Accidentally Extraordinary
WHO IS MARK?
Hi guys, so, yeah for all things I’m a day-dreamer, a larrikin and an undeniable fighter. I advocate for adversity, disability and chronic illness; and I’ve also got this soft spot for b-grade horror movies. I’m a big fan of green living, nutrition and organic foods. Oh and I almost forgot… I’m a quadriplegic too.
I’m technically a life coach (though I rarely identify as being one), I study marketing and writing at uni, then I’m very keen to publish a biographical three book series. Plus, I’m writing a number of online courses. And, when well enough, I’m ticking off my bucket list, and I love volunteering with the Starlight Children’s Foundation.
Then, my dream is to one day get better and ride a bicycle around Australia.
MY SHORT STORY
My holiday of a lifetime took a drastic-u-turn, some freakish neurological event took place. The symptoms started as I got home, and how it played out, I began losing strength then movement in my limbs. Gone were my studies and career aspirations, all of a sudden I face-planted into the hospital system.
Tests galore, specialists galore, but I never did end up with a diagnosis. Instead, as my physical decline continued, and as I began relying on things like mobility aids and ventilators, I didn’t really have anywhere to live. My needs were too high. So, I ended-up living in a few different care facilities.
As the years began to pass, despite my continued search for answers and a cure, I settled into this weird institutional life. It sucked. I kinda lost myself. So, to re-discover who I was and to test my capabilities, I started a bucket list which led to some amazing adventures. But the most notable life development, I started writing a blog.
I was always trying to share my journey, it was my way of helping people to understand the complexity in my life.
To help me to understand the complexities, I started studying life coaching. This was awesome, and it re-ignited a fire in my heart to return to my uni studies again. Only disaster struck, another respiratory event, and this one resulted in a second tracheostomy.
After a long recovery, quite amazingly, I did manage to get back to on-campus studies. Bingo. My life purpose of becoming a biographical writer and adversity advocate unravelled.
Next, after sixteen years of institutional living, I was able to move into my own apartment with my own staff team. Then I started a business ventures.
WRITING THEMES, ACCURACY AND AUTHORITY
In general, the crux and primary themes of my writing centre around acquired physical disabilities, then I often gasbag on about the subsequent mental and emotional battles. Funnily enough, these are topics that I fell into because of the life I’ve lived. You see, I’m obviously dealing with a chronic disability and throughout I’ve always been striving to reclaim my life. Every single day has its challenges. But what I’ve realised, many people are in this same boat, and like myself many people are searching for bold voices in this unusual niche to help with their own journey.
This is a very complex niche, there’s no room for pretenders nor can you mentor by reading a book, you need lived experience. This world knows trauma, despair and disaster intimately.
Nevertheless, my accuracy and authority comes from my own journey, an all-consuming and extreme disability; and I’ve been living this life for twenty years. I’ve been through almost every mental battle and emotional insecurity you can imagine, and I’ve managed to still build a life. Yes, I’ve been through the ringer, still I’m pretty open about both my struggles and successes.
THE BOOK – BURSTING BUBBLES
Purchase on Amazon HERE
Writing and publishing is something I aspired toward for years, and I did it. Writing a book is one of my prouder moments. Plus, I may be wrong but I reckon my first book needs some serious acknowledgement as it has to have one of the longest titles in history – Bursting Bubbles (Making Adversity Okay), The Ramblings of a Complex Quadriplegic in Quarantine. Now say that with a mouth full of Smarties.
Anyhow, this was essentially a diary that I wrote amidst the initial COVID lockdowns, yeah it gave me something to do. Or, as it says in the blurb on the back cover, it’s one massive vent-fest which was originally a personal writing challenge, however with a few sprinkles of fairy dust it magically transformed into a hard copy. And what it ended up being, it’s like the cliff notes of my life.
THE BLOGGER
Writing is my happy place, and as such I write all the bloody time – and often this is about the nuances and complexities of my everyday life as a way to find understanding. I do find a lot of peace in the blank page, thankfully.
Anyhow, just follow my blog link to find a big chunk of my heart… Mark My Words – Inspiring, Determined, Dreamer.
PROFESSIONAL AMBITIONS
I’m obsessed. I’ve always wanted to work in an advertising agency, this has been my dream job since high school (then I got sick). In these years of illness, I have always kept an eye on the industry, and thankfully I’ve never lost my creative spark. My areas of expertise are copywriting, campaign creation, and something I’m trying to develop further is scriptwriting. I’d love to write short videos for businesses – from concept to production.
My mum would be so proud, she was a writer. Words are in my blood.
THE BUCKET LISTER
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.
You see I always thought a bucket list included things like running with the bulls or climbing the Eiffel Tower, and well sadly these are unachievable for me. Still never one to shy away from a challenge I decided to get creative.
So instead I came up with a more realistic list with an equally diverse range of challenges with the hope that they would get me out and about and living life again – because in reality I’ve already let far too many years just slip by.
And to me this is the essence of a bucket list. It’s about challenging yourself and achieving things you might normally see as unattainable – and of course living a fulfilling life.
So fingers crossed the experiences bring some adventure and excitement to my life; not to mention a lot of anguish.
To begin living again was and is the ultimate goal.
HEALTH AND DISABILITY – THE BRUTAL REALITIES
Quadriplegia – and for me that’s zero finger movement, zero arm movement, no legs whatsoever. Yet just a tiny bit of shoulder flex. And my neck is quite weak too.
Breathing Insufficiency – I can’t breathe for shit. Prior to July ’17 I used nasal mask ventilation, this was for anywhere over 20 hours per day (increasing over a 10 year period). Then in July ’17 when a tracheostomy tube was inserted, and subsequent 24 hour ventilation required.
Feeding Tube – As I can’t swallow, I can’t eat (I’m nil by mouth). So I had a PEG tube inserted directly into my belly for all my nutrition, medications and liquids. And on a side note I only eat organic (mostly vegan) soups & smoothies.
Speech Difficulties – These days, I currently can’t talk at all, it’s been two years. This is a situation I’m trying to improve. I’ll keep y’all posted.
Energy Levels – Well here we have the good, the bad, and the ugly. And quite often this depends on how I’ve slept, but on most days I’m good for 5-6 hours – however if I’m talking a lot it can be a pretty sudden and steep decline.
Manual Handling – Being a quadriplegic obviously I can’t do anything for myself. And by that I mean I have people move my limbs for me all the time, I’m ceiling hoisted out of my bed and into my chair, and I also have people to roll me over at night. All of this is often a slow process.
Halfway Decent Advice 