Episode 51: My Weird & Wonderful

So I was now a quadriplegic slumped over in a wheelchair. I knew I still had fight but I didn’t know how much. Like, with every passing day I was hiding more and more behind my mask – and the weird thing was that I was literally wearing a mask – but it was the metaphorical mask that I had to let go of. My metaphorical mask was hiding behind my ill-health. So, to remedy this, the truth was that I had to become more ‘me’ again only I didn’t quite know how to do this or who that was. Like was I simply the happy-go-lucky suburban stoner about to wake up tomorrow and be fifty? Or did my life indeed have depth and meaning? Well heck I didn’t know, at this point I was just trying to survive! Still I can definitely say that I didn’t recognise the face in the mirror, and this ‘me’ character was without doubt something that needed to be explored. So OMG this is all getting way too confusing… anyway… in my present day reality I began to question everything: what was I doing? Was I doing it right? How could I do it better? And so on. And despite the incessant desire for something more, I really began to think that this was it. I was in bed near on 3/4 of the day, then when I did venture out of the house the effort would be astronomical, and finding a balance of whether or not my activities were worth it began to bring on a whole new meaning. So I guess, what was I made of????? As forementioned I’d now seen many people battle through similar type predicaments, only maybe I hadn’t learned anything at all. Life was hard. Doing shit was hard. I was again faced with the reality of dying quietly or living for something that I believed in.
Anyhow to find ‘me’, I was still ‘studying’ all these people around me. Like had their disability really changed who they are? And as a weird observation, most seemed to be doing a-okay. They would still smile, they would still joke around, and even have their quirks. It made me think of the A Course in Miracles line, ‘my way is not difficult but different’. And oddly, I was also finding that all these people were in fact my role models – as I was learning from them piece by piece. But I still hadn’t quite got my head around everything, you know, to take all this all on board and to run with it. Like I was not in a depression, but I was sad, heck this was not easy. I mean I just wanted the simple things, movement, not this complexity. But it was what it was hey! I even then remember the old lady in the iron lung telling me about her fiancé, and how she broke up with him in her early twenty’s when she became paralysed (from polio). She didn’t want to burden him. I was in awe of the difficult life choices some of these people had made. Then to another bloke, this one with late stage muscular dystrophy, yet he was living with his wife in the community. I was starting to see that if you wanted something bad enough you could make it happen. Then in saying that, it always makes me think back to the lady (again with polio) who raised her family with her feet (because her arms didn’t work). Now I saw these feats as astronomical by comparison to what I was trying to do; like I just wanted a bit of life back. Then one day, while chatting to a bloke with Locked-In syndrome (so literally all he could move was his eyes), he gave me all the perspective I needed. He spoke to me (via an eye gaze computer) about his daughter’s in high school, and about how fulfilling it was watching them grow up, and how life went on. I was blown away.
Not long after that profound conversation I went to the cinema to see the Diving Bell and the Butterfly; a film also about a man with Locked-In syndrome. Still to this day I’ve never been so impacted by a movie. Seeing yet another man who couldn’t move a single thing apart from his eyeballs, to then go on and live an interesting and fulfilling life, it almost meant that any excuses I thought I did have were now void. Hence if all these guys could do it, why couldn’t I? Again it was that whole thing about seizing the sword. And well… this then bought up the whole thing of life purpose. So what was my purpose here? Who was this ‘me’ character? Blah blah? Like, all these people listed above were still able to let their lights shine, but what was mine? I even came up with this dumb line that it was my assignment to ‘make disability cool’, haha definitely failed at that one. Thinking about these things linearly though, I thought it might be a good idea to try and pick up where I left off – advertising. Like, at this point my creativity was nil, or I was still writing the newsletter (which was fun), then writing Uni assignments, only everything was by dictation. Nevertheless, I was again learning to write and craft a unique voice. So it even seemed as if copywriting was a career tailor made for me, disability and all, this was something that I could still do. To be a pseudo Don Draper on Madison Avenue – but… reality was that I now looked upon the advertising industry as a farce (purely driven by profits), often creating false desire for unnecessary products. Yep and over-thinking again, but I wanted to be part of the solution and not the problem.
So employment wasn’t it! So I kept thinking pretty deeply about this purpose thing, probably way too deeply, but I desperately wanted an answer. Actually I was still very much in an exploration phase, like sure I was inspired to move beyond my disability (as these other people had), but personally I had to move beyond intellectualising it. I had to do something (in my position I had way too much time to think), so I sought out spirituality, meh heck why not? So with one of my Carers, we began attending a Buddhist centre every week, for about a year. I truly loved this place. The program that I attended was a chronic illness support group, which was exactly what I needed – I met even more inspirational people (with Cancer, MS etc). I also learnt about the heart, about meditation, about forgiveness, and I even developed a real keen interest in the Buddhist philosophy, which as it turns out is quite a contradiction for me as I don’t mind the luxuries in life [and gadgets], Oh well. I did begin to enjoy the simpler things too, particularly the environment – nature – beach. For example, I could now very easily go to the beach and just sit. Only through all of this, it never quite answered my questions around purpose, if anything though it gave me permission to just be. Like that achievement wasn’t necessarily the holy grail but peace. In fact, inner peace. You know maybe that was my answer all along but I was too pig-headed or possibly ego orientated to see it. I kept on striving. Nevertheless, this ‘peace’ line of thinking changed my world a little; I began stepping out of my comfort zone (with more vigour) and away from my safe problems (like the happenings at my residence). Finally, my focus was shifting to the outside world, and umm yeah I was out making disability look cool – haha it is as stupid as it sounds.
And to continue on with that line of thought… I really was trying to keep my life as normal as I could, as if I’d never got sick. Art classes, beers with mates, and probably the biggest stand-out for me was concerts. I say this for a particular reason, and that’s that at a concert whether you are disabled or able bodied, you get exactly the same experience. It’s not dependent on physical engagement but rather mental. So, yep, I went just about everywhere. I saw Bob Dylan, Paul Kelly, Metallica, you name it – I went and had a squiz. But even to this day, one concert stands out, and that was Primus at the Forum. The show was pretty amazing, its’ just that after the show, I was hanging around in the foyer and for some reason the bird selling t-shirts caught my eye. A double-take later, I thought ‘Holy Shit!’ I fricken know you, and simultaneously I saw her gaze meet mine, and I saw her jaw just drop. It was this chick that I was really good friends with in high school, and she had no idea that I was sick. Suddenly, she came running over to me. ‘Mark! Oh my god!’…’Holy shit…’ she was speechless. My heart dropped. I mean what do you say? To someone who I obviously admired or something, and here I am a flat out fucked unit. So there I was sitting in my wheelchair, she was barely able to understand what I was saying (so I had my carer translating), yet all I can remember was the look of devastation on her face. To this day, I will never forget it. Still, we chatted for a bit and I’d say it was okay after the initial shock. And, as weird as this may sound now, I’m very thankful that I ran into her that day. It made me realise that shit does happen, and what she really cared about was me on the inside. Heck maybe this was even a clue about finding my purpose??
Nevertheless, obviously this ‘me’ and purpose thing wasn’t solved as yet, and as I’ve mentioned before, it always seemed as if right when I was getting somewhere the universe would throw me the next obstacle.But I was beginning to like it that way; I was growing.

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