The journey to Voices for Justice last weekend was my first trip away (other than to my parents place) since my accident in 2010 (quite a change for someone used to yearly trips abroad). We spent two days one night in Canberra, after which I have the following observations:
- packing: it is staggering how much needs to be taken for an overnight trip. Aside from clothes and medical paraphernalia, we needed to transport a commode, hoist and air mattress. This requires some manual labour and jigsaw puzzle car arrangement, performed by Elly and Kristy (my carer) – a gender role reversal that I wasn’t sure whether to be grateful for or emasculated by! In any event, it was fortunate we were travelling without the boys as the middle seat was taken up with junk. In future I suspect we will need to hire equipment, the joys of further expenditure.
- Hotel: our accommodation was booked by a friend and careful attention was paid to ensure that the facilities were accessible. It turns out that what able-bodied people describe as accessible is not always so. The room had a disabled bathroom, but there was an inch step from the carpet to the titles. This does not sound like much, until you become a 5 foot two carer (Kristy) trying to push a commode filled with a 99 kg body. In fact, the motel was full of inclines that were difficult to negotiate and narrow corridors. At least this provides some entertainment, and the occasional ding in a wall is the price the hotel pays.
- Bed: a major challenge was that there was no clearance underneath the bed to take the hoist. Elly and Kristy had the precarious task of wheeling the hoist and I to the side of the bed and then tipping me in – trying to avoid squashing me in the process. Once in there was the possibility that I was going to have to stay there for the rest of the weekend, but Elly imagined a creative solution. A bit hard to describe in words, but it involved the corner of the bed, dragging me around and sitting me up. In any event, we managed to get me up.
- Change in chair: once up and in the commode we realised that after the bathroom I am normally returned to bed to be dressed. Since that seemed like a bad idea, we thought it might be worth experimenting whether I could be dressed in a chair. Remarkably, we learned a new skill. This proved to be extraordinarily useful. On the Tuesday morning after my return home I was dressed and ready to go to work only to have that joyous experience of wetting my pants (yes, mum, I know you taught me not to do that a long time ago). Rather than bother returning me to bed for another change we tried out our new skill – the Superman change in the chair. My wife took a photo which is embarrassingly funny enough to share:
All in all we enjoyed the trip. Going there and back in two days was too much for everyone – we shall leave longer next time. We shall also spend the money on a ritzier motel. Thanks to Kristy for tagging along, and to Micah challenge for the invite.
Life is all a matter of perspective. Let me tell you the same story in two ways – don’t worry, I will keep it short.
On Thursday I had a class to teach in the afternoon at Hillsong in Baulkham Hills (feminist theology and the doctrine of the Trinity – one of my favourite subjects). I woke up feeling a little bit uncomfortable but nothing serious enough to keep me from taking the journey to class. Just as I was about to leave, however, my chair broke down. The challenge with an electric chair is that mechanical problems can leave you stranded. So, I cancelled my class, got hoisted back into bed, and went about trying to arrange a repair. About an hour later I noticed my tummy rumbling and the result, given I have no control of that part of my body, was pure yuckyness. Once again my brilliant carers to the rescue.
So what has this got to do with providence? Well, if my chair had not broke down, I would have been on the way to Hillsong – perhaps even in class – and the result does not bear thinking about. As things stood, I needed to spend two days in bed (perhaps more – I’m still there), and so the fact that it took two days to repair my chair was of no consequence. All in all I am able to thank God for his providential care in this odd confluence of events.
Or am I?
Of course, I might also be able to complain about providence, given that both my broken chair and broken bum prevented me from making my class and kept me stuck in bed.
Now if you really want to send your brain in circles, ask yourself what prayer I should pray in this situation? Of course I have prayed (and I would invite you to pray on my behalf) that this current sickness leaves me. But the challenge of this prayer is that this current problem is subsidiary to a larger one – and God does not seem to have answered the many faithful prayers that I might “take up my bed and walk” (John 5:8).
For many, these are the difficulties that lead to atheism or agnosticism. I understand that. If I’m honest, I am also sometimes agnostic – a Christian agnostic, wondering where on earth God is. But it is contemplation of Christ, his revealing God in the midst of his godforsakenness, that reminds me that faith is not predicated on my control of God through prayer, nor on the assumption that life should be free from crisis and pain. If all of life is understood as gift, as a wondrous spark amidst the fragility and finitude of the universe, then there is reason for thankfulness for the small moments of grace.
So, thank you God that my wheelchair broke down yesterday.
Romans 8:26 the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
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?
- 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.
- 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.
- 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.
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:
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.
Yesterday got away on me and I really did not get another chance to diarise (yes, literary pedants, I know this is not a word). I jotted down a few notes on my phone as I went and should have enough to finish the story.
Received a telephone call from my son, Jeremy. He is 17 today and it really is hard to fathom how fast time has gone. I know it sounds cliched but it does feel like only yesterday that he was an innocent little toddler. Now he towers over me (in my chair I finally understand what it is to be short). He is long and lanky with wild blonde hair and is secretly proud of his biceps and chest. Perhaps not so secretly. He always wears a singlet and I keep hearing stories of him performing striptease. Anyway, he calls me to let me know that he passed his driving test and is now the proud possessor of a P class licence. This is good news, as it will ease the burden on Elly to perform taxi services. It is also scary news, as I can remember what it was to be a teenage driver. The statistics on road accidents does not lessen my concern. But I think he is a sensible enough kid. I hope so.
As I noted yesterday, I spent until 10:30 AM blogging. My catheter bag is full again (yes, I know, I spend an inordinate amount of time focused on that stupid bag). My associate, Andrew, is going above and beyond the call of duty. He is employed to help me deliver theology units, but has also become a personal carer while I am at work. I shall have to arrange an additional levy for his services. He helps me out in the bathroom and at least pretends that it is no big deal. His wife is an occupational therapist so I think it is more than just pretend.
Back at my desk I should be preparing for class but I can’t keep my eyes open. I make some effort but eventually I rock back in my chair, ostensibly for pressure relief, and fall asleep. so here is one of the really cool things about my new life. I can find a chair wherever I go and the tilt function means that I also carry my bed with me.
I am woken most mornings by the sound of numbers beeping on a keypad and a door clicking open (our doors are automated with touchpads to enable me to get in and out – and this has the added advantage of ensuring my wife does not have to get up to open the door for the carers). We normally start at 7 AM but I was expecting Parvene at 6:45 AM to get things going – an earlier start so I can get to work a reasonable hour. She is late. When she comes in at 7.00 I express my frustrations. Too forcefully. I’m immediately mortified at my own response. It is true she has a habit of being late but she works hard and deserves more courtesy. And I am better than this – at least I should be.
Blankets and sheets are stripped back, I am rocked forward and a sling is placed behind my back and between my legs. A hoist is rolled under my bed, connected to the sling and up I go. Getting me properly seated on the commode is something of a skill but the ladies have had plenty of practice. I am wheeled into the bathroom, pushed over the toilet and Rachelle gloves up. Gloves, gel, enema, bum; that is probably more information than you wanted. The obvious question is, how do you get used to this? Weirdly enough, it very soon becomes nothing simple routine. You might say I have the good fortune of someone to talk to while I go to the loo. If anything, I wonder how my carers bring themselves to put on the glove, but they also say it is just routine. And an important routine. Without their efforts I am in danger of an accident in my chair, and the thought is not appealing. The work of a personal carer, like that of nurses, is not glamorous but it is glorious. There is something deeply spiritual about being prepared to help people get rid of their shit,
From the toilet to the shower and Parvene gives me thorough clean. She is clearly upset so I apologise again and give her a cuddle. Yes, I am nude in a shower and she is fully dressed – now soaking wet. But this is normal (not the upset or the cuddle – the showering!). The shower is another seemingly invasive experience but it is surprisingly routine. Bodies are bodies and we should not be too precious about them. Anyway, Parvene has cheered up and is making jokes. To be honest I can’t catch everything that she says. She is Pakistani and sometimes we only three quarters understand each other – but I laugh anyway for her sake. From the shower, hoisted back into bed. My catheter is attended to; I still get blood and puss in the wound where the catheter goes in through my stomach to the bladder. Not at all painful but can stain my clothes. I am dressed and hoisted again into my chair.
This morning I am in a rush (late start and all). I have breakfast on the run and take off out the door. It is 7:52 AM. We have made record time – it normally takes about 1 ½ hours to get me up and then another half an hour for me to have breakfast and the girls to tidy up. We have skipped a couple of steps. I have that trendy stubble beard. But we are done in just under an hour and I am free.