Month: February 2016

15 February 2016

Like most children, I felt like I had to wait an eternity for Christmas to roll around. Like most adults, I feel like a year is nothing – they are all flying past at an increasing rate. This idea was a mystery to me for years until my mate, Kara, explained it to me in the clearest possible way. She said to me, when you were four years old and you had to wait a year for the next Christmas to come, you were waiting a quarter of the time you had been on this planet – 25% of my lifetime waiting! Whereas now, I’m only waiting 1/50th of my life. Seen from the other direction, if I had to wait 25% of my life for something to happen now, I would be waiting 12 years; if I were four and I only had to wait 1/50th of my life, I would only have to wait about 29 days.

What that says to me (apart from the fact that Kara is a genius) is that time is about perspective.

I’m sure you’ve felt it. Waiting for test results and it seems like 3 days equals 3 lifetimes. Being immersed in a task you love and time becomes irrelevant – it could be 3 days or 3 minutes but it doesn’t matter, time is simultaneously moving slow and fast. Our ideas of time are challenged by circumstance.

My circumstance has changed. Things I learned to do when I was young, like getting dressed, I’ve had to learn over again to accommodate changes. I would be quite sad if I spent a lot of time thinking about how much time it takes to get my shoes on or how little time it takes to flip out of the chair. Minutes are both an eternity and a flash and I am forever revising my estimates for getting ready to leave the house. By my latest reckoning, everything takes 1.5 times more time than I think it will.

Lucky for me, I’ve had an excellent time teacher for the past 9 years. I used to joke with Steve that his perception of time is different to everyone else. If he said he would be ready to leave the house in 10 minutes, I would ask “10 Steve minutes or 10 normal people minutes”. I learned not to let this frustrate me, but to let him be himself – there should always be time for that, shouldn’t there?

The secret to Steve’s successful ignorance of time can be found in the idea of ‘flow’. He has this amazing ability to engage in an activity to the point where time ceases to matter and I have a lot to learn about that (thanks to my focus on time, he describes the period of his life pre-me as ‘before time mattered’). Of course, this refers to tasks he enjoys or can at least lose himself in. It does not refer to untangling cords, a task that, by his perception takes about 20 years (our ‘normal people’ perception would find that about 5 minutes have passed). Mihaly Csikszentmihalyi came up with the term ‘flow’ and has a good TED talk about it. For me, he just could have called it “Be Like Steve”.

Since the debacle, I have discovered deep wells of patience I did not know I had. I have uncovered my own ways of finding enjoyment in the menial. I am learning to minimise the frustrating tasks (often by asking for help) and maximise the joyful ones. I can lose a day in a good book, or writing a letter to a friend, or taking my time in the kitchen to make something tasty. The challenge is to find moments in the menial that I can take pleasure in – small victories, noticeable progress, mental or physical fulfillment – and stretch them. Stretch them like crazy.

 

 

 

6 February 2016

Several years ago, Steve took me to his all time favourite music festival in southeast Queensland. We were to spend 10 days camping with friends immersed in music, yoga, african dance, sustainability talks, etc and we looked forward to it for weeks. As it happened, it rained … and rained. Each morning I would lie there on the floor of the tent, unzip the door and peek out. Each morning, I would witness something new floating past on a current of rainwater. In spite of the relentless rain, we made some happy memories there that I am unlikely to forget. It is with great pride that I tell you I was the thumb wrestling champion of the beer tent. I was able to use my extensive experience in setting up tents the wrong way to help others get theirs right. And we danced. My goodness, did we dance.

One of my fondest memories is dancing to the music of a group called Shooglenifty. They are from Scotland and their music is a bit … traditional celtic blended with electronica? dance? We were under a marquee with mud up past our ankles wearing boots we could hardly lift. The man playing fiddle had eyes like Rasputin. Steve, Wendy, Brigid and me – all hopping around like mad and laughing. It was wonderful.

When we think of paraplegia (and I say ‘we’ because it is definitely how I used to understand it to work), we imagine the person’s legs are inert. But let me tell you, they are not. They still have nerves and muscles that work, but they are no longer centrally controlled. In my particular case, I have spasms that usually originate in my abdomen and my legs follow with something like a slow stretch. The spasms started out as innocuous – no pain, not really in the way, not even noticeable to anyone else. With time, my abdomen has gotten stronger and so have the spasms. I will put my foot somewhere and it will stubbornly move somewhere else. I will try to put my foot somewhere and it will stubbornly dig in to stay put.

Being me, I decided to name them – not the spasms, but my feet. At first I thought to call them something ineffective and annoying, like George W. Funny, but over time, I might start to hate them. No one needs a body part they hate. Instead, I call them “Shug” and “Lefty”. First, because together they take me back to a fond memory of dancing in the mud with my friends and second, because the two words individually mean something. In the south, when we call someone “shug” it is short for ‘sugar’. As a nickname, it has a charming effect – both for the person called that and for the person saying it. And ‘lefty’ makes me think of a 1920’s gangster. I can’t say it and stay frustrated.

Here is a clip of Shooglenifty’s music from the you tubes. I dare you to listen to it and not have a little jig on the spot.

Now, I dream of dancing. I don’t often dream of running or even walking – I dream of listening to a band and hopping around like mad and laughing. I don’t know if my dreams will ever catch up with reality, but I hope not. As my mate, Lex, says I like having one place where I will always be able to dance.