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The Day My Brother Was Meant to Die
October 2019
Five years ago I listened, sitting on a street kerb, as a voice on my phone told me my youngest brother would die.
I registered almost no emotion. Up until that point, not one part of the day had felt real. Mum text me that morning, half asleep I'd heard the vibrating phone. Unwilling to abandon the warmth of my bed, I searched for it half-heartedly with my closest hand. I finally found it, after falling onto the floor, and then registered the message I'd received. "Something bad has happened to Ben while diving." I asked mum for more information, thinking that things couldn't be that awful. After all, everything about the morning was so mundane. But that mundane morning, tragedy came for my brother, and changed the course of our lives forever.
Ben is the youngest boy in our family. He was seventeen at the time, my middle brother Zacc was nineteen, and I twenty two. We were all born in Geraldton, about five hours drive from Perth, Western Australia. Mum and dad raised us on a diet of church, beach and music (plus meat and potatoes).
Growing up, God was the number one priority in our household. It was nearly impossible to convince mum and dad to skip a church service. Still, we'd bundle into the LandCruiser after church in a race to beat Geraldton's gale force winds to the beach. Nine times out of ten we'd fail… so as a teenager I learnt to avoid going. It began to seemed Sisyphean. But Zacc and Ben dove deep into the ocean life, and were almost always out surfing or diving with Dad on the weekends. This particular Saturday had been no exception.
Not long after getting in the water, Ben had complained of a headache and told Dad he was going back to the dinghy. Swimming to the boat he felt a sudden and intense pain. He's since said that it felt like a hammer had struck his head. Then he lost consciousness.
Mum called me not long after she first text me, at that stage knowing almost nothing, only that Ben was being rushed to hospital. Calls to my Dad (who didn't answer) and my Nana (in tears), failed to alleviate my confusion. For the next hour, I had almost no contact with family, since they were all occupied at the hospital. Frustrated by the lack of information, I still sought to repress my feelings, waiting to assess things 'rationally'. Rather absurd behaviour in hindsight, but it felt entirely logical at the time.
News of Ben's mishap spread across town. I watched as Facebook posts from Ben's friends appeared in my newsfeed. Checking it almost fanatically, I realised that someone had written "RIP Ben". A feeling of full-blown dread, at odds with everything I'd felt until now, swept across my person. A little more frantic, my phone finally got through to Dad. Hearing his quavering voice I asked him to explain what had happened. "Something with his brain" he'd said, before putting me on the phone with our family doctor.
He explained that Ben had suffered a massive brain bleed (an acute subdural hematoma) over Broca's area of the frontal lobe. Initially, the cause of the haemorrhage was unknown. But soon the 'arteriovenous malformation' (AVM) became our enemy.
AVMs are a structurally unsound cluster of blood vessels. In two percent of cases, they burst and leak blood. These bleeds are usually small enough to preserve the victim's consciousness during diagnosis. In Ben's case, after laying undetected for eighteen years, his had bled in a way that was almost fatal.
Beginning with the sudden headache, blood pooled into a three inch mass between the layers of brain membrane. This bloody mass disrupted the delicate neural ecosystem, increasing pressure on the brain. It began suffocating. Significant brain damage was guaranteed from the bleeding alone. Any attempted surgery would cause further damage.
Dad had realised something was wrong with Ben not long after the AVM had burst. He'd been alerted by friends arriving late to see Ben struggling in the water, dragged him from the ocean, brought him into shore, and rushed him to the emergency ward. Ben vomited, spoke unintelligibly and appeared to be losing consciousness before they made it to the hospital. There Ben was placed into an induced coma and scans of his brain were taken to be viewed by a neurosurgeon in Perth.
While I was in Perth, confused and uninformed, Mum, Dad and Zacc were struggling to understand the events of the morning. How could the mere presence of blood on the brain render a healthy seventeen year old unconscious? Before they'd had time to come to grips with it, a member of the hospital staff sat them down. He gravely told them that the neuro-surgeon didn't believe an operation was feasible. Though not yet dead, Ben was beyond saving. Being told this over the phone, removed from the events, my reaction was pragmatic. I asked the doctor what would happen next, and he told me that Ben would die.
With death inevitable, my parents were asked for their permission to donate Ben's organs. If they decided against it, he'd be kept in Geraldton Regional Hospital until death arrived. But feeling it was what Ben would want, they gave their consent. To maximise the potential reach of his organs, Ben (along with mum) was placed aboard an emergency flight, and so almost five hours after the initial text message I was finally met Ben's near lifeless body in Perth.
I pulled up in the hospital parking lot as something was removed from a haphazardly parked ambulance. Covered in a mess of tubes and pipes, the face was impossible to recognise. But standing beside the hospital bed, an image of my distraught mother is burnt into my memory. I ran to hug her, and together we followed the body into the hospital's maw. As an elevator took us into the hospital's depths, I took notice of Ben for the first time. The severity of the injury appeared at odds with the ambivalent expression on his face. There was no evidence of pain, but neither was there evidence of consciousness.
Things begin to blur from this point, seeming less like memory and more like a series of hazy images. I see myself sitting in a room as the doctor on-call explains what arteriovenous malformations are, he tells us that further tests will be done to fully assess the damage and that it's difficult to say anything else that might happen. Ben's brain is teetering on the edge of death. We take a few photos with Ben in his hospital bed expecting them to be our last together. Then we wait, and wait and wait.
Mum and Dad stay at Ben's bedside — only two visitors are allowed in the ICU at a time. Occasionally swapping in, Zacc and I sit in the waiting room. My phone runs out of battery, which provides some relief from the rabid influx of messages I have been receiving. With time to pause, and focus on the room, I realise there are many other strangers with us and they are almost all miserable. The air is uncomfortable and frigid, and I wonder how many traumatised people, stranded at the mercy of the hospital staff and waiting for good news that often never comes, have taken the time to consider it a nuisance. I feel a little selfish.
After an eternity, we're ushered into a room with the neurosurgeon who, contrary to what we'd been told, is suddenly willing to attempt to remove the blood. He tells us that Ben may die on the operating table, describing the best case scenario as severe brain damage and a guaranteed loss of physical function. But there's never any doubt that operating is the only option. We're taken to a care room at around 6.30 pm, told Ben's surgery will begin at 9.30 or 10pm. Some family friends order pizza, and with time to process the trauma, Dad begins recounting the events of the morning over and over again in an extremely vivid way. He takes breaks to pray. Mum has not stopped crying all day, but soon hits a wall. Zacc, like me, is on the less emotional end of the spectrum but having been at the hospital in Geraldton is far more rattled than I.
My Mema and Grandpa (paternal grandparents) have joined us at this point, they keep restating their confidence that God won't allow Ben to die. For most in the room there's a pervasive sense that none of this has actually taken place. The day feels dreamlike and all our roles scripted, authored by instinct and lacking any real logical basis. To review the way we've acted causes cognitive dissonance, exposing how much of our response to grief is conducted on autopilot.
I sit on a couch and consider all the doctors have told us. Throughout the day I had googled as much information as I possibly could, in a kind of dissociative way. Nothing I read provided me any hope at all. I'm loathe to admit it, but I gave Ben up for dead that day, beginning to prepare for the week of funeral planning I was sure we'd face. The intense wave of grief certain to overwhelm my family appeared most terrible to me. Ben would die, but instead of being able to process the emotional burden of his loss, I'd be surrounded by people whose grief I could have no effect on. My powerlessness in the face of death and sadness seemed overwhelming, and frustratingly time consuming.
I also considered it inevitable that God would be used by all to make sense of tragedy. That angered me, but still I bargained. Through gritted teeth, I prayerfully promised to never fall away from faith again, if God would just bring my brother through. Less from the belief in God's power, and more from a kind of Pascale-ian certainty that should God exist, he would definitely punish Ben for my lack of piety. In this case, I was not making a wager with my own soul's eternal fate, but rather for the physical existence of my brother.
Near midnight and with Ben in surgery, all of us were enduring a torturously sleepless night. It was impossible to ignore the length of time that had elapsed since the commencement of surgery. As the minutes ticked by I felt more and more certain that his death was imminent, so in that sense no news was good news. More than four hours of brain surgery felt like Russian roulette, and whenever the phone rang my heart began to sink, preparing myself for the fits of woe to follow. But that terrible release of grief never came, instead we got a call around 3 am to say the blood had been successfully removed. No longer plagued by the thought of Ben's brain being operated on, we managed to find a few more hours of sleep. But it still remained to be seen if Ben would ever wake up.
Over the next two weeks, we fell into a routine. The highlight of each day was the far-too-short visit from the neurosurgeon, who we would pummel with questions. We designed queries that could provide us hope that the pale body on the hospital bed would soon be reanimated. Swollen and bruised from the surgery, with half his skull removed, Ben's face was beyond recognition. A sudden depression interrupted the plane of the head, brain matter was covered loosely in skin, and a mess of stitches tenuously held it all together. Comatose and living off grey paste piped directly into the stomach, we watched his body wither away, all muscle definition fading into bone. He was covered in cooling pads used to induce therapeutic hypothermia in cardiac patients, making his body clammy and wet. Unmoving on the hospital bed, he began to take on an inhuman quality.
Following sleepless nights, we'd return to his bedside to ask him questions and, worried that part of him might be confused and scared, let him know what had happened and that we were with him. We hoped our words would traverse the barrier of unconsciousness and inspire him to return. Learning to comprehend the electronic monitors and understand his vital signs, our emotions were dictated by spikes, dips, and obscure terms like "intracranial pressure". It was the means by which we measured his prospects and set our own emotional expectations.
Mum cried almost every hour, the emotional weight of the experience crushing her. Dad was strong for mum, but more broken than I had ever seen him. As a relatively new employee in his place of work, Zacc lacked the leave to spend weeks in Perth, but didn't want to be away from the family in Geraldton. So he distracted himself with finding work in Perth and supporting the family however necessary. Similarly, I continued to stifle my emotions by arranging things I knew I could control: Organising Ben's exemption from Year 12 exams, coordinating with friends to have meals delivered every night, and writing Facebook messages for hundreds of interested family and friends to see. Enquiries from news media also took up a great deal of my time, Ben's story seemed particularly compelling to journalistic vultures and they took every opportunity to hound my family. From phone calls, to attempts to gain entry into the ICU, they provided extra anxiety to a family that was already dealing with an intense dread. In spite of multiple requests not to run the story, Channel 7 explicitly told me that the emotional state of my mother — further distressed by their badgering — was less important than "informing the public". I've had nothing but animosity for them since.
As the first week passed, the doctors told us it was imperative that Ben soon respond. To assess if the brain could still function, they attempted to elicit a reaction of his pupils to light, eventually achieved and celebrated trepidatiously. The second necessary response was more far more pertinent to our concerns: Following vocal instruction. Placing our hands between Ben's cold fingers, we'd tell him to squeeze if he heard us, to move his finger if he heard us, to make any movement if he heard us. It was uncertain what level of function Ben would return to after his brain had endured significant damage, the nurses said he might be entirely paralysed yet conscious of everything that was happening. He might also just be braindead.
No longer in an induced coma, his consciousness was now something only he could determine. So the longer he went without responding, the more concerned everyone became. Nearing three weeks, we learnt the shift patterns of the ICU nurses, and they referred to us all by our first names. Every now and then, Ben would cough, or shiver and shake, showing little signs of humanity that belied the reality of his situation. In those moments, my heart would leap in thought that Ben had returned to us, and then I'd remember these movements were just bodily functions. It's odd to observe the body in autopilot, Ben's physical system functioned as it should, fighting off illness (he'd developed pneumonia) and expelling bodily fluids as necessary. The boundaries between a person's physical presence and the intangible nature of the mind and soul reared their head, but I had no time to nurse an existential crisis. That would come later.
One evening, after trying to get Ben to respond to us for a few hours, we went back to our accommodation to have dinner. After half an hour, a call came from a nurse joyfully telling us that Ben had responded to multiple commands. All three weeks of tension were suddenly released, as everyone joyfully hugged each other, and Pa, my maternal Grandad and an eternally stoic figure, cried tears of joy. It took a few days for Ben to respond again, but soon the doctors were convinced that he was cognisant.
I don't remember how long it took, but eventually Ben opened his eyes. Moved out of the ICU and into his own room, I arrived one day to see him staring dead eyed at the ceiling. He was unhappy, I imagine confused too. The brain bleed had paralysed an entire side of his body, and the pipes and tubes clustered around his face clearly frustrated him. Outside of annoyance, Ben's consciousness did very little to shake the perception that the brother I'd once had was gone forever.
While family, friends and strangers had supported us every minute of the first few days, their lives soon returned to normal and I watched as the world continued on its merry way with no regard for our traumatic cocoon. Not to imply that anyone forgot about us, but nobody else could match our investment. It became the core of our life, as simple things like the raggedness of Ben's breath determined our emotional state for the day. It was hard to imagine that life could return to normal in a sense, as we'd steeled ourselves for an entirely different paradigm: Steeped daily in pain, but tinged with an odd joy in response to any sign of progression in Ben's physical state.
I'd been internally conflicted since the day of Ben's accident — suppressing any real sadness because I didn't see the purpose, but conscious of a sick feeling in my gut and a fear that instead of Ben, we'd be left instead with an empty vessel that had once housed him. His expressionless stare was debilitating to observe and impossible to perceive personhood within. And then one day, as I stood by Ben's bed, his hand slowly snuck up my chest. Staring straight ahead, apparently ignorant of my existence, he touched my shirt on the breast near the nipple and then, absurdly, he pinched it. A giant smile beamed on his face — the first positive emotion he'd shown — and he began to make noises resembling laughter. The feeling of release which washed over me, and the entire room, has no peer. It was the first evidence that his personality had survived, and so a giant weight was lifted. The decision to operate had been fraught with the risk that we'd condemned Ben to a tortured existence, but now we knew that he'd been saved from that fate. The extent of his recovery was still unknown, but if laughter was still in his life post-bleed, then it was a life worth saving him for.
Ben was in hospital for something like 3 and a half months all up. Eventually he moved to Fiona Stanley to begin focused rehabilitation, and prior to returning to Geraldton underwent further brain surgery to remove the AVM, which could have bled again at any point. Ultimately, the medical legacy of the bleed was expressive aphasia (reduced ability to produce language, in spite of comprehension), partial blindness in the peripheral vision, and short term memory loss. Returning to Geraldton, he continued to undertake rehabilitative therapy (speech, physio and occupational) for a number of years.
There were lasting health impacts for me too. I've read that it takes two months to form new habits, and in hindsight it's clear that during the sustained period of Ben's hospitalisation I developed some unhealthy emotional habits. Early on, I'd drive to the hospital and think about the likelihood of Ben's death. I'd feel overwhelmed by the thought that people I walked past might one day be blindsided by injury or illness. I ruminated far too much on the inevitability of my own death. My brain grew used to this pattern, and slowly it became habitual, remaining years after Ben had recovered.
Similarly, I habitualised the method of emotional repression I'd used to function during Ben's worst days. I learnt to repress my emotions, and in the years that followed there were days when I felt neither joy nor pain. I also fixated on a feeling of guilt: Guilt that I'd given Ben up for dead too quickly, guilt that I hadn't been the victim of the brain injury, and even guilt for being occupied with my own guilt instead of concern for Ben. Years later, when his recovery had far exceeded even the most optimistic of predictions, I was still obsessed with it. Eventually, I was able to seek some professional help. I still find myself intellectually drawn to melancholy, but now I'm better capable of recognising when I'm irrationally drawn to it.
Even though our current lives are less defined by Ben's brain injury, I don't think the hurt will ever go away. It's something awful that happened which shapes the way I now see the world. A new emotional colour that kind of tinges everything else, just a little bit. Even in 50 years, when I'm too old to remember things as vividly as I do now, I'm sure I'll mistrust the thin veneer of social security, confident that it can all be withdrawn in one fell swoop.
Ben had to deal with something far beyond anything he ever deserved, at an age when the world was just opening up to him. I'll never express anything close to thanks for that. What I do have is intense admiration for the way Ben handled remarkably unfair circumstances with courage and perseverance far in excess of my own. I talked to him yesterday afternoon, and asked him what he thought about it being five years. He told me he just wants everyone to forget about it.
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Originally published on Medium, 2019
