Neurology - medicine - Autism - THE LOT

BORN EQUAL ACCORDING TO THE CONSTITUTION

I am BACK!

writing blogs were the last thing on my mind in recent months.

BEFORE 'ILLNESS' I WORKED AS AN EQUAL CITIZEN, PAID THE SAME WAGE AS EQUAL FOR A JOB WELL DONE.

I COULD CREATE EQUALLY WITH THE MOST CREATIVE.  I PAID RENT AS EQUAL TO OTHER ARTISTS AND I HAD A QUALITY OF LIFE EQUAL TO ALL. 
THIS IS MY STUDIO I LOVED BEFORE I BECAME ILL.

I EQUALLY HELD EXHIBITIONS AND SOLD WELL.
THE ONLY INEQUALITY DUE TO 'DIFFERENCE' BEING, I WAS ISOLATED, LONELY AND HAD ASPERGER SYNDROME.  IT DID NOT PREVENT EQUALITY IN CREATIVITY AND ABILITY.

SHY AND RETIRING I DID NOT 'COURT' AN AUDIENCE AND PETRIFIED IN THIS SITUATION.

dealing with healthcare consumed me to such a degree I really felt as if I was drowning.
I came to the veritable 'full stop.'

Breaking a wrist did not help.
Doing my back in compounded my sense of despair.
Fighting a large organisation for basic medical and auxilliary care and supports had now become a 24/7 nightmare and a hell on earth.

My life as it once was had passed by ten full years - I want it back - I still want it back.

NOTHING PREPARED ME FOR THE MEDICAL DISREGARD.  I BECAME ILL AND SENT HOME - LEAVING ME LIKE THIS FOR TWO YEARS IS NEGLECT.  I MANAGED TO GET TO UK AND DIAGNOSED FIRST WITH SJOGRENS SYNDROME AND MUSCLE MYOPATHY

VERY SICK - ABANDONED BY ALL

AN IMAGE SNAPPED BEFORE CROHNS SURGERY IN 2002, VISIBLE SLASH MARKS ARE EVIDENT.  THIS DID NOT HELP IN MY PHYSICAL HEALTHCARE AVAILABILITY.  I DID OVERCOME THIS, BUT THE RIGHTS OF EQUAL TREATMENT NEVER MATCHED MY ABILITY TO BE EQUAL.

CIRCA 2009 I WAS VISIBLY SICK.   STUDIO NOW GONE - THERE WAS NO MEDICAL CARE AND NO UNDERSTANDING

THE HSE DECLARED MY SOCIAL HOUSING UNIT 'A FIRE HAZARD' AND SUGGESTED I ASK FOR REHOUSING - EVENTUALLY PERSUADED NOTHING PREPARED ME FOR FALL OUT.

RESULT - MEDICAL MISMANAGEMENT AND HSE DYSFUNCTION - RESULT - FALLOUT ON A MAJOR LASTING SCALE.

YOU SHOULD NEVER PUT SICK AND VULNERABLE PEOPLE IN VIOLENT SITUATIONS WITH ALCOHOLICS WHERE SHE WAS IN DANGER

HOW THEY TREATED ME PRODUCED THIS IMAGE.
HOW I REACTED IN STRESS DEFINED ME TO THEM IN TERMS I NEVER IMAGINED

TEAM MEETING - HSE VERY AWARE OF HOUSING DANGERS - BUT IN THE END THEY CLOSED THIS FILE ON A VERY SICK INDIVIDUAL.

A PICTURE PAINTS A THOUSAND WORDS.  WE SOLD OUR ONLY ASSET, TWIN WITH PARKINSONS DISEASE SLEPT ON MY TINY SOFA FOR EIGHT MONTHS - WE FLED THE COUNTY DUE TO FINANCIAL CONSTRAINTS.  THE HSE ONCE SEEKING QUALITY OF LIFE FOR ME ABANDONED ME.

I THINK IMAGERY SAYS IT ALL.
THE SUFFERING THAT ENSUED.

I dream of the time I can paint and write.
That tapping out distress, tapping out begging emails and letters ceases and that harmony will prevail.  The care I receive will end with quality input from medicine and quality output at what i am best with - my creativity.

Lets look at where I am at.

Regarding engaging with the HSE, its as dreadful as ever.
To me thoughts around
'Who do they think i am,' 
springs to mind as i have spent long hours looking through community healthcare files.

WHO THEY THINK YOU ARE is actually more important to them than:

• WHAT IS WRONG WITH HER
• WHAT IS HER DISEASE PROCESS
• HOW DO WE ACCOMMODATE THIS
• HOW DO WE STREAMLINE HER CARE
• HOW DO WE 'ENABLE' RATHER THAN DISABLE.
• HOW CAN WE RELEASE HER TO BE AN ACTIVE CITIZEN AGAIN
• HOW CAN WE SUPPORT HER IN HER END YEARS.

but actually the predominant features of the Healthcare system as I see it today is far from lived reality.

It severely rebukes the disabled and chronic sick individual.

Healthcare in Ireland is based primarily on loving, liking and behaving.

You actually have to be a certain person.
You cannot be anything other than 'perfect'.

the model for a viable patient and disabled person runs something like this:

• ENGAGING
• COMPLIANT
• WILLING
• NON CONFRONTATIVE
• LIKEABLE
• AGREEABLE
• NON DEFENSIVE.
• NON ARGUMENTATIVE
• A PERSON WHO NEVER OBJECTS, or SAYS 'NO,' 

BUT MOST IMPORTANTLY IT IS THE PERSON THAT NEVER:

• SCREAMS
• SHOUTSUSES NASTY WORDS
• NEGATIVE
• DEPRESSED
• DISTRESSED
• CRYING
• BAWLING
• YOWLING

Personality presentation COUNTS.
It is fine for many if the road is less hard and easily travelled.

It is terrible if the road was never easy, if it was fraught with lifelong difficulties in general communication, and integration. Ones ability and issues around stress in engagement, skilled communication compromised over that of a person who was always able to be a party animal and had many friends.

These types usually find a middle ground to negotiate difficult times.

So here is the personality the HSE are failing to understand within this client.
It is actually important to know!

For starters - no where in the files has it been noted that i have had frontal lobe brain damage from a young age.
This therefore is a profound medical omission.  it distorts the medical definitions and overview of this patient and client

It has not been noted that i have brain lesions too from birth issues around being born with Congenital Rubella Syndrome.
this being omitted from medical and community files or only briefly stated without qualified explanations is medically denying a reality for this patient.  It denies the person a right to the full patient profiling.

it has never been understood that i have only 20% hearing.
Lack of medical comprehension to these things is inexcusable, modern science, understand of deafness and impact has grown in the past decade and is understood and weighted as having 5 times disabling effects than ever once considered (World Health Organisation has upgraded its disadvantage)

this is a massive deficit.
you usually do not classify in percentage terms, but its easier to understand it in those terms.

you cannot tell a person because you have great fluency, a nice accent and no issue with actual pronunciation that she is anything other than deaf.    

Deafness began around seven years of age, so i had 'understood' language until then and the decline though significant in the early years became worsened in later years with 'menieres' onset and 'mastoiditis.'

So personality is further complicated with a very late diagnosis of Asperger Syndrome, this term now has been melted into the Autism pot as part of Autism and being on the Spectrum.

but denial of both brain damage, deafness and autism is pervasive on community files.
Denying the medical evidence is medical neglect and abuse of power.  It twarts the picture. It does not represent the patient. It effectively wipes a reality of complexity, medically defined, therefore files are incomplete. 'Weight of disease/complex issues,' is not reflective for the person nor for consultant or community care professional.

It is never written down in community team notes as being 'important to note' which i think it is!

The understand of 'wholeness' of complete observation of persons with chronic illness and disability cannot be found either, within the medical field.

When clashing dynamic of how a patient 'operates' in the 'functional' way of 'communication abilities' we inevitably have a disharmony.

You are not going to ever get a patient with such complexity to match your ideal.

Society has to be observant of 'difference'
it has to adjust to facts.  HARD FACTS being, disability is what it says on the tin, it pours out with the communication skills which are appropriate to these deficits.

You cannot ever make an autistic person into a neurotypical.
You cannot put brain matter back when its atrophied.
You cannot remove brain lesions.
You cannot give renewed hearing when it has died, and is effectively - dead.

When a patient therefore becomes sick, we have disharmony and only one person suffers in this.
The patient.

People like myself and of course many others have their own ideas of how to care for any individual.
There is a golden norm we wish to aspire to and its called: 

Best clinical practise for all

I personally have my idea of how i should be cared for. I am not without intelligence and I am very practical, sensitive, and knowledgeable.
That has not been damaged by the deficits i presently have.

i believe in Morality and Ethics. 
'Difference' should not bring in its wake inferior medical care and inferior community supports.

I am now 65yrs and this too can come badly against you as you are expected to go home and die off, irregardless of how unwell or disabled you are.
Again, i cite any country as a Morally Bankrupt society if it inflicts such suffering on the most needy as care should increase not decease for our older citizens of this state.

i don't intend to allow this happen and will demand equal treatment for equal illness as the rest of the youthful citizens.

Treatment of those with 'difference' has meant an inferior care system for us.

It is blatant, obvious and painful.

It crushingly defeats the strongest of us.
It attempts to deny and anihiliate the personality of spirit, spunk, genuine good intentions and the care for the greater good of the individual.

Arguing for best practise in a badly communicated way is considered consistently as - 'she is aggressive, abusive' and a character/personality is defined from professionals meeting this as:
 'here we have a disagreeable person'.

It says nothing of how that person deals with stress.
But then if you do not put on the files medical evidence the person deals badly with stress and distress we are not heading for a winner here, ever.  
This, I consider medically screwing the evidence for the benefit of the professional rather than the patient.
  
It is medical malpractise to obliterate the diagnosis

the black and white picture is very black for the consumer in Irish Healthcare.

Try going to a consultant (alone) with a diagnosis of Autism, Severe/Profound Deafness, and issues around communication, deprivation of social inabilities due to a life of isolation when you withdrew from the world for decades.

Try carrying on an equal discourse on disease, care and diagnosis with this set of 'communication difference'.

It is impossible.

you are not meeting my sisters here.

You are meeting a 'born with disability' person with newly acquired disability and chronic diseases of considerable complexity.

Missing this point entirely because I am articulate, forthright, intelligent and speak proper, misses the deficit marks entirely.

I speak sir and equally.
I am sir, different.
You will not applaud my screaming when so distressed its unbearable.
You will not applaud my meltdowns when you rubbish my illness and presentations.
You will not applaud my loud snide remarks, abusive phrases when you have brought me to the end of my personal rope and i am beginning to loathe every fibre of your being.
Denegrating me as a person who intrinsically never wanted this discourse or disease and who is pissed to the eye balls with the reticence and the rejections and the put downs will cause a reactive response every time.  You caused it, Sir!

You will not appreciate me telling you that for too long you have insulted me, defamed me, anihilated me.
You will not appreciate it when I attempt to tell you that although I scream and shout, I would not consider myself who you have decided to label me as.

YOU decided that without my input.
YOU decided that because it is convenient.
YOU have decided that without looking at 'cause and effect.'
YOU have made this judgement without looking at well observed, tested and diagnosed issues you have failed to note on the files with medical correctness that files should be complete and give the full picture.

There is no warning that difference will present in this individual from the start.

No doctor or community care officer has ever written such words of these as part of 'history' for this patient.

This woman in senior years presents with chronic disease and with a complex neuromuscular disorder of unknown aetiology.
Her social history has been peppered with disadvantage, isolation, exclusion and sadness.
She has rarely engaged with the general community on a level expected of a citizen who is accomplished in communication.

She is intrinsically vulnerable and has experiences not many encounter on a consistent basis.  She has a history of sexual abuse, further impacting on trust levels especially with men.

This woman has an autism spectrum disorder, is severely deafened and shy and has a communication fitting her ability.

We must therefore at all times remember her lived experience we may never understand or have experienced.

Best practise demands the following dialogue:

• She comes to me today nervous, terrified, with little trust but expects as is her right to be treated well and fairly.
• we have a duty of care to respect her, do all we can to 'enable' her have a quality of life as all life is sacred.
• we will endeavour to give her back her dignity and quality by enablement not denigration of body, soul and spirit.
• we treat her with a preciousness because she is special and requires a sensitivity from us she may never be able to equally give in return.
• we must never abandon her or make her feel pain due to her communication disabilities.
• we must never make it worse for her than it already is.

Alas my friends they, the medical professionals and the community care teams, have made this person's life HELL ON EARTH
Labelling has been so defamous that its shocking.
Denigration is the order of the day.
Abuse, torture and neglect comes on a power that many who can fight back would have been able to stem long ago.

HOW THE CARING PROFESSIONS SEE ME

To me today as a person thus described above, my lived experience of those who should be better able to enable has been profoundly traumatising.
It has cut me down to worm status. Given me a level of despair and depression I never thought possible.
It has halted me in my tracks and stunned me as if shot with a stun gun.
i have been very heavily beaten and thrashed.
Denial of healthcare has been the result.
Many know that part of the story.
How many know why it has happened?

Ignorance.
Plainly I see this all as inability to deal with 'difference' and inability to accept that people are different.
The ability to need a person to be a certain way before you can treat them is profound here in Ireland.
It does lead for an easier life if a person is a 'yes man/woman' and pliable and grovelling and compliant.
It is not easy to meet an intelligent woman with high standards, expectancy but who has a different way of engaging in a conversation she finds almost beyond her ability.
What happens then is anger, really on both sides as one trashes a person trying to be heard on a consistent basis resulting in a person who has had enough of the abuse and lash out.
That part should make perfect sense.
You cannot have it any other way.

Anyone abused should react!

Do I respect those who abuse me?
No,  I do not.
You will never make a saint out of a person who is harmed.
You will never make me act saintly in the face of abusive practises.
You will never make me accept your perception of me and you cannot expect me to be in your terms 'normal' when its abundantly clear what we are dealing with here.

It is MY personal situation from hell.   The anihilation is real.  It happens because of the expected response from a disadvantaged person with so many health issues.  You cannot ever conceive such a heavy disease burden.

Two consultants to date has named this as it is.
one said in writing 'she carries a heavy disease burden.'
The other considered me amazing and said to me as he wheels me away from a colonoscopy room, 'you have such a lot to deal with.'

Tears dribble down from the corner of my eyes.
Will you look into my eyes and observe my distress of this 'heavy disease burden' and unrealistic expectations of the healthy and powerful over one single person who is doing her best.

The added problem is, I have now reached 65yrs of age.
I am expected now to go home and die and go home with even less service than I ever managed to garnish for myself.

YOU DEFINITELY FEEL IT!

So we have inequality here being played out on a grand scale.

I DID NOT GO THROUGH SO MUCH TO LIE DOWN AND DIE NOW.
I AM NOT GOING AWAY WITHOUT MY FIGHT TO MY LIFE, QUALITY OF LIFE AND EQUALITY OF HEALTHCARE AND SERVICES.

This person will not accept this.
I demand equality, despite all.
You are not allowed discriminate on the grounds of age.
You are not allowed discriminate on the grounds of disability.
       route it out where ever it occurs.

Ten years of denying the therapies and treatments mandated by the medical consultants who mapped a plan for me has been denied me and my identical twin sister, i hasten to say.
I have yet to have anything implemented and now aged 65 it will be harder.
I want all to understand this - I will fight on, in truth and justice.
i will face this with my inability of communication but I will intellectually be able to tell you that it is against the law to abuse your power, to defame and to cause harm.
All of which you have done to me.

it is morally and ethically wrong
but more importantly - it is acknowledged as a dynamic as being against the law.

May i ask all the community care professionals as i end this discourse -

WHERE HAVE YOU HIDDEN THE MEDICAL EVIDENCE I GAVE INTO YOU WHICH NOW SHOULD BE ON MY MEDICAL FILES, BUILDING A PICTURE TO ENABLE YOU TO CARE FOR ME AS A DIRECT RESPONSE TO THE REALITY OF DISEASE, FUNCTION AND DISABILITY -

THEY SHOULD BE ON FILE, THEY ARE NOT.
WHY?
IT IS NOT POSSIBLE TO KILL OVER A 'STRONG SPIRIT WOMAN' DESPITE HER DIFFERENCE AND INABILITY THROUGH DISABILITY, I AM INTRINSICALLY SOUND!

I DID NOT GO THROUGH SO MUCH TO LIE DOWN AND DIE NOW.
I AM NOT GOING AWAY WITHOUT MY FIGHT TO MY LIFE, QUALITY OF LIFE AND EQUALITY OF HEALTHCARE AND SERVICES.