To help get a feel for my now semi-structured semi-free life, and I guess to make the whole thing work, there was a lot of people. Oh crikey there was a lot of people. Some would help and give, others would take away, but the really really good ones would create synergy. It was always the people who made the experience. At this new place I had a core staff team too (and they were reliable, awesome and provided the structure) but there was always some random moron flittering on through who could ruin things in a moment – so there was definitely an ambiance of the Big Brother house here. Hence my home was a melting pot of personalities, opinions, egos, agendas, and even cultural differences. Also one person would be happy to do something (or most) yet others not at all, then combine that with the needs and wants of the people that lived there (as other residents were slowly starting to move in), to then add in some needs and the wants of the staff and management; it was like a pressure cooker simmering one minute and boiling over the next. It could be heaven or it could be hell. Short staff, over staffed, changing medical needs, bureaucracy – it was a constantly evolving thing. Even in these early days it was like a world within a world. But again it was the people who made the experience. They were the most crucial link in making this place a home, and in particular the staff’s commitment to my independence. It was rather amazing to see just how dedicated this original staff team was.
In it I worked with Mums, I had drug addicts look after me, then throw in a five star French pastry chef, and even some total assholes too (who would commonly be the relief staff) – I tell ya Caring is a really mixed bag. I tell ya I was meeting people from all walks of life. Predominantly we smiled and had fun, and most cared, yet others would think that Caring is ‘just’ a job, you know treating your body like a slab of meat on a production line or something. In fact there were many expressions of bonding, laziness and testing the waters around this time. Blimey one bloke even sat down with my brother and I to watch the rugby, and on shift just started drinking beers with us. All I could do was think man I want his job. Though on the other end of the scale I remember two female Carers having a full on screaming match (chest bumps and all) right in the middle of my kitchen. Man these two hated each other. As I said Big Brother house. And then one or two new faces would arrive which brought about more territorial type stuff – as the residents didn’t want to work with the new unfamiliar newbies, and/or maybe the original staff team thought they might threaten their jobs or some shit like that. Nevertheless the staff would always come and go, the faces would change, only mine would always remain. It kinda felt like everybody else could and would move forward but I was stagnant. So new house and all it was still far from smooth sailing.
Actually something I haven’t mentioned yet (in regards to staffing and their interpersonal impact) is that living in this sort of environment, privacy is one of the luxuries you tend to forego the most. It’s because I was always living my life through another person (as to do anything physical it would always require another person). Now that could also mean anything from cooking to cleaning, to personal care to toileting, or as some of you may have also experienced, having a complete stranger shower you. This could then result in having people know and gossip about all the intricacies of my life; a mole, a sore or even tattoo. Heck I can’t even imagine how many people who have discussed my life and choices without my knowledge – at times disguised as ‘hand-over’. So yeah, I was having all these ‘strange’ people perform the most intimate of tasks – I guess that’s what I was getting at yeah. And at nights, some people would give me a piss (bottle) before they’d even seen my face (as I was wearing a mask). Just weird. It was like I’d lost my power of being an adult human being. Actually to further advance this thought, after some time, I was never really alone. My health required babysitters. Plus I had a number of respite users stay for a few days here and there, so there was always someone looking over my shoulder – or more accurately put someone in my space. I never had any real say who I lived with..
Now whereas with the staff I’ve been quite general, I think it’s much better to be specific with the residents. I lived with three older ladies. First was a lady whom I met ever so briefly back in the Respiratory Centre respite wing, and all I remembered was that she was super shy and literally never said a word. Initially she would come and stay with me on respite most weekends – then for better or worse she moved in full time. She was aged fifty-five; a fundamentalist Christian with muscular dystrophy, who obsessed over butterflies, and had the intellect of a fourteen year old (and I’m not trying to sound horrible with that). Look she had a got a heart of gold, or a selfish heart of gold, but seriously her life had been very sheltered and deprived – and we never had any common ground apart from disability. It was such a shallow relationship. Now it is just a theory here but I believe some people who have been disabled their whole entire life; basically they have their own independence and personality smothered by the medical/care system and family – I think this was the case. Sincerely I’m not being patronising either; she did have the mentality of an adolescent; and she’s probably as selfish as one too. Plus she’d eat while sitting on the toilet; she’d always be going to the movies to see children’s flicks; she was infatuated by the word ‘free’ (and would redeem absolutely any offer) and so much general conversation just went over her head (news, sport… but most of all anything to do with sex). She was oblivious to the outside world. I’m still not sure why but some people really loved her… whether it was her innocence, or simpleton mentality I still don’t quite get it. I mean I didn’t hate her either; I learnt to tolerate, okay maybe even like her, it was just less frustrating that way. Just saying it as it is.
The second, more permanent resident was another lady also in her fifties, and she lived with me for about a year or so. It was obvious that life was hard for her. I mean before she became ill, from what I’d heard she was a charismatic strong woman – successful professionally, revered by friends. Apparently she was even the linchpin amongst her extensive friendship group. Only when I had the opportunity to know her she was at the end of a fight with one of the most devastating diseases you’d ever hear of, Motor Neurone Disease. This obliterated her self-esteem. I didn’t even get to know her or barely even talk to her (as she’d lost the ability to speak), and despite the fact that she was literally living twenty meters away from me, it was as if she was too ashamed to leave her room. I really felt for her. I think I only saw her outside of her room two or three times in that year and a half period – it was oh so sad. Yet she had the support from the most amazing bunch of women (from her golf club), it was a true display of deep friendship until the day she died. They even threw one massive party for her. Then, when she passed, it further demonstrated to me that the journey’s here are vast. That some people come to die and others to live, in fact I was constantly watching some good friends wither away and die right before my eyes. Yeah already I was finding that this place could 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 was fitting in. And I knew it’d never be home.
The other lady I lived with was a seventy year old from Egypt, again with muscular dystrophy. She was a classic, and worldly. She kept me sane sometimes, and was a little protective of me too. But the thing I really loved about her (apart from some half decent conversation) was that she was always whinging in Arabic – it was bloody hilarious! That’s one thing I will always remember. Oh yeah she loved to whinge about the staff (and sometimes with good reason). But hey I suppose she was just tired of Carers, as much like my other housemate she too has been disabled her whole life. I mean I’d had to deal with ‘care’ for only a short time by comparison and I’d had my moments, so I could totally understand. Then as for her interests, well she was a pretty simple lady with only four main passions that come to mind – Sudoku, Scrabble, Deal or No Deal and her family. She really loved her family. And the thing I’m really sad about is that she died. Look I suppose it’s not all bad, she was in her seventies and she was really starting to suffer a lot (she’d been really sick all that year), so as everyone kept pointing out to me she was finally at peace. Nevertheless I’m still really surprised by my response when it came to her passing (and to death in general these days) – it was very nonchalant. Actually I think this all started after my Mum’s passing, I just don’t batter an eyelid anymore, it’s almost as if I’m heartless – which I’m not – I’d just like to make that clear. Maybe it’s also got a lot to do with where I’d been living too (and the different hospital environments I’d been), people passed away all the time. So I’ve sorta always keep myself at arm’s length ~ I just don’t get emotionally involved. It’s Sad.
Anyhow from this house full of strangers, patience is the thing that I had to learn – and acceptance for ‘what is’. It’s hard to even describe how long I could 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 had to scratch an itch. I even had this contest with myself (when sitting outside) to watch a wasp crawl up my arm. Or being okay with being left at the kitchen table (completely unable to wheel away) and having other resident’s families chew my freakin ear off. In fact I wish everyone could experience disability (only for a short time) just to realise what it actually takes. The shortfalls, the isolation, the advantages, the guts, the realisation of real empathy – and that life is a gift no matter what the shape or form (yes even my butterfly loving housemate!). Also it would be to experience the restrictions to then appreciate freedoms. Yep gratitude. I mean everyone is flawed, everyone is a work in progress, and really it doesn’t matter what your body does as it’s actually your heart that matters. So even when all feels lost, and the future looks hopeless, it is actually the journey that keeps your spark. This is the light that cannot be extinguished.
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 still seem to have each other’s back – well most of the time.