Stories

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.

Beliefs Goodbye

The other day I got to thinking about what it must be like to hold onto beliefs. I’d never considered this before because I’m constantly revisiting my beliefs to work out if they still apply to my life given the information at hand. When I imagined what it must be like to have beliefs that stop you from living an awesome life I saw a mind walled off by bricks. It made me want to shout, “NOOOOOO!”

Stuff changes ALL the time and it’s really not worth holding onto ideas that no longer work for you. That’s actually a great recipe for unhappiness. Petula is a character I created to demonstrate what it must be like to live with beliefs that have never been challenged. Petula is certain that she’s right ALL the time, even though the evidence often contradicts what she believes. Gees, she must get tired from constantly having to defend her beliefs. This is what she looks like when something comes up that she doesn’t agree with: 

When something goes wrong in Petula’s life she can’t accept that it might be because she’s applying a narrative fallacy, in which she is imagining a logical link where one doesn’t exist. And, she’s doing this because she has false beliefs about the world. Instead, if she looked at what she believed and saw that it wasn’t actually true (based on the information at hand), she could deal with it differently and wouldn’t have to blame her shit on other people:

Here’s some beliefs that I once had, but have changed because I grew as a person.

Hard work trumps everything – I always believed that if I worked really hard at something I’d get there in the end. This isn’t actually true 100% of the time because there are other factors at play that are out of my control. These factors can influence my success. Being in the right place at the right time can often make all the difference and this has nothing to do with how hard a person works. Getting rid of this belief allowed me to stop berating myself for not trying hard enough or telling myself that there was something wrong with me. Sure, I still do everything to the best of my ability, but if I can’t achieve a goal I rework the goal instead of blaming everything on myself, which only results in apathy in the end, and apathy never motivated anyone to do anything.

Everything happens for a reason – I held onto this one for a long time. It was a story I told myself about the way the world works so that I could understand the randomness of existence. The fact is, existence is largely random and there really is no reason behind much of what happens. What we do with the outcomes of situations is what defines the ultimate reason for an event. Getting rid of this belief relieved me of the burden of searching endlessly for meaning.

Stuff in the media is true – I guess I got this from my dad and I also banished this belief because of him. When he died the newspaper wrote a story about him which wasn’t true at all. This was a big shock to me because I’d never once stopped to think that newspapers make shit up. Getting rid of this belief really ignited my critical awareness. It changed the relationship I have with television, radio and the internet. Nowadays I don’t watch TV and don’t listen to any news stories at all. What’s the point of consuming news? It’s only ever negative and now I know that much of it probably isn’t even true. 

I can’t run – I believed this for forty years! The fact is, I can actually run and have been doing just that since 2016. It was hard at first, and sometimes it’s still hard, but mostly I love it. Getting rid of this belief opened the door to feeling like I totally own my life; my health, my appearance and my attitude. I’m fitter now than I have ever been and I also look better now than I did when I was 22. 

I don’t want to be like Petula. I don’t want to blame my problems on other people. I don’t want to do this:

Saying goodbye to some beliefs is hard. I think I struggled most with the belief that friendships are meant to last forever. That was something that I’d been indoctrinated with since early childhood. Even close friends (like besties) come and go and I’ve learned that just because you’ve been best mates with someone for more than twenty years, doesn’t mean they won’t run a country mile when the chips are down. But, this is a perfect example of how to apply new evidence to a belief and call it into question.

Don’t be like our friend Petula:

Don’t shoot yourself in the foot for the sake of your beliefs

Who are you: 07 41268909

Does anyone know who owns this number? I’d like to find out. I’ve been calling them all morning, but surprise, surprise, they won’t answer. I wonder why?

Maybe it’s because they rang the cool guy I’m married to and left a message on his voice mail that said, “There’s a rumour going around that while you’re away, Jen will play. Watch your back.”

I don’t think they mean the kind of playing that I’m known for, such as walking 25km in under five hours or decreasing my running time over 5km by more than ten minutes. I don’t think they mean how I love live music, vintage clothing or learning new shit. I think they are basic arseholes trying to make my life difficult because for some reason, they don’t like me.

Are they jealous because my husband and I have been married for fifteen years? Are they threatened because I look totally fucking amazing and have a better physique now that I’m in my forties than I ever did, even when I was 22 years old? Are they scared of how smart and articulate I am even though about one third of my brain is missing?

People like these fuckers at 07 41268909 are the scourge of the earth. They’re your basic spineless morons. If they’ve got a problem with me, why don’t they show up here and let me know? You know why, because they’ve got tiny little pea hearts and tiny little pea brains, not to mention that they have no nuts and no spine.

You know, I’d get it if I was an arsehole too, I really would. Sometimes I lose my shit, just like everyone does now and then, but I’m not out there trying to intentionally hurt people by making up stories about others, breaking other peoples’ stuff, stealing stuff, hurting children and animals. I mean, I did actually get nominated for Australian of the Year in 2018. Not that this would mean anything to these particular losers and others like them.

These people exemplify what it means to be a bad person. Only bad people do shit like this. Even if I was having it off with a bunch of dudes, how is a message like the one they left at all helpful? They’ve done it because they have a bunch of anti-values and black hearts…

Anti-Values are values that have a predictably bad outcome. These include dominance, revenge, sadism, ideology, hardness, and exclusivity. Presumably in our primordial past, these anti-values ensured some measure of security and flourishing, but they no longer have a beneficial role in our modern communities.”

Furthermore, how old are they for crying out loud? This is pure high school bullshit. You know, the kind of shit you left behind when you were like 15 or 16 years old. Their emotional intelligence must equal zero. Not much can be said for their level of intellect either, considering they were dumb enough to make the call on their own number.

So, my family and I have been calling it all morning and the dickheads have even answered a couple of times, but when we ask who they are, they predictably hang up.  I’ve gotten a few friends onto it as well and there’s no doubt in my mind that I’ll find out who it is. Once I do, I’m going straight to the cops because I’m not putting up with this kind of shit, especially when I haven’t done anything wrong and the way I live my life is none of anyone elses’ business anyway.

Let me know if you know who this number belongs to:

07 4128909