Category Archives: Life
A woman approached me in the carpark the other day. ‘Do you have the garden with the rockery?’ ‘No it’s my neighbours’, I said with a touch of jealously as it’s a much nicer space that my courtyard. Turns out this other neighbour isn’t so excited about the beautiful rockery. Apparently there was a knocking noise that kept everyone awake. ‘Is there a pump?’ she asked me. Not being privy to the intricacies of rockery plumbing I couldn’t really say. ‘There’s turtles’ was my best contribution to the conversation.
Turns out this knocking that kept everyone awake is in fact a frog. A striped marsh frog to be exact. I opened my living room doors to hear this noise for myself. Every now and then I do hear a ‘clock’ sound. As soon as I shut my doors, I can’t hear a thing.
My neighbour said to me that they might make her fill in the pond and get rid of the frogs. Can they do that? I’m not really sure. Part of my wonders where it ends. Do they make me chop down my plants because they attract birds and they make noises? It’s an odd one. I guess everyone has the right to some peace and quiet. Yet they can have that if they just sleep with the doors closed? The noises from people coming and going from the lobby; or the plumbing in the building are far noisier than any frog.
This of course is coming from the person who when Andrew bought a ticking clock, I had to move it to another room because it was all I could hear!
Still, I vote in favour of the frog. Unfortunately I don’t get a vote – such is the standing of the renter.
I had the pleasure of going with Andrew this evening to the opening of the Fine Lines exhibition. It is held to raise money for Sydney Story Factory, a local community not for profit designed to assist marginalised young people through creative writing programs.
I wish I had a picture of the final framed piece as it’s colours are much richer than the one Andrew submitted for the catalog. Hopefully if he has a chance over the next couple of days to go back he can take a picture of it before it’s gone for good!
‘I’m trying to eat no more than 6 teaspoons of sugar a day’, says I to a colleague. She looks at me as if that isn’t particularly hard. Then I tell her, apparently the average person eats 40 teaspoons a day. Hmm… 6 does now look challenging.
I’d heard somewhere before that when they take fat out of a product, they often replace it with sugar but I have never quite appreciated just how much sugar. When something says 20 grams, that’s quite meaningless to me. After watching That Sugar Film by Australian filmmaker Damon Gameau, it suddenly made sense. By turning those grams into teaspoons, I could start to grasp how much there really was. And in case you are wondering, the answer is 5 teaspoons.
The startling thing about That Sugar Film was here was man who ate the same number of calories; did the same amount of exercise; and avoided soft drink, chocolate and ice cream and still put on weight. At the end of the experiment, he kept eating the same amount of calories, performing the same amount of exercise and he lost weight. So it seems all calories are not created equal.
Just how accustomed I am to food tasting sweet was made obvious when Andrew did the shopping and proclaimed he had bought all items which were low in sugar. Instead of the vanilla bean yoghurt we normally had, he bought the perfectly plain one. It has 1/3 the sugar of the vanilla bean counterpart. We cut up the strawberries and dished out the yoghurt. Neither of us could believe how sour the yoghurt tasted. For me it was only saved by the strawberries and I have quite possibly been turned off yoghurt for life! Andrew – who had asked for extra yoghurt – was pulling faces throughout the whole experience. I feel quite confident that he is not going to want yoghurt again either.
It has taken me quite some time to convince Andrew to even watch That Sugar Film. I get that. A film about eating too much sugar does potentially conjure images of utter boredom with some patchouli smelling vegans who advocate tofu at every meal. It’s quite different really. Damon’s regular breakfast is poached eggs, bacon and avocado so the vegan theory really doesn’t play.
If I had known watching the film would drive Andrew to want to empty the cupboards at 10pm, I may have chosen an alternate viewing time. Still, I’m pleased that I’m not going this alone. There’s nothing worse that deciding you aren’t going to eat chocolate and then finding some in the cupboard and then you go through the process of trying to convince yourself not to eat it! The only sugar i’ve ever been able to pass over at Andrew’s place are jelly beans (evil little creations) and whatever goes in the emergency sugar tub in case of a diabetic low. I never eat what’s in there. I know it’s critical when he goes to that tub that something is inside. Now for Andrew, what’s in that tub is in fact the only high sugar item in the household. The pasta sauce; baked beans; cereal; mayonnaises are all gone.
I’ve never been one for fad diets e.g. only eat bananas, or eat all the meat you want but no carbohydrate. A couple of years ago I lost a few kilos by counting calories. As soon as I stopped counting the calories, the weight went back on. It’s not huge – just a few kilos. However now I find myself at the top of my healthy weight range and with some beautiful clothes that I spent many hours making, which do not fit. So it’s time to try to lose the weight and keep it off. With the help of an app, counting calories can be done. However, counting to 6 is ever easier! So far it’s been 7 days and I think I may have lost 0.5kg. I’m sure I’ve read somewhere that it takes about 4 weeks to make something a habit. So I’ll let you know in another 3 whether I crashed out of this little experiment too early.
Near work I found a man trying to get a cat off the road. He was successful but she went back on and sat down in the middle of the road. She had a collar on and seemed friendly enough so I picked her up off the road and took her to the footpath. When I lofted her I just felt ribs. She was clearly used to being held. I have her a rub under the chin and checked her collar. No tag on collar but noticed she was infested with fleas. I waited until it looked like she was staying off the road and continued to the shop. On my way back to work she was sitting in the middle of the road again. After much deliberation I decided to go back
to work and get a box and walk her to the vet around the corner to see if she had a microchip. She had a desexing tattoo. Someone has owned her at some point. By the time I came back with the box I couldn’t find her. I just keep telling myself at least she’s no longer on the road.
Today Andrew ventured into the heart of Sydney to join others who had gathered to pay tribute to the late Gough Whitlam, former Australian Prime Minister. Whitlam became prime minister when Andrew was about 9 months old. The changes that Whitlam made in the following 3 years in part helped Andrew be there today in his loaned electric wheelchair. Whitlam was behind medicare and without it so much of assistance that Andrew receives for his disability, would be out of reach – a fact not loss on either of us. Today because Whitlam believed in universal health care, Andrew was able to join other like minded souls paying tribute to this giant of Australian politics. He was there right at the front of the crowd near the large screen as Kev Carmody and Paul Kelly sang ‘From Little Things Big Things Grow’. Andrew held up his iphone for just over 6 minutes to video the crowd – which with his muscle condition is not an easy task. He knew that it was a special moment and one he wanted to share with me. What he captured which you don’t get on the official video above are the cheers of the crowd – many of whom were Aboriginal – as they sing about the tall stranger who appeared in the land.
Whenever a public figure dies, there is often praise and remembrance. In the case of Whitlam I’m delighted that people are celebrating the way he changed our country forever. Too often his achievements, his vision and ambition for Australia is overshadowed by his dramatic dismissal from power. No matter what your political persuasion; no matter what your thoughts on the controversies of his time; I think it would be hard to disagree that the changes Whitlam made – and paved the way for – in 3 short years, changed the face of the nation for the next 40 years or more. A truly remarkable man.
Carmen has spoken. What has happened to the blog? I’ve never met Carmen. I’m sure she exists, although I suppose it is vaguely possible she is my father’s imaginary friend. Either way she wants to know, what happened to the blog? Hmm… I think I do too. I could write a post about what’s been happening in my life since April 25, or I could give you a stream of thoughts from just this morning.
The day started with pondering the connections between children’s songs. I know. You all wake up wondering how Old Macdonald links to the Wheels on the Bus song. This for me is a sure sign that work has infected my brain temporarily. It’s not an infection that you need the serious antibiotics to be rid of. More like when you have a cold and your voice gets gravely and people notice. It’s there, it’s different and you just have to wait for it to go away.
My boss has asked me for an inspiring presentation for Wednesday. I know that inspiration is not going to come from Old Macdonald – possibly one of the most annoying children’s songs of all time. If I were free to choose any topic I like I’m sure that I could unearth some inspiration somewhere. Sadly, I am not. I need to make a quality framework sound inspiring. Galumph and humph to that. The strange thing is that at times I have been inspired. Um… scratch that. Not inspired… fired up, emotional and passionate. If I can find that, perhaps I can meet his challenge.
Meanwhile my foot is starting to groan with pins and needles. On top of my foot (besides my leg) is my cat. (times 2). They have actually lost weight. Saffron is now a cool 5.5kg and Licorice an even 6 but with both pancaked on top of my crossed leg, my poor left foot is…. VIBRATING AND SINGING… oh that would the iPad with Andrew wanting to FaceTime.
I has unearthed the iPad from under fat cats, blankets and legs.
‘What are you doing?’
‘Writing a blog post?’
‘Oh. That would the first of the year?’ [Cheeky grin]
‘Nope, the first since April 25th if you must know.’
‘And what are you doing?’
‘Reading about the legacy of pragmatism in the element of design’
Suddenly Quality Frameworks have an instantaneous appeal. They are far more lush and enticing than a 25 page orgy of academia on the construct of ideas in art. He did tell me the title of the article; I can’t remember it exactly but if I were to call it the ‘permutation and liberation of design from post modernism’ it would make just as much sense as the real title.
He read me a paragraph. It reminds me of sentences created from word salad fridge magnets, except not nearly as much fun. Certainly a long way from the TED talk I watched this morning which is promoted as ‘lyrical origami’. Only after watching the video could I truly appreciate the accuracy of the description of ‘lyrical origami’. A truly delightful, witty and mellifluous talk. Here it is for you to enjoy for yourself: http://www.ted.com/talks/rives_on_4_a_m
Most of the time I would agree that to focus on the ability of people who have a disability is a good thing. Yet, there are times when the disability really has to be acknowledged for the hideous and limiting thing that it is.
Losing more function can be frightening, depressing, soul-destroying, frustrating, not to mention bloody impractical! At the end of several weeks which included all of those things, there ARE some things to be thankful for.
1) I have an amazing partner who despite losing the last remnants of his ‘walking’ and ‘standing’, only managed to lose his sense of humour for a day here and there. Without that wit and comic relief, I’m not sure where we would be right now.
2) We are fortunate to have supportive family, friends and workmates.
3) There are some bloody awesome Norweigans out there who made the molift hoist equipment.
4) It doesn’t matter how stressed you become, the cats still give you cuddles. Sometimes two at a time.
I wrote the blog piece below 2 years ago and not much has changed. I’m still climbing on chairs to reclaim items out of reach. The latest of which was a milk jug. A square milk jug. Now, square may be aesthetically pleasing but trust me, it’s not a particularly functional milk jug! If he’s going to ask me to climb on things it could at least be for a fully operating piece of equipment… no?
Andrew and I recently celebrated our 2 year anniversary. It got me thinking about dating disability style. If someone said to me, I’m thinking about going out with a guy in a wheelchair, what advice would I give them? This is my somewhat tongue in cheek list with a few serious thoughts thrown in.
Don’t be afraid of heights
You know those things in the ceiling which emit light? Well, it may usually be men who fix them but if you’re dating a guy in a wheelchair, let me tell you now that you will be climbing on that ladder with light bulb in hand. You will also be putting and retrieving things from the tops of cupboards; hanging pictures; removing curtain rods; repairing blinds. Get used to being the ‘tallest’ person in your relationship and develop a love of ladders and chairs – you will need it.
While not height-related, another ‘man job’ you may have to do is putting air in the car tyres. I know, my mother would be horrified. She always says, ‘I don’t do garbage and I don’t do tyres – they’re you’re father’s jobs’. What I’ve learnt is that tyres are really not that tedious; the hardest part is finding a service station with a working air guage.
Check your figures
Before you get very excited and launch yourself at your man with a hug, check the weight bearing load of his wheelchair. Sadly some of them aren’t designed for you to sit in his lap, so perfecting the lean over hug is a must.
If you don’t know why he’s in a wheelchair, ask him. A person with spinal injury will have different needs to someone with muscular dystrophy (Andrew has something very similar to muscular dystrophy). If you’re afraid to ask, or he’s hesitant to discuss, personally, I’d run for the hills. Someone who is able to freely talk about their disability and its impact on their life has probably reached a greater level of acceptance than one for whom it is a touchy subject.
Rediscover the romance of simple things
Sometimes when it is not possible to do whatever you want, whatever you do becomes just that bit more special. I still remember the day that Andrew picked me up from work and casually said – do you want takeaway? We drove to a Thai place, picked up some food and then he said, why don’t we go eat it by the water? We found a place to park which had a nice view of the bay. It wasn’t until he pulled out plates and cutlery that it twigged he’d planned a ‘car picnic’ at dusk all along.
I know I just said that you get to enjoy the simple things as some others are off limits but this point is about questioning the impossible. There are many outdoor physical activities which are certainly possible, especially if your partner has upper body strength. (I missed out on the nice torso muscles :-( ). Sometimes you may find it’s you being challenged and not him.
A while ago I bought Andrew a surprise gift of a Harley Davidson ride (as pillion). Upon giving him the gift he said he wasn’t sure whether his lateral muscles were strong enough to hold on. I rang the company back. They suggested swapping it for a trike ride. Great. Now I had to go with him! I’m not sure who was more nervous that day – him or me!
Grow a wicked sense of humour
If you don’t already have a slightly odd sense of humour, dating disability style will sure help to develop one. I worked for 10 years with people who are blind or have low vision and now with children who are deaf or hearing impaired. One things I’ve found is that most people with a disability have a remarkable sense of humour. I do recall one guy I worked with who, if placed in a humour competition with a termite nest, the nest would win hands down… but he was an exception.
Here’s two examples of Andrew’s dark sense of humour.
While shopping one day, Andrew was staring at all the motorbikes. He loved riding motorbikes pre-muscular dystrophy (hence my aforementioned gift). He turned to me and said:
I love to roll past these guys and say to them: ‘I used to ride one of those’. The look on their face is priceless.
If you think that’s a little dark, well, the second example is worse. He once told me that he was bored at home and chatting on a disability forum. He posted a message on the forum saying that The Gap (a cliff face in Sydney known as a suicide hot spot) was discriminating against those in wheelchairs as there was no ramp.
Thankfully someone else in the forum had an equally wicked sense of humour and wrote back:
I have found a suitable ‘dispatch’ point for you in the Blue Mountains. Should you wish to kill yourself, you’ll have to drive 2 hours west.
My last tip would seem fairly obvious in any relationship however I’m including it anyway. Lack of walking doesn’t equate to lack of fun. In the two years I’ve had with Andrew, 90% of the time, I’ve had a ball! Who could ask for more than that?
Not quite sure why this thought has suddenly popped into Andrew’s head, I just respond: ‘Yes, that’s the dime that you still have right?’
‘Yeah. Well, yesterday I was at the vending machine, and it was the anniversary of his death yesterday and the machine wouldn’t take my coin. I thought it was a New Zealand 10 cents, but when I picked it up to look, it was an American quarter.’
In Australia we often find New Zealand 10s and 20 cent coins but American ones are not common at all. It didn’t surprise me when Andrew told me he’d kept the coin. But the morning’s lesson didn’t end there. Andrew proceeded to tell me how American quarters were once made largely of silver but that became too expensive in the 60s and they then used copper in the centre. He told me that I had to check out the coin’s edge where you could clearly see the copper centre. Indeed you can and there is a large portion of a Wikipedia page dedicated to explaining how the Washington Quarter – a silver coin – came not be made of Silver but rather the “clad composition with Flanagan reverse.” (Sounds like it could equally be an olympic diving move to me)
I imagine that some people may visit Andrew’s house and wonder why there is a quarter stuck to the wall, just as I first asked why there was a dime stuck to the bed head. Yet I will know and remember the quiet moment when Andrew recalled his brother. It’s much like the moment I share with mum each year on Anzac day when we compare the state of polish on our shoes as a way of remembering my grandfather. The coins and the shoes are both obscure yet personal references that only family would understand and when Andrew shares this with me, it’s a lovely moment of feeling like family to him.