Bursting Bubbles (Making Adversity Okay): The Ramblings of a Complex Quadriplegic in Quarantine

By Mark Miljons-Rostoks

This is a diary written from a mini nursing home during the initial COVID-19 lockdowns in Melbourne, Australia.

Mark Miljons-Rostoks offers a personal, reflective, and emotional account of a young quadriplegic man searching for meaning amid the global pandemic. He details the realities of life in care and how he plans to re-establish an inspiring life. It’s one massive vent-fest.

A rare glimpse is given into a life that not many people know about, understand or can even imagine.

He does this by undertaking a writing challenge that explores almost every facet of his life intimately. He also reflects on his life highlights prior to illness, fumbles his way through understanding some personal dilemmas in the present, then explores his ambitions as he plans for a brighter future when quarantine lifts.

The author also recalls how he became quadriplegic after getting sick during a backpacking holiday to Europe, and how despite not being able to move his limbs he is determined that he was put here to thrive—not survive.

There are highs and lows, obscure ideas and confessions, revelations and humorous accounts, and blimey even some shocking truths exposed. But above all, a raw, robust, resilient human spirit shines through in the face of adversity.

• Language: English
• Publisher: Balboa Press AU
• Release date: Nov 5, 2021
• ISBN: 9781982292386

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ISBN: 978-1-9822-9237-9 (sc)

ISBN: 978-1-9822-9238-6 (e)

Balboa Press rev. date: 11/04/2021

For my mental health

Because sometimes we need to

BURST our own BUBBLES

in order to move forward

Contents

Marianne Williamson Quote

Preface

Introduction

About Pre-Diary Life

Other Things You Should Know

The Diary

PART 1: AUTUMN

EPISODE 1 – APRIL 27

EPISODE 2 – APRIL 28

EPISODE 3 – APRIL 29

EPISODE 4 – MAY 1

EPISODE 5 – MAY 2

EPISODE 6 – MAY 4

EPISODE 7 – MAY 5

EPISODE 7 – PART 2

EPISODE 8 – MAY 6

EPISODE 9 – MAY 8

EPISODE 10 – MAY 9

EPISODE 11 – MAY 11

EPISODE 12 – MAY 12

EPISODE 13 – MAY 13

EPISODE 14 – MAY 15

EPISODE 15 – MAY 17

EPISODE 15 – PART 2

EPISODE 16 – MAY 18

EPISODE 17 – MAY 19

EPISODE 18 – MAY 20

EPISODE 19 – MAY 22

EPISODE 20 – MAY 23

EPISODE 21 – MAY 25

EPISODE 22 – MAY 26

EPISODE 23 – MAY 27

EPISODE 24 – MAY 29

EPISODE 25 – MAY 30

EPISODE 26 – JUNE 1

EPISODE 27 – JUNE 2

EPISODE 28 – JUNE 3

EPISODE 29 – JUNE 4

EPISODE 30 – JUNE7

EPISODE 31 – JUNE 8

EPISODE 32 – JUNE 9

EPISODE 33 – JUNE 10

EPISODE 34 – JUNE 12

EPISODE 35 – JUNE 13

EPISODE 36 – JUNE 15

EPISODE 37 – JUNE 16

EPISODE 38 – JUNE 17

EPISODE 39 – JUNE 18

EPISODE 40 – JUNE 20

The Covid Saga

PART 2: WINTER

EPISODE 41 – JULY 20

EPISODE 42 – JULY 21

EPISODE 43 – JULY 23

EPISODE 44 – JULY 24

EPISODE 44 – PART 2

EPISODE 45 – JULY 25

EPISODE 46 – JULY 27

EPISODE 47 – JULY 28

EPISODE 48 – JULY 30

EPISODE 49 – JULY 31

EPISODE 50 – AUGUST 1

EPISODE 51 – AUGUST 4

EPISODE 52 – AUGUST 5

EPISODE 53 – AUGUST 6

EPISODE 54 – AUGUST 8

EPISODE 55 – AUGUST 9

EPISODE 56 – AUGUST 10

EPISODE 57 – AUGUST 11

EPISODE 58 – AUGUST 13

EPISODE 59 – AUGUST 15

EPISODE 60 – AUGUST 16

EPISODE 61 – AUGUST 24

EPISODE 61 – PART 2

EPISODE 62 – AUGUST 25

Covid Blag

EPISODE 63 – AUGUST 26

EPISODE 64 – AUGUST 28

EPISODE 65 – AUGUST 29

EPISODE 66 – AUGUST 31

EPISODE 67 – SEPTEMBER 2

EPISODE 68 – SEPTEMBER 3

EPISODE 69 – SEPTEMBER 5

EPISODE 70 – SEPTEMBER 6

EPISODE 71 – SEPTEMBER 7

EPISODE 72 – SEPTEMBER 10

EPISODE 73 – SEPTEMBER 11

PART 3: SPRING

EPISODE 74 – SEPTEMBER 12

EPISODE 75 – SEPTEMBER 13

EPISODE 76 – SEPTEMBER 14

EPISODE 77 – SEPTEMBER 15

EPISODE 77 – PART 2

EPISODE 78 – SEPTEMBER 17

EPISODE 79 – SEPTEMBER 25

EPISODE 80 – SEPTEMBER 26

EPISODE 81 – SEPTEMBER 28

EPISODE 82 – SEPTEMBER 30

EPISODE 83 – OCTOBER 1

EPISODE 84 – OCTOBER 2

EPISODE 84 – PART 2

EPISODE 85 – OCTOBER 4

EPISODE 86 – OCTOBER 6

EPISODE 87 – OCTOBER 7

EPISODE 88 – OCTOBER 8

EPISODE 89 – OCTOBER 12

EPISODE 90 – OCTOBER 13

EPISODE 91 – OCTOBER 16

EPISODE 92 – OCTOBER 17

EPISODE 93 – OCTOBER 18

EPISODE 94 – OCTOBER 20

EPISODE 95 – OCTOBER 22

EPISODE 95 – PART 2

EPISODE 95 – PART 3

Burnt Out

EPISODE 96 – OCTOBER 26

EPISODE 97 – OCTOBER 27

EPISODE 98 – OCTOBER 29

EPISODE 99 – OCTOBER 30

EPISODE 99 – PART 2

EPISODE 100 – OCTOBER 31

PART 4: SUMMER

The Blog Counselling Challenge

The Rules

Marianne Williamson Quote

A passage from her book A Return to Love

Our deepest fear is not that we are inadequate.

Our deepest fear is that we are powerful beyond measure.

It is our light, not our darkness

That most frightens us.

We ask ourselves

Who am I to be brilliant, gorgeous, talented, fabulous?

Actually, who are you not to be?

You are a child of God.

Your playing small

Does not serve the world.

There’s nothing enlightened about shrinking

So that other people won’t feel insecure around you.

We are all meant to shine,

As children do.

We are born to make manifest

The glory of God that is within us.

It’s not just in some of us,

It’s in everyone.

And as we let our own light shine,

We unconsciously give other people permission to do the same.

As we’re liberated from our own fear,

Our presence automatically liberates others.

Preface

The year 2020 was an absolute shit show, so much so it would be nice to erase the whole thing and start again. But through the hardships, pivotal seeds also sprouted – hashtag silver lining.

Hopefully this diary is one of these.

But back to the circus…

Obviously, there was the COVID-19 pandemic, but before that, half of Australia burnt. Then America and China were having fat political beef (which many were speculating could be the start of WWIII), crikey, Trump even questionably assassinated high-ranking Irani General Soleimani. Plus, basketball superstar Kobe Bryant tragically passed which seemingly stopped the world. Oh my goodness, there is so much more to report on… only, let’s just use the word eventful and get on with it.

So, yeah, this is a brief summary of the world climate at the time this diary was written. However, the primary focus of this body of work isn’t this shit show at all; it’s another one. You see, this diary focuses on the micro, not the macro, or maybe the microcosm of a young man living in care – and that is me!

Hi, my name is Mark, and my life is pretty damn complex, to say the least. I mean, much like everybody, I am seeking to find my place in the world, striving for success and searching for life’s meaning, and dare I say it, some happiness too.

Only much like 2020, my life has been very eventful. Or nah, I think I started out quite normal. I grew up in a loving family environment, and sure there was some struggle and drama, but I have some fond memories as well. I knew the freedom of walking down the street, the convenience of driving, what it felt like to work and have a social life, and to, heck, even kiss girls. I never understood or knew just how lucky or privileged I was.

In the year 2003, my whole life changed.

Amidst a backpacking holiday to Europe, I became sick. Very sick. And look, I’m not going to get into the nitty gritty of this drama just yet, but what I will say is that the result was quadriplegia. Nope, I cannot move any of my limbs whatsoever. In fact, I’m writing this to you right now via a sensor on my head.

In saying this, mate, look I don’t want your sympathy or amazement, but rather, I suppose, your understanding. The understanding that despite my physical impairments, or even how I look, how I roll, you know I really am just a person. I have dreams and desires, needs and wants. Heck, I can even be quite the melonhead at times. Yep, I am human. A human like you in most ways. Only, weirdly, it’s like people (and the world) forget this at times. Most only see a disabled man, and as a result, I lose myself even more. I feel like an object not a person. Only I wasn’t put on this earth to be purely a job and paperwork for a carer or nurse, to have to act according to what others think my best interests are, or to experience loneliness and hardship like you almost wouldn’t believe.

Instead, I was put here to thrive not just survive. Or so I reckon.

Only how so?

This question plagued me for years. I always lacked self-worth and, at times, felt like a societal burden – resulting from my disability. I never thought I was simply different or that I had other things to offer, I just thought I was unequal. Now, this led to some pretty bad thinking and thoughts - some self-defeating and others of self-hatred - which most would call depression yet, I like to think of it as confusion. Nevertheless, no matter which way you look at it, by the end of 2019, I was undeniably at one of the lowest points in my life. I was trying so hard to move forward but could never quite manage it. And despite seeing psychologists and exploring several other avenues for help, nothing was working. I ended up completely giving up on myself. I was overwhelmed.

As a seeker and self-improvement kinda guy, for a while, I was looking for a way to dig myself out of this hole. And honestly I’d began to wonder if I could do it at all. My heart was broken in so many ways and for so many different reasons. I was stuck in a body that was a prison, and my residence was becoming more and more of an institutionalised, hospitalised mess. This was despite some of the awesome people around me (staff included). I think I’d finally just had enough of all the crap. Seventeen years of sitting in the front carriage of the rollercoaster had taken its toll.

I mean over the years I’d had many successes and breakthroughs but I was still sitting in a silent hell, a hell that was destroying me from the inside out. I was so deeply unhappy, yet I was also the strong guy who was expected to overcome all odds – as I’d seemingly done in the past. Furthermore, personally, I’d found no satisfaction in achievement or material gain. What I wanted was the simple things in life—mainly love, but also a home, purpose, nice sneakers, and an education. Yes, I always wanted to be smart because so many people doubted me as a youngster, even throughout my illness.

This theme of overcoming doubt (self-doubt included) and proving people wrong became an integral part of who I am, and at some points, maybe became more important than following my own dreams. Sadly, I just wanted respect and to win so badly. I thought this was everything – oh how wrong I was. Even my intention for 2020 was to see the blending of proving people wrong and pursuing my love of education. I was poised to have a massive year at university (two different ones in fact), and this was going to be my great, big distraction from life and my unresolved pain. Again, I was hiding behind achievement or in this case, the pursuit of it. Only the world had different ideas – well, for everyone it seemed.

I won’t go into it too much now, but I remember the exact day. It was Friday 13th March; I was at RMIT city campus. It was the second week of semester, and I was looking at every single person like they were diseased, infectious, and it wasn’t only people—I was scared to go near any surfaces either. It was terrible. The media’s fear-mongering had worked. Oh, I guess, what also contributed to my fear was the fact that there was a deadly virus going around, COVID-19. Um, a minor detail. While it might not be deadly for some, for me though, being so physically compromised already, if I caught this thing, I was freaking toast. I knew it wholeheartedly. So, from that day forward, I went into self-isolation indefinitely. All of a sudden, my world existed completely within a twenty foot radius. Weird balls.

So, essentially being stuck in my bedroom, being the optimist that I am, I tried to see this as a blessing. It put my life on hold; I’d deferred university and all that, yet I now had the time to sit down and work through my problems – and learn more about out who I am. This became my new 2020 intention. To work through my shortfalls, the straight-up tragedy of my life, and to confront acceptance. Blah, blah. Still, I think there’s a lot more to it than even this, and something I can’t sum up in a pretty little sentence for you. Sorry.

In alignment with this intention, I did have a brain-wave though, I decided to try and write my way through my struggles—much like some people do with journaling or free-writing, I suppose. So, I employed this technique I refer to as blog counselling, and to be honest, from the outset, I didn’t really know what I was doing or what was going to come out. All I knew was that I loved to write, that I was desperate for some sort of healing and peace, so I thought I’d give this blog counselling thing a shot.

Hence, this book comprises a journey, my blog counselling journey—my unique and organic process. From highs to lows, from confusion and depression to victory and elation, there really is a bit of everything in here. Or to put it another way, there really is my heart and soul in here.

Also, by no means am I saying to take everything in here as gospel. What I wrote on any particular day is a reflection of how I was feeling in that moment, something I was working through or straight-up needed to hear. I’m sure the content within will be eye-opening and thought-provoking for most.

A censorship-free snapshot into a world that many people are scared of, don’t know about or understand. So, today we lift the veil with some…

Ramblings from a complex quadriplegic in quarantine.

Introduction

Before embarking on this exquisite ballet of both wisdom and bullshit, you should probably know some stuff first. Typically, I won’t lead with the more technical aspects of my life. Only, in this case, I think it’s most appropriate to, you know, set the scene a little, to do a bit of a drawn-out elevator pitch. Then, at least, you’ll know a little of who’s talking here. To give you some perspective of my perspective.

So, I’m an educated, articulate… nah. Actually, I’m a bit of a bogan who lives in suburban Melbourne, Australia. If you’re wondering what a bogan is, maybe do an online search for Chris Franklin’s music video Bloke. This explains my youth.

I grew up on skateboards, BMX, bongs, and beer, and somehow squeezed in high school and basketball along the way. I always wished I was a ladies man too, but I was mostly just one of the boys, causing havoc and making people laugh. I think I just love making people smile. Actually, to give an even bigger insight into who I am, to this day my favourite album is Metallica’s Ride the Lightning and I still listen to it regularly. Head, bang, bang.

But, umm, with that educated bit… well, that’s not entirely a lie. I feel like I’ve spent most of my life studying. From accounting to politics, advertising to now literature, I have a pretty big thirst for knowledge. This is something that I’ll generally never talk about publicly (I’m a bogan, remember?) but the older I get, the more I own this. Brains and free thought are very important human assets. In fact, they’re downright sexy. Anyhow, I get this thirst for knowledge (and understanding) thing from my dad. He is a crazy-smart bloke—Mr. Forty Year Subscription to National Geographic, himself.

A few other random words I’d use to describe myself are: dreamer, trailblazer, spiritual seeker, gentleman, adventurer, marathon runner (true story), smart-ass, doer… and pretentious fool ;)

Alright, now to a different side of the technicalities, my health. I try not to let this define me only, in a lot of instances it does. And sadly, this is probably the thing that drew you to this book. So, yeah, I’m a quadriplegic. I pretty much can’t move a single muscle from the neck down. And from the neck up, I suffer from some partial paralysis too. Like, I can’t swallow; when I can talk it’s extremely slurred, and heck, I can’t even close my eyes properly (sleeping can be a bitch). Also, as far as medical interventions go, I’ve had a tracheostomy tube inserted, so now I breathe via a ventilator 24/7. Plus, I have a feeding tube. But not much else. Still, with these alone and not being able to move, man, life can get complicated—not impossible, but complicated.

For instance, because of my disability I live in care. In fact, I live in a specialist care facility for people on ventilators, high-level physical dependency and complex medical needs. At full capacity, we have 20 residents—both permanent and respite. Yep, we have the ambulances here a lot, and drama. Some interesting people can come through the doors, and some train wrecks too. Like most of these complex conditions can be pretty hard to deal with for family, staff, and the person alike – but in general, everything is dealt with pretty well. To sum things up in another way, as a carer once said to me, It’s okay to work here, not live here. Well, I’ve lived here for fifteen years.

Who do I live with or who is present in my life? Well, because of privacy I’m going to be very vague here. Again, to focus on the more technical aspects (and not the people or their personalities which I’d much rather do), my housemates have a vast array of medical conditions including: muscular dystrophy, a spinal cord injury (ventilated quadriplegic), a debilitating genetic disorder, and someone with Down syndrome. Each are very low-functioning in their own ways which I hate saying but, this is the sad reality. Also, I have bugger all in common with any of these people. Small talk happens on a good day, random screaming and disruption on a bad one. Yeah, we’ve all been chucked in here like one big pot of minestrone soup.

As for the staff, well, they’re the antipasto platter. But this platter goes far beyond the traditional sundried tomatoes and cheeses. No kidding, absolutely anything could turn up on there—Brussel sprouts, raw eggs, even dog poo. I’m serious. But let’s leave my bad food metaphor behind. Honestly, any staff member could turn up on any day. They try to provide regular staff, but it’s not consistent. And man, I’ve worked with some loose cannons. With the mishmash of personalities, cultures, personal agendas, workplace politics, and skill-sets, it’s like I live in an international airport. Don’t get me wrong, I love some of these people but geez, some others drive me nuts.

It’s a weird life to say the least.

Nevertheless, I still have my own dreams and ambitions. I have purpose to fulfil. Only, honestly, as it does with many people, this medicalised and institutionalised life has swamped me for the past few years. I’ve wanted so badly to break free (*insert Queen interlude*) for some sort of change or difference, but all I ended up doing was sinking. I just didn’t know how or where to move, or how to deal with it. All the while, I kept watching others move on with their lives, making that sea-change. I was stuck in this mental and emotional hell. I’ve never felt frustration quite like it in my life. I mean, I have always imagined so much more for myself, and I knew without doubt in my heart that I was capable of it. Yet here I was a drugged-out mess and a lump in a bed.

So, I began to search for ways to reconnect with myself, and without repeating what it states in the preface, essentially my path forward was to use writing as a tool. To embark on this blog counselling journey which this book comprises.

You see, beneath the bogan-ness, my intelligence, even all this health-related hoopla, I am a writer at heart. I get this from my mum; she was a beautiful natural writer, though never published. And apart from enjoying writing myself, it’s how I connect with my mum (who tragically passed away several years back). Weird stuff, I know. When I write, it’s like she’s around. I think that’s why I find peace in it. Hence, writing is a bit of a necessity for me. Not only is it how I clarify my thoughts, but it’s just part of who I am.

I am obsessed with the potential of a blank page.

One day, I’m even hoping to make writing a career. How so? Well, I’m not exactly sure yet – but I have had the outline of numerous autobiographical books just magically fall out of my head. Haha.

Godspeed.

Enjoy.

About Pre-Diary Life

‘You don’t choose a life, you live one’

Emilio Estevez (The Way)

After an enjoyable childhood, an experimental few teenage years, then having aspirations of becoming an advertising copywriter, it was a simple trip to Europe that would change my world forever. A random neurological event took place over there, something with no warning. To me it felt just like a common cold and I treated it as such.

After arriving back home in Australia, within a matter of months, even the commonplace desires of marriage and family were forced to the wayside as a bizarre disease process took hold of my body.

Talk about weird, one day my body just stopped working

I was facing a barrage of tests, hospital hopping, and doctor shopping – it was a whole new world for me. I explored cure A, therapy B, all the way to miracle Zee. And despite all of my efforts, I failed to get a conclusive diagnosis. Still, there was mention of numerous sinister illnesses (with the main catalyst being Motor Neurone Disease); it was a hard reality to face that as a twenty three-year-old, I was dying.

Nevertheless, with no concrete diagnosis, I began to explore an abundance of alternative therapies. From naturopaths, Chinese herbalists, even experimenting with hyperbaric medicine (just to name a few), I felt like I tried it all. Only, my body had a mind of its own. I continued to deteriorate rapidly. It was terrifying. I even began to lose movement in my limbs.

In desperation, my family and I moved to Cairns because most of our avenues had been exhausted in Melbourne. I always found the hot weather to be beneficial for my health. At one point, two fingers even temporarily started to work again but nothing more. I don’t deny it, we had some fun times up there, some crazy awful times as well, but the sad reality was that my decline continued. I was now confined to a wheelchair, my symptoms became more and more pronounced, and I also suffered aspiration pneumonia (respiratory failure). Boom, hospital.

Now, what would you do if you woke up one morning in a strange place with a tube down your throat, and paralysed? Yep, this was my predicament. Even then, this escalated as my treatments were not working. So, not only was I in intensive care on life support but I then had a hole cut into the base of my neck so that a machine could literally pump air into my lungs. What’s more, I was completely unable to talk, unable to eat or drink, and was told that I never would again.

A Medi-Vac flight flew me back to Melbourne – tracheostomy included. Then after several very quiet months of hard work on a specialist respiratory hospital ward, I was finally able to breathe (mostly) on my own again. As such, the tracheostomy tube was removed. I did have to use a nasal mask part time now, though mainly at night. Oh, and I did have a PEG tube (feeding tube) inserted, so that one part was right, I would never eat or drink orally again. But hey, Captain Obvious, I was still at rock bottom. I had a real fight ahead of me to gain any sort of life quality back. Plus, I was now going to have to do it as a quadriplegic in a wheelchair.

Also, right about now my mum tragically passed away from a brain tumour. It was so aggressive that she died exactly three months after exhibiting her first symptoms. It was all so messed up, I can’t even put this part into words.

Still, I had to keep moving forward. And with no diagnosis and being far too sick to live at home, I found myself being thrown around a few different care facilities. One of these was utterly brutal with freaking nasty nurses – hard times. Nevertheless, after finally finding somewhere to reside (where I still am today), I began to look for creative ways to get my life back. I started with things like concerts, then art classes (painting with a brush in my mouth), and later, regaining some old friendship circles – trust me, it was not easy.

Living with a chronic illness is not only confronting and challenging for those going through it, it’s also difficult for all of those around them.

It still took some time to find my feet though, in fact, I just kept trying things to see what worked and what I was capable of. One time I even won a commercial t-shirt design competition – sporting the logo of fictitious character Bufferman that I created. I even managed a meet and greet with the North Queensland Cowboys – my rugby team from when I was living in Cairns. This was my first real taste of the opportunity in adversity.

I kept trying and growing, and as it turns out, I was prepared to do the hard yards. I took the initiative to think and re-think what I wanted out of life and how best to get it. Then I decided that a bucket list seemed like a pretty logical way to encompass what I desired – also a way to keep me focussed and motivated – and with that, I started to do some rather crazy and extraordinary things I surprised even myself with some of these. To this day, I still can’t believe I was a nude life-drawing model. Gross.

You see, what I realised was that despite all the health stuff, and obviously I didn’t have a mortgage or kids, I could wholeheartedly focus on and invest my time into passions. I had the time to follow my dreams – one of the few advantages of my physical predicament, but a big one.

The bucket list provided many memorable moments. Some of these included: running a half marathon in my wheelchair (now a forty two kilometre full marathon), appearing on the television show Neighbours, and even the unthinkable goal of kissing a supermodel. Also, I’ve partaken in a private cooking class with a MasterChef host, entered the Around the Bay in a Day bike ride (on a wheelchair-cart bike), and even given away countless free meat pies at an AFL football match. Unfortunately, I started to get really, really sick