The cold has been even more of a problem than expected. A small radiant heater was obtained from Kmart but the first time it was turned on it emitted eye-watering levels of some chemical fumes so it was returned immediately. There is a big, old, Vulcan space heater under a sheet of plastic but there is almost no point in firing it up while every window and door in the apartment is open to keep the dust and fumes as low as possible. That 1970’s vintage heating unit needs to stripped and cleaned of all the dust and grease that we get in tiny apartment kitchens but Im too ill.
The cold has been brutal. It is very different keeping warm while you are well and keeping warm when you have serious illness and handicaps. I look like a big pile of clothes with eyes when I sit at the desk in the cold. Sleep at night is rare as the cheap little bed is uncomfortable and the mattress makes me ache. Single beds are horrible things when you are big and have a lot of injured joints. The quilt will not stay on even though it is a double. At the last place the carers helped me get a double bed as a matter of urgency but it didnt fit in here and was thrown out. Another inherent problem with The Tenancy Rental Act is that the short tenancy lengths mean we can lose hard earned furniture and medical supports almost as soon as we save enough to get them. As well as that changing care from a non-government organization to the NDIS meant that type of information was lost and some of us are literally stripped of a decade of hard-won understanding. It has been a plunging fall from a safe and comfortable cared-existence into a still-growing and brutal poverty at the hands of the government and corporate housing institution.
Despite it all there are still some ink drawings. Robber fly powered by a one hundred year old Bowden Wire Engine. The feet have a little work required to finish
The endless paperwork required to fight the bigots at Family and Community Services as well as the Administrative Tribunal has sapped the strength I might have had for art and to work in the journal although their more compassionate and capable workmates seem to have taken over and made them stop. In my mind I had always assumed the capable and compassionate were in the greater numbers but recent events had me wondering where they were hiding!
The water has had a disgusting after-taste and seems to be more chlorine than the water in the swimming pools ever was. At times it tastes and smells a lot like the sewage fumes that issue from the waste handling plant up the road. The property managers at Budgewoi were driven into a fury when the Weblight Studio Journal commented on the foul tap water there and heralded it’s purchase of a large filter jar. My theory suggests people in low income housing are subjected to things like lead and other chemicals because their homes are rarely inspected properly when they are built and if they are inspected it is by inspectors who recognize a blind eye is required to get the best financial returns for the investors. We might note the little ongoing farce of the flammable cladding where no one, including the inspectors who were blind to it, was ever held responsible! A lot of low income people die from stomach cancers and similar things. How much is the chemicals in the cheap furniture, cleaning products, cabinets and plumbing will not be told because the statisticians have developed eyes that don’t see uncomfortable truths. The science is at your finger tips if you know which website to look at though.
There is a lot to get through this time so it might be best to make two entries. It is important to further discuss the position with the NDIS. It looks like a rant but this is how it is. After a few years of not being well enough to even dress regularly things like small maintenance jobs grow and become urgent. If you keep good quality but old things like the Vulcan radiator you are better served than if you buy the declining quality of the newer models but there is no escaping the fact that it takes some work.
Last year NDIS approved quite a good package of supports for me. Aged and Disability Support Services had been looking after me for almost a decade but after moving all the people I had become accustomed to into different jobs they simply turned up one day with a photocopied list of care providers. They handed the list to me and left after pointing out one carer they liked. I handed the plan to that carer because otherwise there was nobody to assist me.
During the year various things became evident. The apartment needed a spruce up as it is what can only be called “squalid”. It is messy and dusty and the kitchen grease has invaded everything. The carers, Just Better Care, sent a very-capable representative of their cleaning contractors to assess the apartment’s and my needs. She spoke to me in depth and wandered about taking notes and photographing with her tablet. She left to analyze the information and then sent a proposal some time later.
The proposal included moving all my stuff so the apartment was more easily cleaned. It included supplying workers to assist to throw out the piles of stuff I was hoarding. The proposal included two workers for two hours a week. It was clear that the contractors thought I could be dealt with as though I was a retiree who merely needed to clean the decks so I could sit and watch television and drink tea without all those piles of grubby art equipment getting in the way.
Grown with love in Barbara’s garden
It was a sobering exposure to how little respect or understanding well-intentioned carers have for my own vision of myself as a seriously ill but high-end creative artist. They join the government, housing industry and most of the medical and mental health fraternity on that score! They would remove the tools and supplies that I had suffered privation and poverty to collect. They would shuffle the canvases and pack them in piles where they would be torn and ruined by unnecessary handling. They would interfere with the big artworks where they had been set up to be worked on over months. Two people would visit my apartment for two hours every week and try to generate enough to do in a 30sq m apartment where there isn’t even space for a sofa or lounge chair. They would force me to be awake when I was ill, dressed when I was struggling to find energy for a shower and polite when I was being emotionally crushed by the need to fight the anxiety I suffer when people are inside my safe zone. My mouth snapped shut and no amount of reshuffling the possibilities in my mind saw me creating an understanding with them. No cleaning. The contractors were determined and capable in a normal setting but too dangerous and clumsy to be allowed to handle the little of my creative output that had survived the last couple of moves from rental to rental.
ADSSI Home Living had been supplying me with a carer and transport for years previously. Over time the carer became that person who assisted me with a little cleaning, took me shopping if I needed to go to main shops like Bunnings or the various malls or office services. It was the same person for years at a time and they were motivated and had enough experience in my fields to sit and enjoy social lunches while we were out. They developed a rapport with me over years. In that time I was in the apartment at Budgewoi where I had a garage set-up as part of a studio for large works and chemical storage. Even the cleaning chemicals from the kitchen were there and for many years the carer would go out and get them before reverting to non-toxic things like vinegar. There was a clean room for drawing. The big back yard was being used to record the species of spiders photographically and I was building an archive of images of local commercial buildings to make drawings from. This was all enabled by the carers from ADSSI who took me into the North Entrance Peninsula national park and hunted wildflowers and spiders for me to photograph. We went to beaches and shorelines hunting sea snails and weed and birds. They had lunches with me at art cafes and helped me get my works hung.
The change to the new commercial care providers under NDIS was interesting. There was no regular carer. You may not understand this but each time we meet new people we are subjected to intense scrutiny and questioning to see where we fit in their hierarchy of acquaintances. That meant each time I went out to do some shopping for nuts and bolts or paint and canvas I was subjected to a testing regime of social comparisons as people tried to work out where I fit in the scheme of things. It was emotionally grueling. They were testing me to see if I fitted somewhere into the community where their kids went to school and they had barbecues and cars and jobs and friends they knew. I didnt. I don’t. I spent ten years engaging in brutal physical effort to attend university and another twenty years scrimping and saving and slowly making myself as an artist while my life was constantly attacked by property managers and bigots. I studied mysticism and philosophy and the occult and I cannot even imagine what it is like to be limited to a small world. Except that I can because my world is walled by poverty and disability while theirs is willingly engaged as a safe place for their kids. My mind was broken by hardship and violence and rebuilt and broken again.
Some of the new carers refused to eat with me. They suggested we shop and they could earn their wage and go. Some of them seemed to recoil at my presence and I wondered just how much of that was due to the slander being spread by the property managers at Budgewoi. It wasn’t safe to be cared for by a local as they might not appear to be having a problem with me but would sabotage me in subtle ways. Several literally sneered at me and refused to keep services to me. They wouldn’t take me out for photography without complaining how they would be better used washing some cripple’s ass. My life was already plummeting into a dark place where all the work to create the business was dissolving and now every second carer treated me like a disease.
Some of them were good. Excellent. All of them were excellent if I hadn’t been me and needing some service they saw as outside their community duty. The problem was that I never knew which one would turn up and, short of training one, there was nobody to bounce ideas off or take me anywhere. It is not possible to hold together a deeply emotional and spiritually creative effort when you are in pain and ill and the person you are forced to share the space with just wants to get paid and escape!
They were mighty and unflappable when they carried me back and forth to the NSW Civil and Administrative Tribunal while the property managers and lawn contractor flailed away at me with nobody limiting their venom. The carers were there for me and supported me and kept me on my feet when I didnt think there was any chance of remaining so. They retained their good humor and even bravery when that lawyer was using the sheriffs to harass me and we thought it might lead to physical violence. That carer did not leave my side!
Finally the year trickled out. The NDIS closed that plan and did a review of my suitability to continue as their client. You can safely assume this was is a terrifying time for a man suffering complex PTSD with anxiety. A man who had just fought for a year to prevent being evicted by property managers who had been attacking him for several years. An eviction that would have led to his death.
NDIS assessors rang and were as calming and supportive as can be while they renegotiated the new plan. The old plan still had a huge grant left on it because I had been unable to work out how to bend the new carers to understand and support me enough to create a service. I am unusual in this. Most people fit within behavior patterns and are easily serviced. That “ease” of providing service took years to build! The providers are very good at that. This is not a criticism of the ability of anyone to be carers or providers. They are simply unable to get their minds and their services around the things that I am trying to do from way back here. I am a high functioning workaholic behind a wall of pain and poverty and broken emotional and psychic landscape. I would be very happy in a barn among the rats and venomous snakes if it was good work space and people left me alone. I hesitate to offer it but I am also an empath and being around people with unschooled emotions and psychic bursts can be constant and harrowing intrusion.
When NDIS handed me the new plan I didnt want to go back to exactly the same thing. Too much of what I needed from “quality of life” was missing from the package so I hesitated. I tried to find that elusive carer who had a mind like mine. It took me two days to get into the first website as it demanded a mobile phone as a security measure and I dont use one. By the time I cracked a couple of websites where people hire individual carers it was night and nobody on the sites could help me. My NBN internet, and by extension my landline, collapsed and stopped working for around 32 hours. I had no services and no phone and as I dont have a TV I was sitting in a frozen room with nothing to do. On top of that I had a cruel stomach ache that was starting to fight its way out from beneath the blanket of pain relief. That’s bad!
Over the next few hours that stomach ache became the center of my universe. The chronic fatigue and the damaged heart sap energy. The cold saps energy. The pain in the belly was now sapping energy as well but unlike the feeling of dead weight and a kind of debilitating mistiness the stomach ache feels like some animal is ripping away at my innards and sucking the marrow from my bones. It became urgent to start the process of finding what was happening. I rang the care provider from the last plan and begged for transport to my doctor. They refused to do it unless they sighted the plan and possibly signed a contract. I don’t want to do that without assuring there are real changes. Assurances of real changes will not do it. It cost $150 to taxi to the doctor. He didn’t say he was concerned but we had a long conversation about making a document in case I collapse and need end of life care. In case I am a vege. I instructed him to use whatever the domesticated equal of a shotgun placed under the chin and fired upwards will be. He told me to write it down and put it on the fridge so the ambulance people can see it. The taxi driver was kind enough to wait and the doctor put everyone else aside so I could go straight in.
Next afternoon the radiologist took the doctor’s referral and gave me a CT scan of my gubbly. (Belly) I think they all looked away as I left. That was Friday. On Saturday morning the doctor’s office left me a phone message asking me to call on Monday. The actual scans came on a CD while the notes were emailed to the doctor. I looked at the CD and it looks like my belly is full of rocks. I dont know what that means but if I wasn’t such a leathery old coot I might think about some anxious babbling now that its Sunday night. I am betting on an aggressive stomach cancer.
My neighbor has a fireplace and it seems like he must have put the chimney hard against the door here. The smoke is strong in here. I actually love the smell of smoke. It reminds of those sleepy nights camped under the stars telling stories but it gives me asthma and make me smell like a smoker as well! I dont believe it! Now he is burning some kind of rubber. I hate living in suburbia
Im too ill to work my way through the stuff I need to do to negotiate my old carers or some parts of a new one so I am alone with no support now!
There is a painting on the easel and making it has been an enjoyable experience for a change so after one more quick note I might stop this and go do that
A quick unpaid plug for the filter jug being used in my kitchen. It is a Southern Cross Pottery filter jar. I think they are from Royal Doulton. It has been filtering my water for several years. It isnt a free flow filter. It is a jug and the water is “sweet”. Water from this thing makes better cups of tea than tap or tank. I am sensitive to all sorts of chemicals and some of these low cost apartments have disgusting water quality. This thing filters at a very high level. It removes everything. I dont do advertisements in the the text of a story nor do I take favors or money. I write about things I use and other people may find useful