Rain, Train, Bus, and A Few Conversations

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.

another blog post you’ll wish you hadn’t read

I have said a few times that I really am unsure as to exactly why I am blogging (one of the reasons I post so infrequently). I vacillate between the hope that my story is somehow meaningful and concern that I am driven by some egoistic need for sympathy and praise – that I harbour the illicit desire to be told I am brave. No doubt both are somehow true, since every autobiographer must be a mass of insecurities (as is every person who uses a blog, Facebook or Twitter). So with that confession out of the way – and with the agreement that any of your comments will avoid mention of my virtue; tell something of your own story instead – here goes another blog entry that the weak of stomach would be best skipping over.

My brother Troy and his family, Kris, Aidan, Taylor and Ameliese, came up to Sydney to spend the weekend with us. We decided a journey into the city would do the trick, intending to take these “country bumpkins” on the train to visit the NSW Art Gallery (and the Archibald prize), the Opera house and the rocks.

The day started in fine form when Ameliese pressed a red button on the Ingleburn platform. For a six-year-old, buttons are there for the pressing, but she got something of a surprise when a male voice asked the nature of the emergency. What she had failed to read was the emergency information and the warning of a $500 fine for pressing the button in the absence of a crisis. While we all laughed she broke down in tears, but was soon pacified by the arrival of a shiny new train.

About an hour later, as we waited on the platform at Central for the train headed to St James, I noticed my tummy rumbling and experienced the unmistakable smell of flatulence. Or so I thought. A minute or so later my hands, after wandering around my back, returned to scratch my face when I realised my mistake. Shit! (I have recently been in discussion with my mother about whether there is ever an appropriate time to swear. We agreed that swearing was mostly ugly but I went on to argue that sometimes only a swear word will do the trick. She was not convinced. Whether this present usage proves one or other of us right I will leave you to decide).

So, what do you do with crap on your hands and face and swimming in your wheelchair? The single handkerchief we had on hand did not do the trick (sorry, Ameliese, but you are not getting that one back), and a trip to the bathroom helped only a little. I cannot get out of a chair without a hoist – and we had no spare clothes in any event. But you do what you have to do. Leaving the kids with Troy and Kris, Elly and I waited 25 min for the next train headed for home. Our carriage, fortunately, was generally empty, and Elly was nice enough not to tell me until later of the patrons nearby pinching their noses and rushing to move on. I wished I could have joined them!

After another monumental cleanup by my amazing carers – who must sometimes wish they had trained as accountants – I was fresh as a daisy and back in bed. And there I am again today; another lazy layabout Sunday. A morning of meaningful conversations with Troy, watching surf videos in preparation for the WCT at Bells Beach, and deciding whether or not to hit the “publish” button on this blog. Do I really want to inflict this story on the world?

My week in brief

Highlights

  • Teaching Trinity at Parramatta with Simon Bartlett as a student. Simon was part way through his degree when he broke his neck in the surf and was left a C6 quadriplegic. He is an inspiring young man who is always giving me encouragement. I am ostensibly his teacher but this week he got talking to me about the “footprint” of my wheelchair, looking for sneaky ways to make it shorter. Walls and doors would appreciate the change, as would my wife and my builder brother! His lessons on living with SCI probably more useful than my abstract metaphysical discussion of the Trinity…
  • Opening of new Alphacrucis College building in Parramatta. This is a brilliant facility and if anyone is nearby you should take a look. During the celebration I spoke at the launch of Jacqui Grey’s new book, Three’s a Crowd.
  • Taught a class in Brisbane, using Skype from my home.
  • Emma Maharaj from the spinal outreach service teaching my carers how to give me an assisted cough (without stomach muscles my cough is weak and when I suffer from a cold I need help getting up the flem – disgusting I know). It was amusing having five people pounding on my stomach. Emma is brilliant at her job and a great teacher.

Lowlights

  • During a meeting at college (I am back at work part-time) I noticed the unmistakable smell of urine. Discovered that the tubing from my SPC to the catheter bag had pulled out. This meant that, unawares, I had been sitting in piss since early morning. Took me about an hour and a half to get home. I felt a little like a drunken old man whose clothes had not been washed in months – imagine the poor people on the train. By the time I was showered and dressed I had been sitting in wee for about seven hours.

More highlights

  • Narelle Melton, a colleague and friend from work, prepared to get her hands dirty and help me out when I needed it.
  • Elly Clifton for being willing to laugh as she had the “joy” of washing wee from the nooks and crannies of my chair.

Diary of a day: 11:45 AM

Woken by my phone. It is a call from a bloke who contacted me out of the blue by e-mail on the weekend. He has the most fantastic voice. It is a deep and broad Aussie accent with the super-cool drawl of a surfer. Nic Gilmour lives in Coffs Harbour and heads up Christian surfers in the region. He also has an interest in theology and is completing a DMin with Gordon Conwell in the US. He wants to talk to me about his thesis, about my own books and articles as well as those from other Pentecostal/charismatic sources. We really have a lot in common and I enjoy the conversation. It brings to mind the e-mail correspondence from the weekend, which gave my wife and I are great laugh. Here is an extract from the second e-mail:

bro,

i feel a bit of a nong. just after emailing you i read your blog – including the post you linked below[I had sent him my post on the spirituality of surfing]. stupid of me to think you know something about a bloke when all you’ve seen is him standing there talking out of the TV [he had watched some theology lectures of mine preaccident].

i’m bummed that we won’t get to surf together – this side of the line. truly. i’d guessed you surfed (the O&E shirt gave you away – laughed at the irony – what’s your religion!?), and i thought to myself at the time something like ‘halle-frikkin-lujah, at last! someone who seems like a good bloke who’s a surfer and a not-half-shoddy theolog and an Aussie and a penti and probably isn’t a paid member of the Fred Nile party”. i know you’re still the above. maybe surfing is like alcoholism eh – you’re never cured from it. anyhow, i felt like Manni from IceAge who finds that other mammoth.

and then you selfishly went and broke your neck. bloody hell!

ok, embarrassment dealt with. you probably get that kind of thing a lot eh. if i was you i’d play on it – it offers untold comedic material.

anyhow – regarding the other stuff – epic. i’ll follow it up over the weekend. and thanks for your thesis.

This seriously is one of the best e-mails I’ve ever received. Chatted for a while but I had to go – class in the afternoon.

Needed to get from Alphacrucis College in Parramatta to Hillsong in Baulkham Hills. While Hillsong runs a substantive vocational level training program, Alphacrucis teaches it its degree programme on this site – taking students who want to continue the studies begun with Hills. To get there I had to ride up to the Parramatta bus interchange. The T 62 is a bright yellow bus. As the driver pulls up the entire left side of the bus is lowered on some type of air filled suspension system (actually, I have no idea how it works, but that is how it sounds). A ramp is lowered and I scoot onto the bus to the handicapped section. I am required to face backwards (safety reasons) and so I have the opportunity to look at the faces of all the passengers. Immediately in front of me is a young girl (sadly, early 20s now seems young to me) wearing a deep purple flowered lace top. Unusual but pretty. She gives me a smile which is better then the more common averting of eyes. And who can complain of a smile from a young woman, even if I know it is not my hunky looks that have attracted her attention. After that, however, it is a bit uncomfortable. It really is easier to stare at the back of people’s heads, rather than being forced to lock eye contact with complete strangers. As I am writing this diary enty my wife suggests that I should have looked out the window but my ability to turn my neck and body to the side is limited. Instead I tilt my chair back a little and pretend to sleep (another nifty advantage of a chair). Trip takes about 35 min.