With all my projects and pursuits now, it was kinda nice for people to take an interest in my life beyond my illness. Previously all the advice, the recommendations, and that someone who always knew of someone that got better from something similar; man that was getting pretty bloody old. But in moving on from just ‘the patient’ I also found it hard to distinguish interest from friendship – to me people were just people – especially with the Carers. In fact this was very much a theme amongst the first group of Carers themselves (with many blurred lines and many professional boundaries being left behind), and all was a relatively level playing field. We were like one big happy family, only in reality it was a different type of family – happy, happy, chat chat… hey can I take a piss!? And then to go a little deeper in all this, despite my few outlets the fact was still that almost all my friends now were support staff, yet we wouldn’t do dinners or gatherings, and very few people genuinely challenged me (like in a take a bullet type of way). And at the end of the day this was their job. I was their job. So can you kinda get the gist? Look I really did want to and tried to look further, but I found it extremely difficult to make any new friends beyond this group. I guess it was that I’d become somewhat institutionalised, and that my routine was how I survived (only allowing me to see my friends for short sweeping visits, and that’s if they visited at all). Also I was now a hard work friend (for my friends), so I wasn’t the kind of person you could just call up for a quick beer anymore, or to even duck out for pizza – again everything in my life felt like a space shuttle launch.
So this was the conundrum. I was always surrounded by people but often very lonely, and I craved real connection away from this all-encompassing world of health. All I needed was a real friend I guess; a friend to help shift my focus and you know just to dag out a bit (life was just way too serious). I didn’t know how to achieve this (without desperation). And I mean sure heaps of the Carers were pretty cool but most things were still health focused, and I didn’t quite know how to navigate it any other way. And knock off time was always knock off time hey. Then with my friends; most were now busy with their own lives, their own careers, and it seemed like everyone was getting married and starting a family. Yet for me, I felt way out of touch and the gap widening. Oh alright I’ll admit it, I began to wonder if there was even a place for me in this world at all, well apart from providing someone with a job. I even felt like I was forced to master the art of small talk, and with absolutely asking very few questions – as nobody likes like an inquisitive patient. Then maybe this just transpired into my everyday life – I was always on guard. I thought I’d never truly know anyone again. Only then this tall lanky redhead Carer walked into my life, and what struck me was his authenticity. He didn’t respect or treat staff any different to the residents (well apart from the staff he clearly hated). Nevertheless it was clear that people with a disability were, like his colleagues, people, deserving the utmost respect for both their unique differences, and also for the shared fact of their humanity.
Anyhow we hit it off. We’d chat exactly like a couple of larrikin blokes would – because that’s what we were. Disability was just a thing that we both looked past. In fact I was beginning to make some other awesome friendships too (despite the ‘work’ thing) as I think those who were making the effort to know me, they were realizing that I was just some dude on the level – only my body didn’t work. So yeah this started to open up a much clearer definition of friendship, but really did I need it? People are people after all. So this really began to blur the lines between caregaier and friend. The basis was a mutual respect and then everything just grew from there, plus from a ‘care’ perspective it was very important to have ‘friends’ in tune with my abilities and restrictions. For instance an example of this was when I go up a steep hill; I would flat out lose my breath. The weight of my own chest was just too much for my weak chest muscles and diaphragm; hence I couldn’t breathe. This is shit I’d need someone to know. And let’s just use the example of a long steep hill, well I just couldn’t go up it without a struggle. This sort of stuff was just hard for other people to understand. So as you can see I needed familiarity, it was life preserving, but this relying on other people (Carers) for everything was also difficult. Especially when it lead to outwardly expressed impatience and frustration at times. Still sure I made the most of it, it was been a real help in allowing me to live my life.
Anyhow we all started going out heaps – but back to my tall lanky redhead mate, he was my regular escape. We would be out on adventures all the time. Yeah and it might even sound a bit strange but I didn’t know the city of Melbourne that well, so tour guide in tow, we would catch a taxi into town and with absolutely no agenda at all we’d just walk for hours! We would walk up and down, left and right, through bloody who knows where; until old mate finally hit the wall and would say “you push yourself – you fat fuck!”. But really, it was such good fun, just immersing myself in community. We wouldn’t go out for lunch, we wouldn’t see a show, we would just walk and watch people – and it was a great way for me to adapt to people’s reactions to my ‘health’. Bloody hell, thinking back we had some really funny times, you know just making light of the circumstances that were there. For instance, one time I’ll never forget it; we got our hands on a fart machine. Now – I don’t know how much all you guys know what it is or what it does, but as it’s name suggests… pfffttt!! Yeah so obviously it was an electric speaker that when you press a remote control it would make various obscene flatulence noises. Ha ha freakin ha. So, what does knackers do? He decides to put the fart machine on the back of my chair and wheel me up next to complete strangers, and completely unable to move away he’d stand at a distance and set off this flipping fart machine. It was hilarious (and yes I did concent). Then, as you can imagine, a poor defenceless disabled man in shops sniping innocent customers with the bellow of an anal orchestra. Oh my golly gosh. I’ve never been quite so embarrassed and in fits of laughter all at the same time, the response from the people was just down right priceless.
Crazy crazy crazy. And this was just how our friendship kind of went. We were just two young blokes looking to hang out and get up to a bit of mischief here and there – it was just what I needed. The experiences we were racking up were just unbelievable. It was weird, i never realised how much of an ice breaker or conversation starter being disabled and sitting in a wheelchair could be. Or the places it can get you. I mean, I suppose I looked fairly average on the outside it’s only I couldn’t move, and now being out in public a lot more often random people would just come up and start talking to me, offering to help out, or to show some empathy. Of course there was the awkward wanting to shake my hand thing, to which I’d be like, ‘holy shit mate, I just can’t move’, but at least people were looking past the disability I suppose. Or on a number of occasions I even had random chicks come up and sit on my lap, or another bloke trying to give me $50 dollars on the street [to help me out], yeah just heaps of things like that. And strangely, I was becoming very accustomed to being the centre of attention: I mean, for instance every time I’d go to a pub (it was usually a massive rigmorale to get in to the joint), however, when i’d finally make it in, so many people would come up and pat me on the back, I even had people saying “hang in there mate, you’ll be right”. It was quite nice. It was a real blend of sympathy, curiosity, and respect. And above all,respect was what shon through the most, as people really appreciated that I was just out there having a go. Actually so did I.
But to again talk about blurring the lines, some things in life, I was in a way forced to share stuff with people way way beyond personal – and that’s looking beyond the personal care aspects. You know it was almost like a parole officer peering over my shoulder 24/7. At times I was even sharing the most intimate of moments with complete strangers. Like from people overhearing a personal conversation to watching the DVD of my mothers funeral in the lounge with another Carer (who was very gracious I must say) – overall it was some preety weird shit. My life was almost like an open book where anybody could take a peak – in fact maybe that’s why and how I can write this stuff now. I was flat out being programmed to be an open book, and I just found any secrets so hard to hide, and needless to say there were still some very awkward moments. And nothing quite encapsulates these blurred lines more than my first visit to the cemetary (to visit my Mum). Emotionally devasted could be the best way to describe how I was feeling yet I went the with my red head mate who I’d barely known for six months. I went with my Dad and my Brother as well; and that day as I sat there staring at my Mothers grave I felt such defeat. I hated my wheelchair. I hated my life. My Carer mate later told me that he didn’t know whether to comfort me, to do his job or to just stand back. This really was one friendship built on rich raw authenticity, and I do acknowledge his humanness here. Well played. It went both ways.
Nevertheless, all stories aside, this friendship opened up the possibility of more deeper relationships, it showed that I was trustworthy and above all on the level. I really was an equal.