“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.”
So let me back track just a little. I have a friend Shane who is… well… a smarty pants. He is the Dean of Theology at a college in Sydney but what makes him more interesting is his thinking and processing about his accident a few years ago and the impact that has had on his faith and life. Now he looks at people from the height that his wheel chair allows instead of the ‘6 foot whatever’ that he really is. We struck up an online friendship after Shane reviewed my book ‘Growing Sideways’ and ever since then we have been shooting the breeze.
We have admired each other’s perspective on disability, he through the lens of his own challenge, and me through the experience of my daughter Sunshine and her cerebral palsy. It has been an energetic exchange of words to say the least. Up until the moment of his phone call I thought disability was all the same. In other words, living with Sunshine and her cerebral palsy I assumed that there wasn’t much that I couldn’t handle. Well… how bloody wrong was I?
Amazingly I had never meet Shane in person. Up until this point he has been a pen pal and I was in no danger of proximity ever causing me to extend my expression of friendship past a collection of nice words in the unreal world of social media. Shane was in Melbourne doing some teaching. He travels with a full time Carer to get him dressed, showered and looking pretty. When I arrived at his motel I knocked and the door opened to a tiny room with a hoist blocking what little space there was and a layer of abandoned clothes waited for the wash cycle. I was up for whatever needed to be done – well so I thought. Lauren who is Shane’s legendary Carer was as pale as a Melbournian mid winter complexion trying desperately to hold in her volcanic tummy rumble. She moved quickly to give me direction to get Shane dressed and into his wheelchair.
“OK Jay, we need to get his pants off but watch out for his catheter.”
Whoa… hang on a minute. Did she just say get his pants off? And what the hell do I do with a catheter? I was seriously out of my comfort zone. Shane’s words on the phone call kept replaying in my mind.
“I am guessing your experience with your daughter Sunshine means you’d be used to the mess of disability.”
Yeah I might be used to lots of things but I have never ever helped a grown man take his clothes off and winch his 100 kg body into a shower chair. On the outside I acted totally normal because the last thing I would want is a good friend of mine to feel awkward. So I listened carefully to Lauren’s instructions, ignored the nudity and pretended I was eating ice cream by the gallon. Now I have to describe Shane for a minute. He is still pretty buff even after 3 years of propelling himself in his electric chair and a bloody big person who commands a certain amount of authority just by being present in a room. He is charismatic and highly intelligent. It was a shock to my sheltered world of disability to be fully exposed to an entirely different routine.
Shane was eventually in his wheelchair – to be honest I was relieved. I just wanted to have a more superficial relationship with Shane and get back into our heads and talk about life – not actually ‘do’ real life. We walked/wheeled down to a local cafe and chewed the cud for an hour. In a burst of inspiration Shane suggested we invite Helena and my girls to come down too so he could meet the famous family that I blogged about so frequently. It was delightful.
Shane had a gig that night so we made plans to go to the city so he could have a look around. We took the train which was where I became aware of Shane’s sizable wheelchair and how much more difficult it was to maneuver around the place than my daughters chair. We talked and talked, then for a brief moment we paused. Shane broke the silence by asking if I wanted to see the youtube clip of when his benign accident happened (and I mean really benign). I wasn’t sure what to say other than yes. I watched every detail as my mind wrestled with observing Shane’s able body riding a bike on youtube and glancing across the train as he repositioned his broken body to be more comfortable. I know he didn’t want me to feel sorry for him but I couldn’t help but empathize – what a bloody ruthless life we live.
Eventually we ended up at an Irish Pub and I was craving some alcohol to reward myself for the unusual start to the day. Shane obliged and we ordered a counter meal as well. I was enjoying being back in our head again and lavished the opportunity to stretch my thinking. During the meal we noticed some water at the bottom on Shane’s chair, it had been raining so we assumed the chair had collected some water along the way. We finished our meal and simultaneously looked down at the ground to find the puddle had gotten bigger. I could feel myself being dragged from my preferred position of superficial conversation to the uncomfortable sensation of real life again.
“Jay… does that look like water to you?”
“Yeah, I think so, what else could it be?”
“OK Jay, could you reach down and see if my catheter is leaking? It is hanging on my leg.”
OK… did he just ask me to see if his catheter was leaking in the middle of an Irish Pub? Well… its a Pub I guess, plenty of drunk patrons have pissed on the walls thinking they were in the men’s room so it wasn’t that bad. I lifted his trousers up from his ankle and he was bone dry. Quite a relief really, I simply had no idea what I’d do if we had a malfunction.
Shane wisely decided to go outside, the puddle was getting bigger and there were no drunk Irish patrons to be seen. The puddle followed his wheelchair out the door like a trail of gunpowder. Something was seriously wrong and no pretending that all was well was going to change what was becoming an emergency. I lifted Shane’s blanket from his legs and he was completely soaked through. The look on Shane’s face was of complete horror and intense frustration with the body in which he now lived. I could see the disappointment in his face and the resignation in his eyes that he was going to side step any dignity he had left and ask me to check his pants. Sure enough they were soaked. The catheter had come undone at the top but his legs couldn’t send a warning signal because he has no feeling.
By now I was resigned to doing whatever it took, there was no way in hell that I was going to let my friend feel anymore awkward than he already did. We found a disabled toilet and I lifted his soaked pants and connected the leaking tube to the bag. For some stupid reason I saw a red button on the wall that I assumed opened the door to exit the toilet and pressed it without reading the sign. It wasn’t the button for the door of course, it was the button for an emergency! The alarm went off elevating my heart rate and Shane and I burst out of the cubicle noting the heightened eyes of the people around.
“Don’t worry everyone, everything is fine – nothing to see!“
Right at this point everything was feeling like an emergency, I suspect my instinctual attraction towards red buttons that day was my subconscious reaching out for help.
“Jay, we are going to have to head back on the train so I can shower and get this piss off me and get ready for my gig tonight.”
“Well let’s do it then Shane!”
We headed back to the motel. Lauren was still the color of a cheap porcelain doll but well enough to tell me what to do. Together we stripped Shane down. During the undressing Shane grabbed the remote control for the TV and disappeared for a while. What else was he going to do? Eventually he was showered, dressed and ready for his gig that was back in the city from where we had just come. I went with Shane and listened to a cacophony of thought that poured out his mouth effortlessly. His body may have been broken, leaking and a real nuisance but his preparedness to meander down pathways of honest self-reflection was a stunning example of community and real life. After an exhausting day we took a taxi back to his motel and for one last time took his clothes off and winched him into bed.
Truthfully I am still processing that day, being with Shane was a treat but just like my daughter Sunshine, his body screams out to those who are infatuated with preening themselves to make their bodies perfect and sorrowful over every new line that comes with age – the contrast seems ridiculous. Still… even I, with all the experience with my daughter, was much more comfortable with keeping Shane as a virtual friend rather than being real. Now Shane is a real living breathing person and not a virtual friend anymore, his disability is not a theory. When we converse in the future it will be sobered by the fact a piss phobic person like me has been up close for a few hours in Shane’s life.
Another thing I have realised is just because I have a daughter with special needs in no way means I am au fait with every other disability. Shane caused me to be reminded what it feels like for someone to be confronted by a broken body and touch the hem of fragility. My previous blogs about unrealistic perfection have more substance in my own mind now because of a few crazy hours spent with a friend who messed with my mind.
With courage, Shane chooses to be present in his sorrow and rewards those around him with the gift of realness. I have been confronted by my own words and challenged by my tendency to intellectualise the human condition. Why after all these years of living with disability in our family would I still be drawn to intellectualising my environment? It was a revealing moment. I think I have become more real when it comes to my daughter Sunshines life but honestly, I think I am still driven towards all things ‘nice’ despite the quality of character that ‘messy’ brings. I can hear the words of the wise shouting at me, “you have so much to learn grasshopper.”
We are friends – good friends and a lot richer for experiencing Guinness, friendship and piss.