and who were kin with Country. It was a place with no electricity, some running water, and no clock time. People are born from Country, live with and are responsible for the care of Country, and when they die they go back to Country. The voices of these old people, she told me, can be heard in the sound of the leaves in the breeze.

My mother spent much of the rest of her life writing, in one form or another, from this experience. It was one of being woven into the mosaic of life, of being embedded in the cycles of living and dying, of becoming and going, of being kin with everything. It was a life that was in its essence about connection and responsiveness. It is a story lived through relationship and care, of not being separate from all that is around one, of knowing that one’s life and that of all beings, is reliant on listening and attending to, of being an integral part of the life and being of the world.

At this point I need to clarify that I am not advocating for a rhetoric of being “at one with nature” as if that were noble and somehow transcendently divine. I lived on the outstation, too; I know how difficult life was at times, how dirty and hot, how full of insects, snakes and spiders; how much I longed for my house at ‘home’ and the comforts of town life. But perhaps what that ideal speaks to and what I am touching on is an awareness of what gets lost within our comfortable houses, and store-bought food, and medicine that can extend life while a body is trying to write a brief and to the point last chapter: a nagging sense of a lost connection with what is true. While it is true that it is not fun sleeping out in a storm and not having air-con when it’s 45 degrees celsius, and it is devastating when the people and animals and plants all die in a drought, and sad when someone gets ill and goes before we thought they would, but there is a reality to that, there is no trying to be different from any other being on this planet. Sometimes it is tragic and heartbreaking and shockingly awful.

What I watched with my mother was like a denial lived out at every level of experience; a beating back of truth. Sure, she was given a prognosis of two to five years. And she got four. She was told there could be awful side effects and there were. She was offered more time and she got it. We all did. And we got the benefits. We also got the costs, as did the taxpayer, as did the fish and the rivers and the earth and the air, and the people who gave their blood and their plasma. And we all got the horror of watching a death that could have happened in five shocking, and for her relatively peaceful, days in 2014 be stretched out over four years in an agonising display of deteriorating bones and fraying mind and such pain and vomiting horror.

You may have gathered that this is a story of contradictions. I have no way of making a coherent story or finding an answer to what has been. This story is full of wonder and horror. I cannot regret that we had time to laugh and say goodbye, nor that we cared for a dwindling body with a tenderness that was healing of old wounds. I am grateful that there was time to mend what was broken in relationships and to break old patterns. It is also true that I felt humbled to witness my mother’s mighty, courageous struggle with wanting to live while her body was trying to close the door. And it was a privilege to help her complete a book that is perhaps ground-breaking. There is no doubt that it was deeply touching to see the immense kindness and dedication of medical people working to give her the time she needed to finish the book.

Through all this hell and horror, love and joy, disintegration and hope, my life and body were torn and enriched. It is because of this experience that I now offer spiritual care in a hospital. I am grateful beyond measure for the opportunity to do this, to be part of people’s lives at such difficult and challenging times, to be part of their search for meaning and renewal and healing even in dying. And I get to see the wonders of medicine that make the broken whole and give time for more love and more time to inspire and achieve wonderful things. But I also see lives dragged out beyond what people know how to endure. And I see what happened to my mother and our family a hundred times a day and I am now part of the system that creates that.

I keep asking: What are we doing?! Has anyone really thought this through? For all the wonders I have outlined, for all the good intentions and wisdom and awareness of harm and futility amidst the medical professions, so often what I witness feels wrong – profoundly and disastrously wrong. Human lives are precious and so are all other lives. If we are saving human lives in a way that is so thoroughly disconnected from the wellbeing of other lives or of any real sense of connection to this earth then what are we really doing?

Perhaps these questions reflect deeper queries: What is it to be human: to live and love and suffer and die? How can we reconnect with all living things, be part of the mosaic, remember we are kin to the fish and the rivers? What might medicine look like if we were trying to answer these questions?

As I do my rounds and don yet another pair of plastic gloves and disposable gown, as I see the trays of uneaten frozen food and the disinfectants and bleaches assail my nose and skin, as I watch the people excited about life to come or sitting silently waiting to die, I wonder – and something in me hurts.

When I took Mum’s ashes to the bush, I felt clean for the first time in months. I could smell the pure air coming from trees and earth and I didn’t want a shower because this is the dirt and bacteria that feels good and life-giving. As I stood on the red soil, my heart beat a lively pattern that was like the wattle stems dancing on the breeze. I longed for clean streams to drink from and a wallaby in an earth oven, like we had all those years ago.

I want to live, of course I do: this world is so beautiful and extraordinary, to be part of it is beyond words. And if a time comes when the doctors look at me with serious eyes, I want to see what healing opportunities there are for me that feel connected to earth and sky and belonging; and when they no longer speak healing to my body I want to let myself go. I don’t want to damage this beautiful world to give myself another couple years, I don’t want to resist with fear what is being asked. And I don’t want to be pulled into the chaotic world of tests and more tests, of white walls and printouts and prognoses. I want to die with a grace and a gratitude that acknowledges the many years I have already been given. And I want those around me to come and face the truth of my going and say our love and our regrets and our goodbyes and then I want to be. I want to go back to Country, to bring only my loving sweet, un-poisoned body back home, ready for the bones and cells and molecules to break down and become some other being, untainted by a horror much bigger than what living can deal out.

May it be so.

Chantal Jackson 4 October 2019