THE STORY OF MARK
‘You don’t choose a life you live one’
Emilio Estevez (The Way)
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. Even the commonplace desires of marriage and family were forced to the way side as a bizarre disease process took hold of my body.
I was facing a barrage of tests, hospital hopping and doctor shopping – it was a whole new world for me. 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 23 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 scary. I even began to lose movement in my limbs.
In desperation my family and I moved to Cairns, well, most of our avenues had been exhausted in Melbourne. So with that the whole ‘regime’ moved up north. At one point, two fingers temporarily started to work again but nothing more. And I don’t deny it, we had some fun times up there, but sadly my decline continued. I was now confined to a wheelchair, my symptoms becoming more and more pronounced, and I also suffered aspiration pneumonia (respiratory failure).
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 weren’t 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.
Courtesy of a Medi-Vac flight I flew back to Melbourne – tracheostomy included. Then after several ‘very quiet’ months of hard work in a specialist respiratory hospital ward, I was finally able to breathe (mostly) on my own again. I had to use a nasal mask part time. Oh and I did have a PEG 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. It was all so fucked up I can’t even put this part into words.
Still, I had to keep moving forward. And with still no diagnosis, and being far too sick to live at home, at this stage I found myself being thrown around amongst a few different care facilities. Actually one was completely brutal with freakin asshole 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. Slowly starting 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 for me to find my feet though, in fact, I just kept trying shit to see what worked and what I was capable of. One time I even won a T-Bar t-shirt design competition – sporting the logo of the fictitious character ‘Bufferman’ that I created. And I even managed a meet and greet with the North Queensland Cowboys – my rugby team from when we were living in Cairns.
This was my first taste of the opportunity in adversity.
So I kept growing, and as it turns out or so it seems, 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. Mmmm and yeah, 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 even surprised myself with some. To this day I still can’t believe I was a life drawing model.
Despite all the health shit I could focus on passions. I had the time to follow my dreams – still one of only advantages of my physical predicament.
The bucket list provided many memorable moments. Some of these include: running a half marathon in my wheelchair (now full marathon), appearing on the tv show Neighbours, and even the unthinkable goal of kissing supermodel Miranda Kerr. Also, I’ve partaken in a private cooking class with MasterChef host George Calombaris, entered the Around the Bay in a Day bike ride, and oddly enough gave away countless free meat pies at the football.
Only gees I started to get really, really sick in the midst of all this. In a way it was kinda 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. Was this was the culprit – all from a simple tick bite in Europe – maybe, maybe not?? Regardless, it was so bitter sweet. You see, its 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 (abx via a PICC line), however, this made me even sicker. Bed ridden 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.
But be that as it may, life still goes on, 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 been worth it!
It’s amazing what you can do when you put your mind to it!
Like even in my antibiotic slumber, well I started studying this Life Coaching thing; and beyond learning absolute bucketloads about myself it also provided an avenue whereby I could practice the law of reciprocity (and pay my dues). Undoubtedly many people had helped me on my way.
So, my coaching journey started in late 2013 (my intake was Feb 2014), and blimey hasn’t the whole thing put a rocket under my ass! And what I really liked about it, all the content is 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, fancy questioning and hoo haa, it made practical application so much easier.
Then, as with most new students, I began to look at my own life with a fine tooth comb. However, with me (being in such a volatile life predicament) my self-development journey just continually escalated, more and more and more. Oh and of course I did this with the help of my very own Coach, Mariane.
Also, thankfully, very early on in my journey another student (Sarah) summed this journey up perfectly for me. And 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, as I just felt my life starting to ‘move’ again, all of a sudden my health became an even bigger burden. 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.
Only I still had hope, and I relished that!
And I started on another pretty intense spiritual path, this time studying A Course In Miracles.
But not-so-fun times aside, and spiritual explorations, my professional ambitions then became an interest – I mean I had learnt many things on my journey which I thought that I’d love to pass on. 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.
Anyways… oh gees I’m ranting… so I started a 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 and my thoughts; in fact, writing became my new best friend. It gave me peace and a way of working through my bullshit. But what surprised me most of all was what was spilling out upon the pages. I’d become quite the deep thinker. And people liked it – still got me flawed that one.
Also, 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 GoFundMe 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 some times. A personal safe haven on wheels was my goal. And I did it.
I’m still very 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 an advocacy organisation to help people through adversity, even failed at studying an online film course (via OpenUni). I guess I was becoming too sick, and I didn’t quite know how to align my capabilities with my desires.
In fact, I was so sick by now I was in complete denial as a defence mechanism. I could barely leave my room.
By now I was wearing the nasal mask ventilator over 20 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 5 days a week. This is what I needed 10 years earlier. But I was still grateful, yet too sick to now utilise it fully.
I remember making movies in my room (with my Carers), planning (dreaming about) road trips to the Australian ‘Big Things’, but in the back of my mind I knew I had to try and gain confidence to go out in public wearing my mask. This terrified me. 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 fucked up, only woohoo in my weird little way I was rejoining the community.
And just as I started to gain confidence, Winter hit… and so did a life threatening chest infection. I ended up in hospital, I died only to be revived by CPR, and next thing I was in ICU where another tracheostomy was inserted. Fuck. Like nah fuck, fuck, fuck this whole thing was a really close call. And I stayed in hospital for 4 months this time, learning how to live with 24/7 ventilator dependency.
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 in many ways I’d become a completely different person. So from being stuck in my bedroom, I began attending basketball games regularly, visiting old haunts, and best of all I began to make full use of my van.
So whereas the tracheostomy was a bit of a bitch – the suctioning, discomfort, only having the ability to talk for 5 hours per day – it did have advantages for me as well.
In fact, I was even able to go back to Uni – a degree is something that has eluded me my whole life (mainly because of my health). So determined, originally I went back to study Economics. However, I’ve since switched to a double degree in Arts/Commerce (Creative Writing and Marketing), and funnily I’m now a quadriplegic writer (I type with a sensor on my head – no shit – weird man). And I again have aspirations of becoming an advertising copywriter.
Still, this whole traumatic life (one battle after another) has really taken its toll on me. Depression has kinda been a constant for about a year now. And yeah I’m working with a Psychologist to try and overcome it blah blah, but It’s just pretty hard to overcome things when you’re constantly alone, a job, and you live in an institution. And you are powerless to change it.
But to bring things back to a more positive note, I really have been working on my dreams again, even revisiting my bucket list again. Like I ran a full marathon in my wheelchair with 20 people pushing me, a friend (Mel) 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, yeppo, 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 12 years now.
So ummm yep this is where I’m at. No arms, no legs, no capital, no man power, just a functional mind and faith. I’ve got dreams and I’m following them.
That’s what success is to me.
Photo 2003 – Santorini, Greece