A friend asked me the other day if I was going to Public Enemy (obviously an upcoming concert here in Melbourne). She’s a total rager, plus we used to go to a few shows several years back. Always fun. So, I guess this asking if I was going, this may have been suggesting that we could meet up there, maybe even go together. Dunno.

Such a normal thing to do, something I’d freaking love to do as well. Only I live in a very different world.

This was my reply:

“Heya, oh I wish. I’m still in purgatory lol. Honestly, I don’t really know what’s happening with me, my trachy has healed a bit but not enough to make a tangible “safe” difference to the point of going out. It’s pretty crappy.”

Yeah, just these few words, they’ve again highlighted how much I’m living in this limbo. In fact, just this simple reply has got me thinking heaps about where I’m at, which I’m not feeling great about. My days are spent stuck in bed, at the point of writing this I don’t believe I’ve left the apartment in about four to five months, and I’m still struggling to get out of bed a couple of times a week and this is for two hours. Urrgh, reality, it’s such a punch in the face. It make me feel like such a loser, or maybe better put, I am not trying hard enough in this area of my life. Trachy leaks are just insanely terrifying.

Heat packs. Oh and that’s another thing, because it’s currently winter (a particularly cold one), damn I’m doing absolutely everything to keep warm. My blood flow is so bad.

But bar-humbug… let’s talk about this “very different world.” So, aw man this is all going to sound so bad. But yeah, I literally live in my bed, and have done so for three or four years. I’ve kinda lost count. And, it’s something I’m pretty ashamed of, or I find it totally insane and disgraceful – I am the epitome of the term “bed-ridden.” I even have bed sores to prove it. I’m crying right now as I write this.

Getting out of bed, to me, it’s just so scary and dangerous (admittedly, nowhere near as scary as it used to be). Yet, there is definitely still fear and risk there (around my trachy leaks), and by this what I’m saying is that I have to risk my life simply to get out of bed. Which, sure this may sound boomchikawawa dramatic, however in many ways it’s straight-forward truth. You see, it’s like a bazillion times easier to manage my leaks when I’m laying flat in bed. Heck, for example, just two weeks ago (when I was sitting up in my wheelchair), I had to rush back to bed because I was leaking too much and not getting enough air.

Yep, so can you see how and why I’m trapped.

Five or so years ago I could’ve never even imagined that such a predicament could play out for me, but if I’m being really honest, this was simply ignorance. I mean, at the mini nursing home, I’d been amongst people who where mostly bed-ridden for years (most of whom were much older than me). So, naievely, maybe I thought that my age would be my saving grace. When reality is, damn, disability is this ruthless beast that takes over when and however it pleases. There is no mercy.

Anyways, to point out the obvious, yeppo disability does dictate a huge chunk of my life. Yet, I do still somehow manage to work on my projects, follow my dreams, even to maintain some semi-functional relationships. However, the thing that I’m missing, the whole in my heart, it’s community participation. Nah, it’s even more than that, it’s that slice of normality. Like walking down the street is one thing; then the other things are (to use examples) I’ve never used a smartphone nor have I played any modern video dame. Someone tried to talk to me about Halo the other day and I had no bloody idea what they were talking about. And this is kinda the thing, I’m so detached, blah blah I live in this entirely different world.

But I don’t want to. Like my natural persona, I’m super social and friendly. I love being part of something. Community. And if this is ever going to happen again, I’m going to have to fight for it. Which, I haven’t been. Hashtag bedfly.

You see, nope it’s not that I haven’t been doing anything, instead it’s that I’ve been playing this delicate balancing act. Which, this mostly stems from thinking (and what I perceive to be a huge threat to my legacy), if I was to die right now, a lot of my life’s work may be lost. Or, I know the exact direction I want to take it all now (for instance, I know that I need to re-write my first four books and give them a solid structure, plus I believe this self-study adversity course idea is the bomb), and it’d be tough for anyone to take over right now. I’m the one with the lived experiences, I’m the one with this adversity formula in my head (of which I’d love to use both to help people well into the future). It’s like that ol’ mate cheesy saying goes, “don’t die with your music left in you.”

So, knowing the fragility of my life, this whole dying and destroying my life’s work thing plays on my mind a lot. It influences my decisions, it makes me always choose the safest option – even if that means stay in bed. Hence, I’m always weighing up my personal safety and goals, and generally all my decisions try to facilitate both. Yet, but geez, I really to make some risky and terrible choices amid my alcohol fuelled binges. Drunken fool.

Hey, just thinkin, I hope all this makes sense. Purgatory, limbo, Malcom in the Middle, someone stuck between a rock and a hard place; this is the world in which I currently reside. On the one hand are my desires of freedom and normality (whatever normality means), and on the other ambition plus a hell’va lot to lose. The pendulum swings and sways. And I feel like I’ve been jammed in the middle for way too long now. Powwow. Whammy. Ka-ching.

Gotta fight more… “fight the power, we gotta fight the powers that be.”