The Intouchables: film review

**POTENTIAL SPOILER ALERT** (although the film itself gives away its end in the beginning, concerning itself with character over suspense)

First, a little pedantry; the term “Intouchables” is not a spelling error but the French equivalent of “Untouchables” [and yes, it is a foreign subtitled movie given limited distribution in Australia]. In the context of this film the title seems to intend a double meaning. The lead character, Philippe, is a C3/4 quadriplegic with no movement from the neck down and, consequently, no capacity to reach out and touch. More importantly, both Philippe and his carer Driss are outcasts; the latter a poor black, paroled (and despised) migrant, the former a pitiable paralytic – each in their own way untouchable.

The plot is a simple one. The wealthy Philippe hires Driss as a personal carer, notwithstanding the fact that he is patently unsuited to the task. To say nothing of his criminal background, he has no training or experience in the field and, as soon becomes obvious, his knowledge of spinal-cord injury (SCI) is laughingly basic [Is there really anyone in the world who does not know that paralytics normally have no/little feeling? That notwithstanding the absence of pain it is a bad idea to pour scalding hot tea onto a persons' legs?]. He is hired on the sole basis that, from the very beginning, he responds to Philippe without pity, even without compassion. He jokes, teases, challenges and questions Philippe in a refreshingly unselfconscious way, no topic out of bounds (even quadriplegic erotica).

At one level, Intouchables follows a predictable and stereotyped pattern; wealthy white man is brought together with poor black man, cultures clash, white man introduces high culture to unsophisticated black man, black man introduces funky dance and lawless joy to stuck up white man, both transformed. As is typical, it also ignores the obscenity of the white man’s wealth in the face of the black man’s poverty (and, as I’ve noted elsewhere, without owning up to the fact that disability and poverty often go hand in hand).

And yet, at another level – and this is what counts – the film is sheer delight. What it has going for it is a number of rich characters, as well as insight into the unique world of quadriplegia from the perspective of both the person with an SCI and his carers. Obviously, the story resonates with the experiences of my wife and I, leaving us grateful that my injury was not as severe as that suffered by Philippe (there is almost always someone worse off than yourself!). But if the response of other patrons in the cinema was anything to go by, its appeal is universal and its story inspirational. And as much as I hate that overused word, the film’s encouragement comes not from the heroic character of either Philippe or Driss, but from the affirmation that friendship is what really matters in life.

Four stars.

About these ads

Travel to Canberra: lessons learned

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.

.

the non-disabled depending upon the disabled

I spend much of my day asking for help. Coming home from the train station yesterday I was cold and so stopped to ask a young lady to get my beanie and mittens out from my bag. She looked at me strangely and said, “can’t you get someone else?” when I noted that she was nearest she again refused to help. it is a response that I get surprisingly often. initially it embarrasses me (I must look like a creepy pervert) and then it infuriates me. I suggested that she think of her failure to help me every time she watched the news of the Paralympics, and then made my way to ask someone else.

With this in mind it was interesting to come across the following quote in a book by Amos Yong, Theology and down Syndrome: Reimagining Disability in Late Modernity:

  • Sharon betcher notes (2000: 93), when she says as a person with a disability “excuse me, i need your help”—“in that moment the frozen wall between us topples; in your converted countenance, i discern that, as if in the twinkling of an eye, you have been changed. For the 45 seconds i needed you, you did not feel extraneous to the world. Sometimes i will ask for help just to save you, the nondisabled, from superficiality and irrelevance—just to save us from your own worst fear.” in that moment, god’s saving grace is made available through “the stranger” or those on the margins, and we can receive this grace or not depending on how we respond. This is the criterion dividing the sheep and the goats at the judgment: “just as you did it to one of the least of these who are members of my family, you did it to me” (matt 25:40). Hence, the question concerns not the dependence of the disabled on the nondisabled but the other way around: the nondisabled are dependent on the disabled, whom god has chosen to be a means of saving grace. (page 188)

This is such a profound paragraph. And it has me wondering, what does that mean for the people who so often say “no” to the ‘creepy’ me when I ask for help? or much more importantly, what does it mean for all those brilliant people who help me time and again.

Standing and pregnant? Not quite.

I hate this photo

I hate this photo.

At first glance it looks like I am standing, and I am. I am participating in a study that requires me to stand on a tilt bed for half an hour every day, held by straps at my knees, waste and chest. The research is trying to determine whether standing assists in bowel movement. To be honest, I am not sure of the point. If it normally takes about 20 – 30 min for the nurse to help us do the business, then it seems odd to stand for ½ hr to save 10 min or so. Anyway, given the difficulties of sci and poo (brutally attested to on this blog) I am sure whatever they learn will be of some value.

But I hate this photo.

My carers, who have only ever seen me lying and sitting, were shocked at how tall I am. My head reaches over the end of the table and, given the contraption is elevated a few feet off the ground, when upright the roof is close indeed. It is certainly an odd feeling to stand again. It leaves me somewhat lightheaded, my blood pressure dropping to 87 on 52 tonight (our blood pressures are ordinarily lower than normal), but it is nice once again to be able to see the top of other peoples head.

Even so, I hate this photo.

Yesterday, my delightful Pakistani carer leaned over when I was standing and put her ear to my tummy and laughed and laughed. My excuse is the absence of tummy muscles, which results in what is called the “quad pot”. Seriously, I am careful with what I eat since I get no exercise but; I have either sprouted a beer gut (without drinking beer – and surely the occasional Scotch shouldn’t have that effect), I have an alien in my belly, I am pregnant or dammit all I am just plain fat! Curse those useless tummy muscles.

and what is it with that hair? Off to get it cut!

and the camera adds 10 kg, but…

I hate this photo.

 

The Strangeness of Prayer and Providence

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.

the bone collector

critical review of Jeffrey Deaver’s The Bone Collector

A few months after my accident I was given the present of an Apple iPad, a brilliant invention for those of us with kacky hands, since sliding fingers is enough to make it work. The first e-book I downloaded to the Amazon Kindle app (and I have spent a fortune since) was by Jeffrey Deaver, The Bone Collector, also made into a movie starring Denzel Washington and Angelina Jolie. The novel was recommended to me because the central character, Lincoln Rhyme, was a quadriplegic.

The novel was okay – a light enough and sometimes thrilling read – and I was just happy at the time to be able to get my head into a book. I was intrigued by Rhyme, whose story I could at least partially relate to. There was, however, something that was not quite right, but I could not pin it down at the time.

Rhyme is a high-level quad, unable to move anything from the neck down except his little finger. He is wealthy, having received a substantial payout as compensation for his injury. As a result he has access to extraordinary technology, not only assistive wheelchairs and top of the range vehicles, but a state-of-the-art sound system and television and even a $200 down pillow.

When we first meet him, he is receiving visitors, his former friend and colleague, Lon Sellitto and another policeman. They are shocked at what they see:

“Rhyme had changed considerably since Sellitto had last been here and the detective didn’t hide his shock very well… The sloppy room, the vagrant gazing at them suspiciously. The smell too certainly – the visceral aroma surrounding the creature Lincoln Rhyme now was.”

What quickly becomes apparent is that Rhyme is both bitter and angry. He is impatient with Sellitto, and his animosity is such that he has had no visitor for three months (except his long-suffering personal carer). Sellitto is uncomfortable but he understands Rhyme’s aggression, appreciating the magnitude of his loss. Prior to the accident Rhyme had been a forensic detective, one of the best in the business. Now he is a trapped in a broken body. And so it is not surprising to the reader that he refuses friends and stays locked in his room, bedridden, his only company a lonely Falcon that has come to live on his windowsill, taking the daily flight that Rhyme so wishes could be his.

And so Rhyme’s loneliness is interrupted by a visit from his former colleagues, who need his help in an ongoing crime investigation. He gives them a minimal attention before shooing them out so he can take an appointment with a Doctor Berger, described in glowing terms as having “the best bedside manner Rhyme had ever encountered”. The doctor’s subsequent physical examination gives Deaver another chance to describe Rhyme’s experience and character

“Rhyme paid no heed to the lack of privacy. One of the first things crips get over is modesty. While there’s sometimes a half-hearted effort at draping – shrouding the body when cleaning, evacuating and examining – serious crips, real crips, macho crips don’t care.”

The extent of Rhyme’s ‘macho’ then becomes apparent. Dr Berger’s particular expertise is assisted suicide. We are, thereafter, given a whole chapter that describes the horror of Rhyme’s past and present experience and are left in no doubt that, in those circumstances, the ‘manly’ thing to do, the only valid response, is to utilise this good doctor’s services.

Ultimately, of course, the decision for suicide is set aside as Rhyme finds some meaning in the return to criminology (and becomes the subject of a string of subsequent books). I will leave others to comment on the quality of the book as a work of crime fiction but from the perspective of disability there is one more intriguing aspect to the novel. Assisting Rhyme in his pursuit of the criminal is the beautiful Amelia Sachs (later to be played by Angelina Jolie). What starts out as an entirely functional and aggressive relationship ends up in an unusual bond – an entirely a-sexual friendship that is described in sexual terms when, near the end of the novel, Sachs takes Rhyme for a drive in her sleek black Chevrolet:

 “’isn’t this the best, Rhyme?’ She shouted ‘man, better than sex. Setter than anything’”

“’I can feel the vibrations’, he said, ‘I think I can. In my finger’”

So, there you have it. An inspiring novel about a quadriplegic man who overcomes the horrors of his disability by the help of a beautiful woman. A meaningful and real description of an inspiring disabled man. Or so it might seem. In fact, The Bone Collector is a sensationalised story presenting a stereotypical picture of spinal-cord injury (SCI). Deaver knows next to nothing about living with quadriplegia and projects able-bodied assumptions about what he imagines life should be like for people like Rhyme. Note the following:

  1. Deaver (and most of his readers – the book rates 4 1/2 stars on Amazon) presumes that death, even by suicide (performed by heroic medical rebels), is potentially better than life as a quadriplegic. In fact, I have never met a quad who felt that way but I have met many able-bodied people who admit to asking themselves the question, would I be better off dead then paralysed? This question, however, reveals the underlying assumption that the quad is essentially no longer fully human, no longer really alive, without the potential for joy or the opportunity to contribute to others. My experience, however, is that SCI people want to live and are driven (like everyone) to make the most out of life, whatever its challenges. Of course some quads at some point will contemplate suicide, as do many people in all walks of life. But to have suicide as a major theme of a book centred on an “heroic” quadriplegic does an absolute injustice to the mostly driven people that make up the SCI community. Deaver might claim that he has Rhyme come to realise at the end of the novel that life is better than death, but this conclusion is a very close run thing – and might have gone the other way if Rhyme was not needed for subsequent books in the series.
  2. Notwithstanding his access to mobility aids, Rhyme spends most of his time in bed shunning the company of friends. Honestly, this is an absurd portrayal of a quadriplegic. While bed rest might sometimes be forced upon us, no one chooses to stay there, locked away from friends and family. Of course sometimes wheelchair users are forced into exclusion, when buildings and other social spaces are inaccessible – a too common reality; take a look at your own home and ask yourself, could a quadriplegic visit? Accessibility aside, even the most down and out SCI patient I have met at least gets out of bed to have a smoke and get drunk at the pub  – a fact that indicates that a person’s character and habits before an SCI inform his/her habits afterward. Unless Rhyme was a depressive loner prior to his injury (and we are led to believe this was not the case) it is extremely unlikely he would become such a person afterwards.
  3. Rhyme is made wealthy by a payout but the money seems to have been wasted on him – he spends it on trinkets (pillows fit for Kings) but could do with far less. This reflects the common view that insurance payouts to victims of accidents are over the top, examples of the absurdity of a legal system that supposedly favours disabled people and leaves the rest of the community with inflated insurance. Now, apart from the fact that the vast majority of sci people live below the poverty line, often struggling to get meaningful employment and barely surviving on pensions that are totally inadequate, even those with substantial payouts are not living extravagantly. Most have had to repay massive medical expenses, and have ongoing costs that a payout will have to satisfy over the course of a lifetime.
  4. Deaver has the sight of a quadriplegic as being shocking. Rhyme is labelled “a creature” and even the smell of the room in which he lives has a “visceral aroma”. Almost every character who comes to visit Rhyme in his bedroom responds to his quadriplegia with shock and a certain horror – as though such reaction is normal and acceptable. How odd. No doubt, in the early stages of injury in ICU, a quadriplegic hooked up to wires and tubes and monitors looks confronting. Thereafter, however, they look and smell about as horrible/nice as any of the weird people that make up the human race. Even ventilated quadriplegics get dressed up and look pretty “normal” – whatever we mean by that term.
  5. The dehumanisation of Rhyme extends to the assumption that as a quadriplegic he is used to being prodded and poked and showered so that all sense of privacy has been set aside. Now, it is true that sci people learn to appreciate the body for what it is – a body! But that does not mean that the really “manly crip” (to cite to Deaver) has no sense of personal dignity.
  6. In an attempt to indicate that he has some inside knowledge of the SCI community, Deaver has Rhyme describe himself as a “crip.” Now it may be that sci people themselves use such labels, taking what is pejorative and turning an insult into a label of power. Such relabelling is our right. But it is not a right that Deaver has earned, especially with his prejudiced portrayal of Lincoln Rhyme.
  7. Finally, the dehumanisation of Rhyme is made complete with his a-sexuality. Every male in The Bone Collector responds sexually to the beauty of Amelia Sachs … except Rhyme. In later novels we discover that it is precisely this that attracts her to him. It is as though Rhyme has been removed from the heterosexual community and taken on the role the media traditionally give to gay men – best friends with beautiful women sick of being objectified by men. And so rhyme is portrayed as a eunuch, as only half a man – as utterly excluded from sexuality. In fact, however, female and male sci people remain as fully sexual beings, capable of admiring and even lusting after beauty. Again, it is only able-bodied people who imagine that paralysis destroys sexuality. This review is not the place to set out to describe the sexual life of paraplegics and quadriplegics but it is enough to note that the emasculated Rhyme is an invention – a projection from an able-bodied person as to what life, without sex, must be like for a disabled person.

What becomes apparent is that Jeffrey Deaver knows nothing about sci people. But does this matter? He is, after all, writing a novel, and its purpose is entertainment not social commentary. Of course, it might not matter to able-bodied people just looking for a good read. But it does matter to me. A novel that purports to elevate a quadriplegic as a “hero” should tell the story of a realistic disabled person. Lincoln Rhyme should not have to be pushed by able-bodied people to get out of bed. He should not have to be saved by a beautiful able-bodied woman. At the least, he should not be a cardboard cutout of the able-bodied imagination, a mass of stereotypes and only half a man. The SCI community deserve better.

Btw:  if you appreciated this review, please consider taking a journey to Amazon and voting on my review of this book on their website (a summary from this blog). This might give some prominence to my concerns when people consider purchasing this book. My review can be found by clicking the “one star” reviews – there are only 10 of these so it should be easy to find.

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: 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.