Freedom (New Home)

New life begins. Michelangelo has chipped away at the marble. So, I made it, I’m now living independently in my very own apartment (obviously with constant disability support staff) but woohoo! Pretty bloody cool and I am stoked. It really does feel like I’ve jumped off a cliff.

For the last four days I suppose (which is how long I’ve been here now), it’s been this whole crazy unpacking boxes saga. I’m sure a lot of you know what it’s like to move house, it’s like this endless stream of stuff upon stuff upon stuff. Then trying to find a suitable spot for everything, searching for and discovering how things work. But you know, I’ve loved doing this, I’ve been turning this apartment into my home. A sanctuary. My life.

One other thing that’s been happening, oh man there’s been so many people around. Like for this first week I’ve intentionally over-staffed for comfort and to ensure a smooth transition, and to troubleshoot. I mean, far out, this is a pretty radical shift when comparing it to the life that I’m used to, so over-staffing was kinda safeguarding against a freak-out. Which, so far this has worked, I’ve been pretty chill. Actually, it’s like I’ve been feeling a weight lift off my shoulders (having now escaped from my old institutional life).

I’m trying hard not to look back though, onwards and upwards, but I will say this one thing – I knew it was bad only I never quite knew how bad. I had no real direct comparison. So, wow. Maybe I’ll talk about this at a later date, or maybe not, I’m trying to make a clean break.

Anyway, yeah I’m here, and oh boy I’m pretty bloody tired. The adrenaline has now worn off and the mammoth effort of moving has finally caught up – I know my dad feels the same way as well. But, I wouldn’t change a thing. I know I’m going to be happy here. I actually have a smile on my face for the first time in about five years too.

I’m starting to settle into my new routines, I’m meeting my new on-site staff team (who are all really lovely and kind, also very intrigued by my tracheostomy), then I’m also starting to rely on and trust my own personal staff team heaps more as well. Trusting staff and familiarity too, it’s been a massive factor for me in this whole transition, especially as I have way less medical back-up where I’m living now. That was always going to be a risk in leaving medical care though.

Don’t worry, be happy. Over these past few days I’ve actually been working a lot on mitigating these risks (particularly with my nursing team), plus I’ve been writing all these How To Look After Mark reference guides. From trachy dressing instructions to ways of communication when I’m not on my computer and able to type, so yeah, just heaps of stuff like this. Then on top of this, we’ve been doing stuff like calling the local ambulance department to sort all the “in case of shit show” stuff. So, it’s been a lot to think about and organise.

Breathe. Breathe. Or, if I do forget there’s always the machine to help me. Um, yeah, anyway that’s about it for today. Oh actually, one cool thing I’m forgetting, I can also turn the lights off and on here, and very soon I’ll be able to open the front door as well. Which, sure this might not seem like much to all of you who are able-bodied, only to me, well, I’m pretty chuffed with this.

It’s again reinforcing to me that (in my life and my current state of capacity) that the small wins really are the big ones. And blimey, “moving home” and living independently, I’m starting to realise just how monumental this is. I climbed Mt Everest, and in a wheelchair, haha. Holy smokes. Halleluiah. Dream on.