Lessons learned from a weekend at home

“The way she took control, she must have been a nurse or school teacher,” my friend and I concluded after a brief encounter with a woman at today’s “Yes” march in Sydney. “Excuse me, excuse me, there’s a wheelchair coming through,” she declared, and like Moses parting the Red Sea, she found us a clear path through the bustling crowd.

“Everyone is incredibly kind,” my friend observed, noting not only people’s willingness to make way but also their eagerness to engage.

“What happened to your leg?” one man asked with genuine curiosity as we waited in the coffee queue. After a brief chat about my circumstances, he wished me all the best for the future.

Similar positive experiences unfolded during my morning commute, Uber rides, and in a trip to pick up groceries from the supermarket.

In stark contrast to a rude bus driver I encountered a few weeks ago, this weekend has been filled with positivity. I recognize that such experiences won’t always be this way, and for those with less “obvious” disabilities, there may be many occasions of encountering insensitivity.

One recurring observation is the disregard people walking and engrossed in their mobile phones have for those around them, often noticing my presence only at the last moment, narrowly avoiding collisions.

I’ve also noticed occasions when people address my wheelchair pushers instead of me. “Hello, I’m down here,” I’ve been tempted to say. This weekend, I’ve insisted on going to the counter to pay, even when offered tableside assistance. “No, no, I need to do it myself,” I’ve asserted when they’ve offered help in that manner.

As I’ve moved around various places, I’ve noticed people offering physical support by extending an arm. This happened when I got a haircut yesterday. I explained to the hairdresser that I preferred doing it myself as he wouldn’t have the strength to support my roughly 70kg body weight. In the last few weeks my ability to make these “transitions” has improved significantly.

My nieces were visiting from Lismore for a “test weekend” before my likely hospital release on Tuesday. All went fairly smoothly, and I managed to lead a relatively “normal” life, which included some awesome Vietnamese takeaway, and a glass of wine on the balcony last night.

They are more accustomed to car transportation, but I prefer public transport. Thus, we used more Ubers this weekend than I usually would. Fortunately, my wheelchair can fold into the trunk of most cars, though I opted for an Uber XL on occasion when it seemed more convenient. One driver mentioned “Uber Assist,” which offers cars for people needing additional support, such as wheelchairs. My goal is to return to using public transport as soon as possible, but knowing taxis and rideshare are always an option.

Thankfully, my apartment block has a lift and there is only one small step to enter and exit. A few weeks ago, I couldn’t use crutches to navigate that step, it was just too much effort, but this weekend it worked reasonably well. I’ll still need a wheelchair ramp if I can’t use the prosthetic leg, and until I gain more confidence.

Among the lessons learned this weekend was the importance of taking my leg all the way to the bedroom with me. Last night, I removed my prosthetic leg in the living room and used my wheelchair to reach the bed. Unfortunately, this blocked the hallway, making it challenging to get up during the night. I had a urine bottle by my bed, which was helpful, but I also realized I needed to bring a water bottle to bed since I couldn’t get up for a drink.

I shared some of the lessons from the weekend with another amputee I’ve become friends with at the hospital. She’s older and a few weeks behind me in her rehabilitation, but expressed her gratitude for hearing about my experiences “This weekend has given me a lot of confidence about returning home,” I told her, noting that I’ll also be learning how to manage my health as a newly diagnosed diabetic.