BUZZER

It’s 4am, the room has that early morning crisp cold air. Obviously it’s dark, I mean c’mon this is el primo supremo snoozy time. Still, I’ve just woken up, as I typically do several times a night. Being paralysed and not being able to squirm or even roll over (by myself), it’s as if my body has this stagnation and discomfort alarm clock in-built. Yep, the weight of your own body becomes a problem in and of itself. For this reason, a staff member (two actually) will typically come in and roll me over a couple of times a night.

It’s 4.02am, I’m warm and cozy, and honestly I can’t be bothered dealing with the whole staff member thing. But my body says otherwise. It’s a strange feeling actually, these pressure areas or points (whatever you want to call them), it almost feels like you’ve been hit twenty times in the same shot with a rubber mallet, creating a sensitive tsunami under the skin.

It’s 4.03am now, urrgh I better buzz the staff to come, let’s get this whole roll thing over and done with. I dong have set times to do this as I find that to be a little too institutional for my liking. When I’m sleeping, specifically when I’m in a deep sleep, the last thing I want is some knucklehead shaking on my shoulder reminding me how my disability dictates every second of my life. Also, haha, nah my staff aren’t knuckleheads (even though in the past some of them have been), these days I’m surrounded by a pretty cool bunch of bananas.

Still 4.03am, aw great, now my mouth is full of saliva too. Not being able to swallow, it’s my conscious nightmare. Okay, there’s really no choice anymore. And with that, I swing my head to the left, it flops like a broken bobblehead, hitting the green button strapped to my pillow. Nothing. Absolutely nothing happens. I swing my head a few more times, I even hear the button click, however there’s no external audible sound. No church bells, no ding-dur-dong-darh as there’d usually be. Silence. Fuck.

I can’t scream for help, holler for assistance, even wiggle in some sort of fashion in the bed that might somehow alert the staff. Yeah, I always have at least one staff member with me at all times, on night shift they’re even awake all night too, God knows what they’re doing. Singing, dancing; I know one staff member brings in his computer and plays online video games all night. My only hope is that they never have the television volume up too loud so that they can hear the ventilator alarm, and this is in the instance that the trachy disconnects (and I stop breathing). This is why the staff are here, and awake. Like disconnections can and do happen, often with zero warning.

It’s 4.33am, it’s deathly quiet, and in the shadows I can just make out the bronze hands on the wall clock to my right. However, it’s fairly hard to see, mainly because my head is stuck in this kinda awkward position now (from trying to press the buzzer so many times), so I’m somewhat frozen facing the ceiling. I’m calm yet my mind is racing, even catastrophising that little bit, it’s obvious that I’m completely helpless. A pig, hog tied, but without the squeals. A flaccid hunk of flesh. What if. What if. What if.

It’s 4.56am, and now I’m thinking about how many times this exact same buzzer failure scenario has played out over the years. Easily in-excess of thirty, and by this I’m meaning being left in this same old life raft in the middle of the sea, in the middle of the night. Urrgh. It’s so hard, being so reliant on these tiny electronic devices, because they do fail, albeit very rarely. It’s kinda like betting your house on a Casio watch.

Now, 5.22am, this is when I’ve become quite agitated and that bit scared. What if. I’m intently listening to the mechanical breaths of my ventilator, just catching that glimpse of the life-preserving plastic tubes that lay across my chest. I’m starting to become mad at myself too, like I’d become complacent (because the buzzer hadn’t failed in donkeys, so I’d become comfortable in the knowing that it would just work), well, fool me. I can’t ever become complacent with anything; it’s my life on the line here. Like when I first moved into my apartment I’d be reminding staff to check on me regularly, whereas now this wasn’t something I’d mentioned in ages. No matter how good a staff member is, I still find that everyone needs to be reminded of the basics from time to time.

It’s 5.47am, and by this time I’d become quite familiar with the dim dusky ceiling, thinking I should really get some of those glow in the dark stars to put up there. Breathe. Concentrate. Rhythm. I know it’s gonna sound dramatic, but yeah, by now I was starting to wonder if any of these breaths might be my last. Truly, being in such a state of helplessness and vulnerability like this, your mind begins to wander. If something went wrong, and if the tele volume’s too loud to hear the ventilator alarm…

It’s 5.48am, the pain has set in now, I’ve even pissed the bed. Living my best life, as they say. I’m a bit surprised that the staff member hasn’t come in to check on me yet, in fact I begin to wonder if she checks on me at all anymore, and if not from when and why did this stop. I mean, she’s a great staff member, only much like me, she’d become too reliant on the Casio watch working. I began to brace myself for another hour with my head in the fish tank, because at 7am when the morning staff arrived I knew they’d come in.

And boom, just like that my door swang open, artificial light filled the room. I began shaking my head, bashing it against the buzzer several times. “Oh my God,” a sweet voice said. I’ve never heard a voice any sweeter. The ordeal was over.

(Nb. This happened three weeks ago)

And you know, as weird as this gonna sound, I’m kinda glad it happened. It has since led to some positive changes with my overall safety stuff, and yup I’m way less complacent. I needed the foot up the ass. Like when the buzzer failed again two nights later (bloody faulty thing, I have a new one now), I was only in this same full helplessness limbo for about twenty minutes. Hallelujah. Hence, not only am I more on my toes but my staff are too – or, geez I hope so. Definitely a good thing. I just need to figure out a back-up fail-safe secondary buzzer next, which I haven’t quite figured out yet. I’m sure I will.

Yep, the good ol’ curveballs hey. No matter how positive I am, no matter how focused I am and thinking I’m on a different trajectory now, the bugger reality checks keep on coming. But, as I’ve been reaffirming heaps lately, my will is much stronger than any of this shit. Dust myself off, carry on.

IMPORTANT REMINDER FOR ALL STAFF

(Particularly for night staff)

·        You MUST check on me regularly, just because you think I have my buzzer (or can communicate via the day computer) doesn’t mean I can. It can and does disconnect, or be out of reach. And without the ability to buzz I become extremely vulnerable

·        Check on me every 45min, or better still more frequently. Walk in, check properly, don’t half-ass it – safety comes way before privacy

·        Mostly for night shift, never close the bedroom door fully. Leave it a bit ajar, because not only does my room get stuffy but this is a safety mechanism too. You MUST be able to hear the ventilator alarm clearly at all times – hence, the television shouldn’t be too loud either

·        Also, if something seems out of pattern or unusual (for example, you think I usually would’ve buzzed by now) – check, check, check

·        Be proactive, be involved – I’ll never get shitty at you for being too present or doing your job properly

·        Remember, always safety first

Our systems and safety stuff is good, however it’s not a perfect system. Electronics can fail or come unplugged accidently, so you always have to be vigilant. Complacency kills.

I’m not mad, I just want you all to be aware.

If you think you should check, do check!

Thanks guys.