another blog post you’ll wish you hadn’t read

I have said a few times that I really am unsure as to exactly why I am blogging (one of the reasons I post so infrequently). I vacillate between the hope that my story is somehow meaningful and concern that I am driven by some egoistic need for sympathy and praise – that I harbour the illicit desire to be told I am brave. No doubt both are somehow true, since every autobiographer must be a mass of insecurities (as is every person who uses a blog, Facebook or Twitter). So with that confession out of the way – and with the agreement that any of your comments will avoid mention of my virtue; tell something of your own story instead – here goes another blog entry that the weak of stomach would be best skipping over.

My brother Troy and his family, Kris, Aidan, Taylor and Ameliese, came up to Sydney to spend the weekend with us. We decided a journey into the city would do the trick, intending to take these “country bumpkins” on the train to visit the NSW Art Gallery (and the Archibald prize), the Opera house and the rocks.

The day started in fine form when Ameliese pressed a red button on the Ingleburn platform. For a six-year-old, buttons are there for the pressing, but she got something of a surprise when a male voice asked the nature of the emergency. What she had failed to read was the emergency information and the warning of a $500 fine for pressing the button in the absence of a crisis. While we all laughed she broke down in tears, but was soon pacified by the arrival of a shiny new train.

About an hour later, as we waited on the platform at Central for the train headed to St James, I noticed my tummy rumbling and experienced the unmistakable smell of flatulence. Or so I thought. A minute or so later my hands, after wandering around my back, returned to scratch my face when I realised my mistake. Shit! (I have recently been in discussion with my mother about whether there is ever an appropriate time to swear. We agreed that swearing was mostly ugly but I went on to argue that sometimes only a swear word will do the trick. She was not convinced. Whether this present usage proves one or other of us right I will leave you to decide).

So, what do you do with crap on your hands and face and swimming in your wheelchair? The single handkerchief we had on hand did not do the trick (sorry, Ameliese, but you are not getting that one back), and a trip to the bathroom helped only a little. I cannot get out of a chair without a hoist – and we had no spare clothes in any event. But you do what you have to do. Leaving the kids with Troy and Kris, Elly and I waited 25 min for the next train headed for home. Our carriage, fortunately, was generally empty, and Elly was nice enough not to tell me until later of the patrons nearby pinching their noses and rushing to move on. I wished I could have joined them!

After another monumental cleanup by my amazing carers – who must sometimes wish they had trained as accountants – I was fresh as a daisy and back in bed. And there I am again today; another lazy layabout Sunday. A morning of meaningful conversations with Troy, watching surf videos in preparation for the WCT at Bells Beach, and deciding whether or not to hit the “publish” button on this blog. Do I really want to inflict this story on the world?

18 thoughts on “another blog post you’ll wish you hadn’t read

  1. Oh WOW!!! That must have been a really crappy day mate (pun intended)!!!! I guess there are so many things we all take for granted, and don’t even realise what difficulties others face in their day to day lives. Once again, I admire your honesty in your sharing – but I must say, I am glad I wasn’t on that particular train that day either, just quietly…

    You and Elly are in our prayers, and I look forward to catching up one day soon. It’s ironic, really, that I will be working with Alphacrucis more in the months ahead as we get Desert Song off the ground. Who knows, I might pop in to say “hi” to you in the office one of these months.

    God bless you guys.

    Dave Keane

      1. Hey Shane, I have to tell you that my wife and I laughed uncontrollably through this post admiring your wicked sense of humour and incredible skill in telling a story. Thank you so much for taking the time to write your thoughts it really is water for the soul. Take care. Jay McNeill

  2. What. Egotistical! Me?

    Well I never….. 🙂

    I look at blogging as a conversation. Albeit that often it can be a one way covo. For me it was, is and I think will be a continual tool which helps me to engage in many varied processes. Thoughts, beliefs, experiences and the building up of net works, and dare I say it, the possibility of making deeper sense of purpose and being.

    I think your blogging is a valuable tool in the ongoing development of a theology of disability, which Amos Yong has done some great research into. How is the church to consider ‘success within the framework of smells and mess? Does your need for carers actually make a mockery of the modern sense of individuality within the church; instead showing in a tangible way what true community should look like?

    In many ways modern technology I think helps to build up ones sense of identity and belonging. Whether that is real or not, is perhaps another discussion in the making…but within an ethical framework, just what does a true identity look like?

  3. NOt quite in the same league but a similar experience for my daughter Miriam on her birthday recently. 20 month old son had climbed into bed with her as she tried to have a lseep in -snuggled up together and then he wiped said item all over her face!! “Happy birthday Mum!”.

  4. You know Shane, while the topic is not exactly delightful reading, I think that your willingness to be honest and share the real side of living with a disability is why people should blog. You may never know who reads your blog and is blessed. It is easy to see someone with a spinal injury and just think ‘Oh, they can’t feel their legs.. Poor them!’ Very few people realise the every day challenges faced by the wheelchair bound. I know my eyes have been opened! And it’s not pity or sympathy that is needed, but genuine understanding and support. Life can be really tough: a bowel movement at the wrong time, a bed sore, a burst catheter bag in the middle of the night, a UTI when you least expect it.. So go ahead and share whatever you are comfortable with. Education and awareness is good for the masses!! (Though I’m probably with your mum on the language issue ;-))

  5. Shane, one of the reasons I love your transparency is that it allows the majority of the population to have a glimpse into a world they may never have known. We all can do with a little help in seeing the world through someone else’s eyes. I could spend all night sharing shitty stories, having spent over 20 years working in disability services, but we’ll save that for another day. As for your carers, its just a part of the job, there is soo much more encompassed in a carers job that gives satisfaction. I’m with you on the swearing issue (sorry Olga), some situations just call for it! Your ability to share your experiences is possibly good therapy for you too, sharing always helps reduce the sting of painful experiences and its great to see that people care. Its been good to catch up a bit with Elly, I’ll have to pop over for coffee sometime.

  6. Yes, I agree with Coral… people need to hear it ALL, because the average person doesn’t really have a clue about the daily challenges of living with a spinal injury. Most of us are not exposed to someone with such an injury, and the only exposure we have had is maybe a smaltzy movie which leaves out all those nasty messy realities… after all we wouldn’t be left with that nice warm glow if THOSE bits were included!

    Another thought… I used to be preoccupied with the thought that maybe I’m just a lazy person, rather than someone with ME/CFS. Then one day someone said to me “You know Anne, truly lazy people don’t wonder whether they are lazy, they just are, and they’re quite comfortable that way!” Maybe the same applies to you… maybe someone who is really “driven by an egoistic need for sympathy and praise” wouldn’t even be wondering or questioning themselves. So in my humble opinion… NO YOU’RE NOT! (Hope that statement doesn’t violate “the agreement that any of your comments will avoid mention of my virtue” condition of posting a comment!). We’re all a mass of insecurities anyway, bloggers and non-bloggers alike. It’s part of the human condition… it’s just that some people are honest about it and others cover it up quite well.

    God bless you Shane, I still often get “nudged” to pray for you… especially when I’m having a bit of a “sooky” day feeling sorry for myself.

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