That damned LED clock

My eyes opened and I stared at the ceiling. The red LED laser clock told me it was 2 AM. My brain was fried but I’d been woken by a spasm that had travelled from my toes up through my calf and thigh and into my stomach. I shut my eyes and tried for a quick return to oblivion, but my legs were twitching. My spinal injury is incomplete, so I have sensation in my paralysed legs and hands – but it’s muted and warped. If they’ve been still too long, the tension in my legs burns and builds, and then fires, like a bolt of electricity, causing my knee to kick up and bend tight. Sometimes they’ll fall to the side, so that I lay like a twisted chalk-drawn outline of a corpse. Last night, they kicked up and then straightened back out, before shaking crazily in spasm, like an out-of-control orgasm, but one that brought no relief. And so began a cycle that continued until I eventually lost consciousness; twitching, spasm kick spasm, momentary respite, and then twitching again. It is not painful. Just annoying.

What I wanted to do while all this was going on was to get up and take a piss; to stand at the toilet bowl in the dark and hear the twinkle on the water. Or I thought about sneaking into the kitchen, finding some fresh bread, dropping it in the toaster, and when it was smoking hot, smothering it with butter and Vegemite. Or (because I can’t help but torture myself), I imagined crawling over to Elly’s bed, and straddling her while she slept, waking her with a kiss on the neck. But my legs were lead weights, trapping me in bed, so I had no choice but to stare at the ceiling and hope that I’d fall asleep quickly, before that damned LED clock ticked over too many minutes and I started to worry about how tired I’d be tomorrow.

The last time I noticed, the clock read 2:45 AM. At 7 AM I was woken by the smiling face of my carer. I’d soon be out of bed and in my chair ready for the day. At night I’m a cripple, but in my chair I’m a freewheeling lunatic. Bring on the day.

The positivity myth: a belated response to 60 minutes and the Curtis Landers story.

Curtis Landers

60 minutes report: http://video.au.msn.com/watch/video/curtis-landers/xwf16yz?from

I hate watching television reports on spinal cord injury, which normally to follow a predictable two-part pattern. Part one provides pictures of neck braces, helicopters, ventilation machines, and shocked families, all of which is a visceral reminder of the horror of my own injury, bringing back memories I’d rather forget. Part two describes a person’s inspirational recovery, in which she or he refuses to give in to disability, and so reaps the rewards of determination – eventually stepping out of his or her wheelchair.

Don’t misunderstand me. I love to see people who incur a spinal cord injury recover. I don’t feel bitter or jealous and I am genuinely happy for any and all recovery. My best friend in hospital, Sid, began as a quadriplegic and now walks. I recently had the joy of hearing him tell of his return to skiing on the snowfields where he had his accident. Recovery from SCI is something to be celebrated.

But – and this is my point – many people don’t recover. And they aren’t any less determined, any less (or more) inspirational, any less hard-working, any less newsworthy. Yet time and again media reporting celebrates those who recover and ignores those who don’t (or worse, implicitly demeans them), as though their permanent struggles (and achievements) with disability are too embarrassing to talk about.

So I came to the Peter Overton’s 60 minutes report on Curtis Landers with some reluctance [which is why this blog post is a week out of date]. I have to say that I was mostly pleasantly surprised. Curtis is a 15-year-old boy who injured his third and fourth cervical vertebrae while playing rugby league; an injury that would ordinarily render him a permanent quadriplegic. While at the time the story was aired it was still too early to know the full extent of his recovery, what the program was able to show was his remarkable improvement. Curtis has been able to regain function in his arms, fingers, and legs, and when discharged from the hospital, triumphantly left his wheelchair behind. The program rightly celebrated the rapidity and extent of Curtis’ recovery. It also applauded the achievements of his first aid worker, whose ministrations on the football field immediately following the injury minimised the damage to the spinal cord.

This good reporting notwithstanding, 60 minutes couldn’t help but perpetuate the positivity myth. Speaking about Curtis’ recovery, Overton noted that “in his mind, it was never a matter of if, but when,” and followed up with the standard question “was there ever a moment, in all honesty, when you thought ‘I will never walk again?’” Curtis gave the expected response, although with some reluctance “not really, I was planning to play [football] this season again, so walking wasn’t a worry.” This exchange was followed with video of Curtis at work in the gym, taking tentative steps, while John Newman & Alex Clare’s inspirational “Not Giving in” played in the background. And surprise surprise, the report ended with Curtis stepping out of his wheelchair as he left the hospital.

Let me be clear. I have no issue with Curtis; he answered the question honestly, and his positive attitude toward his circumstances is commendable. His recovery is wonderful news, and it should make headlines. What I take issue with is the question Overton asks, which is deliberately framed to imply that believing in something with sufficient faith, and never giving in, will bring it to pass. The reality, though, is that in the early stages of rehabilitation, many people with an SCI hold on to the belief that they will recover, but ultimately have to come to terms with permanent disability.

The fact is that belief has very little to do with recovery from an SCI. When a person incurs a spinal cord injury, the long-term damage to the neurological system is indeterminate, and it takes months and years to find out the extent of the damage caused by the initial trauma. In Curtis’ case, he regained movement in his arms and legs within a week of his accident, and was walking within months. This means that his spinal cord had incurred less damage than his doctor [Jonathan Ball**] initially thought when he apparently suggested to Curtis’ parents that their son would never walk again. To do Overton justice, his 60 minutes report made this clear, before undoing its good work by defaulting to the positive thinking myth. Curtis’ wonderful recovery had nothing to do with his expectation, faith, or positivity, and nor was it a product of his “defying his doctors.” These attitudes might well have helped him deal with the emotional trauma of the injury. But mostly, he was lucky (blessed, if you prefer). If the damage to his neurological system had been more severe, no amount of positive thinking would have kept him out of a wheelchair.

The positive thinking myth has obvious correlations with the naïveté of Christian prosperity/faith healing. Both place too much emphasis on individual faith. Both focus on those who experience healing, ignoring and implicitly denigrating those who don’t. And both fail to recognise that suffering and disability are an inevitable fact of human life, not something that can be believed away.

I hope that 60 minutes and Peter Overton continue to tell the stories of people with a spinal cord injury. There is too much horror in the media, and we do need the encouragement of stories such as that of Curtis Landers. But is it too much to ask that these good news stories be framed more carefully, perhaps by referencing accounts of those who don’t regain any neurological function, who never get out of their wheelchair and walk again, but who nevertheless manage to make a go of life with a disability?

 

** A comment on Dr Jonathan Ball. I was especially disappointed by Doctor Ball’s comments on the program. He observed of Curtis’ recovery that, “It is astonishing. It is inspirational. Across all neurological operations there are a handful of patients that you remember, who are the people who keep you doing what you do. And Curtis is in the handful of patients who are the inspiration to keep me doing what I do.” This may be true, and neurosurgery may well be a largely impersonal discipline – and no doubt Curtis is a memorable young man. But whether he intended it or not, what Dr Ball implied was that none of the other patients that have been in his care are worth remembering (or even worth operating on). I, for one, am glad I had more compassionate doctors supervising my recovery.

Rigoletto: disability and the fool

Elly and I were on the train headed to the city when five half drunk middle-aged men wearing blue joined our carriage; obviously off to the rugby final, Waratah supporters hoping for the club’s first premiership. With the joy of alcohol dimming their inhibitions, it wasn’t long before they directed their attention to us, jealously admiring my chair, and then noticing Elly’s faux fur-lined jacket and my suit, “where are you going tonight?”

I hesitated, embarrassed, before responding, “to the opera house to see Rigoletto.” And then to make it clear that we weren’t actually opera-snob type people, Elly added, “it’s our first time – you’ve got to try it once.”

And so we made our way to the opera house, where we found our seats three rows from the front (a real treat, since wheelchairs are normally squashed into the back corner). The orchestra swelled and the curtains were raised on a darkened set, where a hunchback with a gamy-ed arm and twisted feet was being dressed into the outfit of a court jester – the fool Rigoletto.

The first act is set in the Duke’s Palace, where the courtiers are cavorting with half naked girls (my boys were excited to hear that the opera included some explicit views of nicely shaped pert breasts). Most lecherous of all was the Duke, who went on to seduce the daughter of Count Monterone. In the midst of this riotous debauchery, the fool’s role was to amuse the court, mostly by mockery – laughing at the courtiers as they mocked him in return. Act 1 finishes with Count Monterone being sent to the gallows after denouncing the Duke for the affair with his daughter. As he is dragged away, Monterone pronounces a curse, which the Duke laughs off but Rigoletto takes to heart. Act 2 moves to Rigoletto’s home, where we meet his beautiful daughter, Gilda. And you can guess what comes next (hint: it involves kidnap, sex, revenge, murder, and tragedy).

It was surprising good fun. The plot was engaging and camply melodramatic, and of much more importance was the transcendent voices harmonising with the orchestra (sung in Italian with a screened translation). Emma Matthews’ (Gilda) range, tone, power, and control was angelic, especially when in play with Jose Carbo’ (Rigoletto) and Diego Torre (the Duke). It was a wonderful spectacle, and I had a rollicking good time.

What I hadn’t realised, though, was that the central character was going to be disabled. It took me a while to decide whether to be annoyed or delighted by the portrayal. On the one hand, Rigoletto was a fool, a character whose disability characterised him as laughable and put him on show. Such has always been the place of disability, a fact I’ve discussed earlier in my blog about “inspiration porn.” In Rigoletto, though, the social construct of disability is unmasked, a point made explicit in the song that opens Act 2:.

O man! — O human nature!

What scoundrels dost thou make of us !

O rage! To be deformed — the buffoon to have no play !

Whether one will or not, to be obliged to laugh !

Tears, the common solace of humanity,

Are to me prohibited!

Youthful, joyous, high-born, handsome,

An imperious master gives the word —

“Amuse me, buffoon,” — and I must obey.

Perdition! How do I not despise ye all.

Ye sycophants — ye hollow courtiers !

If I am deformed, ’tis ye have made me so;

But a changed man will I now become. What scoundrels dost thou make of us.

From a disability perspective, the genius of Rigoletto is not only that the central character is disabled, but that he is neither rendered as weak or idolised as perfectly virtuous. Instead, we are given a man who plays the role expected of him (fool), who is no hero (in fact, a murderer), but who nevertheless takes a stand against the courtiers, and seeks vengeance against the Duke. He is a complex character, and the expanse of his soul is revealed in songs of power.

But while Rigoletto rises above the typical view of disability, the same can’t be said for its treatment of gender. Admittedly, the opera is a reflection of its context, but even so, it presents women as either worthless whores or saintly virgins, in each case mere playthings for lascivious courtiers and controlling fathers. It’s certainly a reminder of what feminism has accomplished.

When I mentioned these things to Elly she laughed at me. “Shane, just watch and enjoy the show.” Of course she is right. Next time I am asked by a drunk football fan what I’m doing dressed up for the evening, I won’t be embarrassed to say that I’m going to the opera.

Rigoletto: I highly recommend it (five stars).

A Second Perspective– Guinness friendship and piss

on Jay McNeil’s blogs, Growing Sideways, he gives his perspective of our day out:

So how do I explain this? Lets start when the phone call came at 8:00 am Saturday morning:

“Jay, its Shane – in a spot of bother… my Carer is sick and can’t lift me so I can shower, any chance you could help out? I am not sure who else to reach out to in Melbourne and I am guessing your experience with your daughter Sunshine means you’d be used to the mess of disability.”

 “Yeah, of course Shane… will be there in 20 minutes.” …

To read on, check out J’s blog,  Guinness, friendship and piss.

There’s nothing like nudity to cement friendship

On Thursday and Friday of last week I was invited to speak in Melbourne at the CBM/Luke 14 conference, Honest Conversations: Disability and Authentic Christian Community. Its highlights were too numerous to mention, so let me instead tell the story of my Saturday.

I woke up to the phone alarm of my carer, Lauren, who was sleeping in the bed nearby. A little strange, perhaps (at least that’s what her boyfriend thought – but I’m really not much of a threat), but it’s both cheaper and safer to have someone to share the room. We were staying at the Ibis, Glen Waverley, one of the few motels that could accommodate my needs. But the disabled room was crowded – a single and hospital bed, a hoist, wheelchair, commode, and suitcases – so that Lauren had to play a game of Tetris, moving the detritus around to get me out of bed. My teenage boys call Lauren “the hot carer”, and she is short and slim, especially when measured against my lanky and overweight frame; 45 kg to my 100. It beggars imagination that she can womenhandle my body around, but she’s more powerful than she looks, and has proven up to the task on the previous two days.

Today, though, she looked tired, queasy even, but got on with the task without complaint. with the covers ripped off, I was rolled one way then the other, and the sling was placed behind my back. Then I was hoisted, and Lauren dragged me, straining, across the carpet to the commode. Without warning, she bent over, groaned, ran to the bathroom and puked.

She returned, and we both knew we were in trouble. We were in another city, on our own with no other carers nearby, and I needed to get up and ready, but how could Lauren struggle on? And then I had a flash of inspiration. Last night, I’d eaten dinner with a few friends, including Jay McNeil. the two of us had formed a unique friendship online, but hadn’t met face-to-face until yesterday. Jay is the father a child with cerebral palsy, so I figured he must be used to disabled bodies and bodily fluids. I gave him a call and immediately he agreed to come and help (my thanks to his wife, Helena, who sacrificed a hair appointment to let him come).

In the meantime, Lauren managed to get me to the bathroom and soldiered on with the business of my bowels; I’m sure the smell and her sickness was intolerable, but she is courageous. Toilet, shower, and then Jay turned up, and I could see the look of relief on Lauren’s face. He took over the hard slog of pushing the commode and hoist, and helped me get dressed. There is nothing like a little nudity to cement a friendship!

Before long I was in my chair and ready to make something of the day. Leaving Lauren to go back to bed, Jay and I headed down for breakfast, and then arranged to meet his family at a nearby cafe for morning tea. Jay and Helena have beautiful twin nine-year-old girls; Jasmine and sunshine. Jazzy was rugged up, and wearing cat ears, and she was delighted to see pictures of our pet cat, with whom she shares a name. Sunshine (the daughter with CP) was strapped comfortably into her chair, and at first seemed a little overwhelmed by the hubbub of the crowded cafe. She was in constant movement, her arms and head disco dancing, and before long she cave me a full faced smile that matched her name. We held hands, and I felt like I was in the presence of an angel.

We chilled for an hour, although it seemed like minutes, before Jasmine got justly restless. Helene gave Jay permission to waste his day with me, and we decided to head for the city. I was booked in to lead a “fireside conversation” at Fitzroy North Community Church later that evening, so Jay and I had a few hours to kill. We rode the train to Flinders Station, and then made our way over the padlock bridge to South bank for lunch. It was raining (as it had been all week in Melbourne –surprise surprise), so we got a little wet, but discovered the cosy PJ O’Brien’s pub, and hunkered down with a bowl of soup and a thick black Guinness for lunch. I noticed a small puddle of water under my chair, which presumably came from our dash in the rain. No big deal.

It’s hard to explain the quality of the friendship that has formed between Jay and me via email and blogs, but our conversation was both light-hearted fun and deeply meaningful. We talked disability, parenting, God, work, social justice, and writing. Jay gave me the outline of his forthcoming novels, and I was inspired by his creativity and passion.

As is my habit, I checked on my catheter, and was surprised to find it empty. I then noticed the puddle on the floor had grown. God no! I was soaking in piss. The bloody catheter had come undone at my thigh, and my pants and chair were soaked. We (sheepishly) left the restaurant, and there was nothing for it but to head back to Glen Waverley. Before jumping on the train, we found a bathroom, and Jay stuck his hand down my pants to reattach the line. Nudity, wee, and hands down pants, all on the second date.

We arrived back at the motel at around 4.30 PM, and found Lauren still in bed. She was feeling a little better, although physically drained, but offered immediately to help get me cleaned up. Together the two of them stripped me off, gave me a shower, and then left me in bed while they washed and blow-dried my seat cushion. Of course, I was a lazy sod while they did all the work, and by 6 PM, diva that I am, I  was in my chair and dressed in my second outfit for the day – God forbid I be seen in the same clothes morning and evening!

Leaving Lauren again, Jay and I called a cab and headed back into the city. I think I’ve mentioned it before on this blog, but I hate wheelchair taxis, especially at night. I’m seated high and at the back, with my head above the top of the windows. This means that all I can see outside is the blur of concrete road as we bounce along the tram bumpy streets of Melbourne. I had no choice but to shut my eyes, rest my head in my hands, and pray for a quick trip.

We got there, eventually, and were met by the engaging Ben, who directed us to the wheelchair entrance. The building, recently refurbished, is fabulous; the main auditorium is enclosed by a high arched timber ceiling and modern stained glass windows, and leads to a smaller room that is hosting the evening’s festivities. And “fireside conversation” it was to be, with the cosy room oriented toward a fireplace that I was surprised to discover is gas – it sure looked real to me.

Shane Meyer, who has organised the event, rushed over and gave me a hug. Shane is a Kiwi, and he and I have been friends for years –before my accident. He noticed I was flagging (it’d been a big day, too much travel, and it was nearing my bedtime), and offered cheese, biscuits, and mulled wine (have I mentioned this church is spectacular?), while he sent Ben off to scrounge us up some food. Before long he returned with a chicken roll, and I managed a few mouthfuls before it was time to start.

I was chuffed to learn that the event had “sold out” (they capped the numbers at 30), and the room was full of energetic and intelligent young people (in their 20s and 30s, which seems young to me). Our talk was on the scriptures, and was introduced by Shane as follows:

I’m aware that many people, in a community like ours,  have moved on from an oversimplified fundamentalist view of Scripture, but in that process it’s been easier to drop it altogether. While often it takes a complete disengagement from something to be able to re-engage in a healthy way, I get the sense that a lot of us are somehow stuck in the twilight zone. We know how not to approach Scripture, but we haven’t yet found a way to re-engage that feels safe, life-giving and authentic.  I wonder whether there are two levels of disconnection here: technical and emotional, Feeling ill-equipped, Feeling traumatised

Wow, I know of few churches that would be bold enough to introduce a discussion on the scriptures in such an honest and open way. Suddenly felt a bit nervous, but there is nothing like mulled wine to help you talk about the Bible. And so I rambled, and we all entered into conversation, and time marched by, and before I knew it, it was 9 PM and my taxi was at the front.

It was way past my bedtime, I was exhausted, and I had another bloody taxi ride. I shut my eyes, gritted my teeth, and eventually we made it to Glen Waverley. Jay steered me to the room, and for the third time that day saw me nude, helping Lauren strip me down and wrangle me into bed.

As my eyes closed I reflected briefly on the day. Sickness, piss, exhaustion, and a thoroughly enjoyable time.

The Dark Side of Prayer for Healing

My latest journal article, “The Dark Side of Prayer for Healing:,” Pneuma 36, no. 2 (January 1, 2014): 204–25, has just been published by Brill. if I can be forgiven a boast, I received the following response to the paper:

I have to say that in the twelve or more years I’ve been copyediting Pneuma, this is the best article I’ve ever read. Nancy de Flon, PhD

To give you an insight into its content, the abstract reads:

  • This paper explores the relationship between disability and pentecostal theologies and practices of healing. First, it draws on the testimony of people with a disability, describing the challenge of being the “elephant in the room”: the obviously unhealed in a social space in which supernatural healing is understood to be connected to the gospel, a reward of faith, and a central part of a life and ministry of the church. Second, it deconstructs pentecostal theologies and practices of healing, identifying their potentially alienating effect. Finally, it proposes an alternative orientation, replacing the emphasis upon divine healing with a focus on well-being. To this end, it draws on the holistic intention of the pentecostal Full Gospel and relates this to the virtue tradition, with its concern for long-term flourishing in the midst of the hardship and fragility of life.

I know that journal articles are not everyone’s cup of tea (especially in this era of five-minute attention spans), but I do hope that some of you take the time to read it– available here. I’m certainly happy to engage in any discussion/criticism in the comments section below.