With now some independence, I began to look upon the Carers very differently. Once upon a time I looked at them as entertainment but now I could clearly see the job aspect. I wanted to get shit done and they were my avenue. What was weird though, some of the Carers also saw me as entertainment, so it was a weird dichotomy. The complexity in these Client/Carer interpersonal relationships were indeed one of a kind. Nevertheless, I was trying to move beyond them, and to chase down some of my own dreams. But ‘moving beyond’ again had a few hiccups, like I was now confronted with these weird stereotypes relating to disability. One of these was that I could no longer achieve what an able-bodied person could, then another, I no longer had the same access [to community] as others; then there were several more too. But the one that always puzzled me was this thing relating to cuteness, you see some people look upon the disabled as babies, seriously. Now I have heaps of examples here but the one I’ll go with is: one day one of my fellow adult residents was sitting down doing paperwork, then one of my Carers loses her shit saying ‘it’s oh so cute’. I said ‘what an adult doing paperwork?’ I mean I always felt weird about these infantilising stereotypes, and in a way I wanted to bust them. myself Or as a mentor later said to me, ‘it’s the truth that heals’, and for me this truth started with being seen differently. Not to be labelled, much rather to be seen purely on face value. I just had to work out the means?
In fact, it’s quite interesting how we all identify with ourselves as something – a mother, a lawyer, a ford driver, someone with inadequacies – particularly before being a human being. We love labels. But is it possible to see someone beyond a label, to see their true essence without judgement? This was my dilemma.
Even so, reality was pretty brutal, like how could people see me before the wheelchair? I found this really hard, the shift in my outward identity, especially as I was now participating in the outside world a lot more. And being a quadriplegic, often sitting around waiting, my focus was regularly on all this lack. So, it was like Amy Purdy says, ‘our borders and our obstacles can only do two things: (1) stop us in our tracks, or (2) force us to get creative’, and for me this was obviously creativity. To creatively shift my ‘label’. Then, after several weeks of deep thought and soul searching about this I finally discovered the self-help section in the bookshop (well metaphorically speaking). Yep, I was looking for my magic bullet to rise up beyond my disability – deep down I was certain this was my task. And the book that fell at my feet, possibly stemming from my current interest in Buddhism, it was a title from renowned author Deepak Chopra. So I devoured his book The 7 Success Principles in just a few days. It blew my mind. I felt so empowered, almost like I could achieve and overcome anything. Plus. it began my ‘Intellectualising’ journey. And… just like that it was New Years Eve. I was watching the fireworks from Elwood Beach, and I had quite possibly the most profound and meaningful conversation of my entire life (this book brought up a lot). It was with my Carer mate who I also attended the Buddhist Centre with. We sat away from the crowds, had two solid hours of intense dialogue, where I pretty much left my heart on the pavement. The general gist was would I get busy living or get busy dying, and as my tears glistened off the moonlit bay I was sure that I was going to die. Even with creativity, I didn’t think I could pull myself out of this one. Even in spite of Deepak’s inspiration ringing in my ears too. But eventually it came down to one thing, could I risk failure and could I handle it?
But what else could I do? How else could I move forward? Like really I had no guarantees here. Plus, on that fateful New Years Eve, it was also put forward to me that there was this very weird opportunity unfolding here, whereby my circumstance seemed to be a perfect ‘against the odds’ story, or at least the start of one. In fact, I was always aware of this ‘story’ component but it was still much more important for me to simply live. Like I was 23 when I first got sick, and you’re right, it does shatter your goals. Like at this point, my only real goal was improved health – but then again there was all those ‘things to do when I get better’ lists that I wrote way back in hospital – so who really knows? Only I wasn’t better, and truly I wasn’t sure if I could achieve any of those things anyhow. Still, for me, it was almost a matter of being forced to move on, or in even simpler terms to ‘get busy living or get busy dying’. Sure it’s a harsh reality, only being so blunt about it all, it helped me make my choice. And I know personally I didn’t want to be seen as a quitter by my friends and family, nor did I want that to be my legacy. Hence I’m not saying ‘moving on’ was easy for me (I was still in exactly the same boat whereby everything was medical routines and took ages), and the whole ‘moving on’ process took blind courage. But then I didn’t even know what that was either? So for me it was all about small victories, just focusing on that one small thing and then I’d move onto something bigger, then something bigger. Well this was sort of what I hoped. And in another regard, I really wanted to connect with me again – to be content with me again. Then one day I got my chance, this was to be my turning point.
Now okay it might seem quite superficial, but I got to meet my rugby team the North Queensland Cowboys, and it showed me what was possible. It was then that I realised no matter how shit my disability was – really it did opens doors for me. Now not to use a disability as a bargaining tool here (which I sorta am), but I found that people got joy from seeing someone with a disability have a go, and most were prepared to help out too. And it might sound weird but people think you’re totally amazing when you do just the simplest of things. So when you actually do something cool the amount of respect you gain is full on. And this is sort of what happened with the Cowboys. The whole thing was organised by my Recreation Coordinator; she contacted the club, told them a little about my story, explained how I lived in Cairns and got right into the rugby (which I did), and before I knew it I was meeting all the players in the dressing rooms post game. I felt just like a Make-a-Wish kid. It was such an awesome experience, and the players were so welcoming, particularly the General Manager. And what I was surprised about, and I’m by no means a small guy, but gees these guys were bloody huge. Like on tele you can appreciate their athletic prowess but up close they’re bloody monsters. Yet after chatting for a while, I’d say gentle giants. Man, it was so cool hanging out in the player’s rooms, I even got to meet most of the Melbourne Storm too (the Cowboys opponents on the night). My only regret was, at the time I only owned a State of Origin jersey, so I only got one signature. I felt really bad about this. I mean a lot of players were asking if I had a jersey or ball to sign – and really that would be a freakin sweet memory to own today! Still, this whole thing was a pretty steep learning curve; amazing things were definitely still possible. And I also learned that writing a simple letter can really get you places, and that there’s never any harm in asking.
Hrmm, could this be my new creative outlet? Is this how I could achieve some goals and dilute my ‘disability’ label??