Episode 39: Boundaries

New routines, the freedom of times, and of course being surrounded by genuine human beings again were undeniably the greatest advantages of my new residence. In fact these early days at the houses were a little bit of fun. Everything was new and exciting too, and we (it felt like a big family) all had the job of setting up the houses. Choosing the furniture, buying all the cutlery, the plates; and gees I even chose the freakin vacuum cleaner. Big mission. But apart from the settling-in bit, and apart from the decorating bit, the houses were also fully staffed (as in for a full occupancy) so at times I had three staff to myself – haha it felt a bit like having paid friends to hang out with. And yep agreed shocking resource management. Though ‘finally’ I was getting stuff done, and I felt safe, and I had people willing to listen to my crazy ideas. These were my days. Anyhow to pass the time and to give my staff something to do (well other than just boring organizational stuff), I began cooking these crazy elaborate meals for everyone using the food budget – as you do – and even though I couldn’t eat. I mean justifiably I really do enjoy cooking, and boy this did give me an interest in researching all the recipes, only management didn’t look upon this quite so favorably. Oh well, I guess this was my way of testing the water and breaking the boundaries. And it did create for a really cool bonding experience.
But sadly these efforts didn’t take me too far towards happiness. The transition was far from smooth sailing; well specifically as I was now institutionalised. Trust me living in a hospital for over a year really does change you. I now lived for safety and routines. I mean initially there I was with three staff, a million and one opportunities to go out, but almost scared to do anything – well apart from cook. It was so damn weird. Actually one fear I definitely had was if someone [out in public] would ask what happened to me, and honestly I just didn’t know what to say – I was still very confused myself. So I hid. And as a result my daily routines stayed very much the same as in the Respiratory Centre – well until I got used to navigating some freedoms again. Yet with that I also realized that some of my routines would never change; for instance my medications were now always taken at the same time, plus I’d always have to fit in with the needs and desires of those in the house. And sure there was still some very normal personal care routines here that everyone has, but it just felt very different. You see to make things easier (with my level of disability) I swayed into a structure whereby I did the same thing, in the same way (even to the finest of little details), every single day. I found this helped the staff, and my need to explain everything – but quikly any fun was being sapped from my life.
So what this move, the reality was actually a blend of structure (systems) and freedom – it had to be – as yes I did start to go for walks down by the nearby creek (as a hope to build up to bigger adventures) but I’d also had to toe the line with my massive care requirements. And my mental battle, it was that I’d never have the same independence as if I was doing everything myself, and for every single little thing I now relied upon somebody else. I was a slave to a system, only what was this system? Well most care facilities run on the notion that staff is money, thus most are under-staffed creating regimented routines and wot not (for instance in an aged care facility). Then in addition, most other facilities [especially those dealing with the severely disabled] have staff taking total control of the daily activities – whether it be simple personal care issues or a routine outing – or this could be due to a number of cognitive issues. Anyways ‘my house’ was run on a completely different philosophy; one where the residents had control of their own lives, and then direct the carers when and where they’re needed (well this was the original intention). Also this could be partly because everyone at ‘the houses’ is said to be of sound mind [but I do wonder sometimes]. And ‘our’ staffing ratios were a lot higher due to the ventilators and people with high-need, high-dependency medical issues.
Anyhow all my confusing rambles aside, as the weeks then months began to pass, quite often I’d find myself mooching around the house in a quadriplegic prison. So sure I may have had a renewed sense of freedom but my self confidence was through the floor. I believed that in my current state that I provided no value to anyone, well apart from my existence simply providing a carer with a job. Agreed bad mentality. You see it seemed like my health was again providing a brick wall forward; in fact I had some pretty dark times here and some very lonely nights. At night I’d often stay awake for hours just starring at the beautiful curtains I’d chosen for my room lol. But seriously, I was devastated by how shallow my existence had become, and that my dreams seemed to be moving further and further away. I even began smoking dope again (to kill my pain and hide my shame), but all I ended up doing was having countless awkward moments and paranoia. One day I even sat around with two devout Christian types, absolutely stoned off my face, thinking really what’s the fucking point – when you numb one thing you numb everything. So sure the pain was gone but so too was any chance at having true pleasure. Then a few very small day trips unfolded, which frustrated the hell out of me, then one day I even went out with some of the other residents to this retired racing horse farm. And literally when we got there I just sat and watched everyone eat lunch for an hour and a half. OMG.
I was such a black sheep, I just wanted so much more out of life then what it appeared disability provided. Scrabble games and Christmas cars lists didn’t quite do it for me. And with that I was always testing the boundaries, mainly to work out who I was and what I was capable of. I knew I had to be more than my four walls. Much like going out was a balance of discipline vs regret, and in doing so I also found myself saying yes much more. I even began planning in my head, and specifically around what I’d observed some hard core veterans in the world of disability had achieved, it was really enlightening to see how some of them dealt with it. I looked at the lady that I mentioned in the iron lung: now she would go out once a month on her day bed to visit the beach. Well, it wouldn’t only be her, it was her and two carers in tow, but it also gave me an insight at what was possible when you put your mind to it. Surely I had met some of the most amazing and strong willed people you could ever imagine. This was also exuded by an old old lady (who was easily seventy) whose arms did not work one single little bit., and yet could walk She had contracted polio in her teens. And hearing the stories from her mouth made me feel so inspired, especially when she spoke of raising her two sons with only her feet. I could just picture her changing nappies with the amazing dexterity she had in her feet. She had broken all the boundaries.
Was it my turn?.

About Mark

For all things a day-dreamer, a larrikin and an undeniable fighter. Mark advocates for both Adversity and Lyme Disease; and boasts a real passion for green living, nutrition and organic foods. Oh and he's a quadriplegic too. This spirited life coach, with prior background in marketing & advertising, now has more recent aspirations that include becoming a published author, and a business owner too. And when well enough, Mark’s also ticking off his bucket list, and he also volunteers with the Starlight Children’s Foundation. Mark is an ACIM student, an adventurer, and a sneaker collector. His dream is to one day get better and ride a bicycle around Australia.

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