When the Brain Tumour Screams

by Jul 8, 20186 comments

There are times, when viewed in the rear view mirror, when those moments of temporary crisis are upon us, when thought strings are tangled, when events spiral, when all we want is some small semblance of control. We plead to our innermost, when the insuperable scenario feels like someone is sliding down Niagara Falls in the barrel of our skull, that we plead for a lifeline be thrown to us so that we can regain some sort of equilibrium.

I don’t want to put a dampener on your week, I hope it’s been a good one but this was mine. It got ugly, decidedly so and as usual, the one closest to me bore the brunt of it. I had spent a considerable part of this particular day, when my chickens came home to roost, on the phone, having conversations that, whilst not taxing, were, I was later to discover, with some effect, draining me of energy and perhaps more importantly, of perspective.

I had shouted down the phone to an old friend “you’re not listening to me”. In thirty years of friendship, I had never uttered these words to him. He is one of the best friends a man could have and yet here I was, contradicting those years of friendship by yelling at him to just listen, over an utterly anodyne subject. I had manoeuvred myself into such a state, unable to process hitherto straight forward thought streams. I was oblivious not only to fundamental reason and logic, but to acceptance, understanding, wisdom and insight. In simple terms, I was blind to my own flawed humanity and in that moment, devoid of compassion.

I then railed at my wife, I tried to make her understand when she already well and truly knew that I was at the tail end of a meltdown. It’s happened before but not this ferociously, when my own inner frustrations reach a crescendo, where reason is jettisoned for justification and where frustration masquerading as thinly veiled anger seeps out of every flank and gland and turns me into a decidedly uncomfortable person to be around.

One of my daily chores is the not too onerous task of emptying the dishwasher. It’s one I normally embrace because it’s an opportunity for me to put the left hand, still in a state of neuropathy, to work, of retraining it to pull it’s weight. I deliberately and with some purpose, reach into the contraption with my left hand and grasp the saucer, the cup, the plate, even two of them if feeling adventurous and walk them to the cupboard, with a sly grin completing the effort as I rejoice in not having to rage over broken ceramic on the floor. The problem with this fairly simple plan is that often I forget to even open the dishwasher door. Do I blame the brain tumour, is it at fault? I don’t know. My wife comes home to find evidence of a task unfulfilled. She reminds me. I react to this news, aghast that I’ve neglected this simplest of domestic chores with, not an apology, but a bang on the bench with my fist, in frustration at my lapse.

Why should this bother me in this manner? It’s because I am trying to be normal, trying to take deficits out of the equation and it makes me angry when I don’t live up to my own expectations. All thought of anything resembling even the most basic of Platonic Dialogues is thrown out the door as I perform my own unique ritual, a foot stamp, a grimace, a complete bodily rotation followed by a futile attempt to explain. I am not lazy, I am drained, I am in momentary emotional disengagement. I have entered cognitive meltdown and not realised it, or have realised it far too late.

I had pushed myself rather too hard, trying, in retrospect, to take too much on. The things I had set myself to do, some of it necessary, medical appointments and the like but most of it part of the new me, reached its ugly denouement later in the day with my old friend and then my wife, copping it unnecessarily. I went for a walk, although that is too genteel a description. I stormed out. I was fuming, I would not be placated, like a child denied his toys, I strode out into the rain, with a determination that had nothing to back me up. I got to the end of the street, with Katrina back inside, I presumed, trying to work out how she should handle things, this ceremonious charade of mine, this ugly man that she was witnessing. I came to my senses and realised that the most important person in this mise en scene at that particular moment was not me.

I have been pushing myself in this new normal, finding that I could indeed push myself, only to find that I was unnecessarily pushing others as well. My thinking, if you can call it that, seemed to revolve around the idea that if I could lean into fatigue then others too should be made to lean into it, which is not only muddled thinking but an arrogant disregard for what goes on in others lives, as if I’m the only show in town.

One can attempt to describe, in that moment in time, the word search, in trying to express the frustration within, it does not come readily. The message does not get through, the normal circuitry fails, like an old electrical board that short circuits and switches itself off, the inner whirling that stoops and writhes and screams, a fog that envelops like a pea-souped Sydney, when traffic and people snarl and strained reactions assume primacy, the same short circuitry that has, on occasion, forced me to abandon my shopping trolley and walk out of the supermarket, unable to sustain the level of concentration required to appease the gods of self service. It’s an intolerance for anything resembling polite discourse if it requires a response beyond what I am currently capable of supplying.

I can’t blame the brain tumour, at least I don’t want to. I need to hold myself accountable for my actions. I do not ask for favours because to re-enter the world of normal will mean I have not been afforded any. However, and I’m sure you could sense the crunch coming, this is an all too familiar refrain, my brain is still healing but I feel as though it has worn out it’s welcome, it’s had enough time, surely it’s had enough time. Two years I tell it, how much time do you need, to heal the numbness?

But it’s the case, as much as kindness, love, generosity, compassion and understanding has been lavished on me by my wife and by my friends, I need to assign some to myself and to others. My wife bears this and for that I am eternally grateful, it’s something that I’ll never understand. How she does it I do not know. She has endured, as far as I am concerned, the greater burden and proves again and again that she is made of stern material indeed. I can only ask that she continue with me as I learn better to manage this thing, and forgive me my odd tantrum, in the hope that they reduce and eventually disappear.

The struggle with these inner demons is not a Sisyphean one. My brain is strong, I have moments of clarity never before imagined. There is a rainbow. One step, one day, at a time.

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Alice Parsons
8 July 2018 5:05 PM

A clearly and potently described portrait of frustration and exasperation-counterbalanced by exquisite self awareness and modesty. Next week will be a new week; please keep writing but never despairing

Pat Wynn
8 July 2018 6:31 PM

Oh Steve you describe so eloquently what Pete and I go through on a daily basis.
You are not alone. Learning to accept or deal with the new normal is difficult at best.
The frustration for you and your fabulous wife and friends seems to be endless, but hopefully will improve over time.
My frustration with Pete and his ‘new’ personality traits is pretty constant some days, others we deal with it more patiently.
Hang in there, it is hard but hopefully worth the effort.

8 July 2018 8:02 PM

Dear Steve thank you for sharing.
Please don’t be too hard on yourself and always remember to take time out for you and Kat as nothing else is as important
we appreciate everything that you are doing for BTAA but it must always come second and never put you under pressure xx
eat more lamingtons!!

8 July 2018 9:45 PM
Reply to  Catherine

Ha!!! It’s been raspberry scones this week!!
As his harshest critic and fiercest supporter, I don’t think he’s being too hard on himself – but he does need to be more judicious with the way he structures his self imposed workload. His drive and determination is astonishing.
In time and with practise, he’ll be able to be more self-regulated to avoid burn out. As you know his self awareness is remarkable x

Lisa Kelly
13 July 2018 8:59 PM

Thanks Steve for sharing your inner thoughts. I have often found myself thinking like you and trying not to blame my hideous passenger for my sometimes unrecognisable behaviour. We need to not be so hard on our new unrecognisable normals indeed. I’m only new to the group but greatly appreciate your time & effort for being a fabulous advocate for us all.

Richard Andrew
16 July 2018 12:15 PM

Steve, thanks for this honest account of (one aspect of) your journey. You always were up for a big journey you know, although I suspect you weren’t counting on one quite this mammoth! Don’t forget there might be a pattern or two in there ready to rear its demanding head given half a chance. God knows you’ve over-thrown a few in the last two years which is a credit worth acknowledging. I think of Dory in Finding Nemo … “Just keep swimming, just keep swimming … ” That’s about the best I can offer my friend.