Episode 41: The New Normal

So with all my rants thus far this is what was happening in my sheltered little world, but obviously life on the outside chugged on, people’s lives chugged on, and I had no idea about it or them at all (or I chose to ignore it). News, current affairs, friendships, weddings, man I was way out of the loop; I mean my focus had been on survival and disability, and that was about it. Actually it was much like in that Oscar winning movie Room, I kept telling myself that these four walls were the whole world. A world of restriction. Anyhow rightly or wrongly so I still saw myself as this awkward cripple sitting in a wheelchair (well in this room) – seriously – and how could I overcome that? And I was also dealing with all these static health needs and routines too. I had no real confidence to face this world. So the crux of everything here was identity and how could I again adapt. Was I now the ‘me’ with a disability alone, or a new hybrid disability dude, or would (or could) others see ‘just me’ again? And this was up to me as well. You know, the seeing me bit, it was so important. I mean this disability thing was hard for me to accept, like to put it bluntly I couldn’t move anymore (like fuck), and this had me thinking all my dreams had just died. I’d never live up to my potential. Only I don’t think I ever accepted this, so in a way I was always destined to fight disability’s conventions. But no matter what I say here or how many different circles I talk in, the reality was that the real job of regaining independence had only just begun.


But how far did this new normal go and what was I dealing with? Well there was heaps of stuff – like my life was dictated by a medication timetable haha. Nah for example there was now this whole time thing, as oh my gosh everything took bloody ages. Nope there was no such thing as just chucking on a t-shirt anymore, or even taking a quick shower for that matter. My life was at snail’s pace. Then there was all the extra steps to everything – like planning around my physical capabilities, packing special meals, wheelchair access, and even safety troubleshoots. And when I did go out I would literally pack the kitchen sink, and have a guidebook mapped out in my head. I mean the extra effort with transport, and Carers, and minimal access into suburban houses it really can restrict your everyday freedoms. And steps bugger me, nightmare. Also, at first I didn’t want to cause anyone any hassle or be the spectacle. Yeah great, one time I got stuck in the doorway at a busy pub. Yep there were so many things that impacted my life that I’d never even thought of before; and heck I’d taken so much foregranted in my ‘previous life’. So sure I might have looked normal, and yes maybe I was navigating my chair around (by having someone push), but when someone goes to shake your hand and realizes you can’t move at all, that glazing of their eyes tells its very own story. Mate, that’s a really odd dynamic. In actual fact I felt like my disability was a barrier between connection. Also, on that note, I was still yet to work out how I was going to explain all this to my friends – I mean really I just wasn’t getting better.


And in particular, the thing that I just didn’t know how to reveal was my weakest link. Like I said, I look kinda normal (in photos anyway – don’t laugh), but apart from not being able to move my biggest health concern/issue was no doubt my breathing. I suppose it is just common sense really, all my other muscles had turned to shit so why not my chest muscles too? But it’s weird no one ever thinks of it. And well to point out the bleeding obvious here; if you don’t breathe you die right – sad but true – and I know I faced this reality every single day. Bom bom bom… sorry to be so dramatic but this is truly something that was always in the back of my mind (and often forefront). My new normal. But revealing this now, in turn obviously this will raise all the ‘how bad is it, how do I combat it’ questions – well I can’t lie it’s pretty bad. My breathing has impacted all of my life, and I damn well struggle a lot of the time as well (especially when tired). And another weird thing, it’s only in my wheelchair that I can breathe properly [without assistance], so sitting bolt upright I suppose. You see one thing that pictures don’t show is that I had to move from left to right, or rock from side to side to move my diaphragm for every breath – and as I just mentioned when tired this process gets pretty full on. And yet another problem with that is the tireder I become, the more and more I move, then the shallower my breath becomes, and as a result my already weak voice just doesn’t have the oomph to make a noise. So I basically got to the point where I could barely talk. I hate this, especially when I’m out and about. So this is just some of what I was dealing with.


Then to give my struggling diaphragm a break I had to use a certain amount of ventilation, or a respirator. Now remember how I was in Cairns, and that I ended up with a tracheotomy (the breathing tube inserted in my neck), well my breathing never fully recovered from that point. Ever since this I’ve actually had to use some sort of ventilation just to stay alive (non-invasive of course), only that was mainly at night. However nowadays (well at this point in my story) this whole ventilation business had just become an accepted part of my everyday life – shit huh – and I’m even on this thing in the mornings and the evenings. Still I think I was good for about five to eight hours of breathing on my own, but pretty much anything beyond that I found myself chained to a machine – which in all honesty left little time for anything else. Which I should also mention that 99% of the time I’m on the respirator I was in bed; and it’s almost embarrassed by how many hours a day that was – I but you didn’t expect that!! Nonetheless I tried make the most if it. Like something I’ve already mentioned numerous times throughout these Episodes, ‘you’ve gotta make the most of what you’ve got’; so I became a full-on movie buff. And from Hitchcock to Tarantino, and even some Scorsese and Kubrick I delved into the classics. Yeah my brain seemed to be working fine, actually my head & neck muscles remained the same too (well maybe my neck was a little weaker) and my trunk some wiggle room – yet my extensive chest muscle weakness would continue to haunt me over this period.


Now in saying all this I also feel it necessary to defend myself a little, like you must be thinking man what a lazy bastard spending all those hours in bed, but the rest (the respirator included) was purely to save me from exhaustion – and that happened very easily. You see, you know how I mentioned the whole side to side movement thing to breathe, well after that five hours or whatever of that, I was buggered. So no joke I needed all the bed rest I could just to regain my stamina. But look admittedly I am a little lazy, and I could push myself a little harder, but struggling for every breath isn’t really much fun either -especially when you get no results. On the other hand though, if recovery was on the table I’m sure I would’ve pushed myself much harder, but for the time being I just had to deal with the limitations – or here you go… how would you deal with it?? Oh anyhow another conundrum I now faced was a suppressed cough reflex, or essentially the strength to cough sputum up any longer. And now being unable to breathe properly or sufficiently move my chest wall, a consequence was that the sputum tended to build up regularly. Hence I needed to find a productive cough, and thus I started using a cough-assist machine (a giant inhale/exhale vacuum cleaner). I used this anywhere from 5-15+ times per day and became very reliant upon it. – so I guess others truly did only see my good side


But I was still wondering how I could tell people all this, especially how do you tell someone you just can’t breathe anymore? Well shit I didn’t know. Like no seriously I just didn’t know. The response of shock is what I feared the most, and maybe the title of the ‘sick guy’ I suppose. Especially as on the inside I aspired to be far from these. So in a way I was almost prepared to go underground, the thought of the above conversations scared the shit out of me; yet another part of me deeply missed people. And I was beginning to miss my friends. Hence I could smell the scent of the world looming nearer, and almost like the sweet smell of bakery bread in the morning I craved to take a bite. I’m sure my new residence opened up this line of thinking. Would I have to face these dreaded conversations? Well as ironic as could be, right at this time a Carer introduced me to this new thing called Facebook, a social network. Yep welcome to the 21st century – judging people by their page. My conviction was instantly tested. I mean I wrote a few things on there but never once mentioning my health, only bam then within weeks I got invited to a High School reunion. Shit, I was not ready for this exposure, and in turn gave the biggest bullshit excuse ever. I felt so bad. I was editing my own life. I failed. I didn’t need pity (that’s what my mind was thinking), it was support that I craved. So with this failed venture I decided to start slow, and I stayed in the real world. I began to invite some friends over to dinner, which I must say was kinda weird inviting people over to an institution of sorts.


Anyhow I had to suck it up, and again make the most of the abilities that I had, and get on with life. For me this meant a lot of imagination and innovation, but most of all it meant confronting a number of my demons and battling the norms of what was expected of somebody in my shoes. Especially with this breathing thing, the successes that I had seen only encapsulated a full family life – but I wanted more, somehow! Mediocracy just wasn’t an option for me. So everything was going to be new, you know like scary new, and I could see an imminent failure staring me right in the face – stop breathing, die… fark! But my philosophy was actually pretty simple here – say yes more (and don’t die). Like when was the last time you tried something new? Well I guess that’s just how I’ve always liked to live life; I am always trying new things and pushing new boundaries, so the whole pushing through disability thing was actually just an extension of my true self. Henceforth I couldn’t run, I couldn’t walk, I couldn’t play tennis (as much as I loved to joke about it); so everything sort of came down to jobs and tasks whereby people could directly assist. Otherwise, I just had to depend purely on my brain and sensation, or I had to somehow create a situation where my senses would become aroused. And this was despite my dreams apparently dying, especially of this talk show host thing, I could barely even entertain that thought. But I learnt that irony didn’t matter, disability didn’t matter, chasing and fulfilling dreams is best done in your own authentic way anyhow.

About Mark

For all things a day-dreamer, a larrikin and an undeniable fighter. Mark advocates for both Adversity and Lyme Disease; and boasts a real passion for green living, nutrition and organic foods. Oh and he's a quadriplegic too. This spirited life coach, with prior background in marketing & advertising, now has more recent aspirations that include becoming a published author, and a business owner too. And when well enough, Mark’s also ticking off his bucket list, and he also volunteers with the Starlight Children’s Foundation. Mark is an ACIM student, an adventurer, and a sneaker collector. His dream is to one day get better and ride a bicycle around Australia.

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