Tuesday, August 25, 2015

i met a HSE official yesterday- i met pain and tears today

it was a tough meeting with a top level official of the HSE.
it was arranged by my local TD and neighbour Simon Harris  and i am grateful for that.

but as many commentators said to me afterwards, lets see 'the delivery' after such a meeting before you decide whether you can truly say you either like them or are going to trust them.

i liked her.
but i have been warned again today 'we are dealing with a large organization'

we also have to remember that the Organization in question is dubious.
but its all we have.
and not all are rotten to the core, though i doubt we will ever know who we can trust and who we can
but certainly some retain that belief they had when they went into healthcare that they could make a difference to sick people.

today my mood went into 'free fall.'
it was pissing down outside so it didn't help.

another organision rang me with almost a contemptuous voice and i got terribly upset.
she tries to help as best she can i think

once my friends i didn't have all this.
what i had was LIFE as you know it and others know it and as my twin once knew it.

why does it all change when you become sick and getting sicker.
why do the carers care the least.
why do the family run in the opposite direction.
and why too does no one bother to see PAIN, as if its infectious.

i think by meeting up with a chronically ill person can put things in perspective and build up personal trust that if this ever happened you you could do it well, you could be a decent sickie or even a better sickie but living and learning means you will have to meet and learn from being around at least one sickie.
the feeling of us as having nothing to offer is bullshit.
for  the healthy we remind people of our fraility.
we ask them to question their lives and also to consider one word which is vital.

what is my life
what is the purpose.

i see i didnt have all of my front teeth so this wasnt yesterday but a while back they crawled all over methey do not now as rarely i am able for this type of thing, i get far too tired and too much pain asks these friends even to just be a little away but not too far

if i have now gone over nine years with no living at all then why should i end in this awful stuck grove of pain and fraught relationships simply because a state organisation and its one of its members wronged me and i find myself living anywhere but where i should be because of them.
she was a nice lady but the ones above are the people who drive home policy and it can be cold and uncaring as right now the hse is so bothered about the cost cutting its not selective what they are doing
in saying all this, i hate being sick.

Saturday, August 15, 2015

Meaningfulness, Happiness and the HSE

I am hopeful a time will come when this organisation will be just one of the many things i have to deal with.
I am hopeful a time will come when my personal life isn't consumed by the HSE, dictated by the HSE and tortured by the HSE.
Killiney Hill - where i walked with my Dad from a young age, this is my "Spiritual Home"
this is where i feel really good and at one with God
When i look from the top of the world, i AM on top of the world!
Killiney Hill to Dun Laoghaire and Howth - and all between
my Land-MY HOME!
i do not use the word torture lightly.
remember i am an educated lady realising torture in the world today is endemic.  I am not so lacking in empathy that my experiences are on a power to Syria, Isis, Palestine nor any other war torn country.
that said, its as equal to be told 'thank your blessings, you could be...' or 'you look well, think of those who have .....disease'
the latter sentence is futile in responding to distress.

I am educated enough to know, we live in a vacuum to a degree as we each try to live out our lives where we were intended to be, in my case the Ireland of today.
therefore all things relative, my experience of torture is...the HSE.

this is relevant to me as any other nation has their own troubles.
but its not the same type of torture, its just relevant to issues of the individual in any present time and space, country and age.

I am tortured
I see a time i will walk again - with a powered "all terrain" wheelchair.
I see this time as being 'Allowed' to live again
but i see a time when i will not be tortured but free.

Lets use another analogy here.  I feel i am placed on Robin Island.
i am not in a box of a cell but i am in a cell placed in no mans land to me.
i am here because i was shot at.  that isn't easy, to be removed from all i had loved dearly and could reach nearly if i was this sick and unable to do anything other than  a fifteen minute drive to a given destination and take out a fab wheelchair and throttle along environments that meant the world to me.

instead i am on this island that if i got into the van i would have to think carefully.  to get any where 'meaningful' for a person who receives the voice and soul from the environment i would have to drive some distance first.
i am not well enough to do this.

Meaning in life means far more than happiness, oh no this was alerted to me by a post on the faithful facebook a loved and hated medium.
but meaning is to me, to engage with familiarity and goodness and to have a purpose and be a useful, giving human being.

not being on an island hoping and waiting to return to my place, that place where the soul laps in the waves and sounds and rebounds in memories, cherished land of a spiritual ideal, for an individual who laps up life through familiar places, sounds and the people i knew well.

some find retirement and downsizing to a different county not easy but are able for it.
their ways of getting that meaning is actually through all they had done through before, usually family, friendships and maybe reading, the garden a bit of walking and a bit of socialising.

i have none of these.
i engaged in the land on a higher level because the 'human' was not there for me.
i engaged in empathy on a greater level with strangers who were disadvantaged or similar because sometimes people do this not so much to compensate but because the 'feeling of empathy is far greater if you do not have the distraction of family, friendships and your own kit and kin.

being who you are is pretty much dictated by who you are, the person you are but also by choice.

you chose to live a certain way.
if you are inclined to be greedy from an early age you will usually have this as your life path by choice, few turn from that and begin a life of gaining and destroying, some do not do it in wild ways such as our friend from Waterford whispers, but some do it in that subtle way within small groups and even within family.
but charge ahead for the moolah and they will and suppress all they need to they will.

to me, to earn money didn't come that easily.
i was an artist in the 70's and a troubled one.
so money wasn't the attachment i had and i never did really, for money was not around when growing up.
attaining a place in society, an attachment to people was a necessary and when i drifted far from the people i gain more from the land.

but now another wondrous thing about me being, i am a survivor.
none would fully appreciate this unless you were faced with a wall of aggression and repression and none would find it deep within unless they are that survivor.
i am it, and i only realised this when faced with the oppressor.
the HSE.

talent and belief in yourself are all discoveries by experiences.
did i ever think for a minute that i would reach outside that lonely box of just a studio and a dog to buy a home, engage with architect, solicitors, surveyors when all told me i was good for nothing, no.
did i ever think that i would be able to manage an independent life without the forces of medicine shoring me up forever daily, no i didn't.
i did not know who i was until i had crohns surgery and nearly died.

i did not know i was so brim full of strength until i faced the HSE demanding i do things that i intrinsically knew in my heart were wrong and i didn't want to do.
designing my home to the plan of a HSE official anonymous to this day was not something i took lightly.
i fought back.
but to fight in this manner was not something i was born to do.
i am a peaceful person.
i do not like it, so when i say i need my meaningful life and times back, i sincerely mean, i need it

but when the HSE consume your every moment on paper, in voice, in letters, emails and meetings, i need to fight the demon and start to re-enter that zone that i fully realise i can be a better person and a more useful person to society.

the fight of the HSE is demeaning, soul destroying and perverse.
unless the HSE begin to understand their own brief in history and in ideology we are on collision course and everyone who is hurt by the HSE is also.

remember the HSE fully know that the dynamic they engage in is familiar to them, but also its familiar to everyone else too.
they can have the Legal department which must cost millions a year to have because more and more people are facing up to their personal damage by the hse.
the HSE know that to make sure that they are protected they need this legalise, because the hurt, the wounded and the betrayed and destroyed are facing them daily in a discourse they never knew they would have to engage in.
but now they have to face one fact.
and more besides.

I cannot be the person who can partake in a meaningful way in life if the HSE is 'in my face' in such an abhorrent way.
i must disengage from the war.
the fight.
i have a few meetings shortly with this organisation from utter hell.
i ask all who are kindly out there who read my blog to think of me and pray for me in the next few months.
i will be away in a hospital in a different country for a while, with a rare disease i need this too.
i will be back again for - the HSE in a huge encounter after ten years of unrelenting disagreeable engagement with the HSE.
i also meet hopefully in peace and good will with a high official shortly and this has to be placed where it is, non aggression and with all the faith i have in myself and others to successfully have a meeting that sees an empathic engagement of acknowledgement of hurt and damage and then to see the 'person' that person who was a singular, lonely isolated figure who tried to help others within their own community.

the idea of this meeting is to express part of who i am, not the perception others have of me but the real Ann with her whole unhappy life but a fulfilled life, a meaningful life.
i want the HSE to take no more from me and my chances to be who i rightfully should be, a giver to others, not an aggressor to a large organisation who soul destroys at the first chance it gets.

we of course are not speaking of those working on the ground immediately in the community.
they are as beaten down as their clients, i feel this.
we are talking of managers, organisational operators who dictate.
who never understand sickness and hardly ever hit it.
I want to laugh with the fishermen again.
i want to watch the seals eat the scraps they throw down by the steps at Bullock Harbour, where my mother took me to buy fish for the Catholic Fridays'
blessed be them that fight the good fight and win.
blessed be them that know their strength and what their life has meant and where they will find meaningfulness within it, even with a life shortening illness, the purpose is to do give til the end for that is my purpose and i see the rest as utterly meaningless.
When i return to my home i shall be creative - do what i am best at doing, peaceful calm and space in my head for better thingand pray to god i get home quickly to where i belong, Dun Laoghaire, my soul land without a doubt my soul land.
when i am home again i shall sit there quietly and dream of what once was and think back only as a dream on 'the cruelty visited upon me, when i was captured in entirety by a very large health care organisation.
i shall swiftly remember ah, but I am home again and shall be in peace once more

Monday, August 3, 2015

Disablist = racism = abuse of power = HSE and continent.

i have indeed strung all these words together.
it has to be said that to ignore, downgrade and dehumanise those who are disabled and sick in such a manner is pretty much what we felt we were moving away from after the era of extermination in the gas chambers of the last war.
i felt we had realised something after the shocking stories that came out of those camps.
it is true, the Jews were exterminated but so too were vast swathes of sectors of society Hitler felt were 'useless eaters.'
these include the intellectually challenged, the sick, the elderly, the disabled and the mentally ill.
alongside that, they attempted to wipe out the Roma populations of Europe, a ghastly fact we have yet  to recognise, Millions of Roma were trundled off to be exterminated.
we do not hear much about all of these groups.

self promotion of ghastly deeds done to a group and religious nation is explaining this.
who can afford really to speak loudly for the 'useless eaters' and the least powerful groups in society.
There was no one.
There remains no one.

We now see a re-emergence across  the modern world of one major fact.  Those who are the bottom of the ladder are being blamed for society's ills - all over again.

we do not consider gambling and extortion, fraudulent dealings, and spending billions upon billions just in the hope that a gamble will pay dividends a reason to blame bankers, politicians and corporate governance and groups a crime against humanity.
When it didn't go as planned with all of these crooks a good few countries were brought to its knees and went down including USA, Europe but mostly the smaller players in Europe we see then emergence of austerity and blame, just as in the Second World War.
since this recent global depression where the sick were denied services, the disabled were being forced back into the institutions job lot, the ill and the learning disabled were denied health care and education we see it happening all over again.
since the global depression we see the gap widen between rich and poor, ALL OVER THE WORLD.

Money is being diverted away to personal accounts, group accounts and payments to public servants like never before.
so when our ministers get up to 500k a year and top ups over and above that, the poor and low workers have been granted a pay increase in Ireland of - wait for it - 50c.

Still we see that the sick and the disabled have remained below the poverty line.
we are being forced to pay more for just about everything on a fixed disability pension and it simply cannot be done.
services such as transport to the hospitals have been stopped.
the transport grant stopped and our government said they would bring in something fairer, it never happened.
tax allowances on petrol for disability vans and cars all stopped.

medicine costs have gone through the roof and some are not taking vital prescribed drugs due to cost.
Adaptive aids are least likely now to be given to the sick and the disabled.
That is bath chairs and wheelchairs.
Two items seriously close to my heart.

Alongside  of all of this we have what i consider the worst. - The abuse of power.
the HSE for instance can now actually vilify a sick and disabled person without any justification, seemingly without the need to justify it and will keep this up for ever, of course the one thing the HSE as an organization find it hard to do - 'own responsibility and sort the mess' -they have and are creating!
they are in true denial of what they do in the name of health care.
we are talking here of course of health care.

but only health care for the least well off.

NO individual in Ireland who can afford health insurance can expect to be treated so badly as those in the public system.
this is FACT.
those on insurance will say this is not true and come out with such statements as 'its not much better in the Private sector.'  Excuse me madam it very much IS better in the private sector!

you cannot even have examinations done that normally before the crash you could have.
you cannot have extra blood exams done, similarly you cannot request them as a patient with intelligence to do this again you are speaking above your station.
the slap from any consultant is that look of distain of the horror of Oliver who asked for more.

we are a sad society that neglects its ill and disabled.
its not considered a society if it does but a corporate business for one aim only to control the masses and accrue as  much money from the masses and more besides as they can.
they are creating elitism, conservatism and abuse of power.

No where can it be seen more than through extreme right movements and the extremism in the world today.
They just consider all groups who our outside their little cliches to be causing the problems in each country and yet its not so.

the sick the disabled and the poor have never managed to gain a vast capitol, they have never managed to do shady deals and bankrupt anyone least alone their own country.

most try to live on what they have, settle for less and cope by extended family giving a hand.

but not the shower at the top who are creaming it off and blaming us all at the bottom for being so expensive.
when it fact they are the ones who are overly expensive.

what has happened me for instance as a sick and disabled person is that this begging for crumbs from the table has cause vast abuses of power from the HSE, which basically are given free rein to do anything they like.  ask the Minister for Health, he isn't in charge of health, the HSE is.

Therefore with no governmental control the who organization has run wild in an absence of good governance and incompetency.
they are out of control.

we have no means either to protest.

there is no forum where justice can be sought in Ireland if you have a grievance about the HSE.
those who fight back will suffer major health decline as i have.

those who fight back will  lose sleep, cry a lot, eat badly, get exhausted quickly and do nothing as the despondency and depression is like that noose around your neck.

you will be slandered and dehumanised, and made to feel a vile individual.

you will also be targeted with insinuations that you are mad, mentally ill, psychologically 'loose in the head, ' anything but, for them to take responsibility and sort the mess.

they will increase your healthcare needs and one major one now being this -  i have no idea how to get my life back on track.
i have no idea how to transcend the demons of nightmares over the HSE and the lack of sleep.  Years of insomnia pain, weeping and depression - ALL hastening my decline in health.

words fail me on how i will ever be the same again after meeting the HSe when becoming ill.
i have no idea if my life will ever be called 'a life worth living' again.
i will attempt to go for it and try.
but my exhaustion, decline in health and feelings of despondency are great.

one thing for sure - i will fight for the sick, the disabled and the least well off.

and on a further note i beg my readers to sign the petition set up by my twin sister Dr. Margaret Kennedy.
its a fact we are only one of about two or three countries in Europe who have failed to Ratify the Rights of the disabled under the UN convention of the rights of people with a disability.
so if you really feel it and feel we must stop this rot i beg you to take a while and call in on this site and sign, that we are equal to everyone else and we deserve equal treatment.  we must ratify the convention of the rights of those who are disabled, so that we can be considered equal and not have the HSE do what it is doing, running wild over the vulnerable lives, of people with a disability.
thank you.
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