HAPPY DISABILITY ANNIVERSARY (20yrs)

The 17th of March always haunts me. It’s the day I left for Europe on a big jet plane, the holiday of a lifetime, and this is when my whole world turned upside down. From a strong and healthy boofhead, someone looking for adventure and very much still finding their feet in life, all of a sudden I had the rug pulled out from under me. But the thing, not only did my life change, with this shift came a lot of hardship, restriction, uncertainty and fear. Jackpot.

I lost more than I thought was ever possible. In fact, in many ways, my life was no longer my own.

This bizarre illness took over my body and has dictated my daily life ever since. It is so fucked and unfair, there’s not really any other words for it. Still, throughout this twenty year long shit show, I have tried to manage, build myself back up, even achieve - which this is not an easy task let me tell you. And sure I have experienced some success, but would I give it all up just to be able to walk down the street tomorrow, yeah probably.

One other thing is certain, if I hadn’t become sick there’s no way I would’ve lived a life with (potentially) this much meaning nor experienced such personal growth. I more than likely would’ve remained that fun-loving boofhead. I would’ve been okay with that.

But with all this growth, geez I really have learnt a lot. I know exactly who I am now and what I’m made of (like I have faced so many demons and threats it’s almost unfathomable, and I continue to do so even to this day). However, this constant war is taxing, it has worn me down, yet I do still persist. Yep, I’m a stubborn prick and a fighter.

Actually, just giving it a quick thought, you know my physical predicament is right up there with the worst scenarios going around (excluding death). I’m living what could be considered many people’s worst nightmare, and I’ve been doing it for twenty years exactly. Pretty shit. But do I get a medal or any sort of recognition (or better still a hug from a woman who loves me), no, what I get is to wake up tomorrow morning and do this extreme disability thing all over again.

What stands out to me here though, through all this fighting and hardship, even experiencing the odd winfall too (like I do have a sweet-ass apartment now, yep even with a great staff team), but yeah I truly have become this extraordinary person along the way. A deep thinker, well read and educated, empathetic, kind, blah blah blah. Only particularly on days like today I do wonder if the exchange has at all been worth it? Like is there a silver lining that can ever outweigh what might have been?

There is a lot to hate about my life and I’m not sure if it’s even possible to fully get over, so I guess these days I’m just trying my best to move forward with my mental scars. Which, some days I do okay; other days like today are a total killer. My life is a rollercoaster, it’s just the way it is.

Quadriplegia really is a whole new ball game when compared to anything else (it’s 100 per cent dependency), and then chuck in the life-fragility of ventilator dependency and a tracheostomy (and being completely unable to talk), well there’s that scenario of many people’s worst nightmare again – mine included.

Still, this is my life. This is not just words on paper, I am a living and mechanically breathing human being. I have feelings, ambitions and desires just like you. But… I don’t get the family and kids, holding down a job is almost impossible, then I can’t exactly go and shoot hoops in the backyard either. There are so many “what ifs,” nah, actually there’s a lot of things that just aren’t possible. And through years of grieving and working on acceptance, years of adapting and making allowances for my abilities, hm, you do really begin to wonder if your moment will ever come? A breakthrough, that moment of redemption, the knowing that it wasn’t all in vein?

Maybe the reward is death? Dunno.

Whoa, that’s a bit morbid, still after twenty years of fighting what else is there? Like I now know that my hearts deepest desires cannot be achieved – or it would take the most amazing string of miracles. Which, I guess it’s lucky that I do believe in them. Yet, with the amount of bad luck I’ve experienced in my life it sure would be nice for the universe to turn the tables a little. Prayers.

Until that day though, well, the slog continues. And throughout this, I do continue to plug away at my dreams. In many ways they’re all I have left. Well, dreams and the “what is.”

I do still have a functional mind, I am still incredibly good looking (joking), and without doubt I can be relentless as fuck. What I do need though, I do need a renewed purpose – and to stop being so heart-broken about my life. Actually, this is something I’ve been working on of late. Watch this space.

Anyways, for a final little gem of wisdom, what is the one thing from these past twenty years that I’ve learnt and that really stands out? Well, I suppose surprisingly, I’d have to say my ability. Like in spite of all obstacles, no matter what mountain has been put in front of me, I have climbed them all (apart from romantic love). Now, I’m not saying that I’ve done this unscathed, but I certainly have made it somewhere near the top (for a diverse range of achievements by a human being – disabled or not). Bucket lists, blogs, crowd funding, marathons, university, published author, then moving out of institutionalised care and into my own home… and all while having my body fall apart around me.

Heck, you might even say I am “chronically able.”

So, in short, truly I am crying at the realisation that I’ve survived this long, all while up against these crazy unfair odds. It’s just the truth, not very many people in my situation last this long (especially if they’re single and primarily relying on institutionalised care). It’s a hard road but I’ve done it hey, what a significantly insignificant achievement, still it’s one that I’m proud of.

Okay, now it’s time to be alone again, to dream the good dream, to keep fighting the fight. No rest for the wicked. Bless.