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jellybeanI was wrapped up like newborn baby, a frayed green blanket around my legs, three layers of skivvy covered by a sky blue windcheater over my chest, and a black felt beanie pulled down tight over my eyebrows and ears. Even so, I was shivering, as the crisp winter wind raced toward me, slapping my face and finding the gap in the sliver of exposed skin between my collar and scarf. I was travelling as fast as my chair would take me down Oxford road, heading to Ingleburn station. Along the way I stopped at Teo’s cafe to collect my pre-ordered skim milk latte, which I hoped would provide me a shot of energised warmth sufficient to get me to my appointment at Prince of Wales Hospital.

Assisted by a guard with a ramp onto the train at Ingleburn, and off again at Green Square, I made my way up the lift and out of the station only to discover it was raining. Electric chairs and water are not a great mix, so I accosted a nearby couple, interrupted their hand holding, and asked for their help with my raincoat. Inevitably it was the woman who rose to the task, digging the bright yellow poncho out of my backpack and squeezing it over my head and around my knees, so that I looked like a giant jellybean on wheels. But the seven minutes I was to spend in the rain waiting for the bus made it worth the price of my dignity, and eventually I made it to Randwick, dripping but dry, and well ahead of schedule.

This gave me the chance to take on board some more caffeine, this time at Randwick’s trendy 22 Grams, which was packed full of yuppie doctors and uniform-stylish nurses, crowded around tables and yelling at one another to be heard over the din. While I was waiting for the brew, Annalisa, my former psychologist, spotted me huddled in the corner, and so pulled up a pew, and we managed to get our heads close enough together that we could chat about this and that; the sort of easy-going conversation that comes from shared experience.

And then it was time for the reason I’d made the trip, so I ventured back out into the rain and across the road to Prince of Wales, making my way down one floor via an ancient and jerky lift (with old-style metal non-illuminated buttons) to spinal outpatients. There I was met by a friendly occupational therapist, whose mood was inspired by a recently taken 10 week adventure through South America (the rain had caused some cancellations, so she had a few minutes to catalogue the highlights of her travel, which included a dive with turtles in the Galapagos Islands). Small talk aside, our purpose was to inspect the cushion on my chair. It’s a Roho, comprising of a series of interconnected rubber air cushions that look and move like succulent tuber coral wafting in the current. Earlier in the week I’d been forced to spend a day in bed when the damned thing had gone flat, so the OT was to check up on Elly’s repair and refilling. Slipping her hands into plastic gloves, she slid her arms between the cushion and my leg, reaching for my bum and feeling for the space between my IT bone and the chair. Under-inflation leads to pressure marks, over-inflation leads to pressure marks, but it turned out that Elly had things just right, and so a two-hour journey culminated in a 10 minute appointment for no real purpose, but at least I was free.

I took the opportunity to head over to the spinal ward. Six weeks earlier Annalisa had suggested I visit TT, a resident who’d suffered C1 nerve damage following an operation to remove a tumour. He was now a ventilated quadriplegic, with no movement below the neck, and since he was studying law, she thought I might be able to provide him some encouragement. As usually happens in these situations, the encouragement went the other direction, so I was pleased today to have the opportunity for a second visit. I found TT in his room – cubicle would be a better word, a crowded space packed with medical technology and the detritus that accumulates from months living in a hospital. He was still in his PJ’s, but out of bed and seated in his chair, working away on his computer. Snaked toward his mouth from the left was a microphone for voice recognition, and from the right, a Sip-n-Puff mouth mouse; blow for left click, suck for right click, and grip the tubing in the mouth and move it up/down/left/right to navigate screen. These were not easy apparatus to use (I’d made the attempt in the early days of my rehabilitation, and recall constantly asking for help wiping spit off my chin), but TT seemed to be making a go of it. When I stopped by he was in the middle of an essay, but seemed happy enough for the interruption. He was quietly spoken, constrained by steady rhythm of the ventilator, but he carried himself with a friendly confidence that made for easy conversation. It wasn’t long before he announced that he had recently popped the question to his long-term partner (she said, yes) and, also, that accessible accommodation had been found near his University, so discharge from hospital was imminent. As he shared all of this exciting news, I was reminded of the recent euthanasia of Tim Bowers (see here), based in the assumption that severe quadriplegia was a fate worse than death. Yet, here was TT, living with this severe disability for just over a year, and already working on a law degree, moving into his own home, and getting married.

Not wanting to be the cause of a late assignment, I said my goodbyes and headed home; more rain, a bus and train trip, and a roll back up the hill. It was another of those days when I’d accomplished nothing (I’d left a list of tasks from work and home piling higher), yet it felt like a day that was wonderfully well wasted.

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