Episode 38: The New Normal

The last days at the Respiratory Centre were a strange mix of emotion – excitement, trepidation, all with an underpinning of raw relief. Plus, as none of the patients could physically move to pack themselves, it was also an odd comedy of commands, orders and hot tempers. Anyhow of the five patients set to move, the lady who was meant to join me in my house died just days before. Her death, and watching her struggle in those final days was yet another added complexity too. It was oh so shit that she never got to see her freedom. And on this somber note it was now down to four, and one day prior to the official shut-down of the Respiratory Centre, two of us four patients prematurely made the big move to the new service. So left behind on that last night, it was just me and my room-mate. It felt like an abandoned warehouse. Actually I had no idea of the emotion this would bring out, not only in myself but also in the staff team as a whole. It was the end of an era. I mean this place had been a hospital ward for over fifty-something years, and even though I only experienced its dying days, it definitely had a culture. I’d even heard stories of back in the heyday – when it was full with thirty-something patients. So admittedly my own experience was a bit shaded, or pretty much like the twelfth round in a boxing match. The staff were tired, there was no love left to give, and as an institution it’d done everything now except throw in the white towel. But this was the night. It was all over.

As the next day arrived we slowly packed up the last few things; and as my room-mate had left just a few hours prior it was now my moment alone. I graciously said my goodbyes, had one final look around and then left the building for that one last time – the last patient ever, bugger me! The very last patient who survived a ward where thousands of people had suffered, faced mortality and in fact died, no doubt I was living their dream. It felt very surreal actually. But even as I was leaving the nurses and naysayers kept exclaiming that they’d see me back there in just three weeks, they were convinced that this dream of independent living for patients with such high-medical-needs was an impossibility. So egocentric. Some would have loved a major fuck up. But a bitter sweet ending or not, this was also an exciting time to prove them wrong – morons. Then all of a sudden there I was with my wheelchair strapped into the back of a van, surrounded by a dozen pillows, three giant bags of clothes and bedding, an absolute truckload of medical supplies, and my Dad driving this freedom van to bliss. We were gone. With a great sigh of relief many of my nightmares were now over. And as we took the corners, then the long straight roads, there was a definite hush in that van that day. It was like a giant pause that allowed both my Father and I to take stock, and I guess we were also thinking of the next reality that lay ahead.

It was defo the beginning of a whole new chapter, and when we arrived this was further accentuated as we were greeted by a whole new crew. Even by their eyes you could tell that they were committed to learning, growth, and care. This felt like something I wanted to be a part of. The new location was even a bit flashy too, in fact this whole transition showed a lot of promise. But getting to the nuts and bolts of this whole thing, this brand spanka Residential Service consisted of 4 separate houses; 3 for permanent residents & 1 for respite users. Then they were all joined by a central hallway; all having 5 bedrooms w/ ensuites, 2 lounges, a store room, a dining room and a kitchen – and at the time absolutely no furniture. There was also an office building on-site too, and being a high-care facility, the Residential Service (I don’t usually call it that; I’d usually say the houses) is fully staffed 24/7 with specialty ventilator trained carers and one Div1 nurse – so there’s always somebody around. Can be a good thing; can be a bad thing. And yeah I suppose it sounds like a bit of overkill, but in reality most of the residents can’t move much, can’t breathe much, so carers can and do get run off their feet most days. Oh and I must mention here, ‘the houses’ aren’t run like any other facility that I’ve ever heard of either; they were totally unique with the residents living their own lives according to their own times and desires (not like and institution). Person-centred living I believe is the technical term here. So to put this whole thing in a nut shell: I really wanted to move back home, but if I had to be anywhere this place seemed okay.

Anyhow this felt like my midpoint, but the shift clearly wasn’t only in demographic location. You see, the theme that lay burbling here was adjusting to life with a disability. I’m certain I was in denial. So yep I was now out of hospital, I was now in this flashy house, however I was definitely facing a very different world emotionally – in fact this was something I’d never expected to confront. The prospect was that ‘this is all there was and this is all there ever would be’ was a brutal reality check. And being a dreamer this was my greatest fear. How was I going to do all those things on my ‘to do when I’m better’ list? So without going into too much detail just yet, my ultimate challenge was fast becoming the complete and utter acceptance of my disability, and working out how to then do shit. I mean as I was getting lifted out of bed every morning, sure I still tried to make the most of my day, but I felt (and I know) that I still had so much more left to give. And not being able to express it in this lifetime, oh man what a tragedy – I felt short changed. Yup intentionally or not I’d created a whole new toxic self – and what would happen if I continued to live this same thing? A new choice had to be made. Yes, things won’t change unless you do, and I really tried to think about it as everything happening for a reason.

Like with this fear I also had enormous gratitude, and for the people (residents) that I was now meeting. They were absolutely fascinating to me. But to stick tightly to the whole gratitude thing, undeniably that was for the generations that had shaped disability before me. For example, most public places were now wheelchair accessible, and the tools and appropriate equipment was now available to be able to thrive (much like my new home). Plus, society now pretty much frowns upon any and all disability discrimination. I can’t even imagine what it would have been like 20-30 years prior. Actually if I could just wrap this whole bit up on a bit of a tangent – I’ve experienced both sides of the coin here – I wish everyone could experience disability (only for a short time) just to realise what it actually takes. The shortfalls, the isolation, the advantages. The guts, the realisation of real empathy – and that life is a gift no matter what the shape or form. Also it would be to experience restrictions to then appreciate freedoms. I mean everyone is flawed, everyone is a work in progress, and really it doesn’t matter what your body does as it’s actually your heart that matters. So even when all feels lost, and the future looks hopeless, it is actually the journey that keeps your spark. This is the light that cannot be extinguished.

Fail, fail, repeat.