Episode 36: Their Rules, My Rules


I always thought the care-giving industry was a harmonious collaboration between patients and nurses, not a war. And honestly I never did once expect to have to fight lacklustre staff for simple freedoms. But the nurses were always too busy, or it was too hard, and then I also felt too sick to help myself and too vulnerable to speak up – and that was before contending with the whole fear based and domineering staff arrangement. It was very different in the movies. So daily I’d get dumped in the common room, and basically I had no recourse. And after a few months of sitting around daydreaming all day, even that was losing its appeal – well that and listening to my iPod. I just never realised how broken this system was (particularly where I was living), especially as the human connection was completely obsolete. Actually I had no idea of this system at all. I mean I was only relatively new to this whole world of hospitals and disabilities, and man it was a really sudden awakening. And to make matters even worse, there wasn’t really any outlet or anybody to talk to about things either; in fact I told my father a few horror stories that he wouldn’t even believe. It was blatant suppression. I even had a whole ruckus around a poster of a girl in a bikini that I put on my wall. Well, they were telling me to make it like home (and obviously I was a young adolescent male), but in reality it was all about living in a workplace – by their rules and OH&S policy – fan-bloody-tastic.

I toed the line a lot, because really if I didn’t I’d instantly be branded a complainer – and then I’d get even less attention. I could already see this happening with some of the other patients. So I layed low, keeping to myself, and pretty much every day I’d just hang out for my Dad to arrive. I honestly don’t know how I would’ve survived this without him. You see very quickly my Father became my closest ally: he was the one who picked up the slack, made the ‘unachieveable’ happen, and even opened a few doors for me. Plus the things that the nurses refused, well my Father would just do it – particularly give me my natural medications. Or another good example to use here would be if I wanted a shave for instance, and oh man the nurses would avoid it like the plague. They would even verbalise their disgust; or if they did shave me they’d cut the shit out of me – so I often had a beard. So my father would shave me, once again just making things happen. Only in a weird soothing way this provided my father and I a really good bonding experience; staring in that full length mirror I’d never seen my Dad care for me in that way before – as the metal blades whisked eloquently across my face. My Dad is far from eloquent. But that aside, this example was starting to highlight the fact that my Dad was stepping up, and it showed that if I was even going to accomplish the simplest things in life it was going to have to be done my way.

Thankfully over this period my health was really stable also, and as such we (my Father and I) were able to explore the surrounds. It was the first time I’d been able to escape the inners of a hospital or institution in about a year – out on my own woohoo! I mean there wasn’t really much to see, just explore a hospital, but hey at least it got me out of that Respiratory Centre shithole – and it was fresh air. Dad and I would walk for hours, mainly to expand my map of the world I’m sure, so to all the hospital wards, the psychiatric unit, even to an old shut-down abandoned part of the hospital it was pretty cool explorations. Dad and I would have great chats actually, and it gave me a real sense of freedom in expression, and finally someone that I could trust with my thoughts (without the nurses using them as idle gossip in the next handover). Yup he was like my very own support team – he even started doing my afternoon feeds and exercising my arms – but really all he wanted was the best for his son. I knew he was hurting too. Like no doubt he could see the situation that I was in, and I guess i he was making it as comfortable as possible. In fact, in many ways Dad would be the one working on my mindset every day – as I was still the one very much in survival mode – yet he was the one who would be always talking about the future and what we would do when life dealt some better cards.

A month or so of this life had passed by now, and I guess I’d now become very accustomed to my institution. From the rigmarole of midday television, to pissing behind a screen in the common room, and the all-important walks with my Dad. But all this, and risking my life in the old elevator just to escape the premises every day, it was starting to grind. And just as I needed a pick-me-up, and a reminder that I was still human, about six of my mates came to visit all at once. Honestly it is amazing just how important this was – I was blown away actually. And after showing my friends around the facility, my basic medication things, then my room (I can’t even imagine what they thought… OMG); I even introduced them to a few of my housemates. Trust me this was weird!! Then they began to tell me stories, stories of the outside world which filled my heart with so so much hope and knowing that there was something more. The world wasn’t just dreams in my head anymore but a reality. And well the whole afternoon went really well – except again a nurse emphasizing their regime and authority decided that it would be a good time to give me a tube feed just before my friends left. I felt so embarrassed. I mean one minute we were all sitting there chatting away, then the nurse lifted my shirt and began to pour formula into my stomach; I saw my friends’ faces drop. For me it was an everyday procedure now (well one I was still getting used to), but when you’re trying to be a little bit of what you were before, having a plastic tube hanging out of your guts kind of cemented my own medical insecurities. I felt this a metaphor for a ball and chain. Not the lasting impression I wanted to leave with any of us.

Yeah it might seem superficial (especially now), but at the time it really was a brutal reminder of how much I had lost, and how different I now was. Like I was still ‘me’, but having very limited freedoms, I felt like a shell of my former self. Also hearing my friend’s stories was great but it did tear me up a bit too – bitter sweet. In fact in many ways this clearly highlights the greatest impact that my illness had on me – – who was I after all this? Like surely I was no longer the fun loving party-going goodtime boy… I was the bold and the beautiful, the family feud kinda guy. Then even at one point, I took that to the extreme – I found a friend coming in on several occasions (weekly), then we’d quickly nick off down the back of the hospital to smoke a joint or two. This was just a common part of my life growing up, so yep heck why not now – oh I was using a machine to help me breathe, that’s right! Though at the time it was fun; it was most of all just a little something to remind me of who I was prior. Yep we’d sneak around, down a few ramps past a cafe and outside a few of the senior hospital offices and professors – and there we were sitting there smoking dope. The visits were short, so were the laughs as my friend would go home, but the buzz would hang around for hours. I would be wheeled back into the common room, eyes hanging out of my head, a smile from ear to ear, and the next thing the nurse would ask “have you got conjunctivitis?” I’d always reply that it was just a bad headache. This escapism was short lived but a bit of fun all the same. The escapism from who I was (which I didn’t even know) was what I craved.

But it was all a contrast – their rules, my rules – give and take. Like there was actually a nine month period where I didn’t see the night sky once – seriously. You see I’d eat when they told me to eat, I’d sleep when they told me to sleep, and hey I couldn’t move to do things for myself so that’s just the way it mostly was – despite my Dad’s efforts. Then one night I had to have a bet with one of the nurses, which thankfully I won, to let me stay up late. And as you can probably guess, this was the first night I saw the night sky in pretty much forever. The Mum PSA took me out onto the patio, an absolutely magnificent crystal clear night, and we sat almost romantically and stared into space. It brought a tear to my eye – no actually it didn’t, I’m a big tough man. But truthfully, it really was a special moment and to share it with my mate the Mum was even more spectacular. We spoke deeply. Plus this was actually the first time that I wholeheartedly felt like a normal person again (yep it really was a huge step forward), and it was definitely the first time that I had broken any of the hospital ‘time’ routines. Still, with that said, fifteen minutes later I was forced to go to bed. And you think that’s sad, (then knowing the system) I had to show that I was really really grateful that they had given me such an amazing opportunity, and with the hope that my appreciation might allow me to do it again one day. This was playing by their rules.

So yeah that’s kinda how the balance of power went. I had to be clear on what I wanted, I had to strategize, and I had to beat these nurses. At this point this was my main focus.


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.

0 comments on “Episode 36: Their Rules, My Rules

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: