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.

I’m not trapped in my wheelchair

The mainstream media is obsessed with the idea that the single most important longing of paralysed people is to walk again. This is apparent even in the way we speak about paralysis – with the able-bodied assumption that a person is “trapped in a wheelchair.” But the truth is that I am not trapped in my wheelchair; I am freed by it.

I say this, because once again the world has gone troppo over an exoskeleton, with the opening of the World Cup featuring a paralysed man strapped to a Robocop Avatar, kicking a soccer ball. Apart from the fact that the kick was insipidly embarrassing (travelling all of two meters), the device was a monstrosity, and I have absolutely no desire to try it. If science wants to help me out, it should concentrate its research on the bladder and bowel, and do something about nerve pain and spasm (but of course these sort of advances would make pretty yucky news stories). More importantly, allocate resources to making public and private spaces accessible to wheels, and spend money helping disabled people find meaningful employment, and focus your media stories on paralysed people that have succeeded in the diverse challenges of life using their wheelchair as one of many tools to help them to flourish.

but enough of my ranting. If you’re interested in this topic, let me refer you to a couple of blogs that have said it more bluntly than I can:

Why the obsession with walking? “So hey, able-bodied media: quit making me feel like wheelchairs are a shitty, sub-par option. Stop beating your exoskeleton drum. And most of all, let go of your obsession with walking, because it’s totally overrated.”

and another:

Walking is overrated: “The exoskeleton is Department of Defense research detritus used by profiteers who sell the dream of walking to newly paralyzed people who cannot imagine life as a wheelchair user. As such the exoskeleton is symbolically and practically destructive to a newly paralyzed person. So I would urge paralyzed people to boycott this device! Screw the exoskeleton. Screw walking! Get me a good wheelchair, an excellent wheelchair cushion, and some adaptive sports equipment so one can remain in excellent physical health. Better yet, get paralyzed people a job. Forget about the exoskeleton. Take those funds, the millions of dollars of potential waste, and put a job placement office in every rehabilitation facility. Empower paralyzed people to do what we Americans love to do: work, make a decent living, and be autonomous. Own a home even. Have a family. Get married. In short, be ordinary. Walking is simply not required for all this nor should it be glorified.

Rain, Train, Bus, and A Few Conversations

jellybeanI was wrapped up like newborn baby, a frayed green blanket around my legs, three layers of skivvy covered by a sky blue windcheater over my chest, and a black felt beanie pulled down tight over my eyebrows and ears. Even so, I was shivering, as the crisp winter wind raced toward me, slapping my face and finding the gap in the sliver of exposed skin between my collar and scarf. I was travelling as fast as my chair would take me down Oxford road, heading to Ingleburn station. Along the way I stopped at Teo’s cafe to collect my pre-ordered skim milk latte, which I hoped would provide me a shot of energised warmth sufficient to get me to my appointment at Prince of Wales Hospital.

Assisted by a guard with a ramp onto the train at Ingleburn, and off again at Green Square, I made my way up the lift and out of the station only to discover it was raining. Electric chairs and water are not a great mix, so I accosted a nearby couple, interrupted their hand holding, and asked for their help with my raincoat. Inevitably it was the woman who rose to the task, digging the bright yellow poncho out of my backpack and squeezing it over my head and around my knees, so that I looked like a giant jellybean on wheels. But the seven minutes I was to spend in the rain waiting for the bus made it worth the price of my dignity, and eventually I made it to Randwick, dripping but dry, and well ahead of schedule.

This gave me the chance to take on board some more caffeine, this time at Randwick’s trendy 22 Grams, which was packed full of yuppie doctors and uniform-stylish nurses, crowded around tables and yelling at one another to be heard over the din. While I was waiting for the brew, Annalisa, my former psychologist, spotted me huddled in the corner, and so pulled up a pew, and we managed to get our heads close enough together that we could chat about this and that; the sort of easy-going conversation that comes from shared experience.

And then it was time for the reason I’d made the trip, so I ventured back out into the rain and across the road to Prince of Wales, making my way down one floor via an ancient and jerky lift (with old-style metal non-illuminated buttons) to spinal outpatients. There I was met by a friendly occupational therapist, whose mood was inspired by a recently taken 10 week adventure through South America (the rain had caused some cancellations, so she had a few minutes to catalogue the highlights of her travel, which included a dive with turtles in the Galapagos Islands). Small talk aside, our purpose was to inspect the cushion on my chair. It’s a Roho, comprising of a series of interconnected rubber air cushions that look and move like succulent tuber coral wafting in the current. Earlier in the week I’d been forced to spend a day in bed when the damned thing had gone flat, so the OT was to check up on Elly’s repair and refilling. Slipping her hands into plastic gloves, she slid her arms between the cushion and my leg, reaching for my bum and feeling for the space between my IT bone and the chair. Under-inflation leads to pressure marks, over-inflation leads to pressure marks, but it turned out that Elly had things just right, and so a two-hour journey culminated in a 10 minute appointment for no real purpose, but at least I was free.

I took the opportunity to head over to the spinal ward. Six weeks earlier Annalisa had suggested I visit TT, a resident who’d suffered C1 nerve damage following an operation to remove a tumour. He was now a ventilated quadriplegic, with no movement below the neck, and since he was studying law, she thought I might be able to provide him some encouragement. As usually happens in these situations, the encouragement went the other direction, so I was pleased today to have the opportunity for a second visit. I found TT in his room – cubicle would be a better word, a crowded space packed with medical technology and the detritus that accumulates from months living in a hospital. He was still in his PJ’s, but out of bed and seated in his chair, working away on his computer. Snaked toward his mouth from the left was a microphone for voice recognition, and from the right, a Sip-n-Puff mouth mouse; blow for left click, suck for right click, and grip the tubing in the mouth and move it up/down/left/right to navigate screen. These were not easy apparatus to use (I’d made the attempt in the early days of my rehabilitation, and recall constantly asking for help wiping spit off my chin), but TT seemed to be making a go of it. When I stopped by he was in the middle of an essay, but seemed happy enough for the interruption. He was quietly spoken, constrained by steady rhythm of the ventilator, but he carried himself with a friendly confidence that made for easy conversation. It wasn’t long before he announced that he had recently popped the question to his long-term partner (she said, yes) and, also, that accessible accommodation had been found near his University, so discharge from hospital was imminent. As he shared all of this exciting news, I was reminded of the recent euthanasia of Tim Bowers (see here), based in the assumption that severe quadriplegia was a fate worse than death. Yet, here was TT, living with this severe disability for just over a year, and already working on a law degree, moving into his own home, and getting married.

Not wanting to be the cause of a late assignment, I said my goodbyes and headed home; more rain, a bus and train trip, and a roll back up the hill. It was another of those days when I’d accomplished nothing (I’d left a list of tasks from work and home piling higher), yet it felt like a day that was wonderfully well wasted.

A trip to the clinic

Warning, sexual content

Note: I thought long and hard about whether or not to post this blog topic, wondering whether it is too personal, embarrassing and/or revealing, and so best kept behind closed doors. I’ve decided to take the plunge, however, after a response I received from my good friend Lauren:

Yes the story does reveal your particular vulnerabilities, and maybe you should be embarrassed, but it is breaking down stereotypes in another way.  Our culture talks about sex so much, usually in negative, exaggerated, unreal, or misogynistic ways.  And you know how most Christians talk about sex; pleasure is missing, control is emphasised, prudishness is the norm and sin is always lurking. I think you are discussing sexuality and love, human frailty and desire in very honest and beautiful ways, which challenges cultural and Christian representations.

I’m pretty sure “beautiful” is the wrong word (bizarre, absurd, surreal, might be more appropriate), but what follows is an account of a recent visit to the spinal clinic:

I’m now more than three years on from my injury, and without doubt the hardest thing to deal with has been the injury’s impact upon my sex life. Now, before I say anything more, I don’t want to add to the general assumption that people with a spinal cord injury (or any other disability) are asexual, incapable of receiving or giving sexual pleasure. On the contrary, what people don’t realise is that most people with a spinal cord injury actually do okay in bed. If they’re creative, they have the opportunity to focus on their partner’s pleasure. Also, many retain some sensation (although many don’t) and may or may not be able to orgasm. Most men manage to get a sustainable erection with the help of drugs like Viagra. I say this for the sake of my single brethren in chairs, who are just as likely (or unlikely) as anyone else to be sensational lovers.

Even so, adjusting sexually to the injury definitely has its challenges. In my case, perhaps because God hates me, I’ve been unable to get any sustainable hard on, notwithstanding attempts to use any number of drugs and pumps (it’s all very romantic). As a result, my doctor recommended a Caverject injection. This is a drug similar to Viagra, which is injected directly into the muscle of the penis. And to make sure things would be safe (that there’d be no adverse autonomic dysreflexia or permanent erection – which apparently is a bad thing?), as well as to instruct my Elly in its use, we were asked to attend Clinic for the first injection.

dw_5x10__vincent_and_the_doctor_amydoctorAnd so last week we made our way to the Royal North Shore Hospital, and on arrival were ushered into a sterile clinic, white walls, floor, and roof – and a stainless steel sink. We were met by a delightfully friendly, buxom, redheaded clinical nurse, and a besuited, greying Doctor, and asked to flesh out our situation. After 15 minutes of “tell all” conversation, I was asked to tip back my chair, whereupon my pants were pulled down, and a redhead and grey-haired took a look around. Then I was injected (I couldn’t feel it, but the idea of an injection there was pretty horrific), and Elly was asked to massage it around. As you can imagine, she was red-faced mortified. I didn’t know whether to laugh or to scream. There I was, in a room with three people looking on to see if I’d go hard!

A little bit of success, but not much, so the doctor decided to add some vibration, using a machine that sound like an electric drill. The combination seemed to have some success, at least enough for the Doctor to call time on the show. What it will mean for us in the long term I’m not sure. Truth be told, Elly and I were just pleased to get out of the room.

Really, all you can do is laugh at the situations you find yourself in life!

PS Relax, I was joking. I know God doesn’t hate me.… at least I don’t think so.

Who Am I?

It’s now been 3 ½ years since my accident, and as time marches on, I’ve been trying to make sense of my new identity. My son’s girlfriend, Kate, has only ever known me in my chair. To her, and to everyone I meet from here on in, I can only ever be an old man in a wheelchair. Jeremy was 16, and Jacob 13, but at the time of the accident Lachlan was 10. When he emerges into adulthood, what memories will inform the image he has of his father?

This begs the question of what is meant by identity. In previous generations, identity was a familial and communal concept – we understood ourselves (and were understood by others) as being sons and daughters, brothers and sisters – and members of a tribe, a province, a kingdom, a religion. This was sometimes oppressive, as individuals were trapped and controlled by their genealogies. But if modernity has meant freedom from such control, it has also left us bereft of the meanings and values that direct our life. In the place of family, we have come to understand ourselves by what we do. When we meet someone, we don’t care about their last name or ask about their parents but, rather, we want to know what they do for a living, for a sport, for entertainment.

In my mind, then, I’ve been a Christian scholar/surfer – and I have always been proud of the juxtaposition. What we expect of an academic, especially one who teaches (boring and abstract) theology, is a tweed jacket, confused fashion sense (sadly true of me), and someone who prefers chess to sport (not that there’s anything wrong with that). Being the egoist that I am, I’ve always loved the fact surfing shattered that expectation; so sport was central to my self-understanding (as it is to my parents and brothers). More than that, my identity as father and husband was also informed by my physicality in performing these roles. While I was never a successful handyman, I was at least a “lover and a fighter” – by which I mean to say my manhood could not be divorced from my strength. I was Elly’s “muscle”, and my boys partner in adventure (a fact that ultimately proved my own undoing).

So who am I without these things?

Actually, I’m not without these things. As Phil Smith notes, “we create stories in order to understand who we are, and what we are, and how we are, in the world (P. Smith 2013, 5).” Narrative informs personal identity by expressing our perceptions of the past and present, and capturing our hopes, fears, and vision for the future. So in telling my story, I’m reminding myself of who I am, not so that I can get depressed about a lost self, but so that I can take control of today, and make tomorrow meaningful.

Kate (and maybe Lachlan) will know little of the scholar/surfer, but I can still be more than just an old man in a chair. Of course I am that, but that’s not who I am. Make sense of that if you can.

don’t spend the day in my wheelchair!

one of the more common assumptions about wheelchairs is that they are entrapping. You will often hear it said, “you must long to escape that chair?” Or, alternatively, a well-meaning person might make the observation, “every able-bodied person should spend a day in a wheelchair to know what it’s like to live with disability.”

In fact, the wheelchair is a liberating device – and far from entrapping me, gives me freedom.  yesterday, on my way home from work, my wheelchair broke down halfway up the hill. I was trapped, and my poor son Lachlan had to push me home – all 260 kg of chair and body (champion). at least I’d made it home, but the next day (today as I write) I needed to make an important meeting at midday in the city. so, at 8 AM I called wheelchair service to arrange a fix. I was fortunate that a repair man was available,  and he came to fix the chair. By 10 o’clock, he’d finished and left and I was up and ready for my meeting – only to discover as I was heading out the door that the error had repeated, and I was going nowhere. So back to bed, meeting missed. And here I wait for who knows how long?

My point is, that the chair is my liberation. It does give me some complications. I can’t transfer, so I’m stuck in it.I can’t get in to a normal car, and there are some buildings with steps that are inaccessible – personal homes are the worse – with more than 80% disability unfriendly. but aside from minor inconveniences, I love my chair. Think of the following:

1. Speed – I can get around at 10 km an hour, which makes you lot with legs seem slow. on a pavement, I can be downright dangerous to people who walk with their heads in their phone.

2. Carry – I might not have much arm strength, but my chair makes a handy (pun intended) trolley. I’m brilliant with grocery bags, and make light work of a picnic.

3. Seating – I never have a problem finding a seat. Last on to a packed train – no problems.

4. sleeping – my chair tilts back almost 90°. That means I have a bed with me wherever I go. I’m notorious for falling asleep on the train, having to be woken up by the guard when I arrive at my destination. other passengers are downright jealous (especially retirees and mothers of young children).

5. barging – I never have problems making my way through a crowd. My chair has a steel foot plates and acts like a snowplough when people are in the way.

6. Entertaining – my nephews and nieces love sitting on my lap and going for a ride. They grow out of it of course, but the young ones think it’s brilliant. When a ride is on the offer, I’m the favourite uncle.

If you want to know what it’s like being disabled, spend a day in my bed, and get hoisted and showered by my carers,  and tie your legs together halfway up a hill. but don’t spend a day in my chair, because I need it.

Jeremy just a little bigger than my nieces

Jeremy just a little bigger than my nieces

a bed wherever I go

a bed wherever I go