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.
Steve GoreJuly 15, 2014 at 1:56 pm
I really enjoy reading your stories Shane. Thank you!
Clare HarrisonJuly 15, 2014 at 8:04 pm
Oh I want a fireside conversation and mulled wine and to talk about re-engaging the scripture in a way that is safe, life giving and authentic. I wonder if I could make it to Fitzroy on sundays… Do I have to be intelligent and under 30?
Only last week my best friend and I were discussing those exact concepts that opened your meeting. That quote fills me with joy and great encouragement……….Christian repatriation?? Warm bodies?? Anyone likeminded ever coming to the Sunshine coast? I could bring my smart kids……
I can relate all too well with the fluids and nudity, poor Shane.
DebJuly 16, 2014 at 9:03 pm
some of God’s best gifts are friends and a sense of humour – glad to see you are blessed with both 🙂
SamJuly 17, 2014 at 5:22 pm
Another enjoyable read Shane.
JS0613January 28, 2017 at 10:15 am
I second that…
Great writing and very engaging. This was my 2nd read.