50 Shades of Black (and the NDIS)

My story seems one of opposing forces, not many shades of grey – either black or bright Napisan white. At a glance – depending on the light and speed of the head turn, I am either gripping tightly to the soaring feathers of the giant eagle, the wind kissing my face and gently ruffling my golden locks, or, I am groping and flailing my way out of the giant eagle’s droppings that have knocked me on my ass and buried me neck deep in filth.

A glance that catches me in the light, sees a triumphant character, rarely struggling with feats of academia or athleticism, climbing the career ladder and winning the gorgeous wife and kids lottery. I like this glance. It’s a superpower, able to drag me out of the deepest pit.

But a glance that catches me in shadow, draws a timeline of calamity, some poor luck and the occasional kick in the bollocks. A dreary aura of trauma seemingly tethered itself to me at an early age, not able to block the light of wonderful and amazing experiences but holding on nevertheless with an ever determined grip to my usually untied shoelaces.

I bounced into this realm of the living a month and a half early through emergency caesarean. It was a procedure performed to save my mother’s life after a severe case of preeclampsia that would later be used as a case study in the training of future medical staff. My own life was more of an afterthought, it was presumed I would be dead or pretty darn sick to say the least. Even as a foetus, I was up for a challenge  and perhaps with some innate resilience I pulled through – tiny, scrawny and ginger, but otherwise loveable!  My eventual list of diagnoses kicked off with Talipes Equinovarus (club feet) and a hip malformation. I avoided the months in callipers others at that time endured, thanks to a forward thinking orthopaedic surgeon who opted to prescribe  exercises and some fancy boots that would slowly turn my feet the right way. I was walking around by the time I was 18 months old and though a little pigeon toed, my old trophy shrine suggests that I must’ve been able to scamper ‘round the hockey and cricket pitch just fine! 

I’m an ordinary swimmer though. For as long as I can remember, the ocean makes me a little uneasy. I’m assured this wasn’t always the case – it seems to stem from an early incident when I was all of four years old and having a great time with my brothers in the shallows of the local foreshore. A great time that was until, another local lad thought I’d make a comfortable seat. He plunged my head under the water and lounged on my back with no regard for my apparent need for air. Whilst my mother watched on helpless from the beach, my 6 year old brother recalls the slowing down of the world around him to this day, as he ran Baywatch style through the water, launching himself at and knocking my unwanted jockey into the ocean, freeing me to finally gasp in some oxygen. A clear memory for some, but my recollection is restrained to an anxiety – that keeps my head above water.

From water to fire!

My brothers are awesome – often shits – but still awesome and we all share the best of friendships. But we’re pretty lucky to have made it through, really. At one point, my scientifically minded elder brothers thought to discover the ignition point of my foam mattress, my memory of this is slightly different to theirs – apparently I was next to, and not in the bed.

The fire theme continued with a grander outdoor experiment testing the speed of flame transfer from a small contained dry grass pile to a grapevine that covered the entire rear fence of our property. Apparently the rate of spread exceeded the safety parameters that were prepared for  and our back yard was engulfed before our eyes! Again it was always under control if you were to ask my brother!

A constant, in the background of all my childhood years of fun and calamity  (I could tell some bmx or hockey stories and other ‘boys will be boys’ moments that left another Murfitt, usually me, in the emergency ward) was a condition that was undiagnosed  until I was 16. A simple defect really, but an unknown cause of many dramatic scenes that would leave me feeling weak and pathetic.

I was a slow eater, always last to finish a meal. For the life of me and to my huge embarrassment I couldn’t swallow a ‘damn tablet’ (as I came to know them – as in “Todd! Would you just swallow the damn tablet!”). As it turns out an astute radiographer discovered that my oesophagus was being impeded by an errant artery, and a web of blood vessels was slowly but surely squeezing my gullet. Leaving the smallest of openings, where only the most well chewed food could travel past. A small tablet it turns out was actually an enormous choking hazard.

And so, my first major surgery wasn’t my ‘awake’ brain surgery but open-heart surgery twenty years prior, which came with more x-rays, MRI’s and iodine injections then Evil Knievel. One of the most vivid memories for me though was the moment a physiotherapist suggested post-op that she thought I ‘might get full use of my left arm back’. I had never known there was a risk of anything else… and yet I was playing cricket for my district within a month – against doctor’s advice of course. ?

Before I could get too comfortable with my new high performing gullet and radical scars, my brother who had just completed high school himself, picked me up from school in my very own ‘71 mini clubman, that I was ever so close to being able to drive on my own. I enjoyed seeing it pull up even though I knew it would no doubt have suffered burn-outs and doughnuts at the hands of my brother along the way. But when I opened the passenger door something was off. In an effort to ease the tension my brother got straight to the point. 

“How’s it going cancer boy!”

It didn’t take a genius to work out that the results of a biopsy taken the previous day of a growth on my back had come back, and my brother -sworn to secrecy of course- had been let in on the news. 

His abrupt sharing of the results did save any awkward or soppy ‘sit-down-son-we have-something-to-tell-you’ moments and instead I chose my ‘last supper’, we ate, and slept restlessly, before meeting my GP for an excision and skin graft in the morning. The day-surgery was a bit of a disaster itself. At one point I had a pillow to bite on and a shot of adrenaline for pain relief, whilst a chunk of my chest was sewn into the middle of my back. Leaving me the proud owner of an ugly scar on my chest and a circular patch of chest hair on my back to remind me of the ordeal!

That would be the first of two Melanoma’s removed along with their many‘let’s not take a chance’ cousins – which made up the majority of my hospital visits over the next decade. Until the more recent Parkinson’s Diagnosis and ‘awake brain surgery.’

Now that is quite a glance at some medical and family dramas that I’ve processed over the years. My generally positive spirit has always been able to look forward to the next chapter of my life.

This post is not intended to be a ‘woe is me’ grab for attention, nor is it “Go Me! Look at how strong I am”, but hopefully an insight into either my crazy mind or a potential flaw with the safety net that, I am in the same breath so very thankful for, yet embarrassed to need – our National Disability Insurance Scheme.

Of all the incidents that could haunt me, surprisingly nothing seems to come close to my experience of applying for the NDIS. Asking for help, which is hard for everybody, and a particularly lacking trait of my own personality.

Like a knife to gunfight, a positive outlook as a defence mechanism is stripped away, along with the stoic, and courageous armour which is so much more comfortable than the sackcloth of vulnerability it is replaced with. An intense focus on all that is shit and will get worse. As if not enough, this is teamed with evidence from medical practitioners concurring with your assessment and adding more detail to the level of stink. Impact statements on others, whom are subjected to your presence, are sprinkled in like a dash of salt on an exposed wound, packaged up and sent off for judgement. 

Is my turd of a situation big, bad and smelly enough? Did I hit the right keywords that will attract the rubber ‘yes’ stamp? Apparently not, I would discover some three months later after countless enquiries, with an invitation to re-apply.

I need help, but I do I really need it this much?

Should I take off my radiation suit, exposing myself to the core of a nuclear reactor, to simply apply a band-aid to a slowly but dangerously bleeding cut? There is no choice – not really. I knew that if it took one hundred applications, that is what I would do – because of the impact statements.

The support – although targeted towards me, is for others too, and the stinkiest part of Parkinson’s is that for a disease so isolating, it ironically hits those close to you equally hard. So the band-aid is for me, but it is also to stop my cut from dripping into the stinging eyes of my children, and my wife. So off with the suit…

…and back into the toxic world of negative medical reports, OT assessments, impact statements, begging for help from anyone who might know more about presenting the turd at the right angle, in the correct lighting and speaking the correct language to meet the unknown criteria of an unknown assessor.

The outcome of the second time round, was swift and support put in place within weeks. It is life changing. Previously low priorities in the world of family life, such as physiotherapy for myself, or some help in the garden give me the power to flip those impact statements. So yes, the NDIS is amazing, priceless in fact.

Yet the exposure to that radiation, though metaphorical, is particularly apt. It’s like a change to my DNA, morphing just a few positive cells of the many thousands, into negative ones, weak and pathetic, and contagious.