Anticipation

Well that was a lovely show; I’m not sure of the name but it sounded like ‘don’t cry for me something something’. In fact, it was the first musical I’d seen in several years, umm, pretty sure the one before this was Wicked. I’ve always felt a comfortable normality in going to the theatre.

After the show was kinda cool too. I was hob-nobbing it in some fancy bar drinking Italian soda. The night was warm, there was a buzz around the city, it was the kind of night I felt grateful to be alive. It was a view I’ll never forget – St Kind Road, big trees, fairy lights flowing, and people smiling and laughing everywhere.

For once my disability did not ruin the experience. For once I really did feel normal.

It was beautiful.

But as the saying goes, all good things must come to an end. And as the taxi driver loaded me in, I could taste the crisp clean air, secretly hoping that we’d meet again. The driver had now strapped me in, closed all the doors, and we were ready to rock on home. It was myself, my Carer, and the driver… and all of a sudden this strange buzzing noise coming from behind my back.

It was quite loud and unusual, but unperturbed the driver started driving. My Carer and I weren’t so casual, immediately we checked it out. We both knew my ventilator (my lifeline) lay behind my bum, and sure enough this racket was coming from directly there. And it wasn’t a normal alarm, rather a scary incessant pulse. I’d never heard it before. My heart skipped a beat.

Now thick in traffic, my Carer stumbled her way to the back of my chair to make an accurate assessment. She opened the flap, she said all she could see was bright read flashing lights, and the words ‘power failure, imminent shutdown’ clearly displayed on the screen. Also, the battery life read 0%. Fuck.

What’s weird, there was no warning. And what we didn’t realise at the time (but found out later) is that the external battery had failed. Maybe because it was plugged in, that’s why there wasn’t a warning alarm, who knows! What I did know though; I was about 20 minutes from home and about to have no air. The driver was oblivious to any of this.

It was time for quick decisions. Ambulance? Power point? Beer? Or stick it out in the taxi and hope for the best? We went with the taxi but we didn’t do it blindly. Suddenly I was covered in safety equipment, and the weapon of choice was a hand pump to manually blow air into my lungs. We talked through the plan about eight times.

We just knew an ambulance would be at least 10 minutes away. To find a power point and have the taxi driver unload me, again at least 10 minutes. Whereas by our current trajectory, we were by now about 15 minutes away from home. This is where oxygen lay, power, a fully facilitated service for anyone about to stop breathing. Me.

Amid the tension, we phoned ahead. We rang the nurse and told them of our predicament, and arranged to meet us at the front door – with supplies. Still, we were about 10 minutes out, and truly I had no idea how it was still working. The alarm still buzzing, the red light flashing, and each mechanical breath felt like it would be my very last.

By this stage my only focus was the hand pump on my lap. It was no longer orange, it glittered of gold. In fact, this piece of plastic is all that stood between me and a wooden box. To calm my own nerves, I kept reassuring my Carer, I even remember at this point saying we’re only 5 minutes away. It was relief combined with unavoidable doom.

Hand pump. Hand pump. It was Daft Punk playing on repeat. I think the taxi driver even twigged on to the situation at this stage, and as we approached my street it was just like one of those slow motion marathon scenes. Alarms buzzing, hearts thumping, the finish line in sight. I was home. I was alive. The nurse met us, rushed me inside to power, and just like that the ordeal was over.

Kudos to my Carer.

I remember both sitting down in the lounge room, pale faced, and saying what fucking musical!!