The street I live in was farmland ten years ago. The houses are all set well back from the street on large blocks of land and none of them have front fences.
He's got two little dogs and they always acknowledge us. They yap like crazy from the back yard and if they're loose out the front they race up to Bruno barking and snarling, but always stop short of his lead. He doesn't like them.
Bruno was barking wildly, getting closer with every step. He was right behind the first yappie and bowled it over. And then ... And then he pulled up and jogged back to me nice as pie, taking up his normal position beside the wheelchair and walking on with me as if nothing had happened.
I have a team of six carers who each do a few of my short shifts throughout the week. By and large these shifts are the same, step by step, day after day and pretty much year after year. My breakfast shifts for instance ... follow exactly the same steps to get me out of bed and dressed; out to the kitchen for a cup of coffee and breakfast: some more drinks before the toilet and the bathroom; then clean up the kitchen and put the dog on the lead. The breakfast shifts are so much the same that one carer does virtually all of it without saying a word. She says hello when she arrives. but she isn't really a morning person and doesn't feel like talking after that until the shift is almost over.
Every now and then one or another of my carers will do something dumb, something they've done right a hundred times before. Often, after I've made a lighthearted, sarcastic comment, they will say 'You should write a book about all the stupid things we do.' No thanks, thinks I, 'I have carers in my life too much already. That's by necessity, but the last thing I want is to spend all that time needed to write a whole book about you.'
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June 8, 1984 - PHH, Melbourne
I'm in a wheelchair at the table. I've got a newspaper at page seventeen in front of me, but I'm not reading it, not now. I was reading it before, but not now. Daydreaming is what I’ve been doing. Reflecting.
In the controlled atmosphere here it isn't easy to follow the seasons out there in the real world, but winter's creeping into my awareness. I wasn't very interested in the world outside my window when I was first brought here, not for quite a while after that. In fact, my only real clue that it was autumn was when Rainbow stuck some rust-brown leaves onto my wall back in April. I'm alert and interested now and I can't help noticing the boulevard below my window changing with the season.
Winter's here and from five storeys up I look down at stark, wet plane trees lining the wide road. Driving rain beats against the traffic by day and the lonely late-night trams are beaten by soggy sheets of newspaper blown from the dark gutters. The wide avenue glistens wet and cold under the stark street lamps at night and I lie in the darkness staring down through the small gap at the side of my covered window.
My body-temperature control centre was clobbered during my stroke, so I’m still overheating at night, but not anywhere near as bad as when I first hit Neuro. For the first month or two I'd be naked under a single sheet with a fan going full blast just a metre away and a frigid autumn/winter gale blowing through my open window, and all that didn't do a lot more than slow my perspiration somewhat. I thought my corner of the large room was just slightly overheated, but whenever any nurse came to spend more than a few seconds with me she'd don a red cape or regulation red cardigan - or both.
Physio works with me every weekday and at these times she lets me know her very definite ideas on just about everything. I often disagree with her, but she ignores my point of view by the simple method of not getting my board. This mightn't seem so bad to anyone who is able to easily say what they want when they want, but to me it's criminal. I'm already deprived of my everyday means of communications and she's effectively reducing me to the mental equivalent of a pre-speech baby. I need to be allowed to contribute to conversations just like Joe Blow.
I can imagine many patients becoming involved in a love/hate relationship with her. They'd love her for her positive results with them, but they'd hate her for the coaxing, cajoling, harassing and bullying she uses to get those results. I don't hate her, but then again I don't love her either. As an ex-distance runner (very ex now) I thrive on long-term hard work. In the runner's perverted manner I actually look forward to having done the work - not necessarily to doing it, but to having done it.
They get me up and shower me then they put me in the wheelchair every day now, with the food drip on a pole attached to the chair. I'm showered and dressed and in the chair by ten, then it's down to OT and the physio department until lunch, Rainbow most days till four or so, and then it's dinnertime. I just sit around while everyone eats, because I'm `eating' by drops from dawn to dusk and for a few hours after that, too.
Good old Perky's Sister's on afternoon shift and she was in here before helping with the meals. She's got her heart in the right place, and what a place to be - near those perky little breasts of hers.
She's always doing little things to help me and the other patients. Last night she rang a friend for me, someone who didn't know I'm here. Tonight she wheeled me to the near-empty table and placed the paper in front of me while everyone else was eating in their beds. She had to feed an old guy, so she popped over occasionally to turn the pages. I'd read to page seventeen before she'd finished feeding him.
After that she went to have her own tea and no nurses have been in here since. I suppose I could get the page turned now if I wanted, because the first few visitors have dribbled in early. I could work like hell with my head and my eyes and eventually I'd attract one of them away from their sickie and get through to them what I wanted. But in all honesty I simply can't be stuffed with all that effort and carry-on. I'm OK just watching and thinking, because here's another lot arriving - more people to watch.
I don't get many visitors at night, which is fine by me, because I like being alone and just watching then. Just about everyone else has evening visitors. Rainbow's home with the kids by this time, getting their tea and bed and stuff. She always comes during the day and never at night - never-ever at night, because she likes to be there for the kids, and that's how it should be.
Mum was coming in every night at first, but it was running her thin, worried and tired and thin. I'm not going to cash in my chips any more, not like it seemed at first. I'm out of the woods, as they say, so she's cut back to one or two nights a week.
October 7, 1974 - Melbourne, Victoria
I don't see a lot of Innocent since the farm went under. As luck would have it we put our every cent into it then a bad drought stuffed everything. (It's a lie to say everything went into the farm, because with the typical Danny eye to the future we bought a tiny cottage at Campbell’s Creek, on the outskirts of Castlemaine.) We sort of separated when the farm died. I moved to our cottage and she rented an apartment in Melbourne.
She's beside me in the Fiat right now and we're on our way to Younger Sister's wedding. It's about a hundred and fifty kilometres from home to the church in the eastern suburbs and I picked Innocent up on the way.
We're nearly there now - just two or three kilometres more to the church. It's a Catholic Church of course, because he's from Chile. His mates are all hardworking Chileans and all so conservative, just like him. All clean-shaven and short neat hair.
Younger Sister wrote on my invitation `Do something a bit different', so yesterday I got one of those new Afro perms, big and curly and a bit thingo with my beard. It's not all that outrageous, even though you don't see many except in magazines, but the Chileans will think it's far out. Not that they'd ever use far out. They'd probably think that's hippy talk, just like they think I'm a hippy.
Once the farm was sold we were in a bad way, spending money hand over fist to paddock a few cows here and a few cows there. Being very nearly broke didn't help. We had to sell everything - we'd paid about two grand each for stud cows two years before, but in the drought they only brought a hundred a head.
We figured that was a good time to start going our separate ways, so I moved into our little miner's cottage to fix it up and Innocent moved to her apartment for full-time Uni. (She's a demon for hard study - she's doing Third year and some catch-up subjects this year and she's going on next year for Honours.)
I can't afford to work on the cottage too much, because the dole's the only money I get, at least it was the dole I got at first. I soon got bored at home, especially once I finished restoring the old Fiat and getting it on the road at last, so this year I went back to school for something to do. I get the student allowance now instead of the dole, but it's the same amount nearly.
I stick out like a sore thumb at school - a twenty seven-year-old vintage-driving longhaired bearded hippy-type at a conservative country high school. You've got to give the principal full marks for taking me with no fuss considering its conservatism.
Innocent spends the weekend with me every month or two. Neither of us has ever said the word `divorce', but we both know that's just a matter of time. We're comfortable the way things are, for now. She's seeing some guy I don't ask about, unless she needs to talk about him, and I'm a bit involved with someone else.
Mum and Dad sold the family home when they broke up three or four years ago and both moved to new areas. Younger Sister had just started year twelve and she didn’t want to change schools. By that time I was buying my first house nearby, so she moved in with me. We used to go to a big trash and treasure market at times. She got her old treadle Singer there, and that's where my old clock came from. They were fifteen dollars each at the same stall, but when I bought the clock the guy gave her the machine for five dollars - and he delivered it.
That was back before Innocent and I got married. She used to stay at my place sometimes after she and I had been out. One night after a few too many to drink we got carried away getting ready for bed and I guess we were rather noisy at it on the bedroom carpet. Younger Sister chided me for that the next day, because we woke her up, ‘And that stuff isn't, um, you two should wait till you're married.’
Don't people change? A couple of years later she and her guy stayed with us at the farm occasionally, and they were always at it. They're like rabbits! Good for them, I say, but don't people cha-
‘Wake up, Danny. That's the church back there.’
Shit! I was a million miles away.
It's a divided highway, so I have to drive about half a kilometre more before I can turn, and I've got to wait forever for a break in the traffic. Swish, swish, swish - every few seconds another car swishes by on the wet road. It was raining just a while ago. Not a heavy downpour or anything, so the bitumen's still a bit greasy. It’s definitely not the time to cut into the oncoming traffic. Eventually it's clear to do a u-turn and we drive back to the church.
Of course, there's no gap in the median strip there, so we have to go back another half kilometre. We turn and get into the service road and burn back. I saw a crowd out front before, but the bridal cars weren't there. I remember when Innocent and I were married we used two old Rover ca-
Christ, I didn't think we were there yet. I slam on the brakes, Slam!!! I literally stand on them and on the clutch pedal too; both legs stiff and my bum nearly lifted off the seat. The left side brakes do a bear trap imitation - you know, like steel jaws snapping shut - and I swear the right side brakes are asleep, because the Fiat slews off the greasy road and up over the gutter and the footpath.
Wedding guests dive out of the way and the car gouges its left tyres about three metres down into the church lawn. That stops it fast. Now here's Innocent for you - she opens her door seriously and carefully, she stands up on the wide running board seriously and carefully, and she pauses, surveying beyond the guests seriously and carefully. After the longest five seconds in the world she steps down like royalty alighting to a red carpet and turns her head, pronouncing to me clearly ‘This is a suitable spot to leave the car’, then she walks over to the priest seriously and carefully to placate him.
I'm left with this problem - I can't just leave the Fiat here on the edge of the church lawn, but its narrow vintage tyres have gouged deep, so if I move it now the gouge will stand out even more. One good thing about driving an old car though, a really old car, is that people cut you a fair bit of slack. The priest might even think it's for after the wedding, so I'll just leave it where it is.
I climb out, assured that my suit will give me Innocent's dignity, but a ripple of sniggers and laughter greets me, and I fear the priest won't take us as seriously as Innocent wants. Mindful of Younger Sister's written plea to do something a bit different I've had my Afro and beard dyed green, haven't I?
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I was prompted to write this blog about living with quadriplegic. Since then I've been stumbling along putting in a bit of this and a bit of that. I know this post has been very light on with the daily living stuff, but that's because I don't really know what you ever-so-cherished readers want. Would it interest you to know more about the sorts of people who become my carers? (eg. At present I have one who is, truly, a pole dancer and one who is, truly, a part-time model. In the past I have had, truly, a 'casual' prostitute and ...)
Please help me. Please click on the comments box below and tell me what you want in this blog, and equally as important if there's anything I'm putting in that you don't want in it.