MARK MILJONS-ROSTOKS
This is my blog and website encompassing all things me. I have many interests, many ambitions and one hell of a back story. I also have a pretty addictive personality, and one where I get obsessed with things from time to time – but I like that. I see it as insatiable curiosity.
See another thing I need to mention here is that I desire to experience as much as I can in this lifetime. Okay like everything. The unusual, the beautiful, the painful, the damn right crazy – yeah that’s me to a tea. And my addictions help me to cover some serious ground where this is concerned.
I guess I’d just like to be able to talk to anybody about anything, at anytime – with depth and understanding.
This dot com will be the platform for such rants.
But with that said, and ambitions aside, really I’m just a normal dude – oh yeah – well apart from the fact that I can’t move. You see just like most other aussie yobbo blokes I make countless mistakes, I’m an absolute clown at times, and I looove boobs. Nope my disability hasn’t changed who I am; in fact, it’s just accentuated it.
I am and always have been an inspiring, determined dreamer.
Only these days there is that one clear contrast between who I was when I was young and who I am now; it’s called quadriplegia. I mean just to get out of bed in the morning it often takes two hours, and then if I want to leave the house, that often takes several days of planning – but it’s okay. I still achieve things all the time.
I guess my hands haven’t worked to play Nintendo, nor have I been well enough to go up the pub and get sloshed with my mates, so I’ve kinda been forced into a life of lesser superficial distractions. In fact, it has been suprisingly nice.
Or in other words my illness forced my focus towards one of meaning and feasibility. As in when you have no choice, or overcoming the odds is your only choice to live any sort of feasible life, you kind of think about things a little differently..
Now also, I can’t say this has all been easy (I do still struggle at times)… but I’m still here alive and kicking. In fact, in most part I love my life these days. And even though my illness has threatened my life on numerous occasions (even at times on a daily basis – and continues to do so), that big fella up top, I reckon he’s keeping me around for a reason. I suppose it is true that I do have a lot to pass on from lived experience.
And life in general… pre illness/post illness… as far as career prospects go (as most bullshit-artists do) I really fancy myself as an advertising copywriter. To be the real-life Don Draper in a wheelchair.
So this is what I’m going to do.
Yeah as you can see, I’ve tried to make the most of my predicament and cope the best that I could – and now I hope to create something great from it.
HOW I WRITE
From what you may have gathered so far; yes, I can’t move at all. So then how do I use a computer or type? Well I use this thing called SmartNav (Google it if you like), and it enables me to move the ‘mouse’ via a censor on my head. Essentially I just move my head (and the ‘mouse’ moves)… I hover over an item for a couple of secs… and ‘click’ – Just like magic.
However when it comes to typing, it’s a pretty slow process. I use the same hover and click system [I just mentioned] with a stock standard Windows on-screen keyboard – yep and that’s one letter at a time (predictive text just distracts me). So for example it takes me about one & a half hours to write one A4 page.
Lucky I enjoy writing.
And just to clarify things a little further , this same process is how I do everything online. Website design, social media posts, basically live in an online world – I’m a one man band.
WHAT’S WRONG WITH ME?
Why can’t I move?
Having been sick for over 10 years (actually 17 years now), as you might imagine a pretty monumental disease process has taken a heavy toll on my body. Yeah I’ve gotta say, I’m pretty sick. From the quadriplegia to the extensive breathing problems, at times it’s freakin crazy! Only somehow I am still surviving – and somehow seem to push on through.
Yet with no conclusive diagnosis (re neuropathy) I’m still searching for answers. I mean my blood has tested positive for Lyme Disease, but what else do I have? Or does Lyme really do this?
Have I acquired one of the worst strains of the disease – while holidaying in Italy back in 2003?? There has been cases documented very similar to mine – only I just don’t know and neither do the doctors if this is the answer.
Testing facilities aren’t really up to speed with all this.
With a lead by example type approach, my aim is not exclusively directed towards disability or illness, or towards community acceptance of either of these things, it is much rather about empowering the individuals.
Like you really can still do and achieve stuff no matter what your predicament – it really is all in your mindset.
I mean shit happens, we all know that, but as Marianne Williamson puts it: ‘as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.’
So just think, you stepping up it can also help others.
That’s my belief.
THE BUCKET LIST
To further my quest for a normal life, many years ago while in hospital I started writing a ‘to do list’ (or a bucket list). However, the reality was that my physical inadequacies held me back and somewhat squashed these dreams.
I was stuck mentally.
You see I always thought that a bucket list included things like Running with the Bulls, or Climbing the Eiffel Tower, and well, sadly these are unachievable. Still, never one to shy away from a challenge, I decided to get creative.
I came up with a more realistic list – with an equally diverse range of challenges. The hope was that my list would get me out and about and living life again. Because, in reality, I had already let far too many years just slip by.
And to me this is the true essence of a bucket list. It’s about challenging yourself and achieving things you might normally see as unattainable – and of course assisting to live a fulfilling life.
So with fingers crossed, I hoped the experiences would bring some adventure and excitement to my life; not to mention a lot of anguish.
To begin living unbound again was the ultimate goal.
It happened.
ORGANICS, NUTRITION & SUSTAINABLE LIVING
From early on in my illness; given little hope, I sought refuge in the hands of a crazy Naturopath. And with that an organic diet followed, along with a bucket load of supplements, and then a hell of a lot of crazy shit.
This then manifested into a love of nature & the earth itself.
What followed this was much research into the fundamentals of our planet (okay the health thing definitely evolved), and I had the rude awakening that as human beings we are exploiting our only home.
Yep, I’m a bogan greenie!
And as such I’d like to positivly impact human nutrition and lessen the reliance on toxic pharmaceauticals – with an emphasis on reducing our global footprint.
I don’t know how yet but this is a passion.
Mark My Words 