I’ve just returned home after a five-day surprise visit to Prince of Wales hospital. I’ve been having problems with autonomic dysreflexia (AD) during my morning bowel routine (yes, I know, poo is something we don’t want to talk or think about, but when something goes wrong with the plumbing it’s a real pain in the butt). AD occurs when problems arise below the level of my spinal-cord injury, and it results in dangerously high blood pressure (BP) rises; in my case 255/135 when a normal BP is about 120/80. BP spikes of this type can cause strokes and bleeding on the brain, and since I quite like my brain, it’s a matter I had to take seriously.
So, a visit last Thursday to my spinal doctor to seek her advice resulted in me being readmitted to POW. After five days investigations, it’s been concluded that the issue should be solved by a colostomy that was already scheduled for 17 November (for a non-gross explanation of a colostomy, see this video here, and for a much more interesting video, see here – and Elly, I would advise you not to click). Truth be told, the idea of a colostomy is a bit icky, and I’m a little nervous about the whole thing, but I’m also looking forward to what should be a more efficient way of managing my waist. Sure, I’ll now have a bag for both wee and poo, but it should make my morning routine less complicated (providing, of course, that nothing goes wrong).
Anyway, I was sent home from hospital last night with some drugs to get me through till the op without brain damage.
I’ve been asked by a couple of people what it was like to be back at POW. I guess it felt a little bit like returning home – maybe like returning to a foster home with parents that you mostly liked, but were still pleased to have escaped from. There were some fantastic people involved with my care and rehab five years ago, and some of them are still there, so it was nice to catch up– and once again I was well looked after. Even so, I was pretty keen to keep the visit short. The food is still intolerable (I refused to eat it, buying meals and eating “bring ins”), and hospitals are noisy places. And since the doctors had me up at 5 AM to check my blood pressure hourly thereafter, I became drastically short of sleep. So it was more than nice to return to my own bed.
I also felt like the wise old man in the ward, and I hope I didn’t come across as smug. It was full, as usual, of mostly men (I only encountered a single female patient). They were all friendly, but were facing all the difficulties of adjusting to life changing injuries; struggling with uncertainty, hope, frustration, depression, determination, and the wide range of emotional ups and downs that goes with the early months of sci. I was thankful to be a little further down the track. There was some satisfaction in being able to answer questions and provide a little bit of hope that things will get better and life will go on.
it’s great to be home. Of course in a couple of weeks I’ll be back inside (for about five days) to undergo the procedure for the colostomy. I reckon I can face up to a stint as short as that.
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.
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.
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 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.”
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.“