Despite what I may or may not have said thus far, throughout these early days in care my head was really in a spin – it was still the identity thing. I didn’t quite know what I’d become. I mean obviously I was still human, that’s for sure, but I certainly didn’t feel gifted or privileged anymore. And this hardcore disability thing, heck it was all news to me: one minute I could do and have whatever I wanted and the next I was physically bankrupt. In fact, I was quickly finding out all the things that I couldn’t do (or have) – to shower in private, to dress myself, scratch my own itches – but just about the worst was my inability to live at home. Actually in a way I felt like my new residence type-cast me into someone that I was not, or trying not to be; I was now someone’s job.
Is this what I’d become?
Now I felt a lot of confusion about living in a workplace, like was I now a job or an individual free to interact? Would people see me or just the tasks relating to me? Can you even imagine it?? Still it was what it was, and this place was a roof over my head and I tried to flow with that. I tried not to think of my shortfalls nor the people around me as employees – truly this was a pretty delicate balance. Even so, every day there seemed to be a new challenge; I mean mostly it was good but gees I had some horror days too. Bad health, an over-inquisitive staff member, a fire drill, really it could be anything – but the fact always remained that quite often the staffing determined what sort of day I had. In time I slowly got used to all of this – continually being surrounded by management, employees, and the odd agency staff member who wasn’t even fit to sweep the floors. Or being surrounded by people, no matter if I felt comfortable with them or not, at times I was literally forced to share part of my life with them. Or when that new staff member would start and almost look shocked by what I went through in everyday life – hmm actually I never got used to that one. And remembering this was 24/7. Yet the truth is there were definitely some good times here too, I guess my negative overtones come from comparing a life in care to that of one in the big wide world – it is vastly different. Then to the future, well the reality was that I was staring down a barrel at living out the rest of my days here. Yep this was it, and this scared the shit out of me. In fact, it’s weird how I now craved what I once always had, and took for granted; living at home with my Father. For sure I would dream about this, to make it back there one day, to make it out alive.
But all that jazz aside, as I said above, really the most important component was the staff. And seriously the role of Carer is a pretty hard one to describe. They could be best friend, parent and enemy all rolled into one. Only to give you a bit more perspective, I’ll put it like this: what’s quite weird is that their job is not only to help people with their tasks of daily living but to also know the intricacies of their lives. When they get up, when they eat, when they shit – but in time that even extends to knowing what tv show they watch at what time. I mean it’s not protocol or anything but this is just what happens. What’s more, I actually had a conversation with a Carer about exactly this. She said she could name anytime of the day and tell me exactly what any of the five residents (in my house) would be doing, and their plans for the next hour or so (really routine was king around here). So as you can imagine this whole disability and ‘workplace’ thing took a lot of getting used to, particularly to maintain self-determination and dignity in the process. And what I found to be another weird thing: as everyone would finish their shift, they’d simply go home whereas I’d just kinda stay. I suppose I could compare the feeling to a bit like detention in high school – only this was my life. And speaking of life, for the time being I had little choice but to soak this up, and my little community. You know it was okay, particularly as I was starting to develop some pretty dynamic interpersonal relationships, but most were with my caregivers. However this also began a pretty complex layering of my life where one minute my Carer and I would be chatting like old friends and the next they’d be chucking my cock in a bottle to take a piss. Or my new ‘friends’, reality lay in having them shower me; or even sometimes having strangers tuck me into bed at night, and then waking up to have whomever may be working roll me over. This was my residence. The complete lazy man’s spa and sauna, which was also very humbling – or a slap in the face.
Now I can see that to most this could be a total nightmare, but for me (being in this mess) the real challenge lay in seeing what was beneath and beyond. So really it became more a matter of what good I could pull out of this scenario to take me to the next level? Or maybe even learning to love and enjoy what the universe had just thrown at me? I mean this residence and workplace was teaching me a thing or two about patience, empathy and compassion. I now had a much deeper understanding of connection, and I was also learning that people are just people (no matter what their circumstance). It’s only by contrast my outward opportunities were always narrowing, and where it was to stop I did not know. So in short the house backed me into a corner whereby I began searching for my own truth and healing. Day by day I was further immersing myself into this world of disability, which shattered my ego in some regards. I mean my house had me living my shortfalls and inadequacies, and part of me was also scared shitless and daunted, but part of me curious. Like, in life how many opportunities do we ever have to find out what we’re truly made of? Well this was definitely one, hands down. So very quickly, my residence represented the gaining of wisdom – one where I was forced to grow up – and one where I was meeting extraordinary people that previously I would not have been exposed to. Actually this is where I began to look at the other residents for guidance (you know looking at what they had done), and many who had had great and painful experiences, many more so than me. It’s only in their era, most were viewed as less than equal or unable to make decisions for themselves – and as peers this is where my stomach quivered. Is this what a life in care looked like? Was this to be my future? Well thankfully in my era things seemed to be unfolding a little differently.
Within several months I’d even say life appeared to be quite comfortable – well apart from the occasional agency staff. Yep, my routine was spotless. However, then a curveball was thrown as an undeniable family vibe began unfolding. Actually initially this was pretty cool. It’s only whereas a family often has three to five members (which in itself can have its own complexities), my more intimate group consisted of about thirty or so people. This included Carers, other residents and their families. And this family vibe, hmm what else can I say other than it made me feel more worthy (like more than a job). Yet within such a mixed group, in time, there were clashes, there were bonds built, but beneath it all I realised that I had no safe haven. I even remember watching two young girls go ‘fat beef’ in the kitchen. OMG. Truly I didn’t quite know what to do or say, and on the inside I was more confused than ever. As they say you can’t choose your family. So the identity search continued, and with that I began to notice that whatever I did there was always someone who had an opinion on it. Especially if that something highlighted my immaturity. To emphasize this fact further, then there was this great big bloody grand opening party. People everywhere, such an achievement, met some politician, blah blah blah, and I completely blew it. Yep I got shitfaced. About ten beers down my feeding tube later, and thinking that if I wore someone else’s nametag no-one would recognize me, crikey I was still the daft idiot that I was before. Hey I never said I was perfect. But I kinda liked this, the familiarity with who I was before – but my new family didn’t. I mean what I should have done was take responsibility [of my health] but I was too busy being stuck in a perpetual cycle of wanting. Wanting my old ‘bogan’ back. I wish I knew that my world could become whatever I dreamt it could be but I took the path of least resistance into fear.
I mean no matter if this was a workplace or a home, it was my perception that would ultimately make or break me. It’s only at this time all my thinking was, ‘could i ever be satisfied with this life?’ Having a Carer on my hip wherever I went wasn’t helping with my confidence either. It was like rent-a-friend. And ambition wise, all i could see was that my housemate had made it to page 16 of the paper – could I live here forever? Like I wanted different things: moving home, having a family, world travel; front cover of the paper; this is what my heart desired. I’d even look at celebrities with their big achievements and think like wow, I’d totally blown it! I craved to thrive and to make an impact. Look maybe not be Ghandi or anything, but you know, something. Now keeping these thoughts in mind, this is right where I made my most important of discovery of all. By this point it was obvious that I’d chosen life over death. Death was too easy anyways. So despite always longing for change, at least I still had a shot at it. I had a shot at llife. Yet life in the foreseeable future wasn’t looking all that straightforward either. Like vulnerability wise, I thought this was at its peak and slowly on the decent. I mean my whole invincibility wall had been crushed, that wall of certainty & safety that ‘some’ people put on (myself included), only now, I was completely transparent. Some dude in a wheelchair with an obvious struggle at hand. Some dude in care with no place to really call his own. I couldn’t even hide behind material wealth or alike, or perceived successes, at this point I had bugger all – just a flicker and a twinkle in my eye.
Amazing writing as always, an unbelievable insight into another person’s life. 💕