My health predicament deprives me of many things in life, and to be totally honest one of the worst things is my inability to live at home. In fact because of my disability it’s hard to even visit the place that I call home, so instead I am subject to community living.
Now to be specific I live in disability supported accommodation (well that’s the technical term), only in reality and in layman terms, it’s much more like I’m living in a mini nursing home (especially nowadays). Then, somehow pair that definition with the ambiance of the Big Brother house – yep now that’s exactly what I call ‘home’ at the moment.
It’s a melting pot of personalities, opinions, egos, and even cultural differences.
Then, combine that with the needs and wants of the people that live here, to then add in the needs and the wants of staff and management; it’s like a pressure cooker simmering one minute and boiling over the next. It can be heaven and it can be hell.
Short staff, changing medical needs, bureaucracy – it’s a constantly evolving thing yeah.
It’s like a world within a world.
Anyhow this ‘home’ that I speak of, it’s a residence with four separate houses. Each house is maybe a little bit bigger than a normal house, then there’s a corridor that links them all together. Further, each individual house has 5 bedrooms, two lounge rooms and an office / storeroom. Then on-site there’s also an office block too.
The service has been specifically designed for persons with chronic respiratory conditions and high-needs care.
I’ve been here for 9 years now. Actually I’m one of the original residents from when this place first opened. And with that I’ve seen many changes over the years, in particular, I’ve seen it shift from an outlook of self-determination for those living with disabilities to now one of an over-managed bunch of folk, who now have a body corporate obsessed with covering their asses. However in a weird way I do think the residents have allowed this to happen.
When you’re sick and getting sicker, bureaucracy isn’t really a priority.
But it could be worse.
Before this I was bouncing around in-between hospitals, and with absolutely no self-determination at all – I’d have to almost eat, drink, and shit on cue. You see I ended up in a hospital ward for 3 months (where the nurses completely ruled the roost), and in this place, just to give an example, I was not allowed to stay up longer than 6pm on any given night.
I even once had a bet with one of the nurses (which I won) to let me stay up late one night – it turned out to be the first time I’d seen the night sky in months.
As part of this journey I also met all of these, who what I thought at the time, unusual people. I’d just never experienced people in this type of catastrophic physical condition before. In fact there was this one guy who had a wheelchair bed, which was then surrounded by mirrors so that he could see, and when having a conversation with him I never knew where to look – then I lived with him.
It was also hard to know what to say.
Actually disability [as a whole] was quite confronting for me at first because I guess I just didn’t understand it, and I felt awkward – lucky I’ve always been a somewhat free thinker. Discrimination was never my intention either but I was scared. I just thought a person was their body when in reality they are their mind. Obviously I was still yet to learn many things in life.
So nevertheless, this motley crew from the ward (myself included), we all moved to these new houses – the ones where I’m at now. At first it was such a sense of relief and excitement. We (us being the original residents) even got to set up the houses, furniture included.
But again it was the people who made the experience, especially the staff. In fact I’ve come to believe that it’s the people who make any situation great. I’ve worked with mums, I’ve had drug addicts look after me, and even some total assholes too – I tell ya caring is a really mixed bag. Together with, oh man I’ve heard some amazing stories and made some great friends too.
Overall I think I’ve been very lucky.
There’s been many fun times over the years. From sports days to barbeques, concerts to drunken sprawls with my carers – yes I’ve been lucky enough to still experience a social life. I’ve also learnt that most people care – but then again there are those to who caring is just a job.
So it can still be far from smooth sailing.
Much like as I mentioned earlier, my health predicament deprives me of many things. And living in this sort of environment, privacy is one of the luxuries you tend to forego the most.
Now that could mean anything from personal care to toileting, or as some of you may have also experienced, having a complete stranger shower you. This could then manifest into having people know and gossip about even the smallest intricacies of life.
I can’t even imagine how many people who have discussed my life and choices without my knowledge – at times disguised as ‘hand-over’.
Patience is another thing I’ve had to learn. I can’t even describe how long I can wait for some things daily, and now I even consider myself able to out-wait anybody. I can sit in silence for hours. Can you even imagine feeling like a cup of tea, and then without distraction sitting for an hour until you have it?
And don’t even get me started if I have to scratch an itch.
So yeah these are some of the things that can happen when your life falls apart. Then combine that with being flung into a house with five complete strangers (all bidding for the staff’s attention), it can provide for some interesting times. A house of misfits, with a mere common ground of disability, but we all seem to have each other’s back – well most of the time.
The journey’s here are vast.
Some people come to die and others live, in fact I’ve watched some good friends wither away and die right before my eyes. It can be at times a very emotional and intense place to live – a strange complexity of raw real intimacies.
A microcosm encapsulating life and its struggles like no other place on earth.
And I’m not sure where I fit in.
And it’ll never be home.