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“I Wish My Son Had Cancer….”

The title of this blogpost is taken from a comment / story posted on a consultation site we are currently running for the Australian Government.

Way back in 2010 I wrote a post titled “Is online community engagement real” in response to a feeling I sometime get that there is a sense within the community engagement practitioner community that online engagement is somehow less real than face-to-face engagement.

I made the argument in the blog, and have repeadted it ad nauseam at public events since, that there is plenty of evidence that online spaces can be just as emotionally rich as offline spaces. People have demonstrated to us repeatedly that they are more than willing to share incredible stories about complex personal issues.

We’ve seen this in forums, but more recently, and most compellingly through story gathering – and area of increasing interest for us.

Early this year the New South Wales government gathered community stories celebrating the 80th birthday of the Sydney Harbour Bridge and the City of Sydney collected stories about the future of George Street. The Harbour Bridge stories were mostly celebratory in nature; many recording the reminiscences of young children. The George Street stories were more practical, focusing more on transport and infrastructure.

A few weeks ago we launched the portal for the Australian Government’s online consultation about the proposed National Disability Insurance Scheme (NDIS). These stories are very different. They are rich, real, angry, sad, and sometimes breathtaking.

The story below was the very first post on the NDIS Guestbook. I post it here in full without interpretation.

I Wish My Son Had Cancer….

I can almost hear the gasps and you all shaking your heads as you read this but I don’t care. It is true…I wish he did.

For nearly 17 years he has been through almost every type of test, scan and has had so many procedures and surgeries that I gave up keeping count long ago. Trying to keep him healthy has been a constant and a sometimes impossible goal. A good year is usually followed by a disastrous one and sometimes they have all blended together into a swirling blur. I try to keep his brothers and their interests a priority but sometimes they’re not. As for me and my husband….that is also something that has altered and bent and is somewhat more of a habit than anything else.

His surgery to de-tether his spinal cord was cancelled yesterday…24 hours after being told it was on. Apparently he isn’t as much of a priority as someone else. Either that or someone else complained louder than me. It has been 20 months since things started to change. A spinal fusion didn’t stop the changes as hoped. Since then he has been passed from professor to specialist and had every conceivable test possible. He has lost total control of his bowels. Not cool when you are a teenager. We have tried everything that has been suggested and he has been tested for numerous diseases, intolerances and disorders. All are clear.

For almost a year the symptoms have worsened. Bowel washouts are no longer effective as he has accidents before and after. School has been amazing….thank God for special schools or he would have spent the majority of the last 6 months at home. He has had accidents at work experience, youth group and during sport. His self- esteem has plummeted and tonight he refused to go out with his friends to social group just in case he had an accident. Which he did…

His last hope is a de-tethering which we were told would happen as soon as all other possibilities were ruled out. They have been and 6 weeks later nothing has changed. Oh, I forgot to tell you about the hip spasms which cause him pain and last week meant he had to get out of his chair as his right leg wouldn’t stay on his foot plate…

He NEVER complains….never has. Perhaps that is part of the problem. He needs to cry and complain and then someone will listen. Maybe…..

We struggle on…having to almost beg for someone, anyone to listen. He needs to be symptomatic before anything gets done. I said to someone the other day that because he is disabled he comes lower down the pecking order to many doctors. They were horrified at my suggestion but I have been doing this a long time and I know…….she will too in time. See, they can’t “fix” my son…there is no cure…..not ever. No glory in incontinence, paraplegia and brain malformation.

Whenever he needs something we have to find the money that we mostly don’t have. Sure we get some funding but it never covers the cost of stuff. Did you know that one rectal catheter costs $20 and they are supposed to be used once!! We use them til they explode up his bum. We get very little respite and there are definitely no nurses or support staff to coordinate his care and our lives.

Most of what we know we had to find ourselves and on a bad day it is all too hard. And he will never be cured….no chance. Oh, and would you believe that every couple years we have to fill out a mountain of paperwork and go to see all his doctors to prove that he is still disabled!

So yes I am angry, frustrated and upset because what does he have to do to be heard? How much more do you want him to go through? How many more times does he need to lose control of his bowels in front of his classmates, friends, girls and strangers before someone says enough! But he doesn’t complain just chooses to stay at home and watch tv in his room instead of going out.

And we all wait with him while someone, somewhere decides that he really isn’t as important. He doesn’t complain, he can’t be fixed so he can wait a bit longer.

So think about it and don’t condemn me for wishing that my son had cancer…..

Photo Credits: Erik Söderström

Thanks for getting all the way to bottom! Subscribe to our monthly digest newsletter if you’d like to be kept up to date about community engagement practice globally. Take a look at our two product websites: EngagementHQ if you need a complete online engagement solution, and BudgetAllocator if you need a participatory budgeting solution. Or get in touch if you have a story idea you think is worth sharing.

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