A Drop in the Water

Some notes on anxiety after loss, and the slippery nature of grief.

Grief is hard to put into words. I should know, though I cautiously attempt it now- my fingers are clunky as they tap at the keyboard, blunt instruments not suited for such a precise and delicate art. The best I can hope for is an impression or an echo of what I want to say - like a charcoal rubbing of a fallen leaf onto waxy tracing paper.

As a visual person, metaphors and images seem to communicate grief’s slipperiness better than letters.

There’s the analogy of grief being like a drop of dark ink - once it is dripped into a glass of clear water, the water is changed and coloured. You can’t separate the two, they mingle and mix irrevocably, both fundamentally changed. When I first heard that metaphor I felt the resounding truth of it ringing in my body.

The image has come to mind again and again. If grief were an element it would be water - able to change from gas, to ice, to liquid, depending on the conditions. It gets in the cracks and permeates surfaces you would never expect. Time-worn stories you have told yourself swell and expand (and often crack) under its presence.

Sometimes those stories are old and stagnant, and grief comes as a helper to wash them away.

One of the most well-trodden paths in the scrub of my mind has been Fear of the Future, signposted with Anxiety. Before my Dad died, I would trudge this path often, finding strange comfort in its wild and wooly familiarity. Sure, it was a terrifying path, but at least I knew it well. The lesser known paths of Curiosity and Wonder were more scenic and beautiful, but they required some effort - I could walk the Fear track with my eyes closed, and often did.

As a kid, I would hide muesli bars under my bed in case some unforeseen danger required me to take off somewhere in the middle of the night (gotta eat when you’re running from disaster). I was the kid who would say “I love you” 20 times to my parents before going to sleep in case one of us died in the night. I laugh when I tell these stories now, but beneath it looms a disturbing question- what kind of five-year-old is constantly preparing for catastrophe?

From then until adulthood, my mind has always tried to tell me that to familiarise yourself with the Worst That Can Happen is a shield against that very thing. For a very long time, I wholeheartedly believed that.

When my healthy, fit, strong and kind Dad collapsed from a seizure one morning, after a coffee and a surf, that belief felt a little shaky. I arrived with the ambos, as he slowly ‘came back’ from unconsciousness. I’ll never forget the bewildered, wounded animal look in his eyes as he looked at me and showed no sense of recognition. Moments later, when something dawned and he squeezed my hand and managed a weak smile, I felt a liquid-hot rush of relief. The first impression of him looking through me, however, was etched deep in my mind. The first moment of loss.

For someone who was well-versed in the art of catastrophising, it’s surprising now to look back and acknowledge that not even this muesli-bar apocalypse-prepper could have foreshadowed what was to come. The Worst Thing That Could Happen wasn’t even something I was aware of, it had a name I had never heard before. Glio-blast-oma. Or, in more common terms, two things that you never want to hear side-by-side, especially in relation to someone you love - brain plus cancer. Malignant plus tumour.

It took a while to diagnose, as is often the case. It crept up on us. And there was Dad, at the centre of it all, the calm at the eye of a raging storm of loss. 

The swiftness with which it took over his body was startling. It was a force, although not one to be reckoned with, as Dad showed us. The over-used and tired platitude of cancer being a battle felt weak and almost cruel here - there was no battle to be had. For someone who loved being in the water and had a lot of respect for the sheer power of the ocean, he knew when it was better not to swim against a strong rip, he went with it and let it carry him. Seeing him float out to sea, so to speak, with serenity and courage, was the single most profound thing I have ever witnessed, and I doubt if anything in my life will eclipse it for its bravery and wisdom - a final, generously big act of love.

I write all this to say - I am changed by this. I am changed by his life and how he died- unflinching, unafraid, with his arms wide open, dare I say, embracing it, though there’s no doubt he wanted to live.

Where once, anxious thoughts and worst-case thinking gave me a perverted sense of control and future-proofing, now there is ambivalence around that tired belief. In some ways, I feel fear more deeply, knowing in my bones that loss is part of the deal of being here at all, living a brief human life. Things seem more fragile than before, and yet they also have more value and beauty because their transience is in full view and I can’t shy away.

Here’s the clincher, and something that 5-yr old me could not quite grasp yet- when fear comes (and it does) I know now that whatever happens, I have been privileged to be able sit at the feet of a teacher who showed me how to enter uncertainty with a wide open heart and a knowing wry smile. And that, is more sustaining than a muesli bar could ever be in this whole, wonderful and terrifying catastrophe.

Wed Oct 30

I wake up and momentarily forget what is happening in our lives. I forget that you are dying. It is oh so brief and sweet. The disorientation of waking up in Mel’s bed adds to the surreality of it all. I remember.

I try to orchestrate things so I can quickly have a shower before it is time to wake you up to take Keppra, but just as I am undressing I can hear your telltale shuffle as you get out of bed. I love that sound. I abandon the shower. 

You are amused to see me in a towel and we greet each other happily. Sometimes there is a kind of giddiness to our interactions. We are like two very old friends greeting each other against the odds. “Oh! You’re still here! How lucky.” It is a quality of lightness and delight that I savour amongst the heavier feelings. You look like a weathered bird, your fluffy hair sticking up in all directions.

I set up your medication with a glass of water and you wait patiently on the lounge as I quickly hop in the shower. When I come out you are sitting there, not really looking at anything in particular and I wonder (as I always do) just what you are thinking about. It is hard to tell if you are happy or if it is the lack of language that makes us think you are (since you can’t tell us otherwise).  I know you get frustrated sometimes, weary even, but I really do feel that you are content. Acceptance radiates from your eyes and body in a language much stronger, more primal than words. I am amazed by this constantly, floored even. Though I’ve only seen it very rarely, I worry most about your inner world when I see your eyes grow distant and unfocused, retreating. It hasn’t happened often but it pains me when I see you that way. I’m thankful it is few and far between for now.

I go about our morning ritual. Two fruit toasts, one for me and one for you. Generous butter. A banana and a glass of water to help the Keppra go down. I flit about the kitchen and try to decode your language. I sit down and start chatting but you have something pressing to tell me. The words aren’t there. You are pointing to a glass repeatedly, you persist until I realise that I’ve forgotten a key element of the morning- your instant coffee (with a heaped spoon of sugar, because- well, fuck it). I make the coffee and a peppermint tea for me. We sit across from each other and “cheers” our toasts in the air- one of the silly things we do. I’m constantly forgetting things as my mind is being thinned out- it is working double-time, trying to intuit your needs and wants and do simple things like remembering to shut doors, let the chickens out, reply to messages and juggle emails. I’ve never been good at multi-tasking but you graciously help me in your calm, funny way. 

We somehow get on the subject of Japan and you look at me with an insistent look, widening your eyes and saying yep, yep- I say, I know you want me to go. I’ll do a temple walk for you. You are satisfied. It is a promise of sorts and it touches me that it’s important to you. I’m often so far off understanding you, but there are times where we get into a kind of offbeat, jazzy rhythm and the ‘conversation’, dare I say, flows. We get into a stream of non-language and I pluck the right words out like plump fish. It gives me great joy when they land just right and you light up. I like to make you feel understood as often as I can. There are many roadblocks to our communication. You have to laugh when we get it so wrong, and you often do.

I tell you that I read a quote you had saved on your phone- something like “You can let the waves crash over you or you can learn to surf”. I remember a walking conversation we had a year or two ago, when you had heard a podcast with a similar analogy that you loved. I tell you that I am amazed that despite so many losses, so many limitations and lack of choice- to me you seem to be choosing not to suffer. I say it is a huge comfort to us, this peaceful heroism to exercise the one choice you have left- and you shrug and make sympathetic sounds, agreeing but also suggesting “What else would I do?” in that understated way you have.

I’m sitting on the lounge and once my tea is finished I lie back on the pillows and get comfy under a blanket. You love this - grinning from ear to ear and closing your eyes, nodding dramatically. You still get the most pleasure from seeing other people eating, enjoying, resting. It has always been that way but now it is starkly clear, a warm beacon of your kindness that will never go out.

Danny comes up and sits with us a while. The love he has for you is palpable and practical, the three of us laugh easily together, teasing and poking. I dress you in jeans and say it’s lucky you are so comfortable with part-nudity around company. You’re at ease being helped and that in itself is a huge kindness to us. Danny calls me a “mind-reader” for understanding your idiosyncratic way of communicating and we laugh because in reality there have been so many missteps. But it does make me realise how ritual and routine is a kind of language in itself. In the mornings there are only a limited number of things you would usually be communicating- coffee, medication, bathroom. These are signposts of practicality. I run through them like a spinning wheel until you signal which word is right. The truly important stuff is non-verbal anyway. Mum and I often say that your expressive hands and the charge within them, when you hold our hands or squeeze our shoulders, is stronger than any clever sentence could be.

We get ready for our country drive, as is our Wednesday tradition. Today we are going to Jamberoo. It is one of your favourite places on Earth, and you know the backroads like a well-thumbed book. I wash your face gently with a cloth before we leave the house. I always try to enjoy these small rituals of necessity, to the point of being very slow and deliberate (if it annoys you how slow I am, you don’t let on). It is an honour to care for you, to be close to you. It is tiring too. I’m slowly learning things can be both, at once. When I wash your face, I tell you where I will put the cloth next. You can’t feel half of your body, including the right side of your face. This always makes me feel deeply sad. There have been many losses, and sometimes the major ones sweep up the “smaller” hidden ones, like this. But it is no small loss really. I notice it when I touch your right side and you only respond if you can see my hand in your field of vision- there is no touch sensation, no bodily recognition, and it hurts to see this. 

Caring for you is a kind of balm for the helplessness I feel. You have brain cancer and there is ultimately nothing that can be done to change this immutable fact, its steady march unstoppable and bleak. But, for the moment, there are breakfasts to be made, coffees to be stirred, fruit toasts to “cheers” in the air like a couple of dorks, films to watch, long hugs to melt into, smiles and personal jokes to share, memories to play over again and again, faces to be washed, clothes to put on, keys to be found and country roads to drive on. Illness is a part of it but illness is not the whole picture, nor is it the most interesting part. The everyday has taken on the quality of holiness (despite the very human frustrations, stresses and exhaustion that are there too), and that is something you have always loved. It’s been your big secret- shared in countless ways- to see the sacred in the very small.