Episode 52: Independence Day

‘All the adversity I’ve had in my life, all my troubles and obstacles, have strengthened me… You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you.’

– Walt Disney

 

So, I was looking for this type of thing all the time (a quote, a story, an example). I just felt like I needed some sort of social proof to know that adversity was in fact okay; or that I was doing okay. I even began discovering all these ahh-mazing people like Nick Vujivic, Turia Pitt and Immaculee Ilibagiza; and heck suddenly I wanted to become one of these inspirational type people myself – well as a bit of a dream. But really, I was looking at these people to show me that it could be done, and also for a bit of a blueprint – I was determined to crack the adversity code. And, the thing that always struck me [with these people, and through quotes or whatever] was their independent thought, or independence despite all obstacles. They all just seemed to have this extra notch when chasing down their dreams. And to make a comparison here, I mean sure I did have some pretty inspirational ‘residents’ around me, and sure I was learning from them (about acceptance, resilience, life etc), but not one was thriving like this. Not one was thriving as I wanted. Not one was living in their truest power (despite some of their amazing achievements). It was again this ‘independence’ theme emerging, or as I always fantasised about, not one was living as if they never got sick (which admittedly was a pretty hard task). And then to make one further comparison here, as fate would have it, at this time I went on a three day holiday myself, and gees it was hard. It took 3 months to plan, 3 carers, and I literally had to take my own everything (inc. special air mattress). And while we were there, we spent the first two days troubleshooting. And look admittedly it was nice to get away, but the reward wasn’t really worth it, and I guess I again wondered if I could do this? Was any true independence in fact an impossibility? But these were the scales that I was trying to tip.

 

 

I kept on studying these people thriving through adversity, to which then I really did become frustrated. Like I now knew it was the undercurrent of a lack of independence that I’d have to overcome. But crickey my arms didn’t work, nor was I ambulant – and sheesh I’d look at Nick Vujivic in awe. So, even though I was beginning to ‘step out’ a little, honestly most of my days were spent sitting around doing bugger all. Heck how did these people do all these things? And I know I haven’t gone on about this as yet, so here goes, but can you even imagine what life might be like for a quadriplegic? Being completely unable to move? Actually I always used to joke that I was a head, because in truth that’s what I was. Actually while I’m on topic here, there was not one single thing that I could do for myself (apart from think, sorta talk and maybe plan some extravagant adventures). For example, I couldn’t brush my teeth, I couldn’t go to the bathroom by myself, I couldn’t even bloody eat (as I couldn’t swallow, hence the feeding tube). And again this is where I love the movie The Divingbell and the Butterfly, I absolutely love the mental image of the diving bell. Because truthfully, to combine that image with the water pressure, it is like you’re encased in lead. To amend my frustration, I even tried to practice peace around this, like accepting that my ‘lead suit’ was just temporary – but I still had no proof of that. Or maybe this was just one big exercise in patience. Who knows? Nevertheless, any acceptance of this was surrendering to my lack of independence. It was almost like I had to forget the person that I could have been (and never said yes to), and to then move on. In fact, on that topic, I never realised how gifted or priviledged I once was either. Athletic and able, and all I did was squander that.

 

So long story short, what was day to day life is like for a quad? Well, I had no independence. There was a lot of sitting around waiting, a lot of reliance on others, blah blah poor me. But then bammo… something happened!! Finally, and I do mean finally, I got my first taste of independence. In fact, it proved to be almost like a metaphor for this moment in time, and it was again proof that everything happens, at the perfect time, right when you’re ready for it. Anyways it all started from a simple need, or maybe it was becoming apparent that I was using up a lot of the Carers ‘work time’ to help me to use the computer. Yep, the computer (or more specifically trolling online poker tables) was my latest fad. But before I go too far here, first a little rewind… so basically I would have gone four years without even once seeing a computer screen. Then after that, another two years without using a computer any more than 15mins every fortnight or so. This is when I discovered eBay, oh man I love eBay! But regardless, as I couldn’t move, any and all of my online activity (present day) was done through a surrogate. Opening some emails was indeed tricky, especially the few I was now getting from my ex-girlfriend. So… again my independence and privacy was nil. In fact, I was having to dictate all my Uni assignments (as I was still studying Media – Screen Studies); now that was a pain in the ass. Only, now this is the exciting bit, one day my Occupational Therapist (OT) walked in with this ‘self control’ little computer gizmo and boyo boy it changed my life – I won’t even attempt to summarise how much. I was now able to independently use my computer, write, and surf the net – an absolute game changer. All from this little black box mounted on top of my monitor (TV screen) which was mounted above my bed. Yep I could now lay in bed and work on my dreams.

 

 

But I guess all this doesn’t answer the question (which it seems so many people want to know), how do I write? How did I really gain my independence, or I guess some? So… to start… this everyday part of my life, well it comes down to how I use my computer. I use this thing called SmartNav (Google it if you like); anyway it enables the user to move the ‘mouse’ via a censor on their head. So essentially I would just move my head (and the ‘mouse’ moves)… I’d hover over an item for a couple of secs… and ‘click’ – Just like magic. However, when it comes to typing, it is a pretty slow process. I use the same ‘hover and click’ system [just mentioned] with a stock standard Windows on-screen keyboard – yep and that’s one letter at a time. It takes me about an hour to write one A4 page, but please don’t look upon this as some marvel of determination and resilience; cos it’s not. We all live with some sort of challenge [obviously some are bigger than others], and this is just something I have to do to get by. Also, I just remembered, I literally can’t use the predictive text function either. For me it’s a total distraction whereby I often lose my train of thought, and yeah how about those Knicks hey? Porzingis, yep another Latvian, league MVP hey?? Umm umm I mean the little words on top of the keyboard distract me, and I also feel that I write differently when I use predictive text (according to a computer generated algorithm). So in my search for authenticity, I’ve always stuck to one letter at a time. And truthfully my brain doesn’t work that fast anyway, so it’s always been nice to slow down the writing process and enjoy it. Plus, heck who was I to complain, this was much better than what I had before – which was nothing.

 

But this independence and privacy thing, now this was something I was not used to. Especially with this new found freedom, then to combine that with this whole new world of social media, man it was a pretty big overwhelm. Actually it was a pretty weird contrast that I now had more freedom when I stayed in bed (because of the computer), rather than when I’d hop up in my chair. Yep finding a balance here was hard. Still, in any case, I’d opened up my world (re connections), and what it taught me, well I now had the ‘independence factor’ that I was looking for. Plus, the sense of adventure in knowing that prosperity was now ‘doable’ was bliss. And it just shows that something like this might mean bugger all to most, but for me, this completely changed my world. Without my super sonic head sensor, well my online life would be non-existent, so would be my writing and my self-expression (as would my independence). Not having it now would be like cutting off my arms, haha well if they worked. But one thing that’s still an issue, just as I mentioned before is balance. As in technology is taking over lives, even mine, I mean as human beings we barely have to think anymore let alone need to learn how to spell. Or maybe we are just becoming knowledge banks with very little need or want for practical application. Shit who knows, I could be wrong!? Still I felt like an equal with this gizmo, like we’re all just staring at screens. Kinda sad but good for me I guess. And finally, as a hot tip from me to you – use technology and don’t let it use you. Like when I did, I’d just stay in bed all day. And that was never going to bring true happiness.

 

And also as a bit of a ‘you just might like to know’, this method of typing (as mentioned above) is exactly how I’ve written every single one of these Episodes. Actually if you’ve read anything I’ve written (whether it be a social media post, a blog or whatever) I can almost guarantee I would have used this same typing method again. So now you know… a lot of people just assume I dictate my everything; but no I do it all myself. And for that small number of people whinging and whining about my swearing & ‘smut’… well direct it all my way.