I live in a Housing Department house, welfare housing. That brings images of a sort of ghetto of cheap houses with straggly grass in the yard and an air of poorness. I know that all welfare housing isn't like that and that in reality only a small minority is, but it's still what comes to mind.
This house is nothing like that. It's an affluent, large house in an estate of affluent large houses, not one of which is government-owned. You'd never know my house is Housing Department.
A dozen years ago I was living in one of a row of small housing department flats in Castlemaine with the then baby Jez and her mum Esther. They were unfenced flats on a main road and the residents were all elderly or definite welfare cases. It was hardly the place for twenty seven year old Esther or for a young child, so I wrote a well-reasoned applying for a larger house.
I'm pretty good with words, I'm not averse to using my 'condition' to pull at heartstrings and most people think I'm so badly-off in life I deserve help. Esther and I were told to choose any block of land in or around Castlemaine, then this house was purpose-built to my specific needs. An architect was engaged to see that those needs were met in the best possible way.
Everything is designed to make it easy for me to move around in my big wheelchair. Outside there's largeish concrete areas and concrete paths. I mentioned the electronic door openers in my last post. There are no steps anywhere. All the doorways and halls are much wider than normal and the rooms are extra spacious.
It's slightly possible that I over-stated to the architect my body's aversion to cold weather, and hot. He put in extra insulation, large windows to catch the winter sun but really wide eaves to shade them in summer, air-conditioning, ceiling fans and a better-than-normal heater.
My kids have bedrooms here and there's another bedroom/spare room to store my manual wheelchair, the ceiling hoist, the standing machine and the other paraphenalia that come with being a quad. It's my home. I think the idea of living in collective quad accomodation or a nursing home is so unappealing to me partly because it's so easy living here.
Uh-oh, it's time to stop this. An email just came in from my editor with Ellydd Gate and pages of comments, changes she has made and suggested changes that I should make. I've been waiting on this for two months or more. Some real writing to do at last!
But first ...
I set up an autoresponder with a simple form asking you, my enthralled readers, to enter your email address so you can receive automatic alerts of new posts. However, I'm buggered if I can work out how to put that form onto this blog page. Unless you're one of my few Facebook Friends you'll just have to check back here from time to time. Now that I have Ellydd Gate to distract me again I'm cutting down to one post a week - every Saturday.
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April 14, 1984 - PHH, Melbourne
They've just wheeled in a guy from Post Op and he looks like something out of a horror movie. There's a fresh scar from ear to ear and his hair's been shaven in a wide track. The whole track's been mercurochromed a bright red and his head's being held shut by about seven thousand shiny metal staples.
April 15, 1984 - PHH, Melbourne
The room's all settled apart from Mr Something-opolous. They're all quiet and still with the land of nod beckoning. A student nurse is seeing to Mr Something-opolous now. He's her last one. She's having all sorts of trouble with him - she just can't get him comfortable. She rolls him onto his left side and he groans like buggery.
‘What's the matter, Mr Something-opolous?’
He just keeps it up loud till she moves him. She rolls him back onto his back and he groans like buggery.
‘What's the matter, Mr Something-opolous?’
He just keeps it up loud till she moves him. She again rolls him onto his left side, but he still groans like buggery.
‘What's the matter, Mr Something-opolous?’
He never answers her questions, because he doesn't know English any more. He had a stroke at home last week and when they found him his English was gone. He's telling her in Greek what's wrong, but she can't speak Greek. It wouldn't make any difference if she could though, because even his kids don't know what he's saying now. Ever since his stroke he's been using a Greek dialect hitherto unknown to mortal man.
The student nurse has been driven to loud groans of her own, groans of frustration, and she rushes out to ask someone what's wrong. It's unlikely that whoever else is on will know, because Mr Something-opolous groans every night and frequently during the day - almost every time a nurse lays a hand on him, in fact.
It seems very few nurses have been told what’s wrong with him or, much more to the point, very few of them remember being told what’s wrong with him. In the one in ten chance that they do remember they'll explain to the student nurse that he fell when he had his stroke. Then they'll tell her that the fall broke his pelvis and that he's not to be rolled around the bed under any circumstances. The slightest movement is agony for him.
Nurses must have the worst memories in the world. Maybe it's because they're under-staffed and over-worked.
Nearly every time a nurse gives me my morning wash she's called to away to give another nurse a hand and about a quarter of the time she'll forget to come back to me for up to an hour. About three times a day they'll leave me with a urinal bottle between my legs for a couple of minutes so I can pee in private and it's quite normal for them to forget to come back for the bottle in fifteen or fifty minutes or more.
And I see this forgetfulness happening with all the other guys too.
May 1, 1984 - PHH, Melbourne
I'm half-lying in bed in the daytime, the quiet part of the day after lunch with the others dozing or reading in bed, except the guy in his dressing gown. He's sitting at the table in the centre of the room reading the paper. The sign on my bed-head says `Nil by mouth' and I'm being fed all day through a `Noso-Gastric' tube that goes up my nose and down my throat to my stomach. All day drip, drip, drip, a thick brown liquid slowly dripping into me. It's my fluid intake too, but I don't reckon it's enough. I'm always thirsty, always craving a drink, eyeing off my water jug and willing it into me. It doesn't work, though.
Here I lie absolutely dying for a drink. I can't move as much as a finger to get one and I can't speak to tell them I'm dying of thirst and torment. Here I lie with `Nil by mouth' written big above me. There's never a drop of water gone from the shiny steel jug on my cabinet, but every morning a girl replaces it with a fresh one.
That's just the tip of my iceberg of sufferings caused or exacerbated by my voice, by its absence. F'r instance, I spasm now when I cough, which is frequently with the bloody trache in my throat. As part of that same coughing/spasming business I clamp my teeth hard and fast and every now and then my tongue's in the way. It hurts like hell at the time. I get that salty blood taste with chunks out of the side of my tongue, but there's no way I can tell them.
Here's another f'r instance, which has already been mentioned before in this little whinge - the trache's a curse, a blight on my life. It's there to let me breathe because, I guess, my windpipe must have collapsed shut when the stroke stopped my muscles working (I wouldn't swear this's the correct story) but it's not a nose.
A nose has all those fine hairs to filter the air, but a trache's just a hollow plastic tube that let's all the airborne dust and junk through. Your lungs, my lungs in this case, my lungs get aggravated and try to cough it out, but they're weak now, or maybe it's my diaphragm's weak, and they can't budge it.
Hell, what are you moaning about? You're a bloody quadriplegic now - A quad! You're lucky to have even weak muscles.
Anyway - when my lungs are gunked up like this they have to be suctioned. A soft plastic tube is inserted in my trache and pushed down until my jerks and coughs say its hit my lungs, then the suction is turned on for a second or two to suck out the build-up of gunk.
This wonderful procedure has been necessary every waking hour since the trache was put in, and a couple of times every night. Suctioning makes my whole body jerk and jump like with an electric shock. Often the pain that accompanied having the inside of my lungs prodded brings on my sobbing tears and a few times it's made my lungs bleed and I cough red for a while.
So I cough and cough and cough and have almighty spasming coughs, but I can't call for help and I can't move to press the buzzer. When I cough like this my legs jerk and spasm until they're between the bed rails and then every time I cough I spasm my shins against them - skin off, blood, pain, tears and sometimes at night two hours till the nurses do their rounds. Just three nights ago they started lining my bedrails with pillows each night and now my long, long hours in the darkened ward have become more bearable.
The speech therapist should be here soon. She pads in softly on her soft rubber soles and her smile reaches my bed before she's halfway here. She's so quiet the guy at the table barely looks up and the other two regular readers don't even hear her. I look very, very, very much as if I'm a vegie, so Rainbow, Speechy and the physio are just about the only ones who treat me like I'm normal inside. I’m a vegie on the outside, but those three believe I'll improve - Rainbow most of all. But then she was the one who kept telling me things even when my eyes told her I wasn't there just then. I wasn't there, but maybe it was sinking in anyway.
I’m so vegie to the eye that just yesterday the dickwit of a neurosurgeon who does the consulting on this ward told Rainbow that I’m as good as decerebrate, (A vegie with nothing up top) and that she should put me in a nursing home and get on with her life.
He's not the Neuro who saved my life, but he's the one we're looking to for hope `n stuff. He's not what you'd call a hands-on type of guy. I left ICU about two or three weeks ago I think, and though the young ward resident keeps an eye on me this Neuro's now my specialist. He's the guy who knows me inside and out (in theory) and it's he who calls the shots, but he hasn't touched me once.
He strides onto the ward with his entourage of student doctors in tow and goes from patient to patient asking how they're feeling today, any problems. He always stops well back from the bed with his learners. He only very occasionally and very reluctantly goes up close, actually touching the patient to check the stitches and the shiny metal staples - the staples that hold a few skulls together from his saw.
Then he comes to me. They all do. He stops six feet from my bed and they stop behind him. He discusses my situation with them, calling me The Vegie in everything but plain English. No use him asking how I'm going - I'm decerebrate, remember - so he asks any nurse in sight `Any problems here, nurse?’ then he strides away satisfied with his entourage in tow.
Like I said before, he told Rainbow that I'm well and truly stuffed for all time. She was here when he did his rounds so he took her aside and told her that I'd never walk or talk or progress beyond my present level.
‘I'm sorry, Rainbow, but your husband's decerebrate - ah - and he always will be. If you and your children want a decent life you've got no option but to let him be cared for permanently in a Nursing Home.’
I guess there's no point in you reading any more of this account, because it's being written by a Vegie.
There's a lot I can't remember about a lot of things. Rainbow could clear so much up if I asked her, but I haven't got any way to ask her, have I? God, it's frustrating! Until just yesterday I didn't know why I was still alive - the last I remember before those times in ICU with the covers right up they were going to cut me up for spare parts.
Yesterday Rainbow told me about it, just to have something to talk about at the time. Apparently they didn't have the expertise to `harvest' my organs there so they rushed me to a larger hospital that did - this hospital, Prince Henry’s Hospital (PHH). They rushed me here with the siren screaming to get me here fresh, and with Rainbow sitting not too happy by my side. They must have rung ahead saying who and what I was and why I was dying, because a homeward Neuro was told as he walked out through Casualty. He hung around to have a professional nosey. I don't know how, but the moment he saw me he knew I wasn't for Spares and he had me answering questions with my eyes before the coma came on hard. He put off going home to save my life in ICU, and I haven't got a problem with that.
He looked after me in ICU at first, but I don't remember him clearly. I sort of remember answering his questions when the ambulance brought me here, but I can't put a face to him. I don't know for sure if he was the one I imagined was a butcher attacking me and I don't even know his name! I just know from Rainbow that the neuro who sees me now is someone different.
Speechy's just come in. Here she comes padding softly on her soft rubber soles and her smile's reaching me before she's halfway here. Like always, she's so quiet the guy at the table barely looks up and the other two readers don't even hear her.
‘Hello, Speechy. What's up?’ I'm thinking at her, because I can see she's quietly excited, the bearer of good news. She shows me a pamphlet on Morse code.
‘This'll be your saviour. You can get out of your head with it. As long as you're trapped in there unable to communicate people will keep thinking you can't think. Even if they know better, even if they know you're not away with the fairies, they'll still have the gravest doubts about you from time to time. It's only natural for them to be like that, but this'll make them know you're OK. It's wonderful! Let's get you learning it right away and then-’
She stops, excitement fading, because I'm looking away at nothing in particular. I'm resolutely keeping my gaze from her, indicating that I disagree with her. God, here's another one of those incredibly frustrating times when I can see I'm being misunderstood and painted black because of it, and there's not a thing I can do about it. She thinks I'm being contrary or lazy; that I'm refusing her help, or that I'm refusing to make the effort to learn, so she's getting hurt and angry.
It's Rainbow, come early because she has to leave early. Speechy tells her the Morse idea and that I won't have a bar of it for some reason. True to form Rainbow saves the day. She has this unconscious knack of doing the obvious with me now - at least I reckon it's the obvious thing to do. It's the thing everyone should do, but which few people do do. Few people look at my situation from my point of view or think much about my specific limitations when devising solutions for me.
She reminds Speechy I can't make any sounds at all, let alone rapid stuff like `Dot dot dah dah dot, dah dah, dah dot dah' and on and on. Then she asks Speechy does anyone know Morse code to understand me anyway. No one she knows, she says; no one I know; and probably no one Speechy knows either.
May 4, 1984 - PHH, Melbourne The room's settled for the night. It gets peaceful and easy once visiting time's over - just quiet music from my tape player, rustling newspapers every now and then and low voices closing the day.
Everyone's in bed except the old guy, because a nurse took him to the toilet before. Everyone's lying down, two sleeping, two reading and me just lying here like normal.
I can see everything now I can turn my head from side to side again - only very slowly, mind you - and I'm starting to get it up off the pillow with effort - just an inch so far - and, though it doesn't help me see more things, I can blink my eyelids.
A nurse comes into the room slowly with the old guy by the arm, pausing between each step for his shuffling. He had his seven hundred and thirty fourth minor stroke last week and he looks like number seven hundred and thirty five will be the one that does him in. I bet the nurses sweat blood every time he strains on the toilet, just in case Seven Thirty Five strikes him there and then, in mid-motion on the crapper.
My bed covers are brightly coloured like the billowy material on the ceiling and walls. A Gypsy couple is dancing wildly and four or five Gypsy men are lazing around on the ground. She's your stereotype black-haired Gypsy beauty - a wild spirit with fire in her eyes and laughter in her heart. And her man's exactly what you'd expect him to be. Excitement explodes from their whirling bodies; passion explodes from their whirling bodies - -
Click! The nurse turns off my music and that brings me back - Seven Thirty Five's missed another chance, because the old guy's reached his bed alive one more time. The nurse turns off the lights with a quiet `goodnight' to the wakeful, but where have the Gypsies gone? - I think there were Gypsies here - - I can't remember - -
May 28, 1973 - Whittlesea, Victoria I put in about seven more years as a computer programmer after I got back from the west then I chucked in work to try my hand at cattle farming. Innocent and I sold our house in Melbourne and our five hectares of land up in the hills and sunk the lot into stud cattle. Murray Greys. We don’t know yet that a drought is going to hit next summer, and it’ll hit us hard. We’ll have to hand-feed the cattle for the next two years just to keep them alive. By then we won’t have any money to buy more feed. We’ll have to sell them just skin and bones in the middle of a drought.
If we knew today that we’re going to be wiped out in two years we could sell up before summer. We could get out of this impending disaster unscathed. Maybe even our marriage would survive. But life doesn’t work that way, does it? Thank God it doesn’t, says I. Life would be the pits if we always knew what’s around the next corner.
Right now I'm in the front paddock racking my brains for how the cattle get out, all thirty stud Murray Grey cows and calves and one big Murray Grey bull. They were on the road again this morning when I got up, but I'm buggered if I know how. We rented this property and put our every dollar into cattle and one attraction was all the new fences - that and the great feed in the paddocks.
Except for the big strainers at the corners of the paddocks the fence posts are all smooth, round, light pine. With the eight strands of wire they make a fine fence, so why have the cattle been out nearly every morning this last week? I'm stumped. I put padlocks on all the gates yesterday, so there can't be someone letting them out.
Innocent was here just now and she's as baffled as me. She's gone back to the house to make a cuppa, ‘Don't be long, Danny.’ Sad's panging my heart, ‘Pang. Pang.’ We've been good together the last five years, the first three or four were good anyway. It's not like it's all that bad yet, but everything's starting to unravel between us. We can both see the writing on the wall.
It's like when you've been on a roller coaster for a while - there's been a good few highs and lows and now it's chugging along flat and safe even though it's way up high. Then it comes to that almighty drop and for an instant everything cuts out for you. Your mind pauses, no more than an eye-blink, then it says ‘Shiiiiiiiiiiit.’ and the roller coaster rushes down so fast it pushes your heart up into your throat.
We're trundling along at the top right now. Our coaster's called Marriage, and it's turned onto the track to that drop up ahead, but what can we do? We can't reach the brake from here in the front seat, and anyway we don't even know what it looks like, so we're both pretending the drop isn't there. I think we know it's called Divorce, but we don't know it enough yet.
‘Pang. Pang.’ I reckon I can actually hear the sadness panging in my heart. ‘Pang. Pang.’
I'm feeling nostalgic for our old times, because today's our fourth wedding anniversary and because I think it's close to our last- I can see she'll be my ex-wife soon.
‘Pang. Pang.’ Sadness is panging in my heart. ‘Pang. Pang.’
‘Twang. Twang.’ Twang? Twang??? There it is again, and poetry be buggered, it's not my heart. It's the fence. Hell, what's that frigging bull doing? He's forced his bloody great head under the bottom wire and he's trying to lift the whole fence up. He's straining - straining - straining, lifting with his neck and all those nice smooth posts are just popping out of the ground.
He's just standing there, not a care in the world. He's probably chewing his bloody cud - if bulls have cuds. Not a care in the world, but he's got the weight of the whole fence on him, the whole lot, everything, the frigging posts and the star pickets and the wire and all. The wire's angling up over his shoulders from one corner and back down to the other corner
He's just standing there waiting, holding the fence high and waiting, and all the bloody cows and calves are walking out onto the roadway. Now they're all on the roadside eating the grass out there, so he's going out there himself. The bottom wire drags along his back, up over his rump - dragging scrapping dragging scrapping, but he can't feel a thing. The taut wire drags off him and the whole frigging fence drops back into place, with the posts dropping into their holes like before.
The traffic's not so bad at this time of day, but its best I move before there's hamburger meat everywhere. I sprint to the cattle-yards and grab my whacker, then back to the road and belt hell out of the cows. The whacker's really good - it's just a bit of black polythene pipe, maybe a metre long. It doesn't hurt them through their tough hides, but it makes a noisy whaaack. That's what gets them moving.
I herd the cows up the road and into the driveway and start them running down the drive then I go back for the bull. He's big and he's strong, but he's docile for a bull. I don't mean he's docile docile. I skirt his solid head and belt his rump as hard as I can over and over again.
Cruelty? Think about this: those fence wires are strained so tight you could play a tune on them, and that's when they run straight from end to end. They'd be stretched so tight once he lifted them, just so tight. If his hide was in the least bit soft he'd be cut to the bone or if he had the normal animal's feeling to pain he'd be bellowing blue murder, but not him. I've got his papers - his mum was a cement truck and his dad was a Sherman tank. If I whack him hard enough and if I whack him often enough he'll go anywhere I want him to go - provided he hasn't got anything better to do.
So here I am shouting and cursing and whacking. Eventually he ambles towards the driveway. Right now I hate the big bastard, because I know he doesn't really give a stuff about me and my piddly plastic pipe - if he wanted he could just turn and scare the shit out of me. He's probably moving just to be with his harem.
We get to the driveway and I whack his side to turn him in, but he just stops. The drive's gravel, so it's not like there's good grass in there. He's just showing me who's boss. I lay into him like there's no tomorrow, but he's too disdainful to even react a quiver. I slip past him and dash for the distant house shouting ‘Get the bloody gun, Innocent. I'm gunna shoot the bastard.’
I tear into the house a million miles an hour, passing Innocent tearing out.
‘You're being stupid again, Danny.’
I don't know where she's going, but it's definitely not to the bull, because she's heading down the back as fast as she can go. I saw a small box in her hand, but she hasn't got the rifle.
It's in the wardrobe where it always is, but I can't find the frigging bullets. They should be up top in here, but they're not to be seen. They're not in the bedroom drawers. They're not on the fridge. They're not in the kitchen drawers. They're n- that bitch. That absolute bitch. She's got them. That's what I saw in her hand - she's got the box of bullets. She's got it and she's half a mile away by now.
Oh, she'll stop running about now. She'll stop and she'll turn for home and she'll stroll back nice as pie, because she knows it's over and I'll be feeling stupid about my antics - it only takes a minute for me to start to act sensibly again.
Like with the big vintage Fiat last week. It's in the large shed out back, the one with the sliding doors. When they’re open you can see everything from the kitchen. Itself in there with the four other old cars I’ve picked up this year. It was in pretty poor condition when I got it. I took it to bits and put it in boxes, and the body parts I covered from the rain. It followed me from house to house like that. When we moved here I fixed up the worn bits, which was all of them, and then I put it back together.
Last week I finally got the new pistons, (I've had the new bearings and everything else for months), so I threw the motor together and dropped it into the car. ‘Dropped it into the car’ is the sort of thing we guys say ever so casually to fool you we know what we're doing. So is `I threw the motor together'.
Actually, I didn't just drop the motor in, because try as I might it wouldn't fit into place - the clutch plate or something was stopping it. I had the motor on a block-and-tackle and I must have lifted it out and back in a dozen times. I wasn't very happy with it, so eventually I did the only intelligent thing left - I beat shit out of the car with some of that whacker stuff. It didn't work though; the motor still wouldn't click in, so I thought ‘It's my own damn fault’.
I figured it was my fault because I hadn't really belted it - the metal body on those old cars is thick as hell, and the Fiat's still undercoat grey, so I'd known a poly pipe couldn't hurt it. I went tearing outside and got a big bit of timber and I started to charge back in to give the car what-for.
‘Phone, Danny. They said it's urgent.’ Innocent shouted out the window.
Shit. What now? I drop the wood and go into the kitchen. She's holding the phone out to me, but she accidentally drops the receiver. Then it starts - you know how it goes. You both stoop down fast to get it before they hang up, and in her rush she knocks you off balance and as you tumble you knock the phone further away. You scrabble to the lead and pull it to you, but she's grabbed it just then and there's more time wasted there. At long last you're standing with it in your hand.
‘Hello? - Hello?? - Ah, shit. They've hung up.’
She's just standing there looking out the window, looking through the shed doors to the Fiat, and without even sounding interested, without even turning to look at me, she asks ever so innocently ‘Have I wasted enough time yet?’
I put the phone down carefully and quietly and I go out to the shed carefully and quietly, stepping over the dropped timber as I go. I try the motor carefully and quietly and it clicks in first time - naturally. All the time I'm muttering to myself, carefully and quietly, ‘You smartarse bitch, Innocent.’ but under it all I'm so glad for what she did.