Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone…We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?Atul Gawande, Being Mortal: Illness, Medicine, and What Matters in the End
‘There are three types of courage needed to live fully, face death directly, and discover true freedom: the courage of the warrior, the courage of a strong heart, and the courage of vulnerability.Frank Ostaseki, The Five Invitations: Discovering What Death Can Teach Us About Living Fully
The two parts of genuine acceptance – seeing clearly and holding our experience with compassion – are as interdependent as the two wings of a great bird. Together, they enable us to fly and be free.Tara Brach, Radical Acceptance: Awakening the Love that Heals Fear and Shame Within Us
Travel is a great equaliser. We are caught with our selves and share time and confined space with fellow travelers. We meet strangers with whom certain social formalities are quickly dispatched. Stories are easily shared and hearts are opened as we become aware that we each carry with us our narrative. The freedom of the open road, a desert plain, an empty, curving beach encourages our souls to be that bit more vulnerable, to explore, to ask questions that the usual every day busyness does not allow time or space for.
We have been on the road for three calendar months. I thought I’d luxuriate in hours of reading, writing, and quiet reflection, but my children take a less philosophical approach to life. We’ve been saturated in the beauty of endless clear skies, blazing sunshine, to-die-for waterholes of every aqua hue, and we never cease to be amazed at another vast expanse of emptiness. Not nothingness, for it feels turgid with life. The buzz of unseen insects, or the crackling of barely-living stems of generic, brown grasses, holding on for the coming rains. But they are living and holding on. A sparse forest of bare bushes appears able to support ten or twenty massive wild buffalo.
And as we’ve moved from coast to savannah to desert to mountain to gorge, the shifting, drifting but ancient vastness of it has emphasised our very, very impermanent little selves. The first weeks were marked by excitement, nerves, and adventure, but also by a background, busy, constant inner monologue, reflecting on the last weeks, months, and years. I found myself cyclically engaging with the whats, wheres, and hows of decisions and all their causative factors which had led to this decision to quit a job and immerse ourselves in family time. As time passed, and I was able to peel back the layers, I could better understand the underlying anxieties which posed as sensible-seeming interrogation of my every move. There was also avoidance of engaging at a deeper – dare I say emotional? – level with the immensity of what this trip meant to us as a family. It was something we had conceived of perhaps ten years in the future but which had been catapulted into our present to try and help Eva, in particular, reclaim a sense of ownership over her future. She was always hesitant to concoct any kind of bucket list, beyond enjoying and savouring her time with her children as fully and vivaciously as she could.
We continue to work out how to balance the hope of what we want for Eva and our family with the reality of her disease. For some people that is already a warning sign that perhaps we are mentally weak; nothing about metastatic breast cancer should be considered a ‘reality’! Pay no attention to the stats and figures! However, for better or worse, the pragmatic part of our natures would rather attempt to hold simultaneously what history has shown, and the possibility of being at the outer 0.1% on the far right of the bell curve. With every new ache and pain, we subconsciouly shift Eva’s position within the normal distribution up or down a standard deviation (or two). She is living fully and energetically, but with that comes the resultant discomfort of bony tumours under stress, and generalised fatigue.
Today, on my 38th birthday, the last twenty one of which Eva has been present for, impermanence and mortality shift tangibly and persistently in the very fabric of our day-to-day existence. Five days ago Eva was transferred by the Royal Flying Doctor Service (RFDS) from a small hospital in the centre of the Northern Territory to Alice Springs Hospital. She developed cellulitis on her right (lymphoedema) arm and, due to being immunocompromised from medication and cancer, she was deemed at high risk of sepsis. She’s been receiving vancomycin and cephazolin – for those who are interested – and seems to have stabilised, however not without the usual, predictable pains in the butt of being a patient. She is currently waiting to see another doctor this evening to try and get a peripheral line into her after her previous cannula tissued much earlier today (she missed her first and is now late for her second eight-hourly dose of antibiotics). Eva’s veins are shot from chemo and despite multiple attempts by nurses, another doctor, and with the assistance of a vein finder, no-one has been able to get access. So now there are talks of PICC lines (a medium-term line into the central venous system), or even a Portacath. A Portacath is a long-term – usually permanent – valve underneath the patient’s skin near their large, central veins just under the collar bone. These are utilised by people on long-term chemotherapy, or people who need long-term antibiotics.
Portacaths were mentioned to Eva when she first had chemo but it was not something she pursued (partly as she hadn’t planned on getting secondary breast cancer quite so quickly). However, it also feels like a rather ‘terminal’ or chronic step to take; even if it’s just used for antibiotics now, it is an admission that this will be used for chemo, once the cancer progresses further.
Amidst this we have two rambunctious children who have great expectations of any family birthday, and who are keen to visit mum in hospital and lure the nurses into their shooting random patients with their new boomerangs game.
On days such as these it’s a battle to maintain Ostaseki’s three courages: the warrior, a strong heart, and vulnerability. Sometimes it is easier to do one at a time; put your head down, keep your blinkers on, and be a warrior. Or let all defences go and soak in the largeness of the emotions, accepting all help offered without knowing what you really need, and giving in to the overwhelm of vulnerability. But maintaining a balance between the three for anyone, in any of life’s many difficult situations, is a lesson to be learned. In psychiatry, defence mechanisms describe the subconscious way our minds try to protect us by manipulating, denying, or distorting reality. For some this may be as simple as adopting a warrior ‘I can beat anything’ mentality. For others it is more complex; being convinced of one’s helplessness and inability to change a situation, and definitely not to change oneself.
I think engaging with mortality and impermanence is a wonderful way to interrogate our defence mechanisms. A paper to be published in NeuroImage next month has suggested that our brains protect us from thinking about death in relation to our selves; death is something external that, sadly, happens to others. One of the authors, Yair Dor-Ziderman, in an interview with The Guardian says, “The brain does not accept that death is related to us…[so] when the brain gets information that link self to death, something tells us it’s not reliable, so we shouldn’t believe it.” Different religious traditions and belief systems advocate spending time considering the fact of mortality. It’s interesting to be forced to ask, how would I act/think/speak/feel differently if I knew I was going to die in six months? Although Eva has been given no definitive timelines, the constant awareness has allowed us to be a bit more ruthless with the parts of ourselves or patterns of thinking that previously we might have not even noticed, or easily ignored. Being open to our own and others’ suffering (the courage of vulnerability), as well as the transformation in seeing ourselves as people who will be able to manage this unfolding – I want to write tragedy but perhaps that is too loaded. Journey? Process? Experience? – and still maintain our openness and humanity through it and after it (the courage of a strong heart). When we think of the worst imaginable tragedy – for many this would be losing a child unexpectedly – we have no idea how we would cope and are convinced that we’d shrivel up and die. Yet people somehow go on living. Irrevocably changed in the aftershock, unsettled and sickened by impermanence, but somehow still in the land of the living and engaging with the universe. This is the strong heart.
Tara Brach’s phrasing of this – genuinely accepting our reality by seeing clearly and holding it with compassion – is another way to manage these defence mechanisms. Defence mechanisms do what they say on the tin: defend us. How about if we were able to see clearly that what we are defending against is, in the context of death, perhaps our fear(s) of living, or of not living well? And how about if we treated that with compassion instead of burying it and distracting ourselves from it, and denying that it is even a thing? Gawande illustrates how we can apply a methodology (based on a physician’s dialogue with her/his patient) to these questions: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
Impermanence is not just about dying, and not just something that someone who has metastatic breast cancer needs to busy herself with. We are each riding a rollercoaster of impermanence, and one which we would do well to acknowledge. Much of the pain and suffering we experience is due to impermanence – or change. Perhaps by wrestling with this, even embracing it, we learn to live better by working out and pursuing well-being at any stage of our mortality. My 18th birthday was spent on a ship, in Ghana, sitting on the floor in a room where we played a game called teeth (long story, but piss-yourself-funniest game ever); on my 38th I sit in the dark on a campsite in Alice Springs, my two children asleep in the camper trailer behind me, my wife in hospital down the road, and a bottle of Great Northern and a bar of Cadbury’s to celebrate. All things change. The challenge is to embrace them all with courage, clarity, and compassion.