A day in my life

 The national broadcaster was calling for submissions from people with disabilities of all kinds. Our voices were to be featured on International Day of People With Disability, December 3.

Well I sent them a pitch but they didn't pick me so I'm posting here instead. Today, lets celebrate the resilience, flexibility, grit and creative thinking of people with every kind of disability.

 

I wake to the dog standing over me, barking and doing the pee dance. At this point I have to make a quick calculation: to go barefoot and let him out or to put on my shoes and ankle braces. The walking is easier and safer with shoes on but how long can he wait? and is my patience at a level that will handle a puddle in the lounge room? Sometimes I resent having to weigh these things and wish shoes and braces were not such an integral part of my mobility.

After showering I perch on the edge of my bed to dry and dress. Must I sit or is it a habit I developed after some injury? I’m not sure anymore. With my feet forever enclosed, tinea is a hazard so I take particular care to dry between my toes. I peer at the pressure ulcer on my foot, a complication of my condition. Is it bigger? smaller? Is that the redness of infection? Is it weeping or bleeding? It has been there, growing and shrinking, for a couple of years now while my care providers try different strategies to try to get it to heal. We make some adjustment to a shoe or orthotic and wait to see what happens. It’s slow and emotionally laborious. In my worst moments I imagine the day that amputation becomes my only option but for now I do what I can to stay off my feet, visit the podiatrist every week, watch it obsessively and come to the realisation that I must become the only expert I trust completely.

This morning, I am alone in the house so I can’t ask for a steadying arm down the front steps. I’ll need to take the route across the back yard, painstakingly looking for small irregularities in the level of the soil, trying to avoid every little bump or divot that could cause that could cause me to stumble, things that most people wouldn’t even notice. I can usually remember where the hazards are which is a good thing if the grass is getting long and I can’t see them. The short walk feels long and treacherous, heaven help me if I forget anything.

I need to buy milk for work and start to calculate the best place to get it. The supermarket near work has a large carpark out the front but there are a few steps to negotiate, the service station near work has replaced steps with a very short and very steep ramp which could actually be more difficult to negotiate than steps. If I think about it early enough in my trip, I can stop at a larger petrol station where the access is almost flat and the doors open automatically. I might even be able to leave my walking stick in the car.

This particular workplace has parking a short, easy walk away and a flat entrance. I spend a lot of the day at a desk and the biggest challenge is usually when I get involved in a standing conversation. It doesn’t take long to get tired and need a sit down but I’m loath to walk away.

If I’m not at some kind of appointment after work, I might do some shopping or go out for coffee. Again, I must think about how to do these things: if I do a big shop will someone be home to help me get everything inside? If I go out for a meal or a coffee, where will I park? How much walking will I do? Are there trip hazards? Is it raining or dark? Do I need to navigate stairs? Do I need to carry anything? I usually have a walking stick in one hand and sometimes use the other hand to steady myself. It means there are no hands left for bags, hand holding or gifts and my balance isn’t good enough to walk with an umbrella so I like to consider all of this before I find myself in a situation I can’t handle.

Most days I cook and eat at home.  I used to enjoy cooking but these days my feet hurt more the longer I stand so I just want to cook the fastest thing, tidy up and sit down.

I spend the evening sitting down: studying, reading or watching TV. My shoes are on the floor next to me and I hope that the hound is settled. Shoes, braces and hoisting myself from the couch is complicated. I don’t want to open the door ten times a night for a dog who wants to bark at a bat.

The hound watches, alert as I prepare for bed but when I take off my shoes, he understands that it is really time to relax and his contented groans speak for us both as we sink into our beds, relaxed at last.