Life is Messy

Life is messy. It is an illusion of childhood and adolescence that attaining adulthood means acquisition of control over one’s life. Our adult life often represents the struggle to maintain this illusion in the face of a variety of events which threaten our equilibrium and prompt periodic adjustments to our plans. Some of them are ultimately welcomed and embraced, others less so.

In pastoral work I regularly encounter people in life moments where all semblance of control is lost: standing with a parent outside a surgical unit while her teenage son is undergoing surgery after an horrific car accident; sitting with family whose loved one has suffered a stroke wondering what the next few hours will hold; weeping with a woman who has been learned that breast cancer has returned and metastasised; staring into space with parents of a premature infant struggling for life; sharing parental anger when a child is diagnosed with a terminal illness. In these places any sense of control is shattered, and one’s human limitations are laid bare.

It has not only been in pastoral work that I have encountered these limitations. I have watched my emaciated grandmother lying in a bed wasting away; struggled with infertility for ten years; watched my own parents battle cancer; sat by a warming tray as my 600 gram son struggle for each breath and fought against the constraints which the tubes inserted into his body represented. How I wanted their struggles to end, feeling acutely the helplessness which comes in the face of such circumstances. Something deep within me yearned for some semblance of control, an ability to step in to reduce suffering, to find a constructive way forward. To sit as one engaged in these struggles was often excruciating, but there was no escape; no place to dodge the pain. Even when not present with them, I carried the pain pulsating within.

I understand the impetus which drives the call for the legalisation of euthanasia. These are very difficult places to be – to watch someone ebbing away before our eyes, seeing our relationship dissolve as the progress of insidious disease gradually tears our loved ones away from us, stripping them of much of what we consider to be components of human dignity in adults – down to the very basics such as control of bodily functions, and ability to communicate. To sit with and speak to someone without response, all the while watching them slowly slip away from life, tears at the very fabric of our being. When final hours linger into days, sometimes stretching into weeks or excruciating months, the pain becomes more than we can bear, both for our loved one, and for ourselves. Words fail to articulate what such journeys involve, let alone mean, for those who are pressed into them. The desire to ‘take control’ in the face of life’s last enemy offers the opportunity of at least a pyrrhic victory – a final declaration that we are in control of our own destiny. But it remains an illusion.

Early in pastoral ministry I learned an important and sobering lesson. A member of my congregation had suffered a debilitating stroke and lay uncommunicative in a hospital bed for a number of days. When she made an unexpected recovery, she expressed one of her frustrations during that time – that she had been able to hear and understand all conversations that took place around her, but was unable to respond. She was locked inside a non-responsive body. Although from the outside her humanity appeared to have been stripped away, it remained, locked away, oblivious to those around her. Her expressed fear was not that she had lost some control over her bodily functions, but that she found herself being ignored –the greatest indignity for her, to have others pretend that she was no longer there, even in her diminished and somewhat emaciated state.

The equation of euthanasia with ‘dying with dignity’ is a distortion. As the life cycle turns, we recognise that the ageing years can often bring a shift in relationship balance, where the child becomes the parent and the parent needing the guidance and support of their children. We feel the discomfort which comes when we find ourselves taking a parental role with our own parents, and seek to do it in the most caring and dignified ways we can. When cancer or dementia begins to overtake, the nature of such parental care can even mimic that of caring for our infant children, particularly when it comes to hygiene and cleanliness. But we do not such acts to be undignified towards our infant children. We talk with them and relate to them in the process in order to build and maintain the relationship. I have seen the expert and gracious care of many palliative care nurses towards aged patients in a similar manner – actions which maintain dignity even where the body makes it more difficult without assistance.

I do not judge or condemn those find it difficult to remain present when the last days drag on. It is confronting at times to journey those last hours and days with someone we love; to know that the person shrinking before our eyes was once hale and robust, full of life and energy. To talk to someone without eliciting a response where once their witty repartee brought raucous laughter or punctured the tension evokes a deep grief which cannot be readily expressed while they still live, even less so while we are in their presence.

Ranjana Srivastana’s column in The Age on Wednesday was refreshing for its honesty and humanity. As are her reported comments of the son. That death has its own timetable pushes us into uncomfortable and apparently inhuman spaces, spaces and experiences which we do not talk about enough, either about death or grief, or our own human limitations. Yet to gain the illusion of control may be to lose something at the very fabric of our being, something of our deepest selves.

I find myself asking what I would fear about a lingering death such as Sanjana describes? I identify pain levels which can only be known by those who experience them, much of which can be controlled or ameliorated with medication. I note the loss of control of bodily functions which threaten one’s dignity, but which can be cared for both physically and emotionally. Then there is the slow decimation of the body, slipping into being a shadow of my (former) self. But I realise that one has to learn that by degrees as one ages in any case. And then there is the sense of being left alone to die. I realise that it is the relationships that make me who I am; the people around me who give meaning, purpose and joy to life. These are those who celebrate success with me, who chide me when I fail, who urge me on to other things, and with whom I share a similar privilege. To be human is to be remembered, to be re-membered as part of a community. This is perhaps the greatest fear to be faced, particularly for those who believe that there is no comfort in death, and no company with us through the shadow of death’s valley.

There is a need to be there with a loved one in those difficult last moments not because they have anything to give to us as such, but so that we can be with them, showing that we remember, and that we care. This is the greatest gift anyone can give and receive in life. I fear that an acceptance of euthanasia may serve to undermine that gift, and therefore undermine our very humanity.

Life is messy. Let’s not make it clinical.