One of the things that is difficult to get used to is being tied to a fixed location. I have carers in the morning and night and mostly this provides a routine that works well. I get up at seven each morning, taken to the bathroom and then showered and dressed, and then I go about my day before being put to bed at 8 PM. There is definitely something healthy in a routine of this type. Your body and mind appreciates the rhythm and the consistency, and generally I sleep well and cope with the day.

The real challenge is the fact that this routine keeps me tethered. It feels a little bit like being strapped to an elastic band. I can move around and have a certain amount of freedom but I can only go so far before the elastic drags me back home. I am a 40-year-old living under the constraints of a 14-year-old boy whose mother is keeping him under tight reins.

While I cannot cut the elastic band that binds me, I can untie it if I am organised. I can defer or cancel evening care “please mum, can I stay up late tonight?”. The morning is more problematic but I can arrange for carers in a different location. And if you’re wondering why Elly can’t manage me on her own, you just haven’t thought about it enough. There are just some things a spouse should not be asked to do! Elly is amazing and cares for me throughout the day, but I’m not sure our relationship would survive my morning care.

I intend to travel and stay with my family at Christmas and I think over time I will end up working out how to roam far and wide. It is early days and I am inspired by the exploits of those much further along the journey than me. Check out this guy, Rob Cook, who travelled 730 km in his wheelchair through the Australian desert before arriving in Alice Springs (see here). Puts my little adventures into perspective and reminds me of what is possible.

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March 23rd, 2019

Grace and the Sydney Gay and Lesbian Mardi Gras

September 27th, 2018

Year 12 graduation, parent’s tribute

October 1st, 2017

Million Dollar Baby: a film to love and hate

September 2nd, 2017

Just say hi?

June 22nd, 2017

Pauline Hanson and the politics of demonising difference

April 11th, 2017

Bottoms Up

January 1st, 2017

Wheelchair Adventures

September 2nd, 2016

“Yes I can,” Paralympics and the positivity myth

July 7th, 2016


July 7th, 2016

welcome home