Episode 45: Write a different ending

As the months and years rolled on by, my residence began to feel much more like a halfway house. People would stop on by, we’d become friends, and quite often they would pass away just a few short months later. Even most of the ‘originals’ began passing on. And when someone would die, it always gave me an uneasy feeling, much like I was living on the green mile. This was sort of the pattern; only then two young blokes with acquired brain injuries (ABI’s) moved in while their ‘needs specific’ service was being built. Nursing homes for young people is definitely an area in dire need of expansion. Anyhow to tell you a little bit about my new housemates, one was a diabetic who while asleep had some sort of hypo attack or something, and as a result he threw up and choked on his own vomit. This was at 18 years of age, and apparently he was a really bright bloke super keen on study. But the whole vomiting incident resulted in a lack of oxygen to the brain, which then made him like literally brain dead. It was like the lights were on but nobody was home. No joke he would just sit there in his wheelchair, starring into oblivion, and then about 30 times a day chuck these massive full body seizures. And the most amazing thing was how supportive his family were – kudos to them. Now the other bloke was a little bit different, again very young but he had acquired his injury from an ecstasy overdose. And this guy (despite his physical inadequacies) had some faculty left, and oh man was he mad at life. At times he’d even straight up tell the Carers to fuck off, only to apologise later. He was so hot and cold, apparently even funny at times, but I never saw it. In fact he wouldn’t even talk to me. So umm yeah it was very hard for me to process all of this, and I was never given a guide book.
Now being very different from the staff (with no training or support – but curious all the same), I began to ask heaps of questions about people with disabilities, and more specifically to their circumstances. I mean I had been tarnished with the same brush so I really wanted to know what to expect and how to deal with it in some regards. I even began learning about other services in my conglomerate, to which most catered to down syndrome clients, muscular dystrophy, and then an abundance of autism spectrum disorders. Now these I knew about but ABI (as my new housemates were) was something very new to me – so I asked even more questions about that. And no doubt the answers that I got were pretty extreme; hearing about people who’d just sit around and wank all day, others who would shit everywhere for entertainment, then I heard this other story of a guy who literally opened the car door and tried to jump out in the middle of the freeway – with the Career holding them back to stop sure death. I couldn’t believe what I was hearing, it was almost like some brain injuries made people more primal. Then I began to hear about these so called behavior houses, which cater to schizophrenics and alike. And apparently the clients there would full on go you, as in try to beat the shit out of the Carers at times. The bloke who was telling me this story said that working there made him paranoid because you’re always looking over your shoulder. Fuck that. Nah like really fuck that!! But I’ve gotta tell ya, hearing all this stuff made me feel quite lucky, and my problems pale in significance. And ok the above examples sure are extreme but truly there is always someone worse off than you. I mean my big hurdle was to begin going out more, and to gain more confidence, not to stop a myriad of freaky behavior’s.
Now as shit as it might sound, I really did feel a lot of gratitude in learning about these scenarios (well gratitude and sorrow). But I felt privileged to have a functional brain; and I felt blessed to have the ability to make my own decisions. In care, it actually surprised me how many people would freely (or otherwise) just give up their self-determination. So still, from other’s tragedy this kinda highlighted my own abilities, and that I still had a fierce desire to live. And in that for the first time I realized that opportunities lay at hand for me, opportunities which others could not see or have, opportunities that could write a different ending. I really did have a unique standpoint to make this whole ‘life’ thing work. So to get the whole ball rolling I started with some small trips out and about, I thought that might be the best way to lead me into this new life of adventure and productivity. But taking the plunge wasn’t at all as easy as I thought, and specifically speaking day trips to my family home were the hardest. My brother even organized a few barbeques with some old mates (which it was always great to catch up), but the negative side to all of this was that my home reminded me of all the things that I could not do. Like I could now no longer walk up those stairs, or no longer sit on my favorite sofa, and worst of all I was unable to drive my car that sat in the garage collecting dust. So I learned right there and then that this needed to be a fresh start thing, and that this was something I was going to have to do on my terms. Yeah it’s a big thing to overcome, the whole let’s deal with the disease while ignoring the person thing – or vice versa – but I was now prepared to try. And that I could truly relate to the torture and torment people must go through coming out of the closet.
So yeah I had a few hiccups but In time my life began slowly expanding, very slowly, and there was no doubt I was still using my residence as a firm foundation. In fact I was becoming very thankful for the steep learning curve it was providing, and in particular the people who had touched my heart there. So maybe in some subconscious way I wanted to give back, and contribute to the upkeep of the ever-developing community vibe. So I had this hare-brained idea to publish a monthly newsletter – which was also a step forward for myself too. Now this would comprise all the happenings around the houses, general gossip, and any information that might be important for residents, families or staff. Myself and a Carer (a truly supurb creative writer) took up the task. I found this process to be quite enjoyable and I learnt a lot about writing, particularly about writing with flare. Before this the only thing I’d ever written in my life was assignments, I’d never once thought of writing for fun; I never thought I had a talent either but we tried to make it as fun as possible. Actually this signified such a shift in my thinking, and little did I know at the time but this was me starting small, just again making the most of what I had. My brain. Actually as it turned out, this newsletter was so coherent for me, it motivated me, and in a way this was again me choosing life and keeping the promises I made to myself. So really this simple undertaking was that important to me, and our readers loved it too. It felt so great to share some of my thoughts and perspectives, and I’d made a great friend in my fellow writer along the way. Or maybe it was all about a project, and jumping in boots and all. Much like we all need to find ways to keep ourselves on track – for me this is what writing the newsletter was all about.
As I started putting myself out there more, things began to shift in all areas of my life. In particular, I now had a friendship group as well, specifically with some of my Carers. Well we were spending a lot of time together, we had mutual interests, so I guess this is just sort of what happens. However management looked very unfavourably upon this sort of thing, so we kept it kinda quiet. But for me personally, this was great for my confidence as I felt human again, and it was no problems going out with a group of people who knew my care. Plus I now had friends that I could truly confide in. I’d welcomed then into my world and they’d welcomed me into theirs, like literally, I’d even go and hang out at some of my Carers houses, and even go out with them and their friends on a Friday or Saturday night. I knew this was not convention, like I couldn’t quite see this happening with too many other residents. I mean if it did happen great, but I hadn’t heard of it. So yeah to put this thing in a nutshell, it was like I sat somewhere in the middle of client and just another dude, and I found that the Carers would talk to me differently too. Like share things that they wouldn’t with other clients. This is where I felt a little different. I could even do things on a slightly different level too, like for instance ‘we’ even started a weekly trivia team at the pub, which for me felt like normality. Or like I’d somehow be metaphorically leaving my wheelchair behind. But the more I’d socialise the more these odd little things would keep on coming up. Like I was at the car expo, flirting rather terribly with the Fiat girls, and I almost toppled right over a step. So classy. Actually I wore a seat belt from then on in. Or I remember this guy out front of art centre, he wanted to give me $50, for no reason whatsoever. I was definitely not normal as much as I tried.
In fact weird shit would happen all the time. And when I did venture out, then there was often the awkwardness of all the poor fuckers that tried and shake my hand. And I’d be like meh, sorry, umm can’t move. Well at least they were looking past my disability. Actually on this whingy note, I was also finding that putting myself out there had some real negatives at times too. Like having kids who were always curious look at you, and say “what’s wrong with him, Mummy?”, to running into people or even knocking shit off shelves. Again I would compare myself to my two new housemates, feeling like physically I was on their same level. Or questioning if I was any different at all. I’d even think of what some of the other ABI clients must go through out in public, and feel empty because of the judgements made in our societies. I’m guilty myself. Yup emotionally it was like two steps forward and one step back for me. And really, at this point, success was simply showing up – initally it was a flat out mixed bag, Newsletters, friendship groups, trivia nights; they were all just significant tokens in my path forward. To prove to myself that a well-rounded life was possible for not only myself but for anyone in care. Desire, desire, desire. Or maybe it’s even an ability to handle set backs.
Short term pain for long term gain.

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.

1 comment on “Episode 45: Write a different ending

  1. Nikki Lane

    I love that I get emailed copies xx

    Kind Regards,


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