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Letter to Julia Gillard

21/07/2022

Good morning,
I am a 60 year old, 15 year veteran survivor of PTSD with a background of Parkinson’s Disease. 

I did battle with the Public Trustee, and lost relationships of those who thought I was suffering mental illness when I described my treatment.

I thought the NDIS would not succumb to the money grab that always comes when the vulnerable are open to exploitation. 

I am called a participant yet I have not been invited nor Notified of 3 most recent reviews where my funding has been not just halved but cut by three quarters, without warning.

I have been bullied by Agencies that are set up to provide SIL SUPPORTED INDEPENDENT LIVING but instead employ non English speaking backpackers (who are paid a meagre percentage of total hourly rates charged for care) .

I choose to live in my own home but I will no longer have the funding to employ staff on a 1:1 basis . Certainly not the 24/7 care I have received up to now.

I know There will be a time when my lack of funding will force me to live in what Support Workers , disparagingly call ‘houses’ … as they are certainly not a home .

While my primary support worker has been on a month leave , the SIL accommodation which provided short term respite for me , placed me in a 3rd floor unit, support workers had lift fobs and unit keys, we , the PAYING PARTICIPANT S did not.

I clearly remember the emotional day Julia proudly announced her wonderful NFIS plan. 

A dream ,fast turning into a very similar to 
Public Trustee nightmare.

… and whilst on this horse metaphor… As a participant in the NDIS, I respectfully would ask (if given the courtesy to contribute to a discussion ABOUT MY LIFE) … Is the NDIS conducting a marathon or a horse race.

Whatever it is I feel I am being flogged. 

REGARDS “not dead yet ) 

Julie Bury 
/Lehfeldt

Scorpion

Monique unfolded the midnight blue Basildon Bond letter. The cursive calligraphy, in silver ink, from her mother’s warm, gracious hands. She had been instructed to read the letter to the friends, family and acquaintances who were here for her mother’s funeral. Between each page a beautiful watercolour, each with her mother’s nom deplume, the scorpion.

Monique’s mother seemed preoccupied as her illness progressed, with her name and reputation and the lenses through which other’s viewed her.  The importance given to words and judgment. 

She remembers the special shelf for her mother’s creative space. A small desk in the corner of the kitchen. Compartments, in one, her mother’s three pairs of reading and one pair of sun glasses. Over the shelf a wooden plaque with three letters. P. O. V. (Point of View) Under the shelf the special cabinet which held the water colours sets, brushes and calligraphy pens.  Always a small pair of silver, filigree scissors. These, used to cut all brand names from clothes, shoes, furniture, any purchased item.  As her mother cut the labels her mother’s mantra… I have a name, I need wear no other. 

Her mother had been a woman of style, an artist, a teacher, who travelled widely and valued friends and family. Generous, a giver rather than a taker.  When a friend was in need she had always, had a room, time, even money for her family yet she discovered no reciprocity.

Bringing her mind back to the church and the present task, she read her mother’s letter.

Thankyou all for attending my funeral.

I presumed I would die at some time, from complications of Parkinson’s disease.  Worse than the physical symptoms, though,  the abandonment by close family, assumptions and judgements by many of you have said that you feel I no longer exist as the person you once knew. The person I was evaporated.

Branded as surely as any Auschwitz survivor.

That I survived,

At times hanging by a thread.

Is a wonder.

That my spirit thrived

Is a bloody Miracle !!

Suddenly, behind Monique, a woman shuffled in from the rear door.  

The woman hugged her daughter and turned to the audience.

Though frail, she shouted,

“I was, always will be … the women with the sting in her tail… and what a tale I have. ”

Let’s get the cliches out of the way …

As Parkinson’s has become the house guest that out-stays their welcome and sitting on my hands is no match for the verocity of the Parkinson’s ‘off’ storm..

Just as it was when I was pregnant … (but that was finite and I got to have a cute , suede headed , baby at the end of it )

EVERY ONE has a pearl of wisdom about Parkinson’s

  • They say ; ‘You are so brave. ‘
  • (I say/ think :Thank you but what would you suggest ? How does it look to NOT TO BE BRAVE ?I have no choice )
  • They say ;My great grandmother, second cousin ‘s , once removed on my mother’s side has ‘that’ too.
  • (I think : You don’t want to hear, I will shut up and wait this out)
  • They say ;Alzheimer s is such a terrible disease.
  • Yes it is but Parkinson’s is not Alzheimer’s
  • They say ;Have you tried cannabis?
  • I think: Oh if only I had a $ for each time I was asked that.. 14 Years times at least once a day

and

I say ‘No I haven’t .

/though

of course I have.

…. and I if I am to face a dragon , a fierce, me eating dragon.. every three hours .. I want to be fully ME.

.