Monthly Archives: February 2012

Feb 24 2012

Diary of a day: 730-ish

I am trying to finish my diary of Tuesday but today is Friday. It is mid afternoon and I am still in bed. My catheter is changed monthly by the community nurse and we were booked in for 8 AM but the medical profession seems to have a fluid concept of time. Patients learn patience and I’m long past getting frustrated by such occurrence. She turned up at about 11 and did the business [I asked her whether she would let me video the procedure but she was oddly reluctant. Those of you who are into piercings would be fascinated to see what I can stick in and out of my belly. Perhaps next time] but with my carers gone I decided it was easier on Elly if I just stay in bed. Turned out okay. I had an enjoyable surprise visit from a friend (Ann-Elise Koerntjes) and got to participate in webinar on the theology of Bernard Lonergan. I know, boooring, so back to Tuesday:

I arrive home to a full house. Elly’s best friend Rowena is staying for a few days and it’s Jeremy’s birthday, so he’s managed to con his girlfriend’s parents to allow her to come over mid week. Kate and Jem have been together for a few months now and they seem to be taking the whole thing pretty seriously. We are happy about that and Kate is a nice girl – good fun to have around. But it is odd to watch your kid in a near adult relationship, especially when they are so huggy. Anyway, there are seven of us around the dinner table, festooned with balloons and a massive poster plastered with red P plates (if you forgot my earlier post Jeremy got his licence today). Fondue for dinner – cheese entree steak main course. It is the sort of spectacular event Elly likes to create.

I have managed to delay my carers an extra half an hour but in almost no time at all it is 8: 30 and I am dragged away from the party and off to bed. Up at 7, to bed at 8, it can be an infuriatingly rigid routine although there is something good about the rhythm of it. To be honest the carers would be happy enough for me to stay out longer but I am flat out exhausted – it’s just been a long day, too long on the chair and I am uncomfortable and fidgety and need to get into bed. Night time care is a little more straightforward than morning. If I am up to it the carers will help me do some exercises but i blow that off tonight. I take my tablets – I am a down and out druggy. I take tablets throughout the day; gabapentin for neuropathic pain, baclafen for spasm, tolterodin for the bladder, two different types of laxatives, and a low dose psych pill. My wife came home from the chemist yesterday with another receipt for more than $200 (and this figure excludes all the other costs of catheters and lotions and wound care items and on and on). And if I have put on weight at my next weigh in I am blaming the pills.

tonight I am blessed by six people crowding into my bedroom as a cake with 17 candles explodes into the room. We sing a deliberately horrible out of tune and out of time happy birthday and Jem blows out the candles. One is left over so his wish to go unfulfilled. My youngest Lachlan entertains us with happy birthday in a made up language. I’m not sure whether it sounds Arabic or Jewish so maybe it’s actually a gift of tongues intended to bring world peace? it at least brings the room to laughter.

On my own again I read Uncommon Gratitude. I turn to a meditative prayer written by my friend Lauren. Written in the form of a Japanese haiku, it is intended to frame the cadence of the day (Dawn, noon, dusk and night). I shall share with you the latter, as well as her meaningful benediction

Love, peace, beauty and joy to you

Night

Inside a suitcase

Exhaled memories I wait

Held in contentment

And so ends my day. Well, almost. My wife – exhausted herself –comes in, helps me brush my teeth, kisses me good night and puts the snorkel of my breathing machine over my face. I was diagnosed with sleep apnoea in hospital, perhaps something to do with the fact that I sleep all night on my back. In fact, the tempo of the machine and the smooth flow of oxygen helps me sleep. I am out cold quick smart.

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Feb 22 2012

Diary of a day: 1 PM

This task I set myself of writing a diary of only one day is proving harder than I thought – and I’m sorry if I am overloading your inbox. Should have picked a slower day, so you ought to feel free to hit the delete button. Fortunately for me today has been a little easier and I have had a couple of chances to catch some zzz’s. I did have to travel in the afternoon to the physio at Prince of Wales. Had coffee with a former inmate of the hospital, Paul, and we shared things that only make sense to fellow SCIs. Nothing much else to report, except a very perceptive young man on a bus who noticed me overheating and offered to take off my jumper. Sometimes it’s nice not to have to ask. But I am supposed to be talking about yesterday.

1 PM, I arrive at Hillsong church and try to find some shade to eat my lunch. Rachelle, my carer – have I described her? 22-year-old trainee nurse. Superefficient and supercool. She is capable, clever and pretty but doesn’t believe it. And if any of you are worried that my personal care is being done by a beautiful young woman she is also a proud lesbian, and I am already married to a beautiful woman. Rachelle has this bizarre habit of saying sorry all the time. It’s become something of a running joke and it gives us a good laugh – where was I? Rachelle has packed me a peanut butter sandwich but it is stale and scaly and while I may be trying to economise I am not poor enough to persevere. I head off to the shopping centre and buy a sushi roll. I am super careful about what I eat. I get absolutely no exercise sitting in this chair all day, aside from forced gym time that is not as regular as my physio would like (don’t tell her). My life expectancy is already potentially compromised without giving myself cardiac problems and it’s probably not a good idea to force my carers to lug any more weight. So I eat like a pigeon. No mean feat when your wife is as good a cook as mine.

By the time I get back to Hillsong it is about 1:20 PM. That gives me 40 min before class and time for another brief kip. I am expecting someone to come and help me set up my computer at about 1:45 and students to arrive not much later. The class is to be held in what is known as “the basement”. Hillsong Auditorium is a multipurpose facility and most of the teaching rooms are made up of soundproof screens that enclose the tiered section of the auditorium. For obvious reasons that does not work for me so the basement it is. At 2 PM no one has arrived and I suspect something is amiss. I make a call and it turns out the students had not been informed I was teaching. I trundle over to the lift ,head up to the top floor, poke my nose into the alternate classroom and discover my students. We all shuffle on back downstairs and the class gets started only a few minutes late.

In case you are not aware I teach theology and this is a three hour class. Before you groan too loudly, don’t worry I won’t bore you with a blow by blow account. This is a first year theology class and this week has some elements of interest. The lecture was creation, providence and the problem of pain and if this topic is not familiar to you, it is one of the central challenges of faith. While the wonder of creation and the graciousness of God is one of the reasons motivating belief, the corollary – the bloody horror that sometimes frames human life – is sometimes the basis for atheism or agnosticism. For obvious reasons this is a topic about which I have something to say. Aside from the fact that I was writing on the issue prior to the accident, I have also spent seven months in hospital wrestling various Christian responses. I also had the pleasure of weekly visits from my friend Prof Neil Ormerod (Australian Catholic University) and we spent considerable time mulling over the topic. So what is the answer to the problem of pain? You have to be kidding don’t you. This is a blog and not a systematic theology. But for those of you familiar with the issues I will say this. John Calvin is way off base! Hah, I had to get that in there for my reformed friends.

Whether, after three hours, I made any sense at all you’ll have to ask my students. I am bloody exhausted. It’s a little after five and to get home I attach a bus from Baulkham Hills to Parramatta, a train to Granville and another train Ingleburn. I sleep most of the way but one interesting titbit. I mentioned in one of my earlier posts that I face the back of the bus. On the back seat, presumably assuming that everyone was looking the other way, a couple were going at it. I swear they had their tongues down each other’s throats and their hands all over each other. This went on for about 10 min until they got off the bus. So here is yet another compensation of life in the chair! I arrive at Ingleburn at about 715 and Jeremy picks me up with new licence in hand. Home sweet home.

Feb 22 2012

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.

Feb 22 2012

Diary of a day: 9:30 AM

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.

Feb 21 2012

Diary of the day: 7:52 AM

Headphones on, radio National playing through my phone, I scoot off down to the train station. I have taken to avoiding the footpath, sticking to the lovely smooth surface of the road. At 11 km an hour, about the speed of a slow jog (Stephen Fogarty reckons he could keep his pace going for 10 K’s and I shall test him one-day), I get to the bottom of the hill before realising that in my rush I had forgotten to empty my catheter bag before leaving home. Nothing worse than being on a train with a bagful of piss and I imagine it would not go down too well if I was forced to empty it on the floor… So I pull over and empty onto the grass. It is easier when I have someone to assist but I am set up pretty well. I have pants that are sliced up the side to enable easy access. The mechanism that opens the bag works well enough even with my cacky fingers and normally I don’t spill too much on the base of my chair. And so I go to the toilet in public. Now you have to admit that this is a really cool. One of the great advantages of life in a chair.

By now I know the stationmaster by name and he often brings the ticket outside to me so I can avoid the queue. It is Paul this morning and we chat about that inane (what do you say to someone you meet regularly but only for 5 min at a time?). He lugs a ramp onto the train and I get on. The guard is made aware of my destination and the stationmaster from Granville notified to be ready of my arrival. The system is pretty smooth and only very occasionally am I forgotten. I love the rail system. Trains are the only way to travel. I tilt my chair and read my iPad and try not to fall asleep. This is helped by the fact that I’m sitting across from an oddly dressed teenager (shorts and tight T-shirt with a red tie around his neck, rings, a hat with the crest pointing directly up. Overweight and has breasts but I think he’s a boy) who is talking loudly and incessantly on the phone. I contemplate riding over his feet with my 260 K chair but I resist the temptation. At Granville I change trains for Parramatta. Upon arrival I take the lift and scoot off to work. I arrive at about 9:15 AM. Andrew helps me set up my computer and he goes off to make me coffee. I’m spoilt rotten. Andrew is a trained barista and my late’ comes out with the shape of a tree in the foam. I spend an hour and a half writing up these blog diary entries. I should feel guilty but I don’t. But I do have a class to teach this afternoon and should turn my attention to preparation.

Feb 21 2012

Diary of the day: 7:00 AM,

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.

Feb 21 2012

Diary of a day: 3.08am

I am woken suddenly with my legs rocking and rolling and bouncing. I check the clock that projects the time on my ceiling. 3:08 AM. This is a common enough occurrence. Spinal patients are subject to reflex movements of muscles below the level of injury (for an explanation see here) and for some reason I spasm at around this time most nights. It is a weird sensation. The muscles in my legs shake and my knees jump and bend, my stomach and back muscles tighten and my arms go rigid. It is not painful and there is something delightful about the movement of limbs that are ordinarily still. It feels for a few seconds as though I have control of my body. My only real complaint is the time. Sometimes I can go straight back to sleep but tonight I am restless. I think about my kids and their challenges (Jeremy doing HSC, is the studying enough? Jacob and Lachlan obsessed with computer games, how do I get them to read a book?). I think about my wife and the pressure she faces. I think about my work, lectures start this week. And all of this cycles through my brain in utterly pointless rapidity. I decide to write a diary – at least a one day diary, setting out the mundane detail of one day of my life. I shall try and write as I go along. I open my iPad – which is cradled in a mechanical arm that angles it over my bed in easy reach of my arms and eyes. I can read and operate it lying in my back. I open my e-mail file and send a brief description to remind me of the night events thus far. I turn to the Kindle app and take up my reading of Uncommon Gratitude by Chittister and Williams (see previous post). The last time I looked at the clock was 3:53 AM. Sometime after that I presumably fall asleep.

Feb 17 2012

faith and doubt: Joan Chittister and Rowan Williams

As will be more than obvious by now I am only an occasional blogger. I figure it is only worth posting when I have something valuable to say and when life gives me the time to say it. even now, I have nothing original to tell you but I thought you might enjoy a meditation on faith and doubt. I have “borrowed” (stolen) an extended citation from Joan Chittister and Rowan Williams, Uncommon Gratitude: Alleluia for All That Is, (Minnesota: liturgical press, 2010)– available for immediate download on Kindle.

I hope it gets you thinking:

Faith in what we cannot control, do not see, cannot understand destroys the idle that is ourselves. It is only that deep down belief that we are not the be all and end all of the universe that can save us from ourselves. It is the awareness of being part of something vast and intelligent and well intentioned that gives purpose to life, that leads us to seek beyond the horizon of our smallness hope that tomorrow, warped as we may be today, we can all be better.

Faith is one long hallelujah sung into a dark night, the only end at which is another challenging dawn.

Unlike answers that presume the static nature of God and the spiritual life, doubt stretches us beyond ourselves to the guidance of God whose face is not always in books. Doubt is what leads us open to truth, wherever it is, however difficult it may be to accept.

Doubt requires us to reconfirm everything we ever been made to believe is unassailable. Without doubt, life would simply be a series of packaged assumptions, none of them tested, none of them sure, and all of them belonging not to us, but to someone else’s truth we have made our own.

The problem with accepting truth as it comes to us rather than truth as we divided for ourselves is that it’s not worth dying for – and we don’t. It becomes a patina of ideas inside which we live our lives without passion, without care. This kind of faith happens around us but not in us – we go through the motions. The first crack in the edifice and we’re gone. The first chink on the wall of the Castle and we’re off to less demanding fields.

Doubt, on the other hand, is the mother of conviction. Once we have pursued our doubts to the dust, we forge a stronger, not a weaker, belief system. These truths are true, we know, because they are now true for us rather than simply for someone else. To suppress doubt, then, to discourage thinking, to try to stop a person from questioning the unquestionable is simply to make them more and more susceptible to the cynical, more accepting of naive belief.

It is doubt that is the beginning of real faith.


The only real corrective for passive disbelief is passionate doubt. Our institutions are filled with people who never question whether or not the government and the Constitution are of a piece, whether our churches and the gospel are compatible. So we produce unpatriotic patriots and corporate believers, people more committed to the system then they are to following Jesus. We produce them at an alarming rate.

Life is doubt, and faith without doubt is nothing but death … But in this case it is not the body that is dead, it is the mind, it is the soul.

 

selah, think on that.