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Wednesday 1 August 2018

Rumour Milling The Gossip


Gossip can make you feel like you are all alone

I get it, I really do. You have a concern and you want to share it, but creating an item of gossip, shared with even the most altruistic desire to show concern, is never the right thing to do.


I have lived under the cloud of rumour and gossip for the longest time. Stories told about me, and I know many of them and know there are more besides, are often the least reflective of who I am or what I am doing. Mostly they are just the bizarre fruits of overactive imaginations and ultimately benign, but any rumour can be used to inflict untold emotional harm in the hands of the wrong 3rd person.

Nobody's life is without challenge or vexation so if you have a concern about someone's life then the kindest way to deal with that concern is to start a conversation with that person. Once hearsay, innuendo, rumour and gossip are begun there is no calling it back. There is no "sorry" that disarms this practice and makes it ok.

Nine years ago, at the beginning of my single parent journey in 2009, I was assisting some primary school friends in the organisation of a primary school reunion. These planning sessions took place over a few drinks and a meal at a local club. We were a mixed bunch who formed a renewed bond and I was quite frankly reveling in the camaraderie and the very new sense of having a group I belonged to. At one of these sessions I decided to go to the bar and get a shout and one of the guys offered to assist me, as there were about 7 of us. This guy and I shared a laugh as we ordered and waited. As you can imagine we had a lot of shared experiences and nearly a lifetime to catch up on after 30 years. We got the drinks back to our party and thought nothing more of it and after we had pooled our efforts to date, discussed next moves and deciding on the next meet up as we continued to bring about a reunion of a class of around 120 people, men and women, who had dispersed, changed names, moved on, and even died, in the 30 years since we shared a playground. The very next evening I received a phone call, a screaming diatribe from my ex, from whom I was separated. The rumour was that I was planning a weekend away with an old school friend and this rumour had traveled the world and had come from a reliable source in the UK. When you consider I lived in the suburbs of an outer Sydney area in Australia, this is a remarkable feat. I was confused because it was so strange, such that the ensuing screaming at me about my supposed plans and my betrayals and perfidies hammered me, for how long I am unsure. Nothing I said was acceptable as I was just the worst person in the world and warranted the abuse and then some ... all because of a rumour, an item of gossip that circumnavigated the globe in a single day.

Now it is a good idea to come clean. I was, at this stage, being treated for a swag of mental illness diagnoses. Amongst these was Major Depressive Disorder, Adjustment Disorder, Generalised Anxiety Disorder and PTSD. Combating the ridiculous notions of clandestine lurkers on the periphery of a snapshot of a single event was not even a foot note of a notion of mine I needed to deal with, but there I was being screamed at over something that wasn't true, slumped, sobbing, in a corner of a room trying to communicate a truth that was never going to be heard, engulfed in an abuse scenario I was desperately trying to leave behind me.

The strangest thing about a marriage break up, especially one where one party, me,  is consumed with mental health issues, is that no one asked me my story. No one asked me what happened or why. By the time I was well enough to articulate my side, the story was already out, repeated, remarked upon, discussed in wide circles, expanded on, but not substantiated from my viewpoint at all. I realised that at such a late date my side was never going to be heard without an entrenched bias opposing it, so I stayed silent, hurt by the partisan treatment I had already been subject to. Family were already treating me like the person in the wrong. I had left a "perfectly respectable marriage" and I had "ruined everybodies' lives". No one even wanted to know that my leaving was the result of a choice ... Leave ... or Die ...

I ended up living with the idea that, in some quarters, a relative that was divorcing was worse than that same person being dead, a notion reinforced by the Catholic teachings of my youth even though I had long rejected those teachings. No one said this to me, but it was the idea, the imagining that grew inside my disordered brain. I had grown past my suicidal thoughts, healed at least that much, but deep down there was a self imposed knowledge that others thought I was better off dead. The fact that so few of my relatives communicated with me, included me in their life events, seemed to reinforce my belief.

There have been many instances of unsubstantiated rumour and items of gossip that have been brought to my attention. The affairs I had and that never happened, not during my marriage and not even in the 14 months after my marriage ended. I did begin another relationship, but that began in October 2010, long after my separation and declaration that I would never go back.

Now we come to the present day. Rumours still circle, gossip still circulates and the harm still impacts me. The latest being that my household is disordered and I am used and abused. Accusations being made that my loved ones are "dole bludgers". The fact is that my household is a co-operation of disabilities, mental illness, chronic health conditions, love and support. We are not perfect and we do have occasional bouts of disharmony, but we are trying to support each other in a society and a community that devalues us, relegates us to a position of supplicant and abuses us based on bias and mass media blame washing. We are ill supported by agencies marketed as being for that purpose. We are let down by Human Services that are anything but humane. We are cast in a light that paints us unfairly, but we are enduring and we are fighting and I, even if it has to be one melt down at a time, am not going to let these bastards win.

If you, dear reader, think gossip is harmless, then consider why you are not taking it to the person concerned? Think on the repercussions of what you say being expanded upon, suppositions added, innuendo applied and then brought to the person concerned, either from a place of consideration or, worst case scenario, from a place of abuse. How could your contribution to the rumour mill be used? Are you going to be responsible for the fall out? the harm?

Please consider rumour and gossip as a tool in the hands of a bully. Do not give up your power of concern and allow it to be used against people you care about. Please do opt for an open conversation with the person and not about a person.

We are encouraged to ask "RU OK?"
not
"Is he/she/they ok? because I heard ..."
 


Rumours and gossip isolate us from the truth

Monday 9 July 2018

Being a Carer under NDIS

Until last week I had a face to face support worker meeting over coffee. It was a small respite where I could share the frustrations of dealing with systems, supports and agencies. Then I received an email ...


"My Team Leader has directed that I am not allowed to travel to see Carers. This means that I can not meet with you face to face unless you are willing to drive to ..." the office 30km away.


I was gutted. I allowed myself to sit with this bombshell for a few hours, then mustering a gentle acceptance I replied:

"Dear PrimarySupportWorker

Travelling to your office, whilst fighting for this NDIS, which is making DisabledPensioner more and more symptomatic, is not feasible.

I kinda knew this would come about and we talked about it, if you remember, about supports getting thin on the ground. I am grateful to be given the heads up, which is more than I have been afforded before.

It saddens me, but it is what it is, and it will be whittled away further sometime down the track.

Respite has become a dirty word …

Kind regards ..."


My support worker responded kindly and I knew she was not happy about this change in her ability to provide supports as was her previous mode, but still it sat with me ill that this had come to pass. I knew I had to put forward my feelings at this time, and after allowing a day to stew on the mode of my more fulsome response and to do justice to what I felt was another slight to which Carers, and those in their care, are heir to.

"Dear PrimarySupportWorker

I am done. Over and Over I get promises of support only to have it withdrawn. PHaMs, One Door, Just Better Care, Ability Links, ADHC, Carers ACT, NDIS … it doesn’t matter how much I rely on it, or look forward to it, or struggle to make it, me being me. I will not allow myself to be set up for one more let down.

Please do share this with whomever you would like, as will I, paraphrased and adjusted for anonymity, because there is now one more carer barely making it, who cares for 3 with disabilities and mental health conditions, and who is herself a mental health consumer, who is going without.

I was promised support, via PHaMs, through the NDIS access process for ALL FOUR OF US, but no, only one of us made it, and that was only through my own grit, not because I had support. Two years of this farcical process is going to leave me broken, more broken, but that’s ok, apparently.

ADHC Started me off with their put down that my youngest was “1 IQ point not retarded enough for supports”

There was also Just Better Care that told a disabled pensioner in my care that “if he was going to insist on having a complex medical condition then he should just F#*K off back to Sydney where those sort of things are catered to”

Then we have the whole NDIS decision that Epilepsy is a medical condition and not a disability, so that my disabled pensioner and I, his carer, are locked in a battle with their Senior Lawyer at the Administrative Appeals Tribunal to get some supports.

We also have Ability Links, who in their font of benevolence, have decided that asking for a letter stating when supports were accessed and the type of supports given is tantamount to defrauding the NDIS and have refused to comply with even this basic request.

Let’s not forget Carers ACT who promised, and got a quote for, some home care services, then proceeded to bill me and sent statements and reminders month after month with no service rendered. Even with me informing them that no service was rendered each time a financial document arrived in my in box.
(post note: Carers ACT have now addressed the administrative issue that allowed this to happen)

PHaMs became One Door and I was dropped like a stone. No one contacted me, just neglect. Now this?

It was said that “No one will be worse off under the NDIS. Even if the new disability services might be different; CYP accessing the NDIS should be able FACT to achieve the same or similar outcomes”
https://www.facs.nsw.gov.au/__data/assets/file/0007/436678/Department-of-Family-and-Community_NDIS-Myth-Busters.pdf

This was, is, and ever will be, now that services are being whittled down to inaccessible, a crock, a mockery of all that carers go through and have to put up with in a compassionless, dollar centric farce of a system. Are we not worth a little more consideration?
http://www.carersaustralia.com.au/about-carers/statistics/

I will soldier on, of course I will, it is what carers do … until, of course, they burn out, self-harm or die of despair at their own hand. The statistic will bear out my statements so I am unafraid of sounding too dramatic, or like some hysterical scaremonger. The statistics of our surviving our lot is frightening, but that is ok, probably because we do it out of love, our value is negligible.
https://www.australianageingagenda.com.au/2014/03/05/suicide-risk-among-carers-highlighted/

I hope you can appreciate that I have given this email much thought and refused to reply in a the heat of initial disappointment, and that the inner rage is not directed at you PrimarySupportWorker, but I have long railed against those that would diminish me by abuse or neglect, but neglect is still a wound, a wound that is compounded every time neglect takes place.
I will not be wounded any more. If I have to go it alone, I will, but I can choose to not be neglected. I can choose to not allow the line-up of people and services gasping to neglect myself and my family as they grasp at every holy dollar.

I am done. I can’t begin to iterate my despair or emphasise what that one coffee date a month meant to me, the carnival is over.

It was such a small thing to look forward to … wasn’t it? ..."


So that's it. We navigate the NDIS, succeed or fail. We try to fathom the intricacies of legislation, bureaucratic agenda, wilful misunderstanding of documents and the dogmatic insistence on particular words and phrases, regardless of meaning or intent. We work, we care and we hurt and we neglect our own welfare for the sake of those who trust in our compassion and consideration.

What do we get? Neglect and a constant whittling down of even basic supports. We are not considered by NDIS funding at all, so we are left to shift for ourselves, left with considerably more work because, more often than not, it is we who have to navigate the NDIS for those in our care.

Perhaps we should just line up for a slap in the face periodically ... it might hurt less than this.

Thursday 28 June 2018

My Life as an Impostor


Most of what I have read about Impostor Syndrome refers to workplace performance. I was effected in my work life, but more and more I have this encroaching on just about every aspect of my life.

I learned to drive when I was 46. I had tried throughout my adult life, but each attempt had ended in disaster. My first attempt to learn to drive was when I turned 17 as is the usual for young soon to be adults. I did not feel like my ambition was fully supported and feed back from my parents was that I was not to be encouraged. After 20 paid lessons with an instructor I was told "Don't worry 'bout it luv, ya useless!"

At 21 I tried again. An old manual car and with an impatient husband. First lesson took me to a fairly major arterial suburban road. Impatient instructions such as "put it into third! put it into third! cant you hear the engine? THIRD!" lead me to such anxiety straits I could barely function. The elderly car did not help when  my panicked attempt to go into third saw the gear stick come away in my hand at which point I gave it to my husband crying "there is no third", stopping the car and never getting into a driver's seat until my 44th year.

When my marriage ended it became apparent I had no one to support my mobility and that the time needed to invest in public transport as a single parent of 3 boys working full time was excessive. I once more got a learner's permit and began to pay for lessens, now with the added burden of a crushing anxiety disorder and PTSD. I could not seem to get through roundabouts without a panic attack and even an automatic transmission was too daunting for me and I despaired of ever being able to direct my own motor ambitions or driving my own destiny.

A couple of years later it became needful to move away from the suburbs to a coastal regional location. This, from a logistics point, raised many issues, one being access to specialist medical care. The idea that I should learn to drive once more raised its unsettling head. I engaged an instructor, made him aware of my mental health issues, and proceeded to learn, one meltdown at a time, how to drive.

I bought a car, my first car. Not a small, economical, automatic wee model like I have been learning on ... NO! A great, old, 4 wheel drive, manual beast of a vehicle, and so had to relearn how to wrangle this monster and still pass the test.

It took three attempts to pass the test and get my license, but I did it. Sweat, shakes, sobs and tears, but I got it.

I was told driving got easier and that soon I would wonder why I felt so unequal to the task, a task that just about anyone else could do without even thinking about it.

5 years later and I still feel like I am going to be found out. Someone is going to pay attention and notice that I should not be driving. I can't drive to a major city, 2 or 5 hours away, with out succumbing to tears, giving in to fears, fears that including injuring my own loved ones.

I hate that I cannot feel safe or capable doing something everyone else feels is so simple. I have to cling so hard to lists of what to do and how to do it that simple things will undo me and leave me flustered and on the edge of panic. The sound of a horn or a siren creates so much panic and paranoia that I am so tense and rigid I can barely breath.

I find myself holding my breath.

I feeling that I am going to be caught, dragged out of the car and punished for the audacity that I even thought I could drive, that I shouldn't be there with people's lives in my hands, being responsible for obeying laws and not harming and maiming people. I constantly see me in the middle of chaos, the cause of injury and disaster.

I become consumed by a sense of guilt and shame that people will see me being a fraud who thinks she can drive.

This is my life as an Imposter, waiting for the gavel to fall for all to know and laugh and point ... how did she ever think she could drive? ... wasn't she listening when she was told how useless she was?

Yes. Yes she was ... and that, dear readers, is the problem. I heard those words, at the tender age of 17, and learned, hard etched into my soul, how useless I was. A lesson learned and made more indelible within a framework of discouraging words and actions by loved ones surrounding me, not intentional, but permanent in it's harm.

I drive. I will continue to drive and sometimes I even get to a place where I enjoy the process, the challenge of driving well. This complex set of feelings is not constant, sometimes it is in the background and sometimes it's in my face. Some days it is harder than others. People will tell me I am a good driver, but a part of me will always feel that I will be caught out and shown up for the Impostor I am.


Post edit: I never meant this to be a story of how sad I am, but a story of triumph over my own demons. I can drive, I do drive, I have driven through cities and across states, I have crossed bridges and beaches. My mental illness does not stop me, it is just a fact of my life. I am here as a qualified driver due to the support of those around me, the skills of those who taught me and the encouragements I have experienced to not let these demons win. My abilities are not less because I suffer for them, they are more because I have to work harder for them.
This is a shout out!

I CAN!