Episode 47: Distraction

Now I’ve said it before and I’ll say it again, shit was always going wrong. And truthfully this is a little hard to express. Like I don’t mean just a minor thing (well I had them too), but what I’m sorta referring to is that within any instant I might be fighting for life. It really could happen anywhere and at any time. Like for example, a couple of times in the early morning (while puffing away on my ventilator) the hose magically decided to fall off, and being on my back, my chest muscles weren’t strong enough to sustain breath. So panting like a dog, I’d be praying that someone would hear the shitiest disconnection alarm ever, or answer my buzzer in time. Truly these moments were so intense because if the staff were busy I’d be screwed. Or for another random example, coming back from who knows where in a taxi, the driver went over this massive bump which caused my head to fly back – so I was staring at the roof – and bugger me you try to breathe in that position let alone for someone with respiratory insufficiency. Plus, the Carer who was with me didn’t notice. So without the strength to lift my head forward, I sat there with my ‘flip-top’ head (breathless for at least 30 seconds) ogling the grey vinyl roof – kinda thinking well this will be a pretty shitty end. Then bump and my head flung forward, but my neck hurt for weeks. Still, at least I was alive. But my point is, hey I was getting on with it. My choice had become that I’d rather die doing than drowning. I really thought I had little time left. Acceptance of this is what had me running at my obstacles. It was now all about the short game here. I mean if the hose fell off one morning, that could’ve been it, I’d miss out on all the best things in life – love, connection and family.


Now this fragility made me think a lot about meaning, and from the anxiety, a lot about distraction. Heck legacy was even another thing that came to mind. Like undeniably all I was doing was partaking in hobbies, so to kill two birds with one stone, I needed something with a bit of substance in my life. And with that, and maybe massaging my need for ambition, I enrolled in a university course online. To me it was clear that I wanted to create something, I just didn’t know what. So I completed half a degree in media. I studied principles of communication like television, radio and the internet etc. We looked at their effectiveness, design, stuff like that. Trust me, this is a very basic overview, there is quite a lot to it. And obviously I never finished it, actually I wonder if that was even the plan because I did it for me. You see it provided sort of a sideline interest for me, away from all the health stuff I usually dealt with. It also provided an avenue whereby I could work my brain: I mean, daytime TV and interaction with the same people every day, let’s just say my mind was less than inspired. In fact, I actually felt myself getting dumber every day (with that). Worrying about bullshit, over dramatising first world problems, but most importantly, forgetting some of the things that were truly important to me. To me, knowledge has always been something I valued highly. And, apart from all my hobbies I guess this was the thing that was to take the other half of my time, learn, learn, learn. So studying took up ‘everything’ and at night I started listening to audio books (when I should have been studying), I just found them very relaxing. Or use it or lose it. That was the outlook I put upon my mental health.


Then one more little addition to my to-do list was that I needed short term projects to have something to look forward to – and to dream, meet, and achieve. So this was my thought, right? Being in this brand new service, I decided to throw my hat in the ring and do my bit to create a bit of community (well more than the newsletter), and with that, I decided to hold a number of parties and events. Truthfully, I didn’t know if they were going to work or not, but I was mostly turned on by the thought of organising and the event management type hoopla. I don’t know, I just got pleasure out of running through scenarios in my mind. And then, my dream of a high school party became a reality. It had hop-scotch, four square, musical chairs, but best of all it was fancy dress with a winner being crowned and all. Some of the staff even organised cupcakes and fairey bread, party pies and sausage rolls, it was the authentic high school experience (or kindergarden). Hence maybe bobbing for apples was taking it a bit too far but we did that anyway. Still though, I thought the best bit was all the outfits, and a few people mentioned how much fun it was op-shopping to find all the outfits beforehand. I don’t know if you can picture it but all the girls in pig tails, my mate (yes that’s a bloke) came wearing a skimpy school nurses outfit, and one of the other resident’s husbands came as the school headmaster in full robes and all. Imagination was everywhere. It really was the best day. We even took a class photo at the end – just perfect. In fact people talked about this day for months, it was such a success. And to me personally, the high school party represented seizing the sword.


You know and I had a taste for all of this now, so then came a sixties disco party (which wasn’t all that successful – particularly as I just got drunk); but my favourite of all was an idea to organise an annual sports carnival. As the residence where I lived had 4 houses, it would be a house on house highly competitive bunch of activities – with everyone dressed in their team colours of either green, gold, red or blue. Things like potato sack racing, to peg feed (formula feed) eating competitions, then to my all-time favourite the bed pan toss, these were just some of the events. See, that’s what tried to do. I tried to incorporate everyday health and medical paraphernalia into the events to take the piss out of the rig morale of our everyday modalities. It not only brought a sense of community to the establishment, it also provided an opportunity for everyone to take a step back and have a laugh at the daily norms. What surprised me, actually was that everyone was so into it. Competition was fierce, and funnily enough, I actually brought real trophies and ribbons for everyone to vie for. And I tell ya, everyone wanted that inaugural cup! Having since held a few of these, they really were some great times. Residents, families, staff, it was a great bonding, with a celebratory barbeque held at the end. But the highlight and main event was always the wheelchair races. A chalk drawn track, bragging rights at stake, everyone would full on go for it – even in the heats. At times I was worried there was going to be a huge bingle, but thankfully no lawsuits or hospital trips came about, just a lot of fun and some great memories made. Plus, I’m still tunnel ball champion to this day.


I loved these social events. From having a desire to reaffirm this whole life of mine, these were unknowingly a great way to reintegrate myself back into society. See at this time, I’d been living in a bubble of ill health and hospitals for near on four years, and friendships, well I didn’t have very many outside of a very tight knit group of friends (which were mostly Carers – something I feel like I’ve mentioned a million times now). And I was starting to realise just how important these were. Like my other friends, I’d only see them every few months or so, because reality was, everyone had their own lives and it was rather difficult for me to visit people in their homes. And as much as I know this will give him a huge head, consequently the most -important person to me was my ranga mate Carer. He was the one who helped the most with my social integration, and distracting me from the doom and gloom health stuff. Yeah this lanky, red-headed beatnik, nah can’t be that nasty to him, he really was a good bloke. He helped me, and I helped him; with some amazing mind blowing wisdom: or according to him, I was somebody to laugh at. Nevertheless, whatever happened, I had an amazing ally who began to not only take me out, but began to show me what it was like to live with a disability in society. Finally, I was truly moving beyond the safety of my residence (on a regular basis) – despite the life I was creating there. You see, he was a very experienced carer, and he had taken many people out in public – so he not only knew the ropes; he also knew how to make them work in our favour.


So these trips were my connection to society; but an even deeper connection is what I craved. Events were too much of a one way thing now. Or maybe it was simply part of my dumb more, more, more mentality. And so the progression goes, to one of my more dangerous lightbulb moments: eek women. Yer obviously I realised that I was getting a bit older so the whole old chestnut of wife, mortgage, and 2.3 kids came about. I suppose it’s a little bit deeper than my BMX fantasies or parties. But I had no idea if a chick would have even looked at me, I was hardly the makings of any sort of stable companion. And then, there was the whole disability train wreck thing, I never thought I was enough or anyone would want me. Insert sad face here. Even so, with my rampant male hormones…well I wouldn’t really call them rampant…I ended up falling completely and deeply and madly in love with two women around the same period of time. One, a housemate of my ranga mate. She made me laugh, and she just treated me like a human being, only I was never courageous enough to say anything or do anything about it. All I would say was – awe drool drool. The other chick was a Carer of mine, which made the whole thing a bit weird. Still, our friendship blossomed, we started to go out a fair bit, and one day I was dumb enough (and got the courage up) to say something. Woap. Lead balloon. To be honest, she took it pretty well, and she explained how she could see how the attraction had manifested but at the end of the day, it was a one way thing. I was okay with that, and we remained pretty good friends, but I do wonder how different the situation might have been if I was able bodied.

Who knows?

But also I can now see my mistakes, I was making it all about me. My number one interest had become progression into some sort of normalcy (and success). Clearly I was getting ahead of myself, particularly with the confidence boosters that running the events gave me.

I thought I could do anything (which I couldn’t), and undeniably I couldn’t make someone love me.

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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