The Writing Virus
STORY OR MARK
‘You don’t choose a life, you live one’
Emilio Estevez (The Way)
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After an enjoyable childhood, an experimental few teenage years, then having aspirations of becoming an advertising copywriter, it was a simple trip to Europe that would change my world forever. A random neurological event took place over there, something with no warning. To me it felt just like a common cold and I treated it as such.
After arriving back home in Australia, within a matter of months, even the commonplace desires of marriage and family were forced to the wayside as a bizarre disease process took hold of my body.
Talk about weird, one day my body just stopped working
I was facing a barrage of tests, hospital hopping, and doctor shopping – it was a whole new world for me. I explored cure A, therapy B, all the way to miracle Zee. And despite all of my efforts, I failed to get a 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.
Nevertheless, with no concrete diagnosis, I began to explore 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 body had a mind of its own. I continued to deteriorate rapidly. It was terrifying. I even began to lose movement in my limbs.
In desperation, my family and I moved to Cairns because most of our avenues had been exhausted in Melbourne. I always found the hot weather to be beneficial for my health. At one point, two fingers even temporarily started to work again but nothing more. I don’t deny it, we had some fun times up there, some crazy awful times as well, but the sad reality was that my decline continued. I was now confined to a wheelchair, my symptoms became more and more pronounced, and I also suffered aspiration pneumonia (respiratory failure). Boom, hospital.
Now, what would you do if you woke up one morning in a strange place with a tube down your throat, and paralysed? Yep, this was my predicament. Even then, this escalated as my treatments were not working. So, not only was I in intensive care on life support but I then had a hole cut into the base of my neck so that a machine could literally pump air into my lungs. What’s more, I was completely unable to talk, unable to eat or drink, and was told that I never would again.
A Medi-Vac flight flew me back to Melbourne – tracheostomy included. Then after several very quiet months of hard work on a specialist respiratory hospital ward, I was finally able to breathe (mostly) on my own again. As such, the tracheostomy tube was removed. I did have to use a nasal mask part time now, though mainly at night. Oh, and I did have a PEG tube (feeding tube) inserted, so that one part was right, I would never eat or drink orally again. But hey, Captain Obvious, I was still at rock bottom. I had a real fight ahead of me to gain any sort of life quality back. Plus, I was now going to have to do it as a quadriplegic in a wheelchair.
Also, right about now my mum tragically passed away from a brain tumour. It was so aggressive that she died exactly three months after exhibiting her first symptoms. It was all so messed up, I can’t even put this part into words.
Still, I had to keep moving forward. And with no diagnosis and being far too sick to live at home, I found myself being thrown around a few different care facilities. One of these was utterly brutal with freaking nasty nurses – hard times. Nevertheless, after finally finding somewhere to reside (where I still am today), I 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 – 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.
It still 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. One time I even won a commercial t-shirt design competition – sporting the logo of fictitious character Bufferman that I created. I even 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.
I kept trying and 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. Then I decided that a bucket list seemed like a pretty logical way to encompass what I desired – also a way to keep me focussed and motivated – and with that, I started to do some rather crazy and extraordinary things I surprised even myself with some of these. To this day, I still can’t believe I was a nude life-drawing model. Gross.
You see, what I realised was that despite all the health stuff, and obviously I didn’t have a mortgage or kids, I could wholeheartedly focus on and invest my time into passions. I had the time to follow my dreams – one of the few advantages of my physical predicament, but a big one.
The bucket list provided many memorable moments. Some of these included: running a half marathon in my wheelchair (now a forty two kilometre full marathon), appearing on the television show Neighbours, and even the unthinkable goal of kissing a supermodel. Also, I’ve partaken in a private cooking class with a MasterChef host, entered the Around the Bay in a Day bike ride (on a wheelchair-cart bike), and even given away countless free meat pies at an AFL football match. Unfortunately, I started to get really, really sick in the midst of all this. In a way, it was the end of the bucket list.
And despite feeling that my life had just began moving again, I was thrown another curveball in the way of a diagnosis. My blood tested positive to the controversial illness Lyme Disease. Could this have been the culprit – all from a simple tick bite in Europe – maybe, maybe not? Regardless, it was bittersweet. You see, Lyme treatment is not that straightforward, neither is it easy to come by. In fact, it was a constant battle. Still, I found a doctor who was willing to start treatment (antibiotics administered via a central intravenous line), however, 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.
All the same, I’ll never stop searching for my magic bullet.
Life still went on in parallel. And thankfully, I always managed to dream up another project. So sure, it’s been hard work or, more accurately, a labour of love (life), but it’s definitely been worth it.
It’s amazing what you can do when you put your mind to it.
Even in my antibiotic slumber, I started studying this Life Coaching thing with the hope that I would learn bucket loads about myself. To find some peace in knowledge. My coaching journey began and, blimey, the whole thing put a rocket under my bum. And what I really liked was that the content was oh-so practical. I mean, I’ve explored Buddhism extensively, so I was already aware of a spiritual life-strategy, but with all these different models, textbooks, mentors, fancy fang-dangle questioning and hoo hah, it made practical application 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 look at my own life with a fine-toothed comb. With me being in such a volatile life predicament, my self-development journey just continually escalated. I did this with the help of my very own coach, a blind lady, and quite possibly one of the loveliest people I’ve ever met in my life. I also started on another pretty intense spiritual path, this time studying A Course In Miracles.
Thankfully, very early on in my journey, another student summed it 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.”
Then, just as I felt life starting to move once more, my health became an even bigger burden. Treatment turned into turmoil. I started to hunt further for a cure, and began to do even more invasive treatments (so, so taxing), and as a result I just got sicker and sicker and sicker. I was left wondering so many different things, in fact, I was left wondering if dealing with the repercussions of an injury might be easier – as I started fighting for my life every single step of the way, on a path to nowhere. Only I still had a little hope and I savoured that.
But not-so-fun times and spiritual explorations aside, next, my pay it forward ambitions became an interest. I mean I had learnt many things on my journey that I thought I’d love to pass on, and I believed that this information may help others struggling. Plus, as a teacher of sorts, I felt like I could live up to my capabilities as an effective human being. This quest took me on many paths – like I began writing my first book which was later rejected.
I then started a personally branded website. And even as I had a blog through my bucket list adventures, I now started to write and post a bit differently.I started to write about my life, my feelings and my thoughts; in fact, writing became my new best friend. It gave me peace and a new way of working through my stuff. But what surprised me most of all was what was spilling out upon the pages. I’d unintentionally become quite the deep thinker. And people liked it – still got me floored, that one.
Around this same time, I felt the need to set myself up a little. 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 van – 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. I’m still extremely thankful to everyone who donated. I bloody love my van.
Yeah, I was still working every day at fulfilling my dreams and goals. I was failing at a few but 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). I guess I was becoming too sick and I didn’t quite know how to align my capabilities with my desires effectively. Actually, to chuck in another life curveball, I was so sick by now that I used complete denial as a defence mechanism. The reality was that I could barely leave my room.
By now, I was also wearing the nasal mask ventilator for over twenty hours per day and, in many ways, I was just waiting to die. Honestly. Then out of nowhere, the Australian Government started this new disability initiative whereby I’d have my own one-on-one carer five days a week. This is what I needed ten years earlier. I was still grateful, yet too sick to now utilise it fully. I did try though.
I remember making movies in my room (with my carers), planning (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. Elephant man. I just couldn’t breathe anymore. But I had the workers to do it with me now, so I kinda had to go for it. So many people stared at me like a freak, it was pretty awful. But also, woohoo, in my weird little way, I was re-joining the community again.
And just as I started to gain confidence, move forward again, winter hit… and so did a life threatening chest infection. I ended up in hospital and died only to be revived by CPR. Next thing I was in ICU where another tracheostomy was inserted. Balls. Like damn balls… this whole thing was a really close call. I stayed in hospital for four months this time, learning how to live with 24/7 ventilator dependency – with the aim of prospering.
Now as much as this sucked, on the bright side, my health did improve. I was able to go out more. My ambition began returning, and I’d become a completely different person from a few years earlier in many ways. I went from being stuck in my bedroom to attending basketball games regularly and visiting old haunts. Best of all, I began to make full use of my van. So whereas 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.
In fact, I was even able to go back to Uni – a degree was something that had eluded me my whole life (mainly because of my health). So determined, I went back to study Economics and Politics. However, I later switched to 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.
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 worked with a psychologist to try and overcome it – blah blah – but hey, It’s just pretty hard to overcome things when you’re constantly alone and live in an institution. A guy feels powerless to change it.
But to bring things back to a more positive note, over recent years (in spite of my pains), I really have been working on my dreams again, even revisiting my bucket list. I ran a full marathon in my wheelchair with 16 people pushing me, a friend jumped for me in the Birdman Rally, and now I’m really knuckling down and writing books (and doing shitloads of homework). As I said earlier, yep, I certainly do know how to dream up another project.
So what’s next? Well, it has always been my dream to get better and ride a bicycle around Australia. Actually for twelve years now. Dreams, dreams, dreams. This is where I’m at: no moving limbs, no capital, no man power, just a functional mind and faith. I have dreams and I’m following them.
That’s what success is to me.
Mark my words.
The Writing Virus 