Full Backstory

“You never fail until you stop trying”

Albert Einstein

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Story of Mark

Ratbag - 2003

European Vacation

The Demise

After an enjoyable childhood in the Melbourne suburbs, one that was mostly spent on the basketball court or going camping with my family, yeah, life was all pretty cool and normal. I then had an experimental few teenage years, discovering weed and running amuck, then had aspirations of becoming an advertising copywriter; only it was a wanderlust trip to Europe that would change my world forever. While there, apart from having a blast, I also caught what felt like a common cold and I treated it as such. However, unknowingly, a random neurological event had just taken place.

Upon returning home, within a matter of months life’s natural progressions began fading away. Instead of completing my studies and diving into a career, well, inexplicably, my body started to incrementally fall apart. Losing movement, slurring my words, struggling to interact socially; I even had to quit my job. But worst of all, my pub life was over, no more dominating the pool tables. Shattered.

This bizarre disease process had well and truly taken hold of my body. My whole life was falling apart. Forget desires such as marriage and family, I was just trying to survive.

For someone who likes order, harmony, method and balance; oh man I was free falling. Here I was hospital hopping and doctor shopping, facing a barrage of tests, being treated like a science experiment; it was a scary new world.

2003-2004

The Sickcare Life

I explored cure A, therapy B; all the way to miracle Zee, and despite all of my efforts I failed to get any sort of conclusive diagnosis. Still, there was mention of numerous sinister illnesses (with the main catalyst being Motor Neurone Disease); it was a hard reality to face that as a twenty three-year-old I was dying.

But I kept on keeping on. I had to. In-patient physiotherapy was next, more tests and chaos, plus another unfruitful hospital stay. It was becoming quite clear that the conventional medical system wasn't working out for me.

With no concrete diagnosis though, my search for answers kept escalating, and as such the next step was to start exploring an abundance of alternative therapies. From naturopaths, Chinese herbalists, even experimenting with hyperbaric medicine (just to name a few). I felt like I tried it all. Only my stubborn body had a mind of its own. I continued to deteriorate rapidly. Both my arms had stopped working by now and my legs were getting weaker by the day, it was freaking insane.

Then, my girlfriend, my European backpacking buddy and biggest support of all, she broke up with me as well.

The only thing I really had to fall back on was my parents and my family home. They were so amazing, I actually feel heaps of gratitude for how much they stepped-up. Mum even became my primary caregiver, yeah, embarrassingly, I was now needing help with the simplest of daily tasks, for example eating.

2005-2006

Cairns

In desperation, my family and I moved to Cairns, partly because most of our medical and experimental avenues had been exhausted in Melbourne, plus, I always found the hot weather to be beneficial for my health. I wouldn't lose movement quite so fast. Oh the things we do for health. Still, far out, it was just so super lucky that my parents had just retired (and were up for an adventure) because this created a massive mental upswing.

We actually drove up there, mainly because we didn't know how I'd tolerate flying (like I had these crazy intense migraines flying back from Europe) and that we'd need the car to get around up there, but bloody hell driving 3,500 kilometers in ten days was quite the mega mission. And, on the way, I ticked off seeing heaps of the big things roadside attractions too; awesome.

Anyway, yeah, my crazy health routines and naturopathic regimes moved up north. Fresh juices, supplements, chiropractors, bowen therapy, acupuncture, physiotherapy and massage. It was all very involved. And, as a home-base, as a family, we rented an apartment right by the beach and set-up this pretty sweet life. Which, even though my health routines did take up most of our day, we did still manage to see heaps of the tourist attractions.

While up there, at one point, two fingers temporarily started to work again but nothing more. Then they stopped again; little buggers.

I don’t deny it, we had some fun times in Cairns (I even became best friends with my parents), we did have some crazy awful times as well, but what kinda ruined everything, the sad reality was that my decline continued. My arms didn't work at all any more, I could no longer roll over in bed at night, and I was now confined to a wheelchair. People would even stare at me when I was out in public, especially when my mum would have to feed me or give me a sip of water.

Then, the coughing began... and I suffered aspiration pneumonia. This was because I couldn’t swallow my food any longer.

Ambulance, hospital, struggling to breathe. Coughing and choking, sadly all with my mum watching helplessly. Then, one minute, all I remember was sitting on a bed with mum whacking my back, the next I just couldn't inhale, and despite fighting for breath, that I began falling forward. But I never felt the face-plant. Blackout, respiratory failure, geez it's so lucky this all happened with medical presence nearby. Yep, code blue. Unconscious for three days.

When I was a teenager I never dreamed that it would be possible to lose so much.

2005

Respiratory Failure

1st Tracheostomy

Now, what would you do if you woke up in the ICU with a tube down your throat... and you're paralysed? You're also unable to express yourself or communicate what you need? How would you feel? How scared would you be? Well, this was my predicament.

Even then this escalated as my treatments weren't working, so, not only was I in the ICU on life support, I then had a hole cut into the base of my neck so that a machine could literally pump air into my lungs. This was my first tracheostomy. What’s more, I was completely unable to talk, unable to eat or drink, and was told that I never would again.

This hospital stay was so traumatic, even confronting in many ways. New levels of vulnerability, new levels of exposure to medical dependence. The nursing team here was amazing though, they did try to help me adjust, actually it felt a bit like a big family. Sorta-ish. However, there always seems to be one dud. Most mornings, this big-mouthed neurologist would come past with a group of students and tell them all that I was dying, well within ear shot of course. Great for self-confidence.

2005-2006

Return to Melbourne

Mum Passed Away

After spending ten weeks in the Cairns ICU, kinda settling into a life of disaster management, a private medi-vac flight flew me back to a Melbourne hospital – tracheostomy included. Despite officially reaching rockstar status, oh man this flight was an ordeal. It was the pilot, two doctors and myself, who after a freakout incident ended up with an arm full of medazalam. I don't remember any of the flight after that.

Upon arriving “home,” it was straight to the hospital. From 1-1 care in ICU, I had now landed in a four bed cattle farm dorm style ward. Now, this is where I began to learn about the complexities of nurses; some can be totally self-interested bitches and power-players whereas others are total legends.

After several months of hard work on this specialist respiratory ward, I was finally able to breathe on my own again, well mostly. I'd weened off the invasive ventilation. As such, the tracheostomy tube was removed. This was conditional though, you see I did have to use a nasal mask part time now, mainly at night, but it was a darn sight easier to manage than the trachy. Also, I did have to have a feeding tube)inserted at this time too, so that one part from the Cairns verdict was true, I would never eat or drink orally again.

But hey, regardless of this removal of the trachy thing, I was still pretty much at rock bottom. I had a real fight ahead of me to gain any quality of life back. And, what was really starting to sink-in for me, I was now going to have to do it as a quadriplegic in a wheelchair.

Then, just as I was coming to terms with a few of my own dilemmas, I received the worst news ever. OMG… OMG… at this same time my mum tragically and unexpectedly passed away from a brain tumor. It was so aggressive that she died exactly three months after exhibiting her first symptoms. Because I was so sick at the time, in Cairns ICU, I was never told about her diagnosis; all I was told was that she was getting tests. This was all so messed up, I can’t even put this part into words.

2006-2007

Bowen Centre

Moving to VASS

With gritted teeth and a broken heart, I had to keep moving forward. Not really much other choice, and with still no diagnosis and being far too sick to live at home - I mean, the hospital didn’t want me anymore as it was deemed that they’d done as much as they could - so, I now found myself being thrown around amongst a few different care facilities. One of these was utterly brutal with these freaking nasty nurses; hard times.

What also stands out here, I was always at least thirty or forty years younger than any of my fellow residents. Talk about a fish out of water. Yeah, I was always wondering what other people my age were doing.

Actually, weird fact: while I was in this shithole of a care facility, one day a group of about seven of my old high school buds popped in to visit. It was kinda nice but still very confronting to see them all. Like I had absolutely no idea of how to contextualise what I'd just been through, or was still going through far that matter.

Do do da.. moving right along... after finally finding a different place to reside (well, I had to because the old dumpster fire of a joint was being shut down, deservedly so), so I moved into this brand new twenty bed mini nursing home thar was specialty built for people who used ventilators. Which, I'd never really thought of myself like this before this move, but yeah I could no longer survive without the using a breathing machine. An undeniable ball and chain.

2007

VASS

In an odd way, this new place opening and the old one closing, it was quite the blessing. In fact, it's like my new guardian angel, my mum, it's like she was looking out for me.

Anyway, this new joint, apart from the brand spankin' buildings and empty garden beds, the most notable shift was in the attitude of the staff. From tired old mostly grumpy nurses, I'd now moved on to a group of fresh faced disability support workers who were excited about their new roles. These were good people, most of whom you could easily call passionate disability advocates, and no kidding they'd all do just about anything to help us residents live life to the fullest and with vigor. The vibe around the place was quite incredible hey.

The excitement also came from this new facility being a residential based model, not a medical one. Something that had never really been done before on such scale for ventilator users (this even included people with tracheostomy's, some of whom who'd been living in hospitals for years). So, as an underlying theme of this residence in these early days, there were lots of questions swirling around if this living-format was even possible.

I tried not to think about any of this stuff though, my focus was mainly on settling into my new room and still trying to get better. I truly was convinced that I'd someday be a miracle.

There was one other focus too; socialising. Yeah, another thing that was quickly becoming apparent, most of these staff were pretty cool, plus most were around my same age. Similar interests, similar aspirations, yeah human nature took over and some of us became great friends. This helped a lot with my confidence issues.

You see, damn, being a new quadriplegic is freakin tough. Self-identity and the way people relate to you completely changes. But I wanted to overcome this hurdle, like I didn't even know myself. So, with the help of my new friends, we began to look for creative ways to get my life back. I started with things like concerts, then art classes painting with a brush in my mouth, and later, regaining some old friendship circles too. Trust me, it was not easy.

Living with a chronic illness is not only confronting and challenging for those going through it, it’s also difficult for all of those around them.

I want people to know that there is a vibrant human being beneath this daunting outer-shell, and it’s constantly trying to bust out.

2008-2009

Experimenting

It took some time to find my feet though, in fact, I just kept trying things to see what worked and what I was capable of. I’ll actually repeat that as I feel like this one line says so much, “I literally just kept trying things.”

Smoking cigarettes, asking girls out (with zero results), even organising themed parties and events at my new residence. One time I even won a mainstream t-shirt design competition – sporting the logo of fictitious character Bufferman that I created. Then I managed a meet and greet with the North Queensland Cowboys, my rugby team from when I was living in Cairns.

This was my first real taste of the opportunity in adversity.

2009-2013

Bucket List

Again, I just kept trying stuff, I kept growing, and as it turns out, I was prepared to do the hard yards. I took the initiative to think and re-think what I wanted out of life and how best to get it.

For a time what I became captivated by, I decided that a bucket list seemed like a pretty cool way to encompass all that I desired – also as a way to keep me focused and motivated – and with that, I started to do some rather crazy and extraordinary things. I surprised even myself with some.

The bucket list provided many great memories, some of these included: running a half marathon in my wheelchair, appearing on the television show Neighbour's, and even the unthinkable goal of kissing an A-list supermodel. Also, I partook in a private cooking class with a MasterChef host, entered the Around the Bay in a Day bike ride (on this wheelchair-cart bike thing – and nearly died), then gave away hundreds of free meat pies at an AFL football match. To this day, I still can’t believe I was a nude life-drawing model. Gross.

But the most notable, it was the Leap of Faith. This was my first tick. You see, I used this "bucket" to disclose the details and extent of my disability to friends and acquaintances. Like nobody knew about my health predicament, like I was mostly either in hospital or in Cairns, and oh I was terrorfied of the judgement. I was still so ashamed of what I'd become. Still, I did it. I sent about a hundred or so messages and emails briefly explaining my circumstance, plus that I was doing this bucket list thing, There was, well apart from the shock, such an out-pouring of support. So lovely. Such a relief.

The one (almost completed) tick I'm still most proud of though, without doubt it was Raising $10,000 for Starlight Children's Foundation. I got so close, darn it. I'm at roughly $8,000. Still, also as part of this endeavor, I feel so lucky to have had the opportunity to have visited the sick kids in hospital with the Starlight Captains. Total eye-opener, I loved seeing the great work that these guys do first hand. Ahh-mazing.

Oh hey, does anybody remember that trivia night fundraiser I held? That was sweet as.

Chasing dreams, chasing buckets, I absolutely loved doing this. Yeah, what I realised was that despite all the health stuff going on, obviously I didn’t have a job, mortgage or kids, so I could wholeheartedly focus on and invest my time into passions. One of the few advantages of my physical predicament, but a big one.

However, unfortunately, around this same time that my bucket list was going nuts, I also started to get really, really, really sick. I actually went on a few adventures that were so damn sketchy, they nearly killed me. In a way, my poor health, it ended the bucket list. It never rained with me, it poured

2012-2014

Lyme Disease

Despite feeling like my life had just began moving again (with the bucket list and what not), crash bang. At this same time, I was thrown another curveball in the way of a diagnosis. My blood tested positive to the controversial illness Lyme Disease – couldn’t have just broken a leg in Europe hey? Still, could this have been the culprit, all from a simple tick bite in Europe? Maybe, maybe not, maybe? I’m not convinced though.

Regardless, it was bittersweet. You see, Lyme treatment (especially in this era), well, it was not that straightforward nor was it easy to come by. In fact, it was a constant battle to find therapies. However, I did find a doctor who was willing to start treatment, this was (antibiotics administered via a central intravenous line, only this made me even sicker. Bedridden most of the time, no energy or drive, it wasn’t an easy period at all.

Even so, and quite possibly lacking the expert medical guidance that I required, all my efforts to kill off this stubborn bug failed. Or, I don't really know. Geez I wish they'd come up with some more reliable testing.

Bloody and yeah, cucumbers and marshmellows, that’s the way it goes. But I never stopped searching for my magic bullet. Even to this day, I'm still known to try some crazy and outright bizarre things from time to time, like I'm super intrigued by rife and frequency therapies. Anyway, well, longshots aside, life still went on in parallel. It kinda had to. Which, thankfully I always managed to dream up another project. It really is amazing what you can do when you put your mind to it, and what you can find.

Funnily, I've always found that the universe has supported me in this way, it always seems to serve up exactly what I need right when I'm ready for it.

2014

Life Coaching

Like, even in my antibiotic slumber, I started studying this life coaching thing. The hope and plan was that I would learn heaps about myself, to discover the truest depths of my psychology. To learn why I think, act and respond the way that I do, especially to stresses and adversities. This was my way of preparing for the future, plus I was genuinely curious to peel back the veil. To find some peace in knowledge, to even stimulate my soul. And, haha, it sure did get my ass out of bed.

On this coaching journey, there were so many memorable aspects and dimensions to it, but the thing I loved the most, especially in the beginning, it was the community at this school. It was such a safe space, full of like-minded people also on this quest of self-discovery, which was quite motivating too. So, in my new found home, I really began to cultivate some mental and emotional healing (which was much needed as I'd been going through some nightmare-ish stuff). Then, through the help of the syllabus, as well I was able to get really clear on things like my values and goals. I now knew the person who I wanted to become.

No kidding, this place changed my life. I'm so thankful for the opportunity, for the people I met here too, some truly amazing folks, and some of these have undoubtedly become life-long friends.

Still, I was starting to see the payoff of what was an all-encompassing mental an emotional healing journey. I began to find some long lost confidence and self-esteem, as well as a renewed passion for life. What helped, this was because the content was oh-so practical. I'd literally learn something then apply it to myself the very next day. I mean, by this point I’d explored Buddhism a – hm, a reasonable amount - so I was already aware of a spiritual life-strategy, but with all these different models, guidebooks, mentors, fancy fang-dangle questioning and hoo hah, it made practical application of “success strategies” so much easier.

The tools for me to flourish were freely available and I relished in them.

Then, as with most new students, I began to over-obsess over my own life, to assess it with a fine-toothed comb. Er, but geez this started becoming super hard, especially as I often found myself comparing my life to other people, and mostly because my searches often ended up with the same realisation – I was a train-wreck. I do still believe that this, the reality-checks and facing an absolute avalanche of demons, this was a very important part of my process.

Yeah, with me being in such a volatile life predicament, my self-development journey just continually escalated, haha to this brutal bullshit punch in the face kinda level. And proudly, I did find some sort of peace in it all, and I did this with the help and guidance of my very own coach, a blind lady, and quite possibly one of the loveliest people I’ve ever met in my life. Also, I then started on another pretty intense spiritual path too, this time studying A Course In Miracles.

Thankfully, very early on in my journey, another student summed things up perfectly for me. Hearing these words really helped me understand the process.

”You’ve chosen a path that most people are too scared to even find out about. You have chosen to not only learn about yourself and how you can connect with the full potential of the man you can become, but so much more than that. You’ve chosen to learn the tools and the skills that it takes to be able to pass it forward, to contribute, to really make a difference in the lives of others… and that matters.”

No, I was not born this way so I know exactly what I’ve lost.

2015-2016

Sicker

What was weird, on several occasions before their in-person workshops at this life coaching school, I remember having a special "hospital in the home" nurse come out to pump IV antibiotics into my PICC line. Such an odd way to prepare for class.

Nevertheless, while on this path of positive self-discovery, bloody typical, again my health became an even bigger burden. Treatment turned into turmoil. My breathing became an ever present danger as I now had to rock from side-to-side – to pump my diaphragm – to breathe when I wasn’t on the nasal mask ventilator, plus my reliance on breathing support and ventilation was increasing a lot. Like from initially only needing the ventilator overnight, I was now needing to use it at times throughout the day too. Sexy.

Even so, I stayed on my hunt for a cure, and I went the distance with my lengthy Lyme disease antibiotic treatment. But the miracle that we were hoping for, nothing happened. Disappointing. Or, another heartbreak really. So, as doctor’s were suggesting at the time, and as I was still super hung-up on this healing at all costs and to do whatever it takes thing, I began to do even more crazy and invasive treatments - so, so taxing. Then, as a result, I just got sicker and sicker and sicker. Around this time I actually thought I was going to die, I even had quite a few close calls.

Possibly for the first time, during this period, I was thankful to be living in the mini nursing home. I was needing the extra medical support, plus I did require staff to keep an extra close eye on me twenty four hours a day. My breathing, simply put, I'd reached a new level of vulnerability. Without adequate ventilation, especially when laying flat on my back, I could literally struggle to the point of stopping breathing within seconds.

Like danger, danger... and at this time, as I was now leaning on staff a lot more for survival, there were some extraordinary efforts made to keep me alive as well, Thanks so much guys, truly, you all know who you are. Much love. Only... not everyone gives a shit, and on several occasions a few careless staff errors nearly cost me my life. For instance, one night a hose popped off the ventilator in the middle of the night, and the staff member who was on was completely clueless as to what happened. I mean, it was so obvious you could hear the gushing air. Still, insert drama here, I passed out, then woke up some time later with the paramedics standing over me. Blimey. Not the first or only time either.

Oh another thing I should mention here, around this time, my housemates and fellow residents kept dropping like flies. Everyone kept dying. I was surrounded by so much death - which to be honest, living at this mini nursing home this was always a reality - the loungeroom before the sky as I've been known to put it - but this period was particularly bad. My housemate of nearly ten years died too, while I was listening to the commotion of it happening, bloody hell - was I next?

I was left wondering so many different things, in fact, I was left wondering if dealing with the repercussions of a spinal injury might be easier – as I started fighting for my life every single step of the way, and for pretty much every minute of every day.

Breathing problems are like next level, especially in terms of anxiety and vulnerabilities. Yeah, that old chestnut of you don't breathe you die right!?

Only, somehow, I still had dreams... and a little hope, so I savored that.

2015-2017

Writing Style

These not-so-fun times aside… well, simply put, I was now needing and craving for something to hang on to. Or, everything was so uncertain that I needed something with an element of stability. I found this in my writing, it was always so dependable. No matter how dark my day was, I had this tool to lean upon, in fact, it felt very much like the blank page had become a close friend. The ear who'd always listen.

So, as such, I just tried to write something every day, and every day this was a small win, an achievement even, and this outlet always helped me to feel that little bit better. Plus, whatever I wrote, no matter how mundane it was in my eyes, I always posted it on social media. Which, I'm sure this may sound silly but this was my only voice and way of being a part of the world; yeah, it's all I had.

It’s rather lucky that I had the technology to be able to do this, via a little sensor that I’d attached to a pair of glasses (which also didn’t have any lenses - weird), then this sensor connected to my computer enabling me to control the mouse through tiny head movements. So amazing, such a game-changer for somebody in my position.

But back to my writing style stuff… so, to start with I can't even remember what I was writing about, my main focus was output and creating. Only as time went on, I definitely noticed this content and style shift, or a pattern was forming, I was becoming much more open with sharing my disability experience and my feelings toward it. Before this change, I'd only ever really written about positive adventures and my bucket list, so I was becoming way more personal and even authentic you might say. Er, and sure it was a tad scary to start with, but what made it okay, and what was beneath this shift I suppose, honestly, I just wanted people to get to know me. My flaws, my fears, my innocence. I was so fed up with hiding.

Also, I thought that I could die, and possibly quite soon (like all my housemates), so I had absolutely nothing to lose. Well, maybe a little dignity? Meh. Still, what was happening in all my uncertainty, I kinda started to unknowingly document my journey in this rather bizarre way. I started to talk about this world that very few folks knew about let alone understood.

To accompany these writing developments, sorta concurrently, I found that heaps of people were benefitting from these new transparent style of ramblings. The comments and feedback I was receiving was amazing, and oh so encouraging. I guess it's a bit like, as the saying goes, “when you’re feeling hopeless, help someone.”

So, my writing and perspectives were quickly becoming a healing and learning tool for others too. Again, it was because of my understanding of and the insights that I had into this distant world. I mean, sure, I had learnt many things on my journey thus far that I thought could be beneficial to others, specifically to help others struggling, so this is some of what I was starting to expand upon (so, adversity theories in conjunction with telling my own story). And, with this, what was happening on my social media, this was proving that my voice was “credible” – hm, not sure if that is the right word.

Still, as a teacher of sorts, it was great for my self-worth (something that I was struggling with at the time, like because of my ill-health and level of physical dependence I felt like such a burden). So, finally, I started to get a taste that (in this “new” body) I could live up to my capabilities and personal expectations of becoming an effective human being – disability or not. So, paying it forward started to become my thing, or my next step if you will.

This “helping” quest took me down many paths, many worthwhile paths too. For instance, at this time, I began writing my first book which was later rejected by publishers, but geez I learnt a lot from this. I also started to participate in a few online support groups, more learning. Then I created a personally branded website, so, I suppose, this is when I first started to see myself and my life story as a "product." I hate to think of myself this way, so I have and do take steps to limit this.

Anyway, again back on topic… so, even as I had a blog and very distinct style of expression throughout my bucket list adventures, I'd now opened the floodgates on becoming this ventfest, say it how it is, scream it from the rooftops type writer. Which, oddly enough, very quickly I became comfortable with this station, and it was benefitting me heaps both mentally and emotionally as well. I'd even go as far as saying I'd found my life purpose. So, from this point forward, I almost exclusively stuck to writing in this heart-on-sleeve type manner.

I'd write about my life, my day, my feelings, all the complexities in my life (most of which were a direct consequence of my disability) and my thoughts; in fact, writing became pretty much my only way to help people understand what I was facing every day.

Writing gave me peace, meaning and a new way of working through my stuff. I even adopted this new creed of “writing for healing.” But what surprised me most about all this, it was what was spilling out upon the pages. Yer, through my quest for personal mental healing, I’d unintentionally become this deep thinker, who was somehow still bogan as. Weird combination. Still, people seemed to resonate with it. People were telling me that my “realness” was helping them.

What I love about this most, and with this shift in writing style, and with what was eventually to become my rather unique writer's voice, it's all been a very organic path of falling forward. I never tried to be anybody else, I simply fumbled my way through until I settled on what felt right for me. Also, one other thing that's been incredibly important to me here, like I said a few paragraphs ago, I really do hope that I've given enough of myself so that people have had the chance to get to know me. In all my boofhead glory, I do have quite a kind heart too.

I'm much more than just a disability.

2011-2014

Freedom Van

Even Sicker

Around this same time, I also felt the need to set myself up a little. You might even say that I was really trying to become an adult. I mean, I wasn’t getting any younger and I was sick of borrowing things, so I embarked on a crowd-funding campaign to fundraise for a wheelchair friendly van. Jab, jab, jab, right hook. Yes, I wanted to buy a van and deck it out with all my medical equipment so that I could escape from my predicament sometimes. A personal safe haven on wheels was my goal. And I did it. Such an epic fundraising mission. I’m still extremely thankful to everyone who donated. I bloody love my van, and yuppo we’ve been on some amazing adventures together. Steve Irwin is what I named him.

Yeah, I was still working every day at fulfilling my dreams and goals (with extreme disability and illness included) – and I was trying on this adulating thing for size too. I was failing at a few things but still enjoying the process. Like I failed at film making, failed with creating an advocacy organisation to help people through adversity, even failed at studying an online film course (via an online university). Try, try, try, knockout. I guess I was just becoming too sick and I didn’t quite know how to align my capabilities with my desires effectively, or I wasn’t able to continue with the lucky streak that I had in the prior years. Actually, to chuck in another life curveball, I was so sick by now that I think I used complete denial as a defence mechanism. The reality was that I could barely leave my room. Sexy, again.

2007-2010

NDIS

By now, I was wearing the nasal mask ventilator for over twenty hours per day, and, in many ways, I was just waiting to die. Honestly. Truthfully. Scarily. Then, kinda out of nowhere, the Australian government started this new disability initiative (NDIS) whereby I’d have my own one-on-one carer five days a week. This is exactly what I needed ten years earlier. Nevertheless, I was still grateful, yet too sick to now utilise it fully. I did try though.

I remember making home movies in my bedroom with my carers, planning and dreaming about road trips to the Australian Big Things and Uluru, but, in the back of my mind, I knew that I had only one immediate mission - to try and the gain confidence to go out in public wearing my mask. This terrified me. I just couldn’t breathe anymore without it. But I had the NDIS workers to do it with me now, so I kinda had to go for it.

In my mind, initially, so many people stared at me like a freak (when in reality they probably didn’t give a shit), still, it was pretty awful. Elephant Man. But also, woohoo, in my weird little way, I was re-joining the community again. Re-joining the world.

My outwardly expressed inner-dialogue is my way of healing and staying sane

2015-2017

2nd Tracheostomy

4mths in Hospital

Just as I started to gain confidence - which by this I mean confidence in the ventilator that it would keep me alive for that bit longer - I began trying to stabilse my life as much as I could. To find comfort in my routines, to be thankful for the things that I could do. And, you know, as weird as this might sound l was really trying to work out ways to start moving forward again, plus I also realised that through the NDIS I'd be able to start doing some cool stuff.

There was a shift, I now knew in my heart that I wasn't ready to die yet.

Only the universe obviously wanted to test this plan.., you see, winter hit… and with it so did a life threatening chest infection. Bloody hell. To be honest, this is probably one of the closest calls I've ever had.

For the few days prior to shit fully hitting the fan, with my bluey grey complexion scaring everyone, well, the reality was that I just couldn't get on top of this chest infection - despite trying. Like I think I was already on antibiotics for my chest, then I was using the cough machine easily every thirty minutes (again trying to clear my chest), but no matter, very soon I wasn't able to breathe bugger all. I couldn't even lay flat, in fact, I think I ended up sitting bolt-upright for forty eight hours. OMG, my bum was so sore.

But the writing was on the wall. I ended up in hospital (with two absolutely amazing and dedicated helpers), where a fair bit of chaos and some close-calls ensued, then just after 3am when my helpers went home, as you do, no kidding, I died - only to be revived by CPR. Then, next thing, I was in ICU yet again where another tracheostomy was inserted (my second). Balls. Like damn dirty stinking balls… this was the very thing that I'd been trying to avoid for over ten years. Also, consequently, I stayed in hospital for the next four months, learning how to live with 24/7 ventilator dependency – with this wildly ambitious aim of prospering.

I did feel like quite a failure though, but... geez I was very thankful that I was still alive.

Now, as much as this trachy thing sucked, on the bright side, after I felt hospital my health did improve. I was able to go out more, I could now go sneaker shopping again, plus I was able to go to the cinema weekly. These are some of my staple life activities since forever. Then heck, my ambition began returning too, it was like I’d become a completely different person from who I was just a few years earlier.

I went from being stuck in my bedroom to attending basketball games regularly, doing the art scene stuff often, even visiting old haunts. Going to pub gigs… or to just going to pubs. But best of all, I began to make full use of my van (the one that I had fundraised for). So, while the tracheostomy was a big hassle and hurdle – the suctioning, discomfort, only having the ability to talk for five hours per day – it did have advantages for me as well.

2015-2017

University

With having some breathing ability and stability now, even though it was purely mechanical, the flow-on effects were huge. But one of the most important for me personally, this also enabled me to go back to university – a degree is something that had eluded me my whole life (mainly because of my health), and needless to say graduating one day is something that is very important to me. So, being determined, I went back to study Economics and Politics. Er, I think my intellectual ego got in the way of my heart-driven interests. So, after one semester I switched into something much more my style, a double degree in Arts/Commerce (Creative Writing and Marketing), and funnily I’m now a quadriplegic writer – weird man. And I again have aspirations of becoming an advertising copywriter. Full circle.

2011-2014

One-Sided Love Story

Now, segway… bombshell… you see burbling away behind all this stuff, there was also a one-sided love story going on, which honestly I don’t want to say too much about this here. But what I think is worth mentioning is that I had the realisation that I am romantically unlovable. Oh and boom this was yet another heart-shattering moment. Like, while funnily enough, it was a partner that I craved, this was something that wasn’t just up to me (nor was this something that my pigheadedness could make happen), love is something that requires two willing parties. And from my experiences, I was finding out that chronic disability didn’t come with much sex appeal. Sad face.

Another hurdle. Yep, even as emotional fulfilment is a normal human need, plus love can be somewhat uncontrollable, what I found out is that I was basically excluded from the “love list.” Personality, humour, creativity and kindness isn’t enough. Which, as a result, this led to this weird cycle of frustration, self-hatred, and then this manifested into self-sabotage. I started to make some very bad decisions, all because I was heart-broken and couldn’t see how this could ever change.

As my astrology chart states, “moon in Libra people have a strong need for partnership. Without someone to share their lives with, they feel utterly incomplete.” Hence, the natural pull, it completely tore me up on the inside. Twenty years without one single date, eek great for self-esteem, great for self-worth. My disability had created so much baggage, I certainly couldn’t offer sex-appeal or security, geez nor could I even hug a girlfriend. It was yet another human norm that had been stolen.

2018

Marathon

Meanwhile… while broken-hearted and on this path of self-destruction, I decided that it was time to run a full marathon in my wheelchair – as you do. So, I organised a team of sixteen people (consisting of both friends and strangers) who really did want to just help and see me achieve this dream. Oh man it was such a special day, beautiful weather and not one hiccup, well, with the help of a few people we had planned it meticulously. Still, running in a wheelchair, I know it sounds silly but it is one of my favourite things to do. It give me the sense of freedom that I never get to experience in my everyday life.

Distraction through achievement was the life strategy that I was using, in fact, this is a strategy that I’d leant on for years. Only, for some reason, it just wasn’t working anymore. My heart was now so empty and broken, nothing could let life flow back in. I know this was because I was now so alone, so disappointed by the life that I’d been given, then to ease my pain I started to dabble in pharmaceuticals, yeah it really was the lack of connection that was killing me.

2015-2017

Birdman Rally

Anyhow, so running the marathon was a pretty cool achievement, and then very soon after I did this other crazy thing where I organised a team to participate in the Moomba festival birdman rally (a very famous Melbourne event). So, to compete, a great friend of mine jumped off this high platform into the Yarra river below, in our flying craft, a giant bucket. Total dumbness but oh so much fun. Actually, at this point, I was really starting to believe I could achieve anything that I wanted if I put my mind to it – except for love. I was the master of the dank-ass project.

Only, rather tragically, what again superseded all of this, the lack of love and companionship in my life kept eating away at me from the inside. It was like I couldn’t avoid it, my unresolved issues and heartaches had to come to the surface no matter what.

2015-2017

Self-Sabotage

Drugs

And with this, with all this pain rising to the surface, the self-sabotage, self-hated and stupid decisions escalated. Drugs, laziness, avoiding responsibility. Then, another catalyst behind all this, the mini nursing home where I was living had now fully shifted from a residential based model to a medical one. This meant I was treated as less of a person and more like a number, I lost even more freedoms, and my mental health was again being tested. Sheesh, when all I really wanted to do was get some sort of break or relief (even go on a holiday). But with extreme disability, it’s relentless. A 24/7 shit show with only the occasional silver lining (or this is how my experience of it was playing out).

Quick fixes to suppress the pain in my heart became my new thing, and regrettably, wrongly, ashamedly, I began to take lots of painkillers to dampen my inner turmoil. I seamlessly blended physical and emotional pain, and for a while these painkillers did the trick. The escapism was welcomed. However, as my drug addiction and dependence began to grow, what followed was a whole slew of problems. Mostly being, I was no longer addressing issues as they popped up, I was putting everything off because of my discontentment.

This was yet another very hard time for me, but worst of all because it was self-inflicted. Then, another thing that made this period difficult, the drugs began making me confused. Like my brain was the one thing that I could always rely on only now that was having some glitches too.

There were so many complexities that went along with my drug abuse, but for now I'd like the just point out two. Without doubt this came with a lot of shame, and every day when I took my pills it was almost like an admission to myself that I wasn't coping - which was the truth. And the drugs just made this worse. Then, another complexity, because I lived in this mini nursing home where taking high potency medications was so normalised (and they were very accessible), there was very little push back against my growing addiction. For me, it's like I saw green lights everywhere.

It was all the perfect storm of shitness. The strain on my soul was massive – as I really didn’t feel like a human being anymore. I’d already lost so much, encountered so much suffering, and honestly I began to wonder what I was living for. I became angry at God too.

But the worst thing, my drug abuse continued on for many years. It was my crutch.

2018-2020

Studies

Writing

So, without knowing what else to do, I sunk myself into my university studies. Assignments, short stories, creative exercises. And what began emerging more than ever before, I was discovering that I absolutely adored writing (something that I obviously inherited from my mother, she loved tapping keys).

This was quickly becoming my new purpose, plus form of escape.

Words were my new best friend, my only friend, and what's more I was creating my own unique style whereby I was using them as a healing tool. I’d write to help understand my circumstance (and to help others understand what I was going through).

Even when my soul felt so empty and I believe I was so alone, in my darkest hours, I was still trying share my world through my writing.

So, I started blogging regularly again, and probably more than ever before. Within myself, I made this commitment to start documenting as much of my life as possible, as I'd now begun to fully realise how unique and bizarre my life was. Also, it was becoming apparent that my stories were helping and inspiring people, even giving people this rather unfiltered look into this world of chronic disability.

I mean, I could've written fiction or even began talking about cause that were important to me, however these biographical snippets that I'd document began to feel much more than a way to let off steam. This felt like a calling. To document the good, bad and ugly of a life circumstance that very few people had fully opened a door too.

In some ways, as much as I disliked my circumstance and the body that I was living in, it had created this rather strange opportunity. A point of difference even. But in this opportunity, the thing that I realised most, it felt like I had something important to say.

2020

COVID

Despite finding some meaning and purpose in blogging, I was still struggling emotionally as well as dealing with this ever growing drug addiction. I dunno, I just had so much heartbreak, and I was still trying to get a solid grasp on things.

Actually, why I think this time period was particularly tough on me, it's because I was being forced to face my demons and realities much more. The drugs, no matter how much I tried to use them as a mask, there was no escaping.

Nevertheless, damn did I keep trying to escape or what. Like I again started to follow my default life strategy of distraction through achievement, only this time my strategy had a bit of a twist, I decided to start a part-time psychology degree on top of my other studies, and this was “apparently” as a healing focused endeavor - as I knew that studying the human experience has always helped me gain understanding and find some peace. You know, I also think I just wanted to be mentally preoccupied.

NB: For a fun fact, I would still absolutely love to study psychology one day.

In reality though, I was just scrambling, desperate and trying to hang onto something. Trying to fill my life with things other than my health problems. But we’ll never really know how this could’ve all worked out, you see, just three weeks into class COVID hit, then two weeks after that I dropped out. Bummer. RMIT-ski bye, bye. My strategy of trying to distract myself from myself through education had also failed.

Plus, because of all this COVID crap, the mini internship (one day a week) that I was just starting at an advertising agency fell through. This was a massive blow, especially as this was at one of my dream workplaces. One day hey...

Urrgh… and... on top of all this, with this potentially deadly disease floating around in the community (and as I lived in a location that had numerous high-risk clients including myself), I ended up in this crazy strict lockdown. No joke, it felt like I was serving a prison sentence. What a great year this was turning out to be.

With the in-house COVID rules, these fluctuated slightly, but over a 6-12 month period I wasn’t allowed to leave the house (not even for exercise or to go shopping like everyone else). I also had to nominate only one visitor who could only visit one hour a day (and at times I wasn’t allowed any visitors at all), then, on several other occasions I got locked in my bedroom for week long periods. Not the best for my mental health, which again this was like adding even more weight on my shoulders.

2020-2021

First Book

To try and keep my sanity throughout this COVID period, I leant on writing and blogging a lot. I doubled down on this documenting life thing, partly because I was still aware of how important I felt that it was to share my unique perspective, but couple that with this rather bizarre super strict COVID lockdown in a mini nursing home, it's as if this was a perfect storm. A moment in time that I believe needed to be captured.

On another note, because I was so stuck in my bedroom and alone constantly, writing was my only real outlet, and of course my textual therapist.

So, I started this personal challenge of writing 500 words, five days a week, and oh my goodness I loved it. My “rants” and "ventfest" turned into this organic adventure, and one whereby I was discovering a lot about myself and getting heaps of frustrations off my chest. I dove right in. A few walksThen, funnily enough, after writing one hundred episodes, six months later I had them all published. This was my first book, Bursting Bubbles.

Why I published this (or one of the main reasons I suppose), you see it’s like a compilation of these one hundred short stories with an underlying narrative of wanting to break-free; but what I always envisaged is that it’s a book anyone can pick up in a doctor’s waiting room, have a quick squiz and get something from it. Actually, that’s what I love about this book, you can flip it open anywhere, read two or three random stories and bam you’re entertained. You may even hit on some thought-provoking bonanza. Yep, it’s great for those of us who are attention-span challenged.

2015-2017

Trachy Leaks

Publishing my book though, I thought this was going to mark a turning point. However, right when I’d just finished writing these one hundred episodes (and I was starting to wonder what my next project and adventure might be), suddenly I started having these terrible air leaks from around my tracheostomy. Oh geez! More un-needed drama.

Breathing, needless to say, it's not over-rated. And the air leaks, it was so scary, like if this little plastic tube in my neck failed, I was dead. Ah the stress. In fact, this is something that people “oddly” often overlook about my care and day-to-day life, “if you don’t breathe you die.”

Oh and speaking of death, at this exact same time when I was going through all this, one of my best, best mates did die of cancer. He was in so much pain, it was this absolutely devastating journey he was on, it was so brutal to watch and hear his daily struggles. Still, I was there for him the whole way, which as hard and as heartbreaking as this was, I’m comforted in the knowing that our friendship was one with true staying power and meaning. Miss you buddy.

Anyhow, to get super specific about this leaky trachy bullshit now, I’d damaged the skin around my tracheostomy, and as it’s scar tissue so for the life of me I couldn’t get it to heal. Talk about a nightmare. Then what made this even more catastrophic, when I’d sit up in my wheelchair, because of the angle of the trachy, sitting up made the leaks even worse. At times I’d fully stop breathing, erk.

So, to try and fix it, on a few occasions I ended up in hospital, it was such a scary time (and that’s an understatement). Nonetheless, in short and the result, I literally ended up bed-ridden for the best part of five years - as while I was laying flat this was the only way I could manage the leaks.

I remember on a few occasions (as the leaks were so bad) that I was scared to move, roll over or even go to the toilet. I remember describing it to a friend that, “I wasn’t living day-to-day, I was living hour-to-hour.” So brutal. And oddly, the medical professionals didn’t seem to care too much. I was totally minimised and brushed aside. All they’d say is that there wasn’t a lot they could do and that they hoped it would heal – meanwhile I’m basically having a complete and utter nervous breakdown.

I’m not too proud to say it, this whole thing broke me.

2011-2014

Mental Struggles

Also, with these leaks, I completely lost the ability to talk. I could no longer utter a single word or make any noise for that matter. Yet another instance where more humanity had been stolen.

Why God?

I began to ask why I’d get put through this stuff. I don’t know what I did to deserve this. My life is a horror story and I know it. So unfair, just devastating, yet I try not to think this way. For some unknown reason I just kept going, even though hope was fading too.

Yeah, I guess I’d hit true rock bottom again, which this time around it cut so deep. New levels of vulnerability, new levels of self-hated – but weirdly what also started to unfold was a new level of compassion. Well, a very tiny bit. And from this, I began to sympathise a lot with other people’s mental battles (like I’d now had a real insight into mental fragility and overwhelm). And throughout my breakdown, here was I watching the rest of the world coming out of their COVID lockdowns (while I obviously still remained in one because of my leaks, then because of where I lived their COVID policies remained quite strict too).

This leaks and stuck in bed period, it was yet another very confusing and confronting time for me – it made me think a lot about entitlement and stuff like what it means to be a human being, plus about authenticity and creativity. Also, about failure. But what I realised most of all is that we’re all on these wildly bizarre individual journeys, and with our journeys (blah, blah), it really is important to try and make the most of what we’ve got (and our circumstance).

2007-2010

Over-Thinking

try and make the most of what we’ve got (and our circumstance).

Again I tried to learn on my writing and other hobbies (sneaker collecting and American politics), only all I could ever see was lack, and comparing myself to everybody else living their best lives on social media. Or, at least a life. Whereas by comparison, all that I could see, it was the ceiling above my bed. And, I also now felt like the guy that everyone would point out in our high school group photo and say “oh man what a tragedy.”

It’s weird knowing that your biggest achievement is the simple fact that you’re still alive – after a twenty year period of having rocks and the kitchen sink thrown at you.

Nonetheless, I was in such a bad place and at such a low point at this time, I honestly had no idea how I was going to make it out of this munted shit show.

Some of us win, some of us lose – as I’ve learnt from my journey. Life really is the luck of the draw. The universe has no rules. And quite often, the “bad guys” live long and happy lives whereas the “good guys” often suffer and struggle. And even though these are generalisations, I honestly don’t understand why this is. If you can enlighten me, please do?

This is how somebody tried:

“The “bad ones” seem to win, and in more generalisations, it’s on financial, validation, surface level manners. The “great” ones win, by being authentically connected to self, serving others and having genuine love, admiration and respect. Also, the basic premise here is there is ultimately no "good" or "bad", only experience”

Hm, experience. I was racking up a few of these, yet what I felt was that most of them were negative. In fact, I was so frustrated that I could never get a break, so, I began asking myself a number of deep questions again - why, why, why? And as such, I again began to dabble and lean on the life coaching school, I even leant on the A Course In Miracles book again… and watching relevant lectures, movies, even doing the audiobook thing. Plus, I started writing blogs again too (which ended up being the backbone of my second “blog book” Going Nowhere, Going Everywhere). Still, throughout what was undoubtedly yet another exploration period, hm, geez I was tired of all the bullshit (but I still didn’t want to give up completely).

Another tool I employed at the time was the ol’ faithful “distraction through achievement,” or a project, or in this case several. So, I now begun creating a body of work (in several different forms) and niching into some more specific ventures. So, first up I started writing an advice column, then working on some life guides, and another thing was to get some writing groups off the ground – or to at least be involved in some. Writing really is my lifeblood.

Then, another layer burbling away behind all this as well, it has always been my goal to one day stop living in institutional care (as it had always been slowly eating away at my soul). Then, woohoo, I finally broke free.

I finally got my big break.

I was dreaming of breaking free while kitchen sink was being thrown at me.

My life is like a course in disaster management. Everything I did had a sense of urgency and desperation

A lot of my life has been about proving that I’m not disabled

2015-2017

Apartment

This escape from rules and routines, which wasn’t all that straight-forward, in fact, this process took about three years. Yeah, I was stuck in this whirlpool of paperwork and bureaucracy. But it’s like I not only had to waste another three years of my life living in an undesirable location, I actually had to put up with a lot of crap and unnecessary hardship too. But the worst thing, I couldn’t make any long-term plans. It’s like I’d been living in limbo (and this is before consideration of my leaky trachy and my poor health in general I suppose).

Still, when I moved; I was excited, nervous (mainly because I’d become so institutionalised), but most of all I was looking forward to some sort of autonomy. Beer and pizza for breakfast. I just wanted to be a bloke. Honestly, after living in regimented care for so long, I’d forgotten who I am and blimey so many parts of my identity have been supressed, so this is what I was hoping to discover in my new home - me.

It’s been a long time coming but I think I’m finally going to get what I need. Yep, a place where my family and friends aren’t afraid to visit.

But to get this freedom, now I’m basically an NDIS allocated and funded business. It’s a new level of responsibility. I’m now be running a household and a “shopfront.”

And I guess this responsibility, ultimately this is what I want. To be an adult.

The universe has always presented me with challenges to force me to grow, and in the exact area where I need it most.

2015-2017

Withdrawing from the World

Then… I did the strangest thing.

I completely withdrew from the world. I realised that I wasn’t coping, I even had to get a handle on this whole new lifestyle, then in another way I had to commit to a new vision. I’ve always found transitional periods to be quite a messy process, and I dunno but this transition felt extremely deep (so it made me hesitant to keep letting it all hang out). And I hate putting up facades, so I retreated to work on myself. I focused in on my goals with the aim of executing.

So, not only has this spurred an intense interest in politics, I’ve also been starting to think about doing something with my university stuff... like I’m even about to launch a freelance copywriting business. Time to dive in. Plus, time to do something completely different, something away from all this adversity stuff – as was suggested by my psychologist

Still, this whole traumatic life, one battle after another, has really taken its toll on me. Depression and confusion have been a constant for a few years now. And yeah, I work with this psychologist to try and overcome it.

They stated:

“Your little emotional Self is self-medicating because it isn't getting needs met. Those needs are varied - emotional needs, physical needs, sexual needs, issues related to dealing with your physical circumstance and the threats you deal with daily. Unless those above needs and issues around safety and feeling secure are addressed, by finding 'antidotes' to the feelings and threats, the drugs are your crutch.”

Maybe psychology is in my future? Disability counsellor? Drug counsellor? Self-hatred expert?

2011-2014

Bed-Ridden

Trying to Explore

This is your Education description. Concisely describe your degree and any other highlights of your studies. Make sure to include relevant skills, accomplishments, and milestones gained. Don’t forget to adjust the timeframe in the subtitle.

2007-2010

Business Course

2015-2017

Drug Addiction

2015-2017

Starting a Business

2011-2014

Comfortable in my Own Skin

It’s kinda weird, it’s like I’ve lived two completely different lives. For twenty three years I was a fun-loving boofhead, then for twenty years I’ve been fighting to get that back. Or, I’ve had an able-bodied life and a disabled one – which are basically unrecognisable to each other.

I find the “fighting to get that back” concept most interesting though, like I’ve often been focusing backwards and not forwards, yet admittedly, I have still managed to achieve a lot on this quest to unearth the person I should’ve been.

Probably because I’m such a dreamer.

But my point I guess… even all the looking backwards, through all the fuck-ups and fighting, somehow I’ve still been moving forward. Learning and growing, cementing myself as being this new individual and discovering the depths of my person completely, which are the fundamentals of life and living I suppose.

Yeah, some random thoughts. Sound wanky?

Smell ya later

2007-2010

Life

So, what is next?

Consolidation.

Surrender.

Building infrastructure around my dreams.

I can even feel some more blogging coming my way soon.

I don’t want fancy, I just want me.

And I wouldn’t mind going on a trip to Uluru, yeah this has been a huge goal of mine for some time now. Also, come at me ladies!!! Haha. Dreams, dreams, dreams. This is where I’m at: no moving limbs, can’t breathe without a machine, can’t talk, can’t eat or drink; no capital, no man power, just a functional mind and faith. Yes-siree… beyond consolidation… I have dreams and I’m STILL following them.

That’s what success is to me.

Mark my words.

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