We cannot truly value life unless we are prepared to accept the pain of losing someone.
Author: Thomas Allan
Every day brings reminders of the importance of grief awareness. If only we were more attuned to it.
“The question for all of us, as natural life support systems collapse all around us, before our very eyes, is a simple one: how soon will sufficient numbers of us learn to listen to our hearts?”
It was around the mid-point of winter, I was anticipating the arrival of our baby daughter, Eve.1 The 12- and 20-week scans had come and gone without concern. However, at 28 weeks, the clinician zoned in on a problem with the blood flow through the placenta. What unfolded next was a nightmare.
Eve had a rare chromosomal disorder called trisomy-18, also known as ‘Edwards Syndrome’. Diagnosed late – about a fortnight after being born – the extent of her illness and its consequences for her life became a sustained assault on the senses and ended as a crushing ordeal.
Three Neonatal Intensive Care Units, hundreds of miles apart. The countless scans and raft of futile expert opinion. From her premature birth to her heart defects to her myriad ‘complications,’ each setback added a layer of strain, making the previous, desperate situation seem somehow preferable.
Eventually, all medical efforts spent, Eve was passed to her Mum to die. She seemed to fight the inevitable at first. Then, after a few moments curiously adrift, her heart stopped, and she went cold in our arms. She was 17 days old. We bathed her limp and lifeless body in stunned silence before walking out of the hospital without her.
I have heard it said nothing is ever the same after your baby is born. Well, Eve’s car seat was empty. I put the memory box holding her blankets, feeding tubes and hand imprints into the boot of my car. My mind turned with horror to the Moses basket we had carefully prepared beside our bed.
The traffic and the queues on the journey home felt like some sort of disturbing hallucination. We returned home to a still, silent house, and I watched our 4-year-old daughter fall asleep that night gripped with fear she would never wake up again.
Throughout the ordeal and in the days and weeks that followed Eve’s death, the support we received felt life affirming. The connections we made generated a peer-network of mutual support, each prepared to set aside difference to offer a helping hand, a shared experience, or a listening ear.
I was startled to hear the heart-wrecking stories of other parents. In some way, we felt grateful we had some closure. The inevitability of the outcome of trisomy-18 – babies rarely survive to birth – and the diligent care Eve received spared us the bitter taste of regret that flows from human error or injustice.
But what still feels hardest is finding points of resonance with the alienating flow of business-as-usual now that the uniqueness of experience has faded. Because after experiencing Eve’s death, society no longer resembles a place of progress, as I had once wanted to believe, but somewhere mute and hostile.
It seems at once subtle yet blindingly obvious. The faces we pass each day without acknowledgement. Neighbours who are barely on our radar. Distant and estranged kin. The colleagues or ‘clients’ we cannot relate to except on transactional or strict professional terms. The fear, the silences, and the avoidance. The countless lives lost to carelessness, indifference, and neglect.
Society is no safe space for grief. Rather, it is somewhere workers make themselves sick with stress disguising emotion at work.2, 3 Where systems of public welfare are tone deaf to the bereaved.4 And where disruptions to networks of care in the wake of austerity and the pandemic added fear and isolation at a time of great need for compassion and support for dying.5
The juggernaut of public life grinds on at the same mind-bending rate of acceleration, still-faced. What we overlook we consider immaterial, if we even notice at all. What is left unspoken is passed over in silence, as Wittgenstein once said. The possibility of knowing and caring seems to linger undetected in spaces strained by survival, before collapsing in a vacuum of intimacy, a sigh of dissonance.
What is curious is the perception of grief as something private, discrete, and time-limited, as if removed from our thinking, feeling being. We are encouraged not to dwell on it, to ‘get over it’ and ‘move on’ as quickly as possible. We are ‘given space’ – enough to drown in.
Rather than an embodied, living process, grief must be outfought and overpowered. A competitive, individualism to the fore. ‘You’ve got this’. Still need time and understanding? Something to be found in therapy.
There is a tendency to romanticise community as an exhaustive source of autonomous support. Grief painted me a different picture, experienced somewhere in that ephemeral space between its fallow rhythms and the priorities, preoccupations, and ever-accelerating pace of modern life.
In the main humanity takes refuge in silos and cliques, self-immersed in the bubbles and digital echo chambers of private work-life networks, passing over the shame and suffering of others like weary, unthinking vessels in the darkness.
It is six years since I was standing proudly beside Eve’s incubator. I remember the sound of her racing heart on trace monitors and the precariousness of her breathing. I couldn’t bring myself to hold her. She looked so fragile. I was broken by the thought of getting to know her once I knew we would only lose her.
The courage of Eve’s Mum was unique. The memory of her trying to untangle a tiny baby from a mass of wires and feeding tubes to give her the comfort of her mother’s skin is an unbearably sad one for me. In many ways, family life still turns around the presence of Eve’s absence; stuck in an endless loop between the promise of a life together her living, breathing presence seemed to offer us, and her heart stopping.
But if there is something I have learnt it is this: fragility, finitude and even death are essential to our value and to our gift. Grief is not an adversary. Sadness not something to overcome. Life is repaired – for many simply made bearable again – through caring: the embodied feelings, vulnerabilities, and possibilities of the present moment.
There are rarely discrete, well-ordered paths back to our former selves. Even as the pain eases with time, the challenges of living with loss are often years or a life’s work. Grief remains in our bodies and our minds, shaping us in unseen ways.
The simple act of acknowledgment can bring us closer to the reality of shared vulnerability. Yet in divided societies strained by busy-ness and burnout – ill-at-ease and ill-prepared for dying, caring or forms of transience – the bereaved often live their grief as a trauma.
It takes a crisis to force us to slow down enough to see what was always there.
A loss shared can penetrate a space with humanity. It can catalyse trust, activate mirror neurons for empathy, and can be a threshold to a deeper sense of community. It can light the fire of a fierce activism, as soul activist and therapist Frances Weller has noted.6
Perhaps then we must ask ourselves the question: why do we give it so little of our time?
Following the examples of peer support, commoning, mutual aid and other lessons from the pandemic, a culture of experimentalism could be fostered for grief as a creative and active process.7, 8 The focus could be on acts of repair and responsibility in public space; a radical rethinking of the degraded public ‘care’ found through the logic of the market.9, 10
Granted, this is some challenge given the demands upon us. But if there is no sense of the permeating presence of grief – no time or space-in-common to acknowledge pain, sorrow, sadness, and fear as real and value-able human experiences – I can’t see that we have much else to say about who we are, or where we’re going, have we?
Alternatively, we can mind our own business. Because in the scheme of things, while we are wedded to the fictions of growth and a business-as-usual that respects few earthly limits and little human worth, why waste our time on grief? The blessings that came with Eve’s life – with all life – can never hold weight.
The publisher is Citizen Network Research. The Value of Grief © Thomas Allan 2024.