Missing You Already

On anticipatory grief- the preparation for an eternal goodbye.

Even as I was experiencing it myself, I didn’t have a name for it. I had experienced grief as a result of a death before - but this felt different- complex and unfamiliar. It wasn’t until it was named by my godmother, as family friends were leaving my Mum’s last ever birthday in 2017, who recognised behind my well performed mechanics of social etiquette, that I was in fact bloodied with grief - that like when someone makes a diagnosis, I understood what I was experiencing. Anticipatory Grief.

Anticipatory grief is the grief we experience as a result of the anticipation of the death of a person we love. It is the grief that exists in the liminal space between having your loved one and losing them, between them being alive and being dead. Anticipatory grief is uniquely complex because it demands that we hold the co-existence of contradictory emotional states: the person we love is both here, and not here, both present and disappearing. It requires us to be both grateful and grieving, holding on and preparing to let go. It’s living with a constant, visceral and frantic awareness of diminishing time, which super charges your relationship with your loved one with a sublime, tormenting intimacy and the horror of the silence that will soon follow.

The protracted and unpredictable nature of terminal or degenerative illness means anticipatory grief can be a state we exist in for many months- sometimes years- which means for some time we might live in cycles of mourning and reattachment, grieving, holding on, then grieving again. This emotional whiplash is part of what makes anticipatory loss a unique challenge of endurance. Anticipatory grief requires, and therefore somehow teaches us to hold the co-existence of love and imminent loss without collapsing under it. In this sense, it is not only an emotional but an existential experience—it is a confrontation with impermanence itself.

Anticipatory grief lacks recognition, but that doesn’t mean it’s not universally known at a collective emotional level by anyone who has prepared for the death of someone they love. In my experience, the anticipatory grief I experienced immediately after my mothers sudden diagnosis with terminal brain cancer, endured for the 11 months until she died, and was of equal ferocity to the grief I experienced after her death… as soon as we were given her diagnosis- it began, and it covered everything. I remember the onset of the quiet but frantic impulse starting to obsessively take photos of us in the mundane- not doing, but just being- of us inserted in life - our bodies accounted for, and alive together- in the aching magic of diminishing time.

As I was doing this I was often aware I was already rendering her a memory- so in the square lens of my camera, it was as if she was already flickering like a flame, so nearly gone. But accounting for life we still had left to live together, for the feeling of us together- like almost everything else during that time of anticipating her death- became a relentless, urgent and ongoing act of love.

The summer in 2017 that she was suddenly diagnosed- liquid gold sunshine covered everywhere in England for weeks - but anticipatory grief kept me behind a pane of double glazed glass, airless, unable to feel or touch normality. I didn’t inhabit the normal world any more, instead I lived in a world where black triffids grew up ordinary sun drenched walls, my solar plexus felt permanently red hot like an orb in my chest, my eyes sparkling with heartbreak behind sunglasses as other people talked about summer plans, glasses clinking with sparkling early afternoon G&T’s.

The feeling of anticipatory grief in the body can be so visceral and all encompassing- that at a few times throughout the year my mum was terminal ill she would be right in front of me, on the sofa, or at the kitchen table, yet I would be overcome with the feeling of missing her so much that I would feel my stomach involuntarily clench hard and fast making a small moan, which sounded like an animal in pain, come out of my mouth. When this happened I would stand up to turn my back, and quickly and calmly walk to the kitchen, turn the kettle on and open and close the kitchen cupboards a few times as if I was just coming over to make tea, so she and my baby daughter wouldn’t hear it, if it happened again. But this is just a small illustration of the powerful physical sensations that the body can feel and experience when in these metaphysical states of love…ultimately, I think- anticipatory grief is how we love when on the precipice of life and death. The mysterious gift of this experience, is of being searingly awake.

I don’t think I’ve ever felt love as exquisitely unbearable as the love I felt under Mum’s big meringue duvet together, often whilst she slept next to me, throughout that last year - knowing that death was already on its journey to her house, that it would eventually stand at the bedroom door- until it entered the room like skin on the walls. I knew in my cells that death was on its way- because even when it was months away, then weeks, then days- the awareness of it getting closer, that wasn’t like a thought, but more like listening to a subatomic sound getting louder, would make my heart race hard and fast.

As with grief after loss- I found anticipatory grief at times felt like a temporary madness. I would pull the blankets up even higher around our faces as I imagined ways I could hide her from death… I was certain at times that if we stayed in her bed together like that then maybe I could hide her from it. In that ordinary and sleepy early summer silence, with cooled cups of tea and her reading glasses she was no longer able to use next to us on the bedside table, I sometimes thought maybe I could dig my nails deep into time, grip it so tight that it would bleed until it became still.

A few years ago I was stopped in my tracks when looking through the images selected for the Portrait Of Britain Awards. This photo’s familiarity tugged at my gut before my brain consciously assimilated why. Some of you reading this might feel the same tug looking at the photo.

It is a mirror of many of these hours I had under the duvet with her. I took so many photos of us together that year but never captured the exact mirror of this moment between us and…sometimes I wish now I had been brave enough too, but I know entirely why I didn’t…

Her dying, for me, was like a black sun that was too dark to look at, too unthinkable to name, but sometimes it was so entirely in the air between us that all I could do in these exact moments to was close my eyes to it and hold her, with love huge and certain between us.

I’m thankful for this image and I have looked at it every now and then over the last few years. I’m grateful for this brave daughter looking me in the eye- helping me to feel how every moment I had like this with my Mum was actually part of something so much bigger than me, collective, universal. This photo to me, is what we do, when we are loving our person goodbye. But what death eventually teaches us, when it comes in all its mystery, is that no matter how huge- love is not enough to prevent it. Though this fact feels unbearable, the miracle is that, somehow we do bear it.

So often now, the things I feel most compelled to write about that period of time, are the things that I needed to read myself. If you are going through or been through anticipatory loss then I hope this article finds its way to you. Just like this photo did for me- I know that hearing or witnessing other people’s experiences can feel like an important feeling of ‘unselfing’ where we can feel released from the singularity of our own experience and into the realms of a collective emotional experience that is normal and known… I know that I found immense courage and comfort from that. I hope in reading this you might feel this too.

…if you’ve had an experience of anticipatory loss that you would like to share here, at The Meeting Place then I would love to hear from you. With love, Jess xx