Emotions in Care

So… Colonel Sanders… I’m still a bit wishy-washy about this new direction for my writing. Or, truthfully, I feel like I’m just needing something familiar at the moment. To rant in a way where it’s somewhat comforting, to gobble-up those chicken and chips, so what I’m saying is that I’m holding off on this new direction for now. Actually, for the next few days I feel like I should get some stuff off my chest about moving “home.”

Nb: I am fairly certain what this new direction for my writing will be, and for a hint, it’ll be to embrace some of my life coaching skills.

Anyhow…

Something I’ve noticed of late, in both my heart and mind, I really do want to change. Oh who am I kidding, I’ve felt like this for years. Only I’ve been very stuck and in so many ways, sheesh it’s been a mental and emotional melee.

I mean, it’s like no matter how hard I’ve tried to avoid this stuckness (by undertaking various new adventures and alike), urrgh, I still wake up in the same paralysed body every day. I’m alone, stinky, and in very much the exact same situation. It kinda disgusts me. Still, it’s just my fate I guess, and something that I have to struggle with. I have no control over it.

Nevertheless, I do try to control this, and by control I’m meaning that I do try to learn, undertake new projects; even try to make positive changes. This is to try and influence overall change, and to feel alive. Only, again, I never ever get the results that I want. It’s like I take two steps forward, two back. Frustrating, heart-breaking. So yeah, it’s kinda like, no matter how hard I try, I still wake up in this same shitty situation every day. Yet, for some crazy reason I do keep trying.

Trying is what I have, in fact, it’s what I’m good at – persistence.

But geez, the lack of my “ideal” results, it does play on my mind a lot. You could even say that it’s a total head-fuck.

To use a lame metaphor: it’s like when I stand up, it’s like my health sits me straight back down again.

My health conforms me, it… OMG how many times can I say “it” in a row… it is like “society”, institutional living and my body have set these parameters that I’m not allowed to extend beyond. Blah, blah, whinge, whinge. And this is what I’ve always been striving for, to extend beyond these boundaries. So sure, up until now I’ve never been able to get the break I want or have needed (to break down these borders), which hopefully my new apartment can help with. Fingers bloody crossed. But I’m certain some borders will always remain.

Someone actually used this example/metaphor with me the other day: it’s like I’m a racehorse carrying that extra penalty weight (ie. my disability), and yet here I am in the same race as everyone else. Even trying to win.

Yeah, so this all sorta sucks but I’m beginning to realise some other brutal stuff too. Whoa, this is a full-on ventfest! You see, on top of all this stuckness ad these borders, another thing that has been coming to the surface for me lately is that all this beating my head up against the wall and countless failures (like waking up in this same shitty situation every day), it has actually made me a little bit crazy. Or, it’s like I dismiss all the good stuff (the courage stuff) because I’m constantly having this shit show shoved in my face. Or, it’s like a part of my heart has died. I don’t know if you can even imagine what it might be like, or maybe you can? Like no matter how many hours of coaching I do, no matter how positive I am or what I visualise, every day there’s this incredible weight sitting on my shoulders. There’s almost nothing it doesn’t interfere with either and there is no escape, the flaming fat jockey.

Furthermore, oh man these last twenty years have really changed my mental range… hm, nah maybe a better way to put it is to say that I’ve become numb. Or, maybe yet another way to put this is to say that I’ve built up walls (as a protection strategy) and they block both my pleasure and pain. It’s just this constantly getting knocked over stuff.

Like for a frivolous example, just last week my trachy balloon valve had a fault (because maybe it got damaged?), so one afternoon I was having all these problems where I couldn’t get a seal (which I didn’t know at the time this was because the balloon kept deflating), and on two occasions the balloon had deflated so much that I was bigtime struggling to breathe. I even had to press the emergency staff assist button, twice. Then the result, there was a kerfuffle, I had to get bagged, then technically I suppose you could say that I had to have an emergency trachy change.

But the thing is, I’m so desensitised to this stuff now, I didn’t even bother to tell the staff the next day or even my dad for that matter. Ordeals and trauma like this, it’s just part of my everyday life now – and as such I just sweep whatever it is under the carpet and move on. Pretty sad. I kinda numb out life because it hurts too much. I mean, on a few occasions throughout this particular afternoon that I’m talking about, I didn’t stop breathing but I was in no way getting enough air, and as I’m sure anyone with breathing problems could testify, this stuff is traumatic. Especially getting an emergency trachy change, yet here I was, I barely even blinked an eye. I’ve been through so much of this stuff now it’s like second nature.

Still, it’s this sorta stuff (and I suppose maybe this trachy change event instigated it) that started me thinking about how my disability and health has changed me as a person. This is quite the rabbit-hole actually. And some stuff that I won’t get into today (as I’m still processing) but it’s crazy to see how my behaviours have changed as a means to help me cope. I am so institutionalised.

This is why I’m pointing out this weird blend of stuckness, numbness… and we’re about to find out what else.

Aright… here we go, slipping back into my old writing direction of confused quadriplegic, haha. But in this messy head of mine, I’ve been figuring out some more of this stuff about how my disability has impacted my person. Specifically my psychology.

Anyhow, for the past few weeks I’ve been watching all this chaos with Kanye West and Adidas unfold. Damn, “Ye” really did say some stupid stuff. Then secondly, I’ve also been watching Elon Musk in regards to his takeover of Twitter, and one quote that really sticks out is how he claimed that he is a “free speech absolutist.” So, in other news, I think it’s fair to say that @realDonaldTrump will be reinstated on Twitskis before we know it – the orange dickhead.

But the thing about these three guys represent (at least to me), whether you love em or hate em, each are very opinionated and they speak their minds. And to circle this back to how my disability has changed me, well seriously, I reckon I’m now one of the most unopinionated blokes in the world. Or, at least I never say anything controversial out loud. I am Switzerland.

So, what I’m beginning to realise, I’m just not that opinionated anymore. I make factual accounts, blah, blah, but (because of my station in life?) I never step on toes. I’ve been self-silenced and supressed. Again it’s back to the whole being institutionalised thing.

You see, this is because having lived in care for so long, I always felt that I had to comply with nurses and the working environment. Plus, nurses hate opinionated patients, especially patients who complain. And what I figured out very early on, if I made myself easy-going and showed that I was okay to wait, in the long run I ended up receiving better care. It’s a pretty sad situation actually, and this mainly came about because I’ve always been so dependant. What it felt like, it’s like the nurses always had this power and control over me. So, while some nurses were kind and considerate, very helpful even, geez some others were so cruel and nasty because they abused this power. Others even abused this power subconsciously or unintentionally, maybe even by simply following company guidelines. And rather wrongly, because of all this, I morphed into this neutral non-opinionated mister nice guy.

Nb. I think I was always a relatively nice guy before I got sick, only now it’s this vomit-in-mouth neutrality and people pleasing (even just straight up putting up with crap and lazy staff) that concerns me most. The culture of us versus them, so I often felt outnumbered. Plus, often if I did make a complaint, bugger all was done anyway. Or, it just made my life harder in some way. So, I ended up not bothering. Sad.

I’m sure you can imagine how this might happen, and to be honest, I think this is where my eventual head-fuckery began. See, in addition to suppressing my opinions and feelings too, I also found myself fitting in with institutional routines and other people’s (staff) preferences. I must say, I initially did try to fight this system and expectation, only as the years passed, it just became easier to conform and I also discovered that routine was beneficial to my health.

Then another thing, now this was only brought to my attention recently, but because I have to have everything done for me (washing my clothes, cooking my dinner, even cleaning up the kitchen afterwards), a little part inside of you dies.

You never get the small wins, the simple satisfactions.

From my experience, these simple tasks of daily living, staff often just take over (mostly without consultation as they’re often very bang, bang task orientated) but for me it leaves this weird void. Like I’m sure you’re thinking “man, having everything done for me, that’d be so freakin sweet” only after twenty years of it I assure you that it’s the simple things that I miss the most. Surprise chef… I’d give almost anything to be able to make cheese and tomato on toast, with a dash of hot English mustard of course, haha. I loved hot and spicy food.

So yeah, look I suppose that’s about it. The gravy has been poured over the chicken. And I guess what I’m saying in all this, living life as a quadriplegic not only steals everything away from you physically but it’s also a mental drain as well. Like there are so many nuances and intricacies it’s hard to even cover, but I’d say to not feel like a burden is one of the biggest ones. Hm, nah, the biggest battle is to find your authentic self – like to be the person who you might have been. Which, the sad truth is, I’ll never know who that is. But, in my apartment and in my own space, let’s hope I can discover some of that.

To no longer be such a passive participant in my life, to live with a soul that’s been crushed by suppression and institutional living. Damaged goods. So, in short, I hope this apartment opportunity enables the discovery of the person that is me.

Twenty years too late… but better late than never. Or, as I’m starting to see it, it’s never too late to try and fix my brain. I just want to smile, I’ve honestly forgotten what it’s like.

Ps. Actually, I’ll share their whole comment about the racehorses here – as I found it rather helpful – and it is something that I am still processing…

“Have you been dismissing all you have achieved managing to survive your disability instead of recognising it’s been your greatest achievement to manage it? Haven’t you been focused on your outer world projects as being your achievement instead of managing to live with such a ‘handicap’ just as a race horse suffers as a restriction only in a life threatening way? Haven’t you been dismissing that your greatest achievement is living under great adversity and managing to come thru it every day? Haven’t you been dismissing the courage and virtues you draw on to life through every year of your life – dismissing it as just something I have to cope with? (Understandably not wanting it to define you) What if managing to survive this life is your soul contract for this life? You have already acknowledged you have lived far longer and achieved far more in that regard than ‘was expected’ by those around you and for me – those in Spirit who care for you.”

Yeah, a bit mind blowing that!

Part B

Just recently I was asked to write a short spiel about moving to the apartment and related experiences) by the organisation that helps with it This is something they then post on their website which in turn will hopefully help other potential residents who are currently stuck in institutionalised care to move into their own homes. Anyways, this is what I wrote…

HAPPY DAYS

When I became disabled twenty years ago, at the age of twenty three, obviously my life changed drastically. Suddenly I couldn’t move, I was having trouble performing daily tasks, then I also had all these strangers looking after me. But the biggest blow of all, suddenly I wasn’t able to live at home.

There were several factors involved here, but basically my home wasn’t disability friendly, plus I was also needing a high level of care. I really needed some sort of needs specific accommodation, especially as staying in hospital long-term is never a viable option.

So, initially I was thrown around between a few care facilities, then finally I landed in a twenty bed specialist disability housing service. This was sixteen years ago and sadly I still reside here today. I just never had any other options. However, woohoo, I am finally breaking free.

You see, what the NDIS has enabled, this is choice and opportunity. I mean, thank goodness, who wants to be stuck in a “mini nursing home” for sixteen years? Pretty awful. Still, this escape from rules and routines, unfortunately this hasn’t been that straight-forward either. In fact, this process has been unbelievably slow.

I first made my SDA application three years ago (this is when I first heard about the scheme), and ever since I’ve been stuck in this whirlpool of paperwork and bureaucracy. I’d fill out forms, wouldn’t hear anything for months, meanwhile I’m still stuck in this mini nursing home twiddling my eyebrows. It’s like I not only had to waste another three years of my life living in an undesirable location, I’ve actually had to put up with a lot of crap and unnecessary hardship too.

But the worst thing, I couldn’t make any long-term plans. It’s like I’ve been living in limbo for these past few years. Am I moving or am I not? Well, as it turns out… finally… yes I am.

My planned moving date is four weeks from now. I’m excited, nervous (mainly because I’ve become so institutionalised), but most of all I’m looking forward to some sort of autonomy. And honestly, I don’t know what this will look like yet, haha but I’m hoping it will look a lot like beer and pizza for breakfast. I just want to be a bloke.

After living in regimented care for so long now, I’ve forgotten who I am and blimey so many parts of my identity have been supressed, so this is what I’m hoping to discover in my new home – me.

It’s been a long time coming but I think I’m finally going to get what I need. Yep, a place where my family and friends aren’t afraid to visit.

Happy days.