I'm absolutely not interested in writing this post today. It's five pm. I've spent the entire day emailing carers back and forth trying to find a way out of the impending crisis. As I've probably said before the Bartay service provider took over providing my carers about five weeks ago. They thought it would be a walk in the park, but I knew we were in for trouble unless they accepted my help and active participation. Unfortunately the public face of Bartay turned out to be a control freak. Every move of mine to help with carers encountered very hostile rejection.
My case manager had origonally recommended Bartay, but after just one disasterous week she suggested I look into self management of my carers - immediately. I did, but the wheels of burocracy (?) turn slowly. By the time I got the go-ahead Bartay had written to me that it was all too hard and giving me the required one month's notice that they were going to withdraw service.
My two experienced carers wanted to stay with me, so I needed just three more. I advertised for carers and was deluged with applicants. I interviewed the six most upbeat, positive-sounding of them and hired three. We spent the last ten days training them as much as possible with just the two experienced carers to train them during their limited number of shifts. We still have some training to do. We will get it done in time, but that means training until the very last shift before Bartay pulls the plug. Only seven days to go, but we will make it.
Then this morning I received the following email from one of the new carers ...
'I have been thinking a lot about working with you. I do feel at the moment I am not qualified enough to help you to the best of my ability, and I am the sort of person that likes to give my best in all situations. Alongside this Andrew also got a job and I have been factoring this into the equation. He will be working late shifts Mon-Fri and some overtime at weekends. This also means I cannot give you the time I could before as I have no one to look after my kids on a tea and bed shifts. Therefore, I believe at this time it would not be fair to you to keep on. This has been a hard decision because I like you a lot ...'
I've been working all day to try to find a way out of this mess. It's going to be an interesting week.
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Luckily I prepared the rest of this post days ago ...
December 13, 1986 - Campbells Creek, just outside Castlemaine, Victoria
Today is exactly two years since I left BHHA and came home to live. Rainbow drove me home to Campbell’s Creek nine months and one day after I was taken by ambulance to Maroondah Hospital. I could no longer walk or talk, chew food to extract the flavour or drink liquids without choking. I couldn't easily join any conversations, chastise or protect my kids, make proper love to Rainbow, and a thousand other things. Hell, I couldn't even wipe my own bum!
Rainbow visited me nearly every day I was in hospital, every weekday anyway. She geared her whole life and our kids' lives around these visits, as she knew how important they were to me. I desperately needed her emotional support and I relied heavily on her to act as a go-between when I had any detailed communications for the staff. I often felt guilty because I'd get her to do much of my dirty work, but I had no choice. Usually she was the only one around who could use the Etran board fluently enough to decipher my involved messages - unfortunately they were messages of complaint to the nurses more often than not.
In a way she had a more difficult time than I did. I only had relatively minor worries about me and my life in hospital to contend with, and my every bodily need was catered for by hordes of nubile young nurses. She had the real worries to cope with, like the worry of raising our two small children without my help. To be within commuting distance of Prince Henry's hospital she'd moved in with my retired mother, so there was the worry of the standard mess our kids would make of her mother-in-law's `clean-as-a-pin' suburban house. She had the worry of having a hospitalized quadriplegic for a husband and the nagging worry that he just mightn’t be the full quid any more.
Because of my stuffed-up emotions I couldn't show her much of my love or appreciation of her. Whenever I spelled out a simple ‘thanks’ or ‘I love you’ to her I'd be swamped with tears of emotion before I was halfway through. Tears that'd grow into anguished sobs as I flashed on my future, our future, and her future with me. So I learned to avoid telling her how valuable she was to me. I did this to lessen the trauma on my own emotions, but she was also going through the worst period of our lives and had a real need for the emotional support which I couldn't lend. For months she suffered my extreme and sudden swings between laughter and sobs then more guffaws, and she had to live with the disconcerting thought that just maybe her future was tied up with an oddball.
I deliberately put a lot of effort into good personal relationships with the nursing staff at both PHH and BHHA to ensure good and better and best care. Rainbow will probably read that and say, ‘Why didn't you put more effort into our relationship, Dan?’ I guess that if I really try I can talk my way out of that one, but on this rare occasion I'll try to be honest about me. She was already committed to me in her heart and her mind. I was her lover - no, I had been her lover –and I was the father of her children. She had decided to hang in there to help me see this through and I took her for granted.
I could have acted the whimpering, disgruntled shit and the staff would have still tolerated me. They would have understood that my lousy situation made me this way. Occasionally I'd get so depressed I'd break into violent sobs, but this actually endeared me more to most nurses because I'd soon pull myself together and face the future with a `brave' smile. From early on after my stroke I've continued my lifelong belief that I'm terrific - too terrific to be fazed by that minor setback for long.
I guess I realized that the nurses weren't anywhere near as committed to me as Rainbow was. In some things in my life I haven't been very nice, but I cultivated my `niceness' with many nurses to ensure that I received the best possible nursing care. Sure, my relationship with Rainbow needed my input too, and it didn't get it.
After I left BHHA we lived back home at Granny Thomas Gully, about two kilometres from Campbells Creek. It was summertime and summer in the bush around there is terrific. From a distance a bluish haze could be seen emanating from the trees. A similar blueness gave the Blue Mountains their name. I think I read once it's the blueness of evaporating eucalyptus oil. The Blue Mountains bush looks more vigorous and deeper blue than the `our' sparse bush. I love our bush. Its gum-trees are a dusty olive-green. In summer it rarely rains, so a layer of dust dulls the greenness that glints from the trees after autumn's downpours.
GTG is nineteen acres completely surrounded by state forest about six kilometres from Castlemaine town. Nineteen acres is, um, a fraction over seven and a half hectares. About half of it had been cleared way back in eighteen hundred and fifty nine and had been farmed for nearly a hundred years. When we brought the property it had been derelict for over twenty-five years - its old weatherboard house had disappeared into locals' fireplaces and rapacious coffee bush had covered every cleared area. We'd decided to do more than just build a home there. Actually, I decided this but we both worked towards it in our different ways. I decided that building our home would not only mean building a house, but also creating our own total environment.
I cleared the coffee bush, put in dams, planted and watered and built and worked to realize our dreams. I'd built a good-sized flat-roofed mud brick garage amongst the trees at one edge of GTG. As soon the building inspector approved it I put in dividing walls, wood and gas stoves, gas lights and fridge, shower, toilet, sink and all the trappings of a basis two-bedroom house so we could live comfortably while I built our dream-home.
Dream-home - visions of a new two-story brick veneer with four bedrooms, billiard room and study, tennis court and swimming pool. Not quite. Our dreams were less grandiose and much more adventurous. We planned a two-storey, two-bedroom, mud brick house with barrel-vaulted mud brick roofs over two small rooms, red-gum tree trunk rounded sections set in polished and sealed dried mud for the kitchen floor, built-in indoor lily ponds and much much more. I built ten metres of creeper-covered arched walkway, a bush-log gazebo that supported prolific passionfruit vines, thirty fruit and nut trees and more. Everything was coming together, but then I had my stroke.
Now the whole place had an untended, down-at-heel, feel about it. For the five months that I'd been at PHH GTG had been deserted, but Rainbow had moved back in when I'd transferred to BHHA. She was flat out raising the kids and spending five or six hours every day visiting me as well as all the difficulties that go with living in the bush without electricity. What with all that and all the worry about me and everything she didn't have the time, the energy or the desire to maintain our dying dream.
We'd put in a special little dam for swimming, with a patch of lawn beside it. In summer this watered lawn was the only cooling green grass within a couple of kilometres, so I'd built our shaded gazebo there. There are masses of honeysuckle and passionfruit on two sides of it and overhead and the deep water hole nearby to attract hordes of birds and mosquitoes as evening began to approach. Magpies, kookaburras, sparrows, the occasional ibis or crane and wrens galore. One hot afternoon I counted fourteen different types of wren darting around and splashing in the cool water. There were probably more types, but by fourteen I couldn't tell new from old.
I'd sit in my wheelchair in the gazebo for hours every day with my typewriter on my lap and the garage we lived in about fifty metres behind me. Often I'd just sit and reflect on the half-completed house that I could see just up the hill a bit. It wasn't huge in area, but its 600mm-thick mud brick walls and its solid tree trunk beams screamed its solidness. It had the unseen solidness of reinforced concrete footings that were more than three times as big as normal and very heavy steel girders hidden in each wall so it'd withstand hurricanes or earthquakes. Neither of these have ever occurred around there, nor were they ever likely too, but after just two years or so I could easily make out the beginnings of a problem which could destroy the house much more slowly but just as effectively.
I'd designed and built a flat-roofed house with no eaves - in fact the roof is inside the walls. I'd intended using a modern clear sealer to protect the walls, but alas, I didn't get that done in time. Storms had worn a lot of the surface smoothness off the bricks and gentler rains had further eroded them. I reckoned if they were given a free hand for about a hundred years they'd wash away the entire walls to return to the very soil they came from. I'd wanted my dream home built by my own hand, but as that was now impossible I was attracted to that gradual 'recycling' idea. I wanted to have the roof removed so the rain could have a fair go at each wall from both sides. Rainbow sensibly vetoed that idea.
In time I came to accept the inevitability of all the deterioration. I saw it as just one more loss in a whole litany of things I'd lost since my stroke. I accepted GTG's on-going deterioration, but it hurt - I'd sit in my wheelchair for hour upon hour `reading', but turning pages was so difficult I'd soon leave the book and just gaze around and think. The interrupted mud brick dream on the hillside was being eroded away by the rain; a dead tree had fallen and crushed a section of the arched walkway; fruit trees were dying from thirst (clogged outlets in my automatic watering system); blackberry bushes were re-sprouting; etc etc. No matter which direction I looked there was deterioration, unkemptness, and heartbreak.
My spirit wasn't faring too well out there in the gazebo and the mosquitoes made sure my physical being didn't do much better. During the day in summer the bush around there is hot and parched - in fact you can smell the dryness. You don't come within a bull's roar of a single mossie, but as soon as the sun gets low whole swarms of the little buggers appear out of nowhere.
The gazebo was cool, moist and shady, so it was alive with mossies from about four every afternoon - it became open season on quads then. Three or four mossies would lob on my face or my bare arms and bare legs and I'd struggle with very little success to dislodge them before they attacked me with their miniature drilling rigs. No sooner would one have had her fill and left me than an even bigger one would take her place. (God - why don't mosquitoes use the Pill?) It's said that if you don't scratch mossie bites they won't itch. Pig's Bum! I didn't scratch them because I couldn't, but I still itched like crazy.
After a few weeks I admitted defeat and arranged for Rainbow to wheel me back inside before mossie snack time. For the next six months I was rarely outside late in the afternoon, so I got to know every ripple of our mud brick walls. In the few hours before dinner each night at least a couple of those little marauders would find a way to get into the garage. They'd head straight for me like ants making a beeline (or ant-line) to a picnic. I'd duck and weave until eventually Rainbow saved me.
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October 22, 1976 - Maldon, Victoria
Swirling red, orange, green, blue, purple and more, but mainly red, swirling red. Red when she's turning slow and it's swirling low, but a rainbow of colour when she swirls faster, higher, and the unnoticed wide pleats of her dress part. The ceiling's swirling around above her head, the dance floor's swirling beneath her feet, and she's swirling in loops through the packed dancers with her long dress swirling.
Her eyes and mind are closed, she's oblivious - the music has become her world. It's filled her mind, her heart and her soul. And she's filled it. Her soft face carries her rapture so rapturous. The dancers parting for her swirling loops envy her rapture and they're taken by her. They're lifted and dance freer with her unknowing example.
Her long black hair swirls to the music. Her long red dress swirls to the music. Her rainbow soul swirls to the music.
October 23, 1975 - Campbell’s Creek township, Victoria
I remember years ago when I met Innocent for the first time. That was the same day I got back from the Northwest. Within a week we were together solid. I reckon that's happened again. I got back from the UK last Saturday and I hitchhiked home from the airport. The last ride I got was a friend going home and she talked me to a bush-dance that night. She reckoned I'd get on well with some girl there, a new friend of hers, someone new in town since I went away.
When we reached home I started my vintage Fiat off her car to charge its battery after all these months. That night I watched the rainbow dancer at the buth dance. She's the new girl and she's here with me now. It's a bit soon to be thinking about us long-term, more than a bit, but things are shaping up OK so far. When we got back from the dance we spent the next day or two in bed, barring some meals, and that's been our favourite place ever since. She's going home tomorrow to her rented farmhouse just ten kilometres from here.
April 5, 1977 - Toledo, Spain
Like many travellers I couldn't get travelling out of my blood after my time overseas last year, so I sold my cottage soon after the New Year to go again. House prices have gone mad the last two or three years and I'd done heaps to fix it up - stuff like wiring and plumbing and fixing the rising damp and carpentry and painting. But there was still the mortgage to pay off and the deposit for nineteen acres in the bush for Rainbow and me in both our names (we're that far gone for each other).
We still had a few thousand left after that stuff, and Rainbow's parents loaned her a couple of thou more, so here we are travelling in luxury in a Kombi camper van. It's her first time overseas and it's not five star hotels and stuff, but it's luxury compared to carrying a backpack and hitching to save your money for food.
We're lying on the bed in the Kombi in Spain, and the Kombi's in a sea of goat music. It's a well-equipped van, homely and warm and lived-in. Its fifteen years old and we bought it on the street outside Australia house in London - once around the block and ‘Yair, we'll take it’.
There must be a shepherd out there somewhere, but we can't make him out. We've got the back of the van open to the warm night, but it's black as Jim Johnson's backside. It's not really as black as that, because the stars are bright above the olive grove we're in. It's as if God scattered diamonds across the heavens and pushed them down so they can nearly be touched.
The starry sky's filling with music. The tinkling's getting closer, more than faint tinkles now. Louder, clearer, but it'll never be really loud and it'll never be really clear, because goats don't shake their bells hard enough, and because the bells are made from softish tin that gives a clunk more than a ring. Musical, yes - Notre Dame clear, no.