There are moments, when viewed in the rear view mirror, when those moments of temporary crisis are upon us, when thought strings are tangled, when things spiral, that all we want is some small semblance of control.
We live in a political world and as much as we might like to turn a blind eye to that fact, we can’t avoid it. You may wonder what has led me down this rabbit hole, you might wonder also what politics has to do with having a brain tumour.
It’s a touchy subject war, and that one day of the year when we’re confronted with the futility of it has again rolled around. I should also add, that, tenuous as it may seem, I am making a link to my own brain tumour journey.
You might be wondering who I’m quoting here. A clergyman perhaps? Or clergywoman? if you can find one. A nurse? An artist?
“Sometimes you’re better off not knowing,” I said to a good friend as we sat outside sipping coffee. He nodded in tacit agreement, without completely understanding what I was trying to say, giving me permission to keep going, not that I’ve ever particularly needed such a wave of the hand allowing me to forge ahead.
Things are somewhat difficult just at present. I stumble, almost falling backwards and all I’m doing is making lunch, a toasted sandwich. It’s the price I’m paying for having the brain tumour removed and the subsequent and ongoing recovery of same.
Half-wracked prejudice leaped forth
“Rip down all hate,” I screamed
Lies that life is black and white
Spoke from my skull. I dreamed
Romantic facts of musketeers
Foundationed deep, somehow
Ah, but I was so much older then
I’m younger than that now
Before I go on, I should preface my comments by saying that my intended audience for this missive is not the brain tumour community, they may read this and remark “tell me something I don’t already know”. It’s for anyone who may know a brain tumour survivor, or has met one, and who wonders what the fuss is about.
Clive James, in answering a question about his writing life, a question about the writing process, answered thus, “I get up in the morning, make myself a cup of coffee, walk up the stairs to my office, stare out the window and do what all great writers must do, absolutely nothing.”
Floyd Collins sat on the hood of his Dodge putting on his walking shoes. The “hood” is a much more appropriate name to describe the flap that opens up to the engine than what the English would refer to as the “bonnet”, which is what you put on the head of a one year old English girl who’ll grow up to marry a gentleman of the aristocracy.
Princes priests and diplomats
are trying to explain
The times that we are living in
the rumbling in my brain
For most of us, dare I say all of us, our lives are filled with the mundane. I’m sorry to break it to you this way, it may come as a shock. With the profound on the other hand, where an insight of emotional depth and intensity is revealed, we often, as individuals, as a society, flick pass it and shake our heads in wonder, not taking the time that is perhaps required to understand how it came to be, or perhaps even to see it at all.
I attended a conference this week, one where my qualification enabling me to attend consisted of being a brain tumour survivor. COGNO, it’s a grand acronym to be sure, stands for the Co-Operative Trials Group for Neuro Oncology, held in Melbourne, conveniently enough, during International Brain Tumour Awareness Week.
Wisdom cries in the street
The humble rise to their feet
to kick their shoes off
before they hit the road
Following the 15 hour surgery on my brain 12 months ago, the whole left side of my body was left paralysed. There is still some way to go. My left hand still experiences constant pins & needles. It has about half of its required strength and dexterity. The neuro pathways, the synapse, from the brain to the hand still has obstacles.
A short video montage, mainly walking, of progress since my surgery.
One wet, cold September night some years ago now, a boy was born. It was late, his father, a veterinary surgeon, was out tending to another birth, a cow, in a time when it was hardly expected that a father would be in attendance for the birth of his child, he would be much more likely to be asleep, or having drinks with friends, than with his wife about to give birth.
Appearances can be deceptive, as they are with most people. On the surface I appear to be quite normal, a functioning human being doing what functioning human beings do. “You’re looking good” is what people say.
An article written for the May 2017 Brain Tumour Alliance Australia magazine.
Patrick Allen bent down, the brown paper bag lay on the ground in full view. He picked it up and he looked inside. It was money, a lot of money, crisp new notes. Someone’s betting money Patrick thought. Maybe it’s ill gotten gains, he had no way of knowing, it was a racetrack after all and gains were there to be had, both ill gotten and legitimate.
Six months on from surgery and my life is still a struggle. I still feel useless, although I do try and make myself useful. I have perhaps 40% use of my left arm, gripping and holding things is the main problem, I still have double vision in my right eye and I am unstable on my feet.
This week, no fewer than 8 people have said to me, “it’s been a really tough year”, and then gone onto say, “and I know it’s been an especially difficult one for you”.
I didn’t think I’d be so physically incapacitated. Or put another way, sometimes it’s better not to have full knowledge of the consequences of major surgery, it can lead to pre and post-operative despondency.
I rode my bike for half an hour this morning. Previously, that is, pre surgery, a half hour bike ride would not have registered at all on Katrina’s radar, but today she was ecstatic because my current normal makes thirty minutes of intense exercise monumental.
A short description of my brain tumour journey, a journey that is still not over.
Webber and King were walking towards the one cafe on the main road of Grey’s River, it offered what appeared to be the best chance of a decent breakfast.
Lulu sat on the edge of her bed and contemplated it, before she started slashing. And so the violence began, controlled violence though it was, down the arms, across the chest, down the back of legs; none of it designed to inflict real damage but enough to draw attention to the inalienable fact that Lulu wanted someone to listen to her.
Colin Birtles is stuck in traffic, or more to the point, stuck in his car, in a queue, at a service station, idling his engine, with other unfortunates, in traffic, victims all of a garish advertising sign offering a fuel price discount, pock marked on the side of the road, with all the other pock marks, blathering the health benefits of Gatorade, the communication benefits of a mobile phone, or the freedom offered by the latest Jeep.
It needs to be pointed out, before the story of Giftland, Lokta paper and the generosity of my Nepali hosts is mentioned, that some things are done differently in Nepal. We in the West could learn a thing or two from them.
My final day of visiting people affected by the April 25th earthquake made for an uneasy embrace of what it means to be denied a Western middle class upbringing. I had one, these delightful children have an upbringing only in the sense that they are not living on the street.
The village of Barabesie, in the region of Sindapowlchuk, north east of the capital Kathmandu, was at the epicentre of the April 2015 earthquake. The village was flattened, almost destroyed. It’s people are resilient, they are rebuilding.
Kailash is an artist. When you are introduced to him he will say “hello, my name is Kailash, I am an artist.” You are left in no doubt. An artist he most certainly is, in demeanour, in the passion with which he talks about teaching others, creating works that speak to people and about letting the world know that Art can help change it.
A medievil village popular with tourists flattened by the April 2015 earthquake.
The first thing that springs to mind when one sees devastation like this is how hopeless the task of rebuilding appears to be. It’s not just the homes and the temples, it’s the lives, particularly in light of the knowledge that there is no one to help, no insurance and a mere token of government assistance. It’s left to those around you, your neighbours, your relatives, your village folk. In other words, your community.
Jay Nepal, which means “Victory Nepal”, is a motley arrangement of Nepalis and foreign backpackers who have banded together to help rebuild, or more correctly, in the first instance anyway, demolish Nepal.
It was a woman at the checkout buying coconut oil. She had put it in her bag, with all the other groceries she was purchasing when she noticed that the seal on the bottle underneath the screw top lid containing the coconut oil had come lose.
It’s a recurring theme that’s invading my senses
I’m lining up images all in a row
They’re blowing up bridges and cutting down fences
But I keep on moving but my moving is slow
I was approaching, in my car, some months ago, one of those ubiquitous discount fuel outlets that have become symbolic of our consumer age. As I had a voucher handy I decided that I should probably refuel.
– And how will Sir be paying?
– I beg your pardon?
– At the risk of incurring the considerable wrath of my dear grandmother, who would remind me that I must never be required to repeat myself, I must, on this occasion, risking her shouting from her grave, repeat my question. How will Sir be paying?
What was meant to be an evening of conviviality amongst friends and acquaintances amidst the deep furnishings, large squashy cushions, paintings and dark woollen wall hangings from Turkey in the living room lined by book shelves containing manuscripts and novels, texts and biographies of those who pleaded to have their stories told…
My mother played Liszt. Not the transposed for modern players Liszt but the original bastard’s manuscripts that he didn’t want women to play, or anyone else for that matter, so betoken was he to his own musical genius.
Am I happy? It doesn’t matter, it’s not relevant, I accept my fate. Thoreau was right, the mass of men really do lead lives of quiet desperation
Having said all there is to say about songs the one remaining soul from the lost days of last centuries quelled rebellion and poetic wonder.
I have no room on my leaning frame
The seed that’s planted, in the ground
I have no mind for what lays behind
I put no weight on what others find
On the houses filled and so neatly lined
But to reach for the limits
of what I’ve found.
Caravan Parks. Classes don’t so much merge, as congregate there. Images of atmospheric smoke induced fellowship. Joy in green cans and littered superlatives. Smirks between crooked weathered tram lines suggesting paradise is at my doorstep.
There is not much to recommend Ballarat. It’s flat and it’s flatulent. Its people walk slowly along grey bleached streets with grey gold smiles on orange wrinkled faces. To drive through it, to the other side, is to celebrate restrained liberty.
All sorts of things
thoughts tied like lengths of strings
Run through my mind.
There’s a sign in the window saying the stores are closed
The doors are barricaded and the pipes they froze
They say that pride it comes before a fall
I think it’s got something to do with the writing on the wall