Episode 42: Fighting for my Life Back

You can’t be you if you don’t know you, well apparently so, anyhow in saying that I really didn’t know who I was anymore. I mean with all this health stuff I was completely lost on a practical level, and apart from health I had little to no pastimes. I was the clean slate. Hence I had to learn some stuff – about things like my capabilities, about what I wanted, what I truly needed; and I then had to get a practical education in all of this. Plus this ‘clean slate’ also provided an opportunity to work on some other bits and pieces (blanks) that I wished I’d explored further in my youth. Then I kinda just meshed the two. So yep next step enter BMX Bikes (my very first project); and whether it be a redirection of an interest or a straight up mid-life crisis I’m not too sure, but whatever the reasoning behind it I started rebuilding and doing up old bikes (with some help of course). I’d buy the parts off the internet then get to work. Some staff thought I’d completely lost my marbles (as I couldn’t ride them), but for me it was for the love – a self-actualization and an experiment – man I loved those damn bikes. Then I also redirected my interest in cars and bought this massive remote control monster truck that ran on petrol. It did do 70kph, in fact it absolutely flew, but with mine that was pretty bloody rare because my brother was continually smashing it… oh and it took forever to fix. Needless to say I always had to have a project so that I could feel good about myself, to feel worthwhile, along with helping to define my abilities.
Then with each passing project, they began to lead to slightly bigger ones. Like I began to go out a bit (to the movies, to the shops), and I even started to do a few regular things locally. Only of all the things, I then decided to join a painting class. WTF. Nope no arm movement, no finger movement or dexterity whatsoever, no bloody clue about art, but for some reason I thought this was a great idea. I’m sure it was an act of defiance. Anyhow a Carer (who was right into art) took me along to the local community centre; it was to a class of about 30 people. And to be honest I’m certain most of them thought I was just there to watch, only within the first ten minutes, yep there was I with a paint brush in my mouth. All of a sudden I was whipping my head around, painting something that resembled the works of a pre-schooler. Hey I thought it was awesome, just playing with the colours and stuff – what I didn’t expect for a moment the response that I got from the class. Everyone was astounded that I was just there having a shot. I didn’t dare tell them that I was probably more shocked than them. Nevertheless it was quite encouraging to know that people weren’t necessarily seeing my disability, or judging my catastrophic artworks, you see (from what they were saying) what they saw was a brave man having a crack. Someone defying the odds. In fact I felt this reaction gave me the confidence to do more, and it made me reflect upon and respect some of my housemate’s stories in overcoming adversity even more too.
In all honesty I believe this was all part of a process that had to happen. A real hands-on practical growth. I mean before long I was starting to attend things like concerts, comedy shows, doing half day excursions, and later even regaining some old friendship circles – I just loved to see how far I could push my abilities. Actually just as a sideline little remark here, quality over quantity is how I tried to view it – rather than trying to salvage what I could. And there was always a project on the go. But umm yeah it wasn’t all smooth sailing hey, you see my next big adventure happened to be to my family home. See up until now everything had been on my terms, inching forward, but this was like leaping into an emotional time bomb. Just to see the place was so weird and confronting, and inside everything so small (as I was used to these great big giant hospital hallways); but the shock was being inundated with memories of my demise and the loss of my Mum – it was almost too much. I was so pissed off at how life was unfolding. The comparative reality hit. And I was also being forced to face the man that could’ve been. And the worst thing was what could I really do about it? It was like disability ended part of my life (yet admittedly began another). Or to again emphasize the contrast here, where I’d previously just walked up and in the house, it now took over five minutes with all the steps and ramps and stuff (all with a neighbor’s help). Even so I was never going to give up hope that’s for certain. For the time being I just thought about what my Mum would’ve wanted for me, and how I could make her proud.
From this point I then began seeing doctors again; actually just for the record here I always felt much more drawn to naturopaths (intuitively). See doctors only treat symptoms (thus allowing the body to heal itself) whereas natural medicine will at least attempt to treat root causes – and a cure is what I wanted. Much more about this later. Still doctors, naturopaths, blah, I just wanted somebody to heal me. Life was just so much more doable with good health and limbs that moved, which is pretty bloody obvious, and I also wanted to finish the healing quest that both my Mum and I began. I felt so attached to this ideology. So initially I went to see a totally new naturopath, one who was a gut specialist, and OMG so good looking. Now she prescribed me a few supplements yeah, and did some more testing, and when my results finally came in we found a few small imbalances. Overall I was still very healthy though. However here I was also diagnosed with Leaky Gut Syndrome (where food particles leak through the gut wall directly into blood stream, thus creating an auto immune response) – which I was oddly happy about as I finally had some healing to work on. Now on the other hand I also started to see my old holistic doctor too (who I used to see before Cairns), and gees blimey he’d become quite ‘out there’. It really felt like a waste of time and money. Or I think what was beneath that was that I was now restricted in so many ways, and probably because of that I now had a tight rope between a fatal error and a small victory. This realisation started numerous holistic doctor appointments.
I explored health on many different levels, and I became involved in, let’s say, a number of enterprises too. One which comes straight to mind is Church, and not being anyway religious at this point (actually I’m still not), as most sick people do I began to explore Christianity. I just thought it was what you did. I didn’t know there was much else out there either, and I had never even had the slightest thought that there could be another way. And with that I began to high step it at a local church group – which seemed to be a lot more like a rock’n’roll Jesus festival. Still, I persisted for several months, trying to participate in whatever I could – even in one case, my carer pushed me through a human tunnel of prayer – it was one of the most surreal experiences ever! To this day I still can’t believe she did that. But I just wanted to explore; or I didn’t know what I wanted, or maybe better put I wanted to find out who I was. I just knew there was something out there that meant more to me – spiritually – and as fate would have it, Christianity wasn’t the path for me. It just didn’t sit right in my heart, so I suppose I just had to keep searching. And the search that I’m referring to; it wasn’t really necessarily a spiritual search, I was just looking for something to fill the hole in my heart that this whole life had bestowed upon me. I mean, holy shit, I even became involved in a supplement pyramid selling scheme just for shits and giggles, and looking back I think a lot of this was to do with distraction from all of the undeniable truths that I wasn’t ready to face as of yet.
So from concerts to art class, to Doctors, to then church, I was never really addressing a solid textbook foundation, though this was my foundation. I was always searching for the next shiney thing to make this all better, but really there was no escaping the process (adversity really is a process). And through this I was constantly reminded to plan for the future, but with that every day could be my last. Like my biggest issue (my breathing), I couldn’t breathe at all lying down; I relied 100% on a respirator; and this can affect me anywhere/anytime from being in my wheelchair and having too much weight on the back… or like one time the backrest on my wheelchair let go and I went flying back – boom couldn’t breathe! Such a close call. Or another ‘good one’ was when I was in bed and at 2am ‘blackout’. My ventilator, stopped. Back up generator failed. OMG how I survived that night… well receiving manual ventilation for 3 hours, but it was still so touch and go, it was just enough to keep me alive – and I’m not joking when I say that. I was literally gasping for every single breath, and if I panicked I would have just straight up died (your body needs more oxygen when you panic). But oh my when the power came back on it was unrivalled relief – I lay there shivering for hours (from the shock) yet with a smile from ear to ear. Still I’m just trying to point out the fragility of my health here, in particular my breathing – I had to be very careful. But once more this was just part of my life… and well these dicey things happen from time to time [no matter how careful you are!] – but please don’t think it’s an everyday occurrence.Hence this is why I always needed a distraction from this otherwise I might’ve gone crazy. Being always on the edge ain’t fun.
This was me fighting for my life back. This is how I did it.

About Mark

For all things a day-dreamer, a larrikin and an undeniable fighter. Mark advocates for both Adversity and Lyme Disease; and boasts a real passion for green living, nutrition and organic foods. Oh and he's a quadriplegic too. This spirited life coach, with prior background in marketing & advertising, now has more recent aspirations that include becoming a published author, and a business owner too. And when well enough, Mark’s also ticking off his bucket list, and he also volunteers with the Starlight Children’s Foundation. Mark is an ACIM student, an adventurer, and a sneaker collector. His dream is to one day get better and ride a bicycle around Australia.

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