Highlights

The Queensland Brain Injury Collaborative (QBIC) is “a research-led initiative that aims to improve care across the trajectory of Acquired Brain Injury in Queensland”. Brain Injury Australia’s (BIA) Executive Officer, Nick Rushworth, was invited to share his lived experience of severe Traumatic Brain Injury (TBI) with attendees at QBIC’s “flagship event” – its Annual Symposium.

He told them “BIA’s colleagues will often say that ‘brain injury doesn’t discriminate’. And if, for instance, you’re selling injury prevention in an attention economy, you’d want your pitch to capture as many earholes and eyeballs as possible, to include as many people as possible within the ambit of risk of the injury you’re seeking to prevent.

Truth be told, brain injury, like other disabilities, tracks social-locational disadvantage. Those people at the greatest risk of a brain injury are drawn from exactly the same populations as those at risk of any injury – from backgrounds of low income and education, high unemployment and so on.”

FULL presentation
Classical Discontinuities. Radical Disconnections. And Ways to Build a Better Mousetrap

The  colours  were  so…UNNECESSARY, they made me smile: Resilience not resignation

…A SECOND neuropsychological assessment was my recovery’s… dead reckoning.

I was 3 months into a “graded” return to work at the ABC – you know the kind of thing; 1 day a week, then 2, then 3 etc. And I thought, I THOUGHT there were individual days, INCANDESCENT INSTANTS when I was stepping up in recovery, that – what – damaged synapses were somehow re-connecting and re-firing, or new ones swung into action. AND that this accelerated recovery hadn’t hit that slowing, abject taper that I thought, at the time, began SIX months post-injury.

UNTIL the…standardised tests found that my Performance IQ had QUOTE “declined significantly”, that my “attention, concentration and memory” were QUOTE “significantly impaired”, and that my “academic potential” would be QUOTE “significantly compromised”. This for someone – working full-time as a journalist, in postgraduate study part-time and coming from a family of intellectual over-achievers – this for someone rendered…DUMBER.   Permanently.

So, whenever I CHOOSE to remember my neuropsychologist – one of  the  many  luxuries  of  occupying  the  high  ground  of an…exceptional recovery is that I get to choose what I remember, AND forget – I’ve always reconstructed him in memory as wearing a labcoat, perhaps with a stethoscope slung around his neck. However he was – and his report was professional, copious – I THINK he walked me through the report. I…can’t REMEMBER whether he offered me any counselling to go with it. I can’t REMEMBER him offering me any…HOPE.

But I certainly remember the…sunset.

I took his report and headed home on the train. Walking westward down my main street before the turn to home, I was asking then, as I’d been asking with every step from the neuropsychologist’s office, what would a “significantly compromised” INTELLECT turn ME into?

Then I looked up into the sunset – one of those sunsets where the COLOURS were so brilliant and bright, as to be gaudy – hot pink clouds,  with  fluorescent  orange  linings.  The  colours  were  so…UNNECESSARY, they made me smile. Though, at some other time, they might have made me…laugh. I thought then, as now, MOSTLY: if this is what being “significantly compromised” feels like, amounts to, I can probably live with it.

And turned the corner to home.

Though it’s a…delicate distinction, I know that this was an expression of RESILIENCE, NOT RESIGNATION, not a hope fail, a failure of hope.

I’ll come to back to the WHY in a moment.

Attacking two cars with my face, leg and a bicycle

It’s not just time since injury. ANOTHER of the luxuries of occupying the high ground of an exceptional recovery is that I can afford to be PATHOLOGICALLY unsentimental about the morning of the 8th February 1996. And hope that a stale joke still plays:

ARMED WITH A BICYCLE, I ATTACKED TWO CARS. WITH MY FACE. (AND A LEG.)

“Fracture mid-shaft right femur” – the first car hit me mid-thigh. Over its bonnet, took most of the force of the impact with its windscreen frame – right here – just underneath the line of the helmet.

“Comminuted fracture right zygoma” – my right cheekbone and eye socket were in pieces.

“Three skull fractures, severe head injury” – my sister, who saw the CT scans, said it looked I was wearing the top half of my skull like a …cap, the fractures were so. Complete.

“Incomplete avulsion right pinna” – the first car had a mental sun visor over its windscreen which, with the…FORCES involved…ALMOST sliced my ear off.

“Multiple lacerations and abrasions” – there was lots of…glass. My body is, well, well-ETCHED.

I sailed? continued? over the top of the first car and landed on the bonnet of a second – some poor sod waiting in the side street for the lights to change.

The orthopaedic surgery was, relatively, a piece of cake. I think this is right; the force of the impact – my leg going one way, the car’s bumper the other – made the fracture one of the cleanest the surgeon had ever seen.

The plastic surgery, however, was a piece of miracle- working…EMBROIDERY. Easily, one of the most salient life lessons from my experience is next time you’re out and about, pay close attention to peoples’ EARS.

When it came to choosing a metal plate to fit the space where my right cheek, eye socket and right forehead used to be, the plastic surgeon – I’m led to understand – had hundreds to choose from. So, they CT scan your head, look at the space they need to fill – now full of non-viable, “comminuted”, PIECES of bone – and pick out, what, “Plate 302B”.

But when it came to my DANGLING right ear? A…handful of prosthetics to pick from, so I’ve been told. I pay real close attention to strangers’ ears now. They’re (almost) as unique as fingerprints.

I got hit inside the golden hour, with the right insurance with the right family

Two weeks in hospital.

Three weeks in rehabilitation.

I was back at work, FULL-TIME. By…AUGUST.

Which, in my…telltale WAY, makes it all sound, at once, HEROIC, a CRUISE.

My REFLEX explanation  WAS; I must have been lucky.      My thinking’s…matured since then.

Because I was on my way to WORK (in New South Wales) I was covered by worker’s compensation.

I got hit in the right…PLACE. When I think about the UNBEATEN parts of the United States, of Ireland, of Australia that I’d ridden my bike – I was INSIDE “the golden hour”; minutes by ambulance to a major metropolitan hospital.

I had private health insurance. I wasn’t really in any position to exercise my rights to, what, a private room, my choice of doctor.

But my family were.

You see, my mother’s a doctor. My sister – of the CT scans? – also a doctor. My father’s a…neurosurgeon. Not only did they hand-pick my care, my SURGEONS but – unlike, what, 99 per cent of Brain Injury Australia’s constituents – where very often the first time they hear the words “brain injury” is AT hospital – my family knew brain injury backwards, frontwards, sideways GOING IN. And, crucially – when to most of Brain Injury Australia’s constituents HOSPITALS seem like black boxes, with all the mysteriousness and hierarchy of a Catholic mass – my family had…STANDING…STANDING ALMOST at equality with the staff of the hospital. For instance, I was the standard, off-the-rack, HEAD CASE – agitated, aggressive, clearly a… flight risk – in need of both physical and pharmacological restraint. My family was able to engage in ARCANE discussion – AND debate – with the CLINICIANS about the number and dosage of anti- psychotics and sedation I was on – so as not to impede my recovery.

Why I thought I was resilient and NOT resigned

To return to my sunset and why I thought I was resilient and NOT resigned? Colleagues will regularly say that “brain injury doesn’t discriminate”. And if, for instance, you’re selling injury PREVENTION – in an attention economy, you’d want your pitch to capture as many earholes and eyeballs as possible, to include as many PEOPLE as possible within the ambit of risk of the injury you’re seeking to prevent. Truth be told, brain injury – like other disabilities – tracks social-locational disadvantage: those people at the greatest risk of a brain injury are drawn from exactly the same populations as those at risk of ANY injury – from backgrounds of low income and education, high unemployment and so on. To bring it…HOME – to MY HOMETOWN, at least – HALF of Greater Sydney’s young, risk-taking, SEVERE TRAUMATIC brain injuries occur between the longitudes of…Parramatta and Penrith.

That’s not the…”world” I came from. And I’d hazard a guess – whether it’s transplanted to Melbourne, to Adelaide, to Perth, or… BRISBANE – that MOST…again MOST of…YOU don’t come from that “world” either. I’m no bleeding heart – 10 years, 10 months, 10 weeks in journalism will drain that out of you – but many, perhaps the majority, of Brain Injury Australia’s constituents were already born behind society’s eight ball. Their brain injury…ADDS – ordinarily, significantly – to their disadvantage.

And call me quaint, but in a broader culture of creeping (some would say, galloping) competitive individualism – of sink or swim, with some safety nets – I just don’t reckon that society’s resilience dividend, of REBOUNDING from ADVERSITY, gets shared around equally…between individuals, between communities. And I wonder? worry? about an increasing? disconnect between the lives of Brain Injury Australia’s constituents and those who…TEND them: the clinicians, the allied health professionals, the service providers, the researchers. It’s perhaps nothing more or less than a perfectly natural expression of where income inequality meets real estate purchasing power, but Sydney’s – and my sense is a similar residential…APARTHEID applies to other Australian cities – Sydney’s northerners and easterners get a nosebleed adventuring south of Parramatta Road or west of the Harbour Bridge (unless it’s for the purposes of “ethnic” food tourism). Sydney’s southerners and westerners dare not stray north or east, even if it’s to seek the relief of a beach. Because you know what happens then – the 2005 riots at Cronulla, for example.

Problems with the second anniversaries

Recently, a woman contacted Brain Injury Australia because her horse…fell on her head. Certainly, a severe brain injury. And a non- compensable one. But she’d been able to afford her own rehabilitation specialist, SOMEONE senior, SOMEONE very experienced, SOMEONE experienced in brain injury, SOMEONE you’d imagine would be up on the latest evidence from research, SOMEONE well-acquainted with brain injury as a disability that often occurs in the prime of life, precisely at that point of entry into “adult” life – as was the case with this young woman – and everything that promises, SOMEONE REFLEXLY able, you’d imagine, to transplant himself, in imagination, into the life circumstances of a person trying to imagine what it would be like to come to terms with their recovery coming to an end, let alone the injury itself and, thus, SOMEONE to whom such experience had taught the light touch, the human, the HUMANE touch with such a “patient”.

When asked what kind of recovery she could expect, how long it would last – common enough questions, you’d imagine – he told her that she could QUOTE “bake a cake” for the second anniversary of her injury and the way she was THAT day would be the way she’d remain for the rest of her life.

I should stop there to state the bleeding obvious. I didn’t witness the exchange. Perhaps no group of people understands better than you the vagaries of memory: that it ordinarily plays tricks; that post-traumatic memory positively bedevils; and to never underestimate the memory-distorting potential of early-stage grief. But I’ve heard often enough about patients and family members being prescribed the myth of the “two years” that the truth of such experiences takes on a, what, iterative quality. And look, chances are the cake-making advice came with, what, a bit more HAIR on it than she remembered. Somewhere, someone has done the definitive research into how much – the 1, the 2 per cent of (just) the “bad news”, perhaps, and its NOCEBO effects – how much consumers and family members take away from the countless hours of conversations and consultations with health professionals, what they take away from that deep and endless crucible of such life-transforming events as these. And, given the context, how can anyone really make “MISINTERPRETATION-PROOF”, as it were, what for the clinician counts as no more than an opinion informed by experience – by what he or she read somewhere, sometime.

Well, you can’t.

But it’s been my repeat experience that statements – such as the cake-baking one – are hastily stored away by patients, their families, taken out regularly, a…MILLSTONE dusted off, re-examined, held up to the light of recovery and recovery measured against it – in the hope they’re proven wrong, or in dread, right.

However the cake was prescribed, whatever was said, I have so many problems with “it”, it’s hard to know where to start.

FIRST, that it’s wrong. From what I hope is something a little better than the UNCRITICAL OSMOSIS of what I’VE read, recovery from brain injury – in some shape or form – can continue beyond 2 years post-injury; for 5 years, 10 years and more.

SECOND, you want to learn the first rule you’d know if you’d ever spent a day in your life in the company of people recovering from an ACQUIRED disability? Prepare to be surprised: that the very nature of bell curves is they comprise BOTH normal distributions and outliers.

THIRD, I would have thought that the only mental set professionals could bring to dealings with patients and their families – one that would truly reflect the state of the neurosciences – is one of a general uncertainty: that, to paraphrase a former United States’ Secretary of Defence, what’s known about the brain, brain injury and the brain’s ability for repair and recovery is radically outstripped by both or either of the “known unknowns” and the “unknown unknowns”.

FOURTH, and this comes at how crucial hope – REALISTIC hope – is in the recovery from, and adaptation to, brain injury, why would anyone – their imagination bypassed, or otherwise – CONSIDER SAYING SUCH A THING AT ALL, even out of the most pressing need to inject realism into a patient’s prospects for recovery, or even – and I’m bending over backwards here, I know – as some kind of PERVERSE REVERSE PSYCHOLOGY, that the patient will somehow, with a drop-dead date threatening, work even harder on their rehabilitation with the recovery time they have left to spend.

Radical discontinuity between lives before and after injury

Look, any numbskull can take potshots at practitioner X or practitioner Y.

No TWO swallows make a summer, anyway.

Neither did I come here to serve up some dull, nouveau Marxism.

My real point is as mundane. As it is missing. And, after – gulp – 15 years in this role, as it is…MANDATORY. I’m STILL surprised by how many professionals who work with people with a brain injury, how UN-INTERESTED they seem to be in excavating what person the person in front of them was…BEFORE (a corollary of which – and I can’t imagine anything more RE-disabling – a corollary of which is being thought BECAUSE nothing BEFORE, therefore nothing ELSE than the sum total of your…impairments.) …to excavate what person the person in front of them WAS, as one of the first, tentative steps to breaching that radical discontinuity between lives before and after injury. And, if not that, to transplant themselves into something of the life circumstances from whence the patient, the client, the customer comes, as a way of building rapport – that royal road to DISCLOSURE, upon which so much of the therapeutic alliance with people with a brain injury depends.

So when I, again, CHOOSE to remember my neuropsychologist, I realise I’ve never really forgiven him for letting, NOT ME, but the next someone UNLIKE ME, or the next, or the next – someone with perhaps fewer…resources – to simply take THAT kind of report and walk off into THEIR sunset. It is, I believe, no exaggeration to liken it to saying: HERE’S A HAND GRENADE. I WANT YOU TO HOLD IT FOR

ME WHILE I TAKE OUT THE PIN. Now goodbye and good luck.

And again when I CHOOSE to, I can remind myself that no one escapes a brain injury of that QUALITY completely unscathed. Some people have glass jaws. I’ve now got a glass IQ. And I’ll long wonder whether this speech tried a little too hard to be too smart by half.

Nick Rushworth
EO Brain Injury Australia