The Ballot

Dean Wallace, the Prime Minister of Australia ratified The Ballot. It was difficult to tell from his countenance at the time how he felt about it. He was a master of sham. Chelsea was the only one who could see the truth in him. She watched her father, like she’d done for the 35 years of her life and knew that he was secretly pleased. The heavy scent of his cologne cloyed up her nose as if the very air was made of particles of him.

“What now then Dad?” she asked him with an edge to her voice. “Going to rub out all the um… what did you call them? Ah yes, that’s right, the filth? Going to send them off to where they belong then are you?” Her father didn’t respond, so she paused a moment, the index finger of her right hand tapping a point on her face just below her mouth. “Did you ever wonder who is going to shine your fucking shoes?” she said.

“Chelsea,” The PM sighed. “You know I don’t like it when you swear like that. Besides, I shine my own shoes, you know that.”

“God, Dad! I didn’t mean that literally, you stupid man. I mean who is going to do the everyday things like grow the food, drive the trucks, build the roads and serve your coffee? These are people you’re talking about.”

Wallace waved a hand about dismissively. “The ballot won’t be selective, well, not really. People like you and I will be spared, but everyone else, will be entered. Not everyone who does the things you’re so concerned about will be removed. We’ll retain a large portion of different sections of the global community just by applying the system’s capacity for random selection,” The PM said.

Chelsea’s mouth fell open at his statement. “Gah!” she said. It was a visceral response. Her father was about to kill sixty-five percent of the people on the face of the earth.

The earth was overpopulated, everyone knew that. Policies had come and gone to address the issue, but nothing really worked. No one was prepared to make the changes necessary to secure the future. It was always seen as ‘someone else’s problem’.

“Goodbye Dad. I can’t be around you,” Chelsea said, the heel of her shoe catching in the carpet as she pivoted. She could feel it embedded deep in the pile.

“Oh, come on love, don’t be like that.” Wallace tried to reason with her as she struggled with her shoe.

“I always hated these bloody shoes!” she screamed as she yanked it and several cords of carpet free. She let the shoe fly at her father, but the throw was wild and the fine leather shoe hit the book case off to his left. She reached the door and holding the remaining shoe she looked back and said, “I don’t even know who you are.”

The ballot system was developed by epidemiologist Belinda Haesp as a tool for global diagnostics. Originally called FreePan It was meant to track and monitor disease outbreaks on a global scale so health care could be provided when and where it was most needed. Fundamentally it was about preventing pandemics, about providing treatment, cures and relief from illness. It was about stopping diseases like HIV and COVID in their tracks. It was about making the world a better place, not about marking people for destruction.

Cancer claimed Haesp just after the launch of her invention and the program was cancelled. Haesp’s boss, Chad Smith, himself an investor, not a scientist took control of FreePan, seeing it as a mechanism for global control. Through underworld connections and collaboration with Dean Wallace, the Ballot System was born. The collaborators knew little about the medical technology behind the system, caring only that they could hijack its original purpose for their own: to socially reconstruct the global community through a randomised cull.

FreePan consisted of 24 satellites that were launched into orbit from a location in the Australian desert. Half of the satellites were trackers and half were inoculators. The trackers went into high orbit and the inoculators fell back to earth not long after separation from the rest of the mechanism.  During the fall they spread a formulation based on human DNA into the atmosphere, where it mutated and became bio-active, homing in on its earth-based targets: every single human on earth. The bioactive components migrated down to earth and bonded with human DNA, altering certain atomic orbits within the human DNA structure. It provided real time tracking signals to the tracking satellites. For the first time in the earth’s history, every single human was accounted for and it only took around 24 hours.

Haesp had envisaged that FreePan would deliver cures from a central location by remotely altering the structure of endogenous retroviruses, present in all human DNA, liberating active anti-viral agents, capable of eliminating all disease causing viral agents on earth. Smallpox had been eradicated, why not HIV?  Haesp was truly visionary and she embedded within FreePan the capability for randomly selecting DNA, a provision for medical research. It was an effective way to recruit geographically and genetically isolated participants in trials and studies. It was this capability that the collaborators wished to exploit.

Chelsea knew there was nothing she could do about the inoculation. That had already occurred, but as she stomped down the hallway a plan began forming in her mind.  If she couldn’t stop her father from pulling the plug on humanity, she had to find out who was on the Safe List and feed their details back into The Ballot. “Bite me,” Chelsea said to herself as she pushed open the door to the data room. The faint smell of ozone rushed out to meet her and determination gripped her bones as she locked the door and set about accessing The Ballot’s databases.

Back in his office, the PM contacted Smith. “Time to proceed my friend,” he said.

“Are you sure the Safe List is secure?” Smith asked.

“It’s water tight,” Wallace responded. “I’m looking forward to… what was it they called that book? Ah yes, I’m looking forward to A Brave New World,” he said and hung up the phone.

Chelsea punched away at the keyboard. She had no trouble gaining access to the main database, but it took some deciphering to locate the genetic information for each country. Strings of meaningless looking code ran down page after page and she didn’t know how much time she had to find what she was looking for. Sweat was starting to stand out on her forehead. “Come on! She shouted. It had to be there somewhere. Tears of frustration stung her eyes, until the code became a smear of green. It was then she saw it.  A few lines of code contained a red letter instead of being entirely green. She didn’t know what program they had used to identify individuals, but one of these lines represented her own existence. She worked quickly to change all the red letters in each country’s database back to green, and then prepared a reboot to apply the changes.

Just as the system had started to close down the PM hit the enter key on his own computer to execute The Ballot. Everything scrambled and the screen he was watching became a blur of green. “What happened?” he asked the empty room. He pushed back from the desk he was sitting at and marched out into the hall. As he strode towards the dataroom he saw Chelsea’s discarded shoe sitting at the door. “Chelsea!” he yelled and began to run. In his haste he failed to notice the silence that weighted the air.

The door was locked of course, but he shoved against it wildly until the lock sprang free. It was gloomy in the dataroom, but he could see a screen illuminated in the far corner. It too was a jumble of green. “Chelsea, are you in here?’ he asked, taking a few small steps towards the green glow. He could smell her perfume: L’air Du Temps.

He arrived at the desk and saw his daughter. She had tumbled off the chair in a pose that made her look wooden. He bent to shake her, but as his hand touched the skin of her upper arm he jerked it back in shock. She was smooth and solid, like plastic, like steel. Even though dead for less than a minute her body had turned hard. She had become a sculpture of the very recent past.

He jumped up shaking his head. “No, no, no, no!” he repeated as he ran from the room, down the stairs and out onto the street. The still air enveloped him and solid bodies were everywhere. “Anyone!” He yelled it over and over again until something tore in the back of his throat and he tasted his own blood.

He was the only one left.

The Power of Chooks

Jackie pushed Clay along the footpath. She regretted now the decision to leave the car at home. Some of the rubber had come loose from the front wheel of his wheel chair, making it difficult to push. She stopped a moment to see if she could apply a quick fix, but when she saw the problem she knew that it wasn’t something a quick fix would take care of. The whole wheel needed replacing. “Bugger,” she said, but immediately felt bad that she was leaning so close to Clay’s ear when she said it.  “Sorry Clay, Mum is having a bad day.” Clay looked off to the left, the way he always did, his head lolling on the headrest.

Clay was trapped inside himself somewhere. He’d been like that since birth. Jackie couldn’t see the point in labelling Clay’s condition. She’d heard so many names for it over the years and none of them mattered anyway, because it didn’t change anything for Clay. It didn’t change anything for her, or her husband, Tim either. They were never angry at Clay, but were often angry at each other. Sometimes anger was all they had.

While his mother inspected the wheel, Clay looked at the grass growing out of the cracks in the footpath.  There’s a beetle in there. I can see his legs wheeling and burrowing. I wonder what he feels like? he thought. His mind-voice was loud and clear. It sounded to him as though it cut the air the same way everyone else’s real voice did. He often wondered what it was like to have the two voices: the one inside your head and the one outside. Was it hard to tell the difference?

Fighting with the wheelchair, Jackie continued pushing Clay up the hill. It wasn‘t a particularly steep slope, but the wonky wheel made the going difficult. She thought about all the things she had to do back at the house and a feeling of vast overwhelm migrated through her. Tears stung her eyes and the footpath swam in her vision. “Almost there,” she said to herself as much as to Clay. “Almost there, almost there, almost there,” she repeated.  Jackie’s lips barely moved, making the sentence a string of meaningless sounds as she built a barrier out of it through repetition.

Clay hated it when his mother was upset. Mum, don’t cry. Please Mum, I love you. Everything will be ok, I just know it, his mind-voice said, and his mind’s eye saw himself smiling up at her and stroking her arm.

Tim was working on the chook pen when they got back to the house. The chooks were arriving that afternoon and Clay was looking forward to it. He’d never had a pet before. The neighbour’s cat, Rasters used to jump into the back yard sometimes and Clay’s heart would skip a beat when he saw it there, stalking through the marigolds, but his dad shooed it away with a big broom a few times and after a while Rasters never came back.

“Why are you so upset?” Tim asked Jackie, the annoyance in his voice barely disguised.

 “The wheel, the front wheel is stuffed,” she replied.

 “Oh, come on! We only just had that bloody thing fixed,” Tim said.

Don’t get mad Dad, please, it’s not Mum’s fault, Clay’s mind-voice pleaded. His mind’s eye saw himself crouching down by the wheel to see if it was something he could fix. When he saw it wasn’t, his mind-voice said, Dad, just call the tech shop. They’ve got one of these old wheels sitting on their shelf. I saw it last time we went past there. It’s not perfect, but it’s better than this one and it will do until we go back to Sydney.

“Don’t shout,” Jackie said. “It upsets Clay.”

“Nothing upsets Clay,” Tim replied, and stalked out to stand in the yard.

Clay’s mind-voice said, Yes it does Dad! I hate it when you and Mum argue. That makes me upset. It makes me upset that you never listen to her when she’s sad and that you are just so angry all the time. Clay couldn’t understand the point of anger. It rubbed away the goodness in everything, yet people seemed to relish the way it took control of them and made them say and do hateful things.

The chooks arrived later that afternoon.  Tim’s mate, Robbo brought them around in a big cardboard box. He let them loose in the pen and they immediately set about pecking and scratching their new surroundings. Clay watched from his chair and in his mind’s eye he was holding a chook and stroking its shiny black feathers. The chook turned to look into his face and said, “Hi Clay. How’s things? We’ve been looking forward to meeting you.” Clay’s mind’s eye saw himself drop the chook and take a step back. “Don’t be scared Clay,” said the brown chook. “We’re your friends.”

“Yeah Clay,” said the white one. “Everyone knows about you.” Clay was all at once excited and alarmed. He’d never heard another mind-voice inside his head before.

“What do you mean, everyone knows about me?” Clay asked.

“The trees, the birds, the soil, the flowers. All of it. It all knows about you,” said Whitey. Clay wasn’t sure what the chook meant. “How can you talk to me like this? Animals can’t talk to humans. I’m stuck in a chair, but I’m not stupid.”

“We know you’re not stupid, Clay. That’s why we’re here. Chooks have a different way of seeing the world. You’re more than that chair, Clay. Everything is more than it seems because everything can talk to each other, it’s just that humans don’t want to hear the voices anymore. They’re no longer interested in the voice of the earth. They don’t have time for it and they think it isn’t important, but they’re wrong. They’ve forgotten what truth is,” said Browny.

“Truth?” Clay asked. “What do you mean?”  

“You know what truth is, Clay. You know in a way that isn’t obvious to others.” said Blacky.

“Do you mean the way my heart feels when I hear my mum sing?”

 “Yes, it’s that and a lot of other things. It’s about how you understand what is important when other people left the idea of that behind many years ago. They leave it in their childhood. They set it aside with the things that made them happy because they tell themselves that it’s time to grow up, to move on and to leave the past behind. They forget about the things that matter, but those things never leave them, not really. What matters stays there, deep inside them, nestled out of reach, existing as ghosts that are impossible to glimpse. The idea that something isn’t quite as it should be wafts and wains in the depths of their subconscious, but because they lost their truths, they are bound to a life of emptiness and longing where they never get to turn their corner,” Blacky explained.

“I know what you mean,” Clay sighed. He’d seen the emptiness in the faces of people that his mum pushed him past on the footpath; he’d heard it in other’s voices and smelled it in the air. His mind’s eye saw himself rolling down a street filled with people who all looked the same. They rushed along the footpath, all of them together, yet all of them apart, apart from each other and apart from everything else. He stretched his hand out to grasp the sleeve of a passer-by, but she wrenched it free and kept walking.  Clay knew it wasn’t meant to be this way. He knew it because none of them smiled. Sadness wormed into his heart, but when he looked up and saw his new friends his melancholy was at once forgotten.

“Beer o’clock, eh Robbo?” Tim asked.

“Oh sorry, mate, not today. Gotta get going. Gotta pick the boys up from soccer and take Katie to ballet after that. It’s never bloody ending I tell ya!” Robbo smiled good naturedly.” Seeya later Tacker,” he said to Clay.

Bye Robbo. Thanks so much for the best chooks in the world, Clay’s mind-voice said and his mind’s eye saw himself smiling and shaking Robbo’s hand.

Tim went inside to get himself a beer. Jackie was standing in the kitchen where she had a good view of Clay at the chook pen. “Sorry about before, love.” Tim said. “I just get so bloody annoyed. You know, everything’s an effort. It feels like all we ever do is chase our tails.”

“I know,” Jackie responded. 

“I have no idea where we’re meant to get the money to pay the rego on the car and then there’s the appointment in Sydney next month,” Tim said, “ Sometimes I wish we were just a normal family.”

 “Don’t say that!” Jackie said. “We are a normal family. Clay will hear you, he’s just out there. It’s not his fault we’re like this,” she hissed.

“I know it’s not his fault, and Jackie, I wish you’d stop going on about how Clay can hear or how Clay feels. Clay isn’t there, not the way the rest of us are. You know that. There’s no point going on about some fantasy land where Clay can hear, see or feel. It’s all bullshit. We need to start living in the real world. The world where we need to man up and get on with things,” Tim said, his apologetic tone evaporating.

Jackie burst into tears. “Why are you like this?” She yelled. “Why don’t you care?”

 “I do care!” Tim yelled back at her.

“It doesn’t feel like it, Tim. You don’t care about me, you never ask how I am, you barely even acknowledge Clay. All you care about is getting pissed with your stupid mates.  I’m sick of it. Things are hard for me too, Tim. I know you think Clay can’t hear you, but a kind word towards your own son wouldn’t go astray occasionally. At the very least it would make me feel better. Don’t you care about that?” She cried at him, leaning forward and punching her fists into her thighs in frustration.

 “Stop it Jackie!” Tim yelled at her and grabbed her arms.

 “Leave me alone Tim.” She spat. Twisting out of his grip she ran into the bathroom and slammed the door.

Clay and the chooks looked at each other. I hate that. I hate it, Clay’s mind-voice said and his mind’s eye saw himself writing a note to his parents telling them that if they could just find their truth, everything would be as it should be.

“We can help them, Clay,” said Whitey.

“How? Clay asked. “They seem so hopeless, afraid and just so very sad,” he added.

“There’s a way for you to come with us,” said Browny.

“We can show you how to be free. You can be free of that chair and you can free your parents from the longing. We can let them turn their corner,” said Blacky.

“We came to bring you home, Clay,” Browny said. By virtue of evolution their gazes were piercing and unemotional, but the tones in which they spoke belied their appearance.

“What do you mean? I am home.  This is my home,” Clay said.

“Do you really think this is where you belong, Clay? Stuck in this useless body? Never able to achieve a single thing? We know you can read, but do you ever get to do that? Remember War and Peace, Clay?” asked Blacky.  

Clay did remember War and Peace. He remembered it too well.  His mind’s eye saw himself squirm at the memory of the book sitting open on the floor by the kitchen table. It sat there everyday for a week and as Jackie ate her breakfast Clay read and reread the same two pages over and over again until he knew them off by heart . He was devastated when his mother eventually took the book up off the floor and threw it into the bin. He couldn’t imagine how she could throw Natasha and Princess Marya away like that. No Mum! I need that book! His mind-voice shouted, but of course she didn’t hear him and went about cleaning up the rest of the kitchen. The day the garbage truck came was the worst one of his life. He could almost feel the crush of the universe on his soul as the truck heaved to compress its load. He hadn’t stopped thinking about War and Peace for two years after that. It almost ate him alive.

“I don’t really like what you’re saying and I don’t really think that going away with you somewhere will change anything. Have you considered that maybe I don’t want to leave this chair, that I’m happy the way I am? This is all I’ve ever known and I don’t want to be cured. Sure, things are hard for my family, but from what I can tell, things are hard for nearly all families. It’s not my fault they’re like this,” Clay said.

 “Have you ever thought about what it might feel like to be everywhere at once?” asked Browny.without acknowledging what Clay had just said.

“Chooks have that power, Clay. We can set you free. You can be with all of us and you can be all of us.  You can be the beetle, the soil he digs in and the grass in the cracks. You can be the voice in your mother’s heart when she sings of compassion. You can make things better, better than they are.” Blacky said.

Clay’s mind’s eye saw himself closing his eyes. He sat that way for a long time, breathing slowly, imagining the breath coming in and going out of each part of his body. His legs could breathe, then his arms, then the top of his head. He saw the three chooks jump onto his lap and he saw himself stroke each one in turn and as he did so each chook nestled down onto his lap. Clay felt the warmth of the chooks bodies pressed into his and he felt his own warmth merging with theirs. He became aware of different sounds and smells and could hear a faint whisper of voices in the distance. He saw his body dissolve and become like a breeze that is part of all things  simultaneously. Stretching across unfathomable distances he was able to see through all of time and he could see that the truths that govern existence had been unchanging since the beginning.

“This is beautiful, and I know you’re trying to help me, but I don’t want to leave. I like my life. I know I’m more than this chair. You say I can change things, and I do. I do it already, just by being who I am. Things were different in the past. People like me weren’t taken seriously. We were ignored, but things are different now, or at least they’re better and getting better all the time. Mum doesn’t know I’m in here, but one day she might. I’ll wait until then, so please take me back, take me back!”

All at once he was back, but not in his chair and he let the sensation of being so close to the earth fill him completely while his head lolled, as always to the left. Chooks scratched and pecked around Clay’s legs. Minute clouds of dust wafted around each bird as its longing to uncover tasty soil-borne morsels intensified. With the timber of the chook pen at his back and soil rising up to meet his fingertips,Clay could smell rain on the breeze, even though there wasn’t a hint of cloud in the sky.

Jackie emerged from the bathroom. “Tim, where’s Clay?” she asked with a hint of panic in her voice.

“What?” Tim responded, immediately jumping up to face the chook pen where he’d left Clay only ten minutes earlier. They both rushed outside to find Clay sitting in the chook pen with the chooks scratching and pecking around him.

“Honey! How did you get in here?” his mum cried.

One by one the chooks jumped into Clay’s lap and nestled down.

“What the…?” Tim said in a ridiculous whisper.

“Are you ok?” Jackie asked, and Clay’s head lolled.

“We’re always here if you change your mind, Clay,” the chooks said in unison.

“Thanks, but I’ll wait it out here if that’s OK. If you scratch over there in the left of the pen, there’s some big grubs just under the surface. I can hear them chewing on the roots of the grass.”


Thought I might change it up for a bit and post some stories for a while.See, this will stop me from whinging about stuff that’s been going on: some stupid stuff perpetrated by some pretty darn stupid (and downright horrible) people. There’s no point whinging about this kind of crap because I’ve got no control over how stupid other people are. There’s a quote the cool guy I’m married to told me. I’m not sure who said it originally, but this is how it goes:

“Don’t argue with stupid people. They’ll bring you down to their level and beat you everytime with experience”

I posted my first story under the story tab, but will post most of them here, on the main part of the site. They’ll be of different genres and themes. Some will have pictures, some won’t. I do like drawing the stupid pictures that I put with my posts, although now that Picasa has mysteriously vanished from my computer (probably gobbled up in the final update for my antiquated version of Windows), it’s not quite as fun (or easy).

I’ve written a few books. None of which are published. Hopefully this year I can get some interest in a hiking memoir I wrote about a long hike I did in 2016. This will be challenging because as a rule, non-fiction in Australia is only accepted for publication if you are or have been a journalist, are famous, connected in someway to a famous person or have attained extensive sponsorship for your endeavours. I’ve read most of the hiking memoirs out there: Wild by Cheryl Strayed, Walking to Listen by Andrew Forsthoefel, Tracks by Robin Davidson, A Walk in the Woods by Bill Bryson, Wild by Nature by Sarah Marquis to name a few and also a buttload of other books about being adventurous. I’m really hoping that after I read From Snow to Ash by Anthony Sharwood that I will have covered enough ground to make my case for the publication of my own memoir. Plus, I’m really hoping I can enlist the help of Anthony Sharwood to maybe make a brief recommendation to a publisher on my behalf. I don’t know, it can’t hurt to ask! If he says no, I’m in the exact same position I’m in now.

If all else fails I can self-publish of course, but this isn’t easy. It would be good to get someone to give me a hand, but I’m pretty sure that I’ll just have to bumble my way through as I do with pretty much everything else. An online dictionary defines “bumble” as “to move or act in an awkward or confused manner.” This is exactly what I mean when I say I will have to bumble my way through. I can see myself tripping over details, turning back to fix something only to find that it can’t be fixed, getting pissed off, crying, not knowing how to upload a document, asking endless questions to an empty room about the imprint page (“Help me! Where does the ISBN go?”), and finally laying down on the floor, kicking and screaming commanded by a tantrum (specifically the dude who tried to photocopy the monitor in the link – that would be me after fighting with Amazon!) the likes of which should have been left behind in the childhood years of 2 – 5.

Anyway, my book is called:

One Foot After the Other

Me on one of the Great Walks on the Sunshine Coast

Did I Suck Enough?

In the beginning of 2020 I started a project where I planned to learn a heap of new shit. It started out ok, but ended up getting a bit derailed, so basically, I still suck at most things on the list of shit I wanted to learn. That’s ok cos even though I didn’t learn all the stuff I wanted to learn, it doesn’t mean I have to close the door on that forever. Besides, I got to learn new stuff, it just wasn’t stuff I saw coming and a lot of it wasn’t easy, and not in the way that requires you to push yourself when you are learning a brand new skill, but in a way that calls into question stuff that you’ve been taking as a “given” all your life. This kind of lesson always sucks because it feels like subtraction rather than addition.

Becoming a better person isn’t always about addition. It’s about growing and sometimes that means growing away from ideas about yourself, about the world, and about relationships. Sometimes personal growth means that you lose. I lost some relationships this year, and the way I view community and friendship has changed forever. This is because I grew away from an idea I had about myself; the idea that I was a good person in the eyes of my friends and the eyes of the community. I was wrong about that and it took me by surprise because I thought that being community-minded, warm, friendly, caring, generous, dependable, considerate, genuine and a good listener were valuable traits. They’re not. This year I learnt that none of that matters. This year I learnt that in general, people who are meant to care about you say one thing to your face and do the opposite behind your back. When the chips are down, they’ll do everything they can to take you down with them, and then act like you never mattered to them anyway.

What a sad, stupid life.

So, I guess this year I did suck quite a lot, especially in the eyes of people I thought cared about me, but that’s ok because I did a lot of awesome shit and none of that matters when it comes to what other people think. Stuff like reading 15 non-fiction books, 17 fiction books, riding the fat bike hundreds of kilometres, seeing Alice Cooper in concert, riding my horses, mapping out hikes in Burrum Coast National Park, Completing a Graduate Certificate in Disability Practice (I wrote over 200 000 words in assignments, which is equivalent to around two books), buying my own boat, making YouTube movies and just generally being authentic, not full of shit.

Thank god I’m self reliant and don’t need other people around me to live an amazing life. Being extroverted and alone is challenging, but I can manage it by being extreme in my pursuit of physical, self mastery, and intellectual challenges. Maybe life is about serving the lesser good (the self), rather than the greater good (humanity) because in the end, if you don’t put yourself first, how can you ever hope to serve anything or anyone? But, who can tell? I don’t think anyone really “gets it” because if they did, then they wouldn’t act like total pricks towards others who don’t deserve it; others who actually might need a helping hand, not scornful judgement.

Are you who you seem, or are you full of shit too?

The Invisible Disability

I tell people I’m cured, but it’s not true, not really. Perhaps in the sense that there is no more active cancer forcing its way into the valuable real estate inside my skull, it’s true. It was the vacuum that the cancer; the brain tumour; the aggressive growth with an intention to murder me left once it had been cut away by the surgeon’s knife, burnt away by the radiation and poisoned away by the chemotherapy, it was this vacuum that left me with something that can never be cured.

An acquired brain injury (ABI) or traumatic brain injury (TBI) as it is also known is something that happens after birth. It is an injury that can come in many forms. For example, a degenerative neurological condition, a head injury arising from a motorbike accident, sporting injury, assault,  a stroke, lack of oxygen or blood supply to the brain, substance abuse and addictions, brain cancer, radiation, chemotherapy and brain swelling. Acquired brain injury arising from domestic violence situations is the leading cause of disability and death in infants and children subject to violent home and family environments. Most people in Australia would be familiar with shaken baby syndrome; a condition inflicted on an infant by violently shaking a child, causing the head to whip violently, resulting in damage to the brain and neck.  Particular segments of society are subject to significantly higher rates of brain injury in adults.  In these segments, it is women who are at much greater risk of brain injury when compared to broader society and the risk that men in broader society are subject to. 

“You go home and sort out your things,” the radiation oncologist said to me as she patted my hand. She wanted me to prepare for imminent death, and as I stood next to the huge window that showed people going about their everyday business down below I wondered what had happened to my life because I used to be like those people down below; someone with a future. I couldn’t grasp how this cancerous monster could snake its tendrils out of the abyss in an urgent need to acquire all of me; my past and also my future.  “No!” I wanted to shout at her as she wafted away from me, through the waiting room and into the guts of the hospital, instead I kept quiet and told myself that none of it was real.

In a population of 24.6 million people, it’s estimated that around 700 000 of us are living with TBI. This condition is more common than most people realise, which is one of the reasons why it has come to be known as the invisible disability and the hidden disability. It’s also known for this because it’s often not obvious that a brain injured person even has a disability. “You look fine,” is a common remark because many people with TBI look and sound like people who don’t have TBI, but these people are dealing with complex problems that in some instances have almost destroyed their lives. These struggles remain hidden because even if they were aired it is impossible for people who have no experience with TBI to understand what it means to have lost almost everything and not be able to find a path back to a life that no longer exists. Looking fine is one thing, but being fine is another issue entirely.

At home, after the hospital, I couldn’t work out what was wrong with me. “I don’t know what I’m doing,” I’d say to whoever was listening. “Why did I come into this room?” I’d ask with growing frustration. After I moved house I couldn’t remember leaving the old one and couldn’t make out how much time had passed since I’d left the last place I’d lived in or how much time I had to get ready before going somewhere or how long certain things took. At the shopping centre I’d stand at the top of the escalator alarmed to find myself in a place full of light, sound, people and smells and not know why I was there or how I’d even arrived there to begin with. I got lost when out walking, I couldn’t recognise people and I kept forgetting almost everything that happened. Endlessly tired, I felt as though I just couldn’t cope, but I was unable to articulate what it was that I couldn’t cope with. I became depressed, began drinking too much and when my best friend and her family turned their backs on me I became suicidal.  I didn’t know I had a brain injury because no one had thought to tell someone who was meant to be dead in three months that they now had to live with TBI.

Brain injury is difficult to treat because there is no way to predict how an individual might respond to treatment. The issues that arise following TBI are complex and significant resulting in long term impacts to the lives of the brain injured person, their family and often broader groups at the societal level. “My husband told me he didn’t want to be married anymore,” said a brain injured mother in her early thirties. Her husband had left her when he found out that she needed brain surgery. “My son is fifty-five. He can’t live by himself because he can’t make decisions. I really wish he wouldn’t ride his bike around town, but it’s his only outlet and realistically, I can’t stop him from doing it.” He had been brain injured in a terrible car accident in his twenties. “I hate it when people finish sentences for me,” said a man who was dealing with the effects of a stroke. It took him the best part of five minutes to get these words out. “I wish things could just go back to how they were before. People think I’m lazy now, but I’m just so tired all the time,” said another stroke survivor.

Fatigue crushed in on me from all angles. “How will I ever get through this day?” I wondered aloud everytime the sun came up. It wasn’t just fatigue weighing on me, but despair and grief for all that I’d lost and all that I knew I’d never be. It was the guilt I felt at having survived when others weren’t so lucky and it was my heart broken at having been discarded by those I always believed had loved me unconditionally. Ultimately, I felt as though nothing I ever did was good enough and that there must be something inherently wrong with me. I couldn’t stand my own reflection in the mirror because my identity had been wiped out, all that mattered had been cast aside and I no longer knew who I was or what any of it meant.

Personality changes, behavioural problems, emotional lability and cognitive impairment are major issues for those dealing with TBI.  There are general clinical tools for treating these types of problems, but none necessarily specific to TBI.  Research on the topic can be contradictory to personal experience because there is no definitive description for how someone’s behaviour, emotion, or personality might be affected following TBI.  For example, some research downplays the prevalence of post-traumatic stress disorder (PTSD) following a TBI, especially if the TBI occurred in a medical setting, while opposing research and personal accounts evidence otherwise. This serves to demonstrate how complex it is for healthcare professionals and policy makers to make decisions that will deliver the best outcomes for the most people and to tailor treatment to individual needs.

“You could have contacted disability services and asked for special consideration,” the clinical psychologist conducting a neuro-psychological assessment on me told me right before I was about to do my final exam for university. After struggling for so long and living with TBI for five years I’d finally worked out what was wrong with me.  At uni I’d found a DVD about brain injuries in the library.  Someone had shoved it in the space that was meant for a book I wanted for an assignment about ecosystems.  As I watched the DVD the shadow began to lift from my soul. The band around my heart loosened and the rock in the base of my abdomen began to break away. “This is what’s wrong with me,” I whispered to the empty lounge room, awestruck.  I felt immensely relieved, and it wasn’t until later that I started to feel angry about the way I’d been treated and ignored by the health care professionals involved in my hospital experience, and by those who were meant to care about me.  Being overlooked by the health care professionals is not acceptable, but being discarded by those who were meant to care about me is nothing short of repugnant. How do they live with themselves, I’m often brought to wonder. And they wouldn’t be the last ones to treat me in this manner, which likely demonstrates a broader attitude to disability within Australian society.

Often people with disabilities are excluded from participating fully by indirect discrimination. For example, the local theatre provides several disabled parking spaces, but the time limit is two hours. The council has long term parking, but the distance from the town centre precludes use by those with mobility problems. This means that having a problem with mobility makes it hard to access the theatre for cultural events, which often extend beyond a two hour timeframe. Certainly these issues can be planned for in advance and innovations applied to address any problems encountered in this situation, but this assumes a certain level of problem solving ability and a certain level of peer or personal support. This is not always available to all people. “Sometimes it’s easier just to stay at home,” said a lady in her forties after surviving a stroke, and I wondered how she was perceived now, bereft of nuance;  her face permanently set in the same emotionless expression and her voice delivery the same toneless quality; all due to stroke.  

I wanted to give up drinking because it was beyond my ability to control. I tried so hard to cut back, but always ended up drinking more and the more I drank, the worse I felt about how disrespectful it was to be living like that. I wanted to do more with the second chance I’d been given, but I didn’t know how to do that because I felt so unworthy of everything. I didn’t know how to live through the emotional turmoil that my life had become since my brain injury and I was using alcohol as a way to cope. I wanted so much to be “normal” and after I graduated from uni I kept trying to get a job, but was rejected over and over again, each time, my heart breaking anew.  Even though I’d worked out that I wasn’t crazy, just brain injured, I was depressed and remained suicidal for a long time. I fought with my husband, who had stood by me since the first day I’d  become ill. I fought with his parents, who he relied on for support, I fought with my mum about the way I felt about myself, and I fought with the world because I felt like I didn’t belong. I never stopped fighting with myself, but finally I won the fight against alcoholism and gave up drinking. I just stopped and never had another drink again. This wasn’t easy to do in a society where alcohol is so important to our way of life. It’s still not easy and it’s been many years since I’ve had a drink, but I’m so very glad I did it.

It’s estimated that up to eighty percent of people with TBI acquired their brain injuries while under the influence of alcohol or drugs. This includes secondary damage such as injuries resulting from impaired decision-making while under the influence or from direct damage due to overconsumption and the toxic results of this on the brain.  Having TBI increases the risk of having another TBI and this is compounded by the consumption of alcohol due to the brain’s increased sensitivity to alcohol following injury and the impairment of cognitive abilities necessary to make competent decisions and effective choices. Some research suggests that there is no safe level of alcohol consumption following TBI.  This is difficult to accept in a society where the consumption of alcohol is widespread, acceptable and often expected, particularly in social settings and celebratory gatherings.

I started to accept that I’d lost almost everything that was once important to me and as it shifted aside, newness began to make its way in. Accepting the way things were and the questionable things that people had done to me didn’t mean that I forgot any of it or forgave any of it, it meant that I was able to move forward. I was still confused a lot of the time, but then, isn’t that just life? It’s hard to know what happens because I’m human and what happens because I’m brain injured, and if it’s even worthwhile figuring out the difference. I got a job; one that I loved; one that I was good at. “I can’t believe I finally did it!” I shouted at my husband after the call came to tell me they wanted me for the position. Mum sent me a card and I got lots of congratulatory messages from everyone who knew how hard I’d worked. “You’re going to be really good at this job,” one of the messages said. It was all so exciting. I didn’t reveal that I had a brain injury because I knew that being brain injured would not impact on my ability to do the job, and it didn’t. It didn’t impact on anything until I unwittingly told someone I had TBI. Not long after that I had to leave. I couldn’t cope with being treated like I was stupid, yelled at for being “dangerous”, picked on and accused of selfishness. It’s funny how I was none of these things before they knew I was brain injured. I’d been brain injured for fourteen years before I got this job, but to them it appeared that it had only just happened and all of a sudden I was a different person. “I don’t want to work here anymore,” I said to the lady in the office. I got in my car and drove home. No one called to ask if I was ok or why I left. I was sad, but mostly I just felt really, really sorry for them. It made me realise how shallow life must be for people like this; people who have no compassion and understanding of what it’s like to live not just with TBI, but with any kind of challenging circumstance that is beyond their own personal experience. It fell on me how difficult life must be for those of us who have no agency; people who aren’t like me and have no voice; all of us who can’t be cured.

Note: I have used published information to write parts of this post that relate to statistics, clinical and social perspectives, but I have paraphrased everything and nothing has been copied and pasted. This article was intended as a speech to be presented at the National Brain Injury Conference and as a result I did not include citations.