I have a photo of my dad on the inside of the sun visor in my car. It’s a bit cliche, I know, but I put it there shortly after he died and now it’s unlikely to be removed until I sell the vehicle. When I flip the visor down, there he is, tall and handsome, smiling back at me through the Parkinson’s mask, the Pasha Bulka breaching the shores of Nobbys Beach, Newcastle behind him. It’s the last outing I can recall where he walked to and from the car unassisted and had the energy for sight-seeing, lunch (fish and chips) and photographs. It was taken in June 2007. It wasn’t long after that the most he could endure was sitting in the car, while eating take-out and watching the water through the window.
The photo is an important reminder of the man he was. It helps fade the memories of those last few months before he died, when his life force seemed to be pulled back into his bones. When I snuggled into him on that last night, I beheld a jangle of bones, a prisoner of war. The enemy being Parkinson’s.
One year on and I am constantly amazed at the depth of my grief. It is a bottomless pit that I sometimes find myself falling into unexpectedly and getting lost in for unknown spans of time. Sometimes seconds, sometimes hours. Then there are the nights when grief holds me in it’s vice, only relinquishing its hold when the sun creeps over the horizon. My grief is a dark and empty place that leaves me gasping for breath, shocked by how bleak it is. On other occasions it is a smokey haze that drifts along behind me, trailing me as I try to move forward.
And this, when I knew for 10 years that my father was dying.
In the last three years of dad’s life there were days when I actually couldn’t remember a time when he wasn’t dying. The days of he and I flying around the ice rink, faster and faster, until my squealing pulled the laughter from his belly, seemed like a fiction I wrote into my childhood. When the images of my father bent over the engine of a car or covered in grease were to be found only in photo albums. When it had been so long since we’d had a conversation that wasn’t interrupted by dyskinesia or difficulty swallowing that I forgot how rich his Finnish accent still was after forty plus years of living in Australia.
Then there were the days when I couldn’t think past the possibility that it could happen at any moment and that I might not be there – in time. Even though Mum and I agreed, after so many ‘it’s happening’ moments and with me living so far away, that there would be no more emergencies. That his approaching death was not a crisis to eclipse common-sense.
So I set cruise control to 110km an hour when I drove up the highway that last night and willed myself to breathe, to just focus on the now. I turned off the radio and drove in silence, not wanting to have the memory of any particular song imprinted on this event. Everything was right between dad and I, we had said “Goodbye” so often, and always meant it. We had nothing between us to regret, we expressed our love often and fully. But that didn’t stop the five hour drive feeling like an eternity; as though for every kilometre I drove I was further away from where I needed to be most. Until finally I arrived at the hospital at 3am in time to witness it all unravel. Because the truth was, the need to hold my father one last time was an emergency.
When dad was alive there were days when mum and I talked of nothing but the possibility that it might continue for years yet. Such is the way of PD. And also of my father. He was, among many things, a beautifully stubborn man who held on, I think, to experience more of life with us. He was a man who built his life around his family. In our last conversation dad told me that he felt ‘luck had sailed on his ship’. When I asked him what he meant, he told me how lucky he was to have two such wonderful women in his life, who loved him so much – referring to mum, the love of his life, and me. It broke and healed my heart all at once.
Talk to anyone who has lost someone they love and they all have their own story of how it happened. Of those last moments. And regardless of the variants, there is no benchmark for their grief. It is what it is, intensely personal. Never entirely fading. I wish I could tell you otherwise.
For ten years I watched my dad slip away from us. Until I realised one day that I was already grieving for him – and for myself, the child who was beginning the journey to being an orphan – even while he lived. I was losing something that I wouldn’t be able to fully comprehend until it was gone, but my sorrow had already begun, building inside my chest, gnawing at my spirit. Unknowingly, at first, my grief became a disease, for which there was no cure and of which people were afraid of catching.
As dad’s life became an old film reel that flickered and faltered, I came to understand how terribly afraid people were of death and mortality. People avoided him or sometimes just the act of asking me how he was. As though somehow through contact or even the expression of caring they would become infected, contaminated. Fearful that my grief would pass to them. Or that by touching us death would somehow attach itself to them and theirs.
In some respects they were right – grief is contagious. It unleashes the fear of loss within us all.
I saw this in the relationship that mum and I built, unawares. Calling each other daily – and then filling every moment, every conversation with our mutual sense of dread, of worry, of angst, or anticipated loss. In 2012 I wrote a journal entry about worry – hoping that by writing it down I could some how let go of some of those worries. I filled four pages and when I stopped the only difference was that the worry was now in two places. But it also helped me realise just how blessed I was to have my mother with me in this experience. A lioness of a woman, who fought hard for her husband’s rights as he grew frailer. Who loved my dad with such honesty and depth that it defined my understanding of relationships.
On March 22, 2014 my father shuffled off this mortal coil. The clocks stopped. The world grew muffled. And for all I had expected it and prepared myself, he was unexpectedly gone and I was unprepared.
In the months that followed his death I became aware that I had unwillingly joined a club. One that I had no previous knowledge of and to which I had no desire to belong. I know now when I meet people and the conversation turns to parents, who the other members are. There is no secret handshake or pin. Membership is captured in a look, a reaction, and that no matter the passing of time, you are there again, at that moment when your parent, one or both, died.
It’s an exclusive club, in which all your other experiences with death don’t qualify you for entry. They prepare the way and, to be certain, give you heart wrenching glimpses. I know because I carry with me a virtual quilt of griefs for other deceased loved ones as well. This loss is not diminished, rather re-understood. And I wish I had known this difference before dad died. I think it would have made me a better support person for my friends and loved ones who had already been through this. It would have shaped my words of comfort and guided my actions.
There are three other exclusive clubs that no one wants membership to and that I feel need to be acknowledged – loss of a sibling, loss of your life partner and loss of a child. You never want those experiences or to be part of those clubs, but what I have also learnt from dad’s death is that without them, my words of comfort will always be inadequate. There is a divide between their experiences and mine, and nothing I can say or imagine will bridge that gap. That’s not to suggest that I shouldn’t try. All I have is my willingness to be there, and listen, and hold, and not be afraid to call and reach out, even if I stumble through the experience. It is so very important that someone shine a light into that dark pit of grief, reach out and tether you to world.
And what I know now is that if I live a long enough, rich enough life, I may have the experience of joining those other clubs as well. Because to have loved and been loved, and to have lost, is also to have lived.
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.