Episode 46: Seizing the Sword

No matter how far forward I thought I’d come the naysayers would never stop. Maybe putting me down built them up, or something. Now this could be a doctor, even a close friend, but some people gave the impression that they just didn’t want me to get on with life. It was like they were scared for me, or fearful that I might find something too hard. There even seemed to be a thinking that because my body no longer worked, neither could I. There really was this ‘crawl up in a ball and die’ mentality. In fact many people thought I was delusional; I even remember two Nurses (both from the shitty respiratory centre where I once lived – and now in my present day life) standing at the end of my bed telling me to just give up the fight. ‘We’ve seen this all before’ they said, ‘you have MND and the sooner you accept you’re dying, the better off you’ll be’. And all this said in a rather forceful and bullying manner, it was as if they were trying to break me over a 20 minute conversation. Truthfully I was left a little shell-shocked (and thinking you fucking bitches); I mean maybe I was a little delusional (or not) but wasn’t that my choice? I was really finding that (again with some people) when you’re in the weaker physical position they tend to think they can walk all over you, much like they think the jobs half done so why not go all the way. Blimey I couldn’t imagine what my two new housemates were going through. Like as much as I was finding some good optimistic Carers and Nurses, no doubt there was a handful of pessimists too.

I mean don’t some of these people realise your ‘actual predicament? As in things could very easily go south, especially with a negative outlook. Depression, suicidal thoughts, you name it. And I couldn’t believe that people were talking to me in this way. It’s not like I was dealing with type two diabetes or a broken arm or something; I was on the precipice of one of the worst terminal illnesses known to man. I could even hear a similar murmur from some of my support staff – but in my heart I knew this was the wrong diagnosis. Actually one of my nurses really supported me through this time, and he had my back the whole freakin time (see they weren’t all bad). He would help me research, think outside the box, and support me with my ‘treatment’ wishes. Management thought he was giving me false hope, and as such he was cautioned by the manager countless times. But all he said is what happens if you’re wrong? Oh man this whole not having a diagnosis thing was such a circus – everyone wanted to put me into a box. A label was apparently that important. Only me, I didn’t give a shit by this stage, I just wanted to plug away at my naturopathic treatments – that was safe. And even if I did get a diagnosis, the truth was that I was in the realm of the untreatable. So why bother? Nevertheless, through this whole thing, my life truly felt like a soap opera. And the really bizarre bit: whether it be in my residence or on my wellness-miracle pursuit, I felt like I was living a story. Almost like a Disney fairytale, and almost like I was watching everything unfold from afar. Yet I didn’t know how it would end. So essentially this was my life in care, observing the journey, feeling like it was an illusion and just trying to get out of it.

Anyhow this escape path, I’d always be trying new things to propel me forward in one way or another, and taking another step towards my end goal. But not everything was so complex, really most of my days were spent watching the minutes tick by. When the Carers were busy, or my Dad wasn’t around, literally I would just sit like a stale bottle of piss. I never had an electric wheelchair because I never had the physical means to drive it. So often I’d sit pinning over my computer, as texas hold’em poker was my new fad. My computer was yet another device I didn’t have the physical means to operate. And when it was ‘my time’, I’d sit there, playing on the computer, reading private emails or whatever with a Carer at the helm. No privacy. Again my life was on parade. I even discovered this brand new thing called Facebook which gave me some reach, and it allowed me to both socialize and to keep my anonymity – obviously I was still embarrassed by the extent of my disability. And much like it seems the universe likes to test me in an instant, then came an invite to a high school reunion, and I gave the most bullshit excuse ever as to why I could not attend. In a way I hated myself for my response, but hey it was what it was. Now this made me again think of my two new housemates, and I wondered what they would do given my choices? Heck, I was hiding from my opportunities. Or if I did connect with somebody online; mostly I got all the advice, the recommendations, and that someone who always knew of someone that got better from something similar – man that was getting pretty bloody old. Nobody understood – well how could they?

Then bam… suddenly I experienced a massive contrast. One of my Carers also worked for the music festival The Big Day Out, and (as it turned out every year) she’d get me several VIP tickets. Now this was an opportunity I didn’t want to miss. However, being in a crowd of one hundred thousand people was very damn far from my comfort zone, particularly being in a wheelchair. At times all I could see was a sea of shoulders and a million legs – so obviously yeah I went. In fact this was one of the first times I was around people my own age, and it felt like all their eyes were judging me. I was actually scared that I’d run into someone that I knew too, and then I did, one of my ex-girlfriends best friends. It was pretty awkward at first but okay all the same. And overall I had a great day – well apart from continually running over all the plastic beer cups and getting them stuck in my wheels. Anyhow through all this, I was actually facing one of my deepest fears – judgement from my peers. Like ‘look at that poor guy struggling in the wheelchair’, that was the last thing I wanted. But what I found was to be something totally different, again there was almost an aura of respect that I was out there just having a crack. People would pat me on the back, be ever so courteous if they got in my way, and treat me like some dude just trying to hear some cool tunes. So reality was vastly different to the story I’d made up in my head. Some random hot chick even came and sat on my lap, and we chatted for ages. Some normality again as a human being, not being purely a number or a patient, this is what I’d been looking for. Only this experience was to be very fleeting, I was again headed back to my residence or ordinary world. But now I knew that a life on the outside is what I sought.

Finally, I had a taste of transformation, and I had acquired the prize that I’d been searching for all along – acceptance. To be viewed as a human not a disability. In fact, I hadn’t really realised it until now but I was always looking to evolve to achieve this. To gain that acceptance and to accept myself. So in truth it wasn’t so much about fixing things anymore but understanding them. And it was no longer about following a path but creating one. So, as I kinda insinuated with my Big Day Out example before, it became very quickly about just having a full-on shot at things rather than purely dabbling my feet in the water. I even found this began to silence some of my critics. In a couple of ways I had already started doing this with my ranga mate Carer, trudging all around the city, but yet another shift had occurred whereby I now started doing things for myself too. Things I liked, things to move me forward, things that empowered me without relying so much on others for guidance. Like exploring film, in particular the classics, and absolutely anything Hitchcock. I’d always been interested in film making. I mean moreover, I always wanted to be me, and it was almost like people would not communicate because of fear of saying the wrong thing. Or suppressing my flame as I mentioned way way above. Political correctness shuts down so many conversations. I just wish I could have people write blindly on cards to ask me questions. But in my friendship group, my acceptance was going along swimmingly, I even got invited to a party at my manager’s house. Weird, but good weird.

Whatever happens is the right path – because it happens.
But… my head thumped on – do I want to get better? Am I now reliant on this world of disability? Was this an easy way out? Or worst of all were the two Nurses lecturing me correct? These were the questions I started to ask myself. Like sure I was evolving but how could I keep up this progression? And what about my dream of getting better? Well it was really about implementation, or in layman terms I’d just have to keep doing shit no matter how hard I found it. Both health and lifestyle wise. I mean my opportunity lay in having a lot of free time on my hands, so I tried to maximise that. Do, do, do – and I again became very task orientated. Believe it or not I was still doing up the bmx bikes too, I had three on the go now. Holy Moses I’d become a hobbyist at heart. What’s more I kept dreaming up these odd little missions. Things that I could plan for, and to give myself a little pat on the back once I’d achieved it. So starting small with the plan being to slowly build on up. Like a good example here would be, to expand my horizons again, for the first time in my life I started keeping fish. At first I got one 4ft tank (something I’d talked about for 6mths or so), and then [letting my addictive personality get the better of me] I suddenly had two 4ft tanks – one for my bedroom. Honestly this worked out much better than I’d ever planned – as both my Dad & my Brother became pretty involved in the whole venture – they loved it just as much as I did. In particular, my Brother had fish when he was quite young, so he loved reminiscing. Missed his calling as a marine biologist hey?! But in all this it bought my family closer together. I also learnt the lesson about sharing tasks to make it more fulfilling. When you make it about other people things just work out. It’s the ripple effect.

Realistically though, I wasn’t going to be a hobbyist forever. I’d kinda proved my point through that. Only, where could I go from here? Well through the above examples I was learning a lot, but that celebration seemed quite tempered with the many obstacles that still lay ahead. It really did feel like a beginning. Then in a way, I also (still) wanted my bogan back – but is that really what I wanted? I mean I was kinda enjoying this personal development – and my old way of life (and hangouts) seemed rather boring now. So the conclusion, I’d have to stop lying to myself – that isn’t what I wanted at all. Much like mainstream society (and education) went from character to personality development – internal qualities vs external – I was now having to reverse this thinking. Character is what I wanted. I had visions of success and fulfilment (not just another stubby down the pub), and no longer did I care so much of what others said or thought. My actual focus was to overcome obstacles and to craft this different life – to save others much like I was having to save myself – but that was also in its infancy. Actually I began to plan these even more illustrious tasks in my head, even envisioning these magical events. I’d always liked the idea of holding a high school dress-up party. And I mean sure these tasks might seem like distractions to some, but this is what counteracted the unrest in my heart. This is what I was doing to lead (by example). This is how I planned to keep track of progress. Wrongly or rightly so, I counted my soul growth according to the complexity in the tasks I could achieve.

This was my reward for seizing the Sword: