when hospital becomes a very sick place to be

when a hospital becomes the object of terror and fears, it has so because its operations is so dangerous that its actually terrorizing its patients and clients.

may i change the word 'disabled' to 'so sick so...' get equal get vocal
you will if your life has been in danger in an
Irish healthcare hospital or A'E

when i use the word 'clients' i mean this.
if you pay for a good hair cut, you pay for a good hair cut and you can complain if you do not get good value.

my twin protesting about HEALTHCARE

how important is the health care then.
we are clients.
all within the healthcare services are there because we pay them to be, to care for us.
From the surgeon with high skills, to the Head of the Department of Health, to the consultants, the nurses and the administrators.
NONE would have a working life, a wage without us 'clients.'

we are there because we need them and its equal to the 'good hair cut'

anyone ever been to a hair stylist as a experimental dummy for a junior?  well i have in my student days and the scissors cut into the back of my neck.

Now this was the cheaper version of the real McCoy, i was being experimented on and hoped that the result was good enough for the cheap or no fee given.
but in fact, all of us pay towards health care indirectly.
we have no alternative.  it is placed there, (the cost of) in direct and indirect taxes.

Even if we do not pay enough for Health we should at least expect to have paid enough to stay alive in a healthcare facility because to be terrified to enter a hospital in case overcrowding causes illness, mayhem causes mistakes and your life is on the line even after entering for some time minor then we are in basically - deep shit.

Ireland seems in deep shit right now.
we have hit that hammer hard and the clanger and clanged out to 600 plus one more.
the highest ever numbers on a hospital trolley or chair in an A'E facility here.

we have had mild weather and only in the last fortnight we have had zero temperatures one or two nights in this time.
bugs come in, you go in and you are in utter dread and fear of what next.

if you are already compromised in your health and are already sick, how scared can your country allow you to get or be, before they realise we are oh boy in deep shit.

where is our Minister for Health right now.
when we are facing an even worse crisis in our hospitals than ever before, has he taken a longer holiday than all of Ireland (all of Ireland are back to work) the Dail our gov doesnt come back until the end of the month.

Hey man, you are being paid a vast sum.
can you help us not die in our healthcare facilility while you ski on some austrian or swiss slopes (i think they have snow to do this, which is our pity actually).

you have let your people down.
we are not a big country, we are peanut size and i mean it.
we are peanut size giving most of our cash to germany.
we are peanut size with a massive health issue in our peanut size country and our peanuts of ministers are scattered all across the globe and not here.
we are letting our people die, and our peanuts are rolling around laughing some place else but in this island.

this time a small injury and comforted
next time what could or can it be?

i am terrified of entering a hospital in Ireland.
with a rare disease and far more besides, many things can spell the end of my life and i have been told, do not come in for long or if at all because its dangerous for you to get a bug here and so i tell them this on my arrival.
i practically wet myself with fear.

how bad is that?
how bad is it when citizens of a small country are frightened of going to a place to get better when they could end up in a box with a funeral being prepared thereafter and you are heading for the hereafter?


we have a bad situation here in my country.
we need some warriors here to help us, will my country stand up and riot over the healthcare inhumane treatment and the human rights violations all across the board.
i personally have felt far too much of this service.

although the water debacle has spelled the death knell of the present gov i want the irish to say also rise up and do something about our medical care services NOW, not when money is coming back for it has to be found now.
whats there is being used up in litigation from badly served clients - suing is the new management planning of the HSe.

not only disabled but very sick
any time in hospital means 'you are in deep
shit my gal'

a dialogue with myself

this is really a dialogue with you.

its me being a musing individual musing away about whats on my mind.

as i am trying to cull my paper mountains i decided to gather up all the files i have on the Irish Health Service Executive.
i have so much because so much has gone wrong for me.
i am staggered to see the amount of files in my home from this source.
these came to me under Freedom of Information going back many years now, certainly since i became so ill.

Freedom of information in ireland is a misnomer, for its not free information.
on ALL of my files i have been denied this and that citing 'third party confidentiality'  but this is another way of saying 'dont show HER THAT!'

its a way round taking responsibility or being shown up at fault.

many things within a space of three quarters of an hours reading said one thing to me, in well over a decade nothing has changed about the way they deal with people.

here goes:
'I am very concerned that the social housing unit is having a detrimental effect on her physical health and her mental wellbeing'
'this is a housing issue not a health issue.'
the former said by the HSE
the latter said by the HSE
both said by the same person!

'As expected, another complaint'
this is good because they fully are aware i do not go away that easily, but then when i follow on reading:

' where is the PA services that was promised me? what happened to it.
where are the shoes sanctioned for me, where are they?

Regarding the housing again:

'they (the council) said she is only entitled to a one bed housing unit as she is a single person, she already has a two bed unit'
i will write further to the general manager.'
both said by the OT manager.

further along we hear:

we had no input into the allocation of this social housing unit.
we were not informed.
we would not have sanctioned it if we had known.

ok then ....
if you are dealing with a seriously ill woman who has been pursuaded by the hse to move because of risk, why do they not have input, why have they not been informed of where i was to be rehoused and if they wouldnt have sanctioned it, what do they do then?
the said OT was on extended leave during all the time of the relocation, the allocation and the transfer and no HSE official could be found around this time.

That said, the council too should never have allocated without referring to the HSE who actually was advocating with the council for my needs to be met./
dirty underhanded stuff here.

'she doesnt deal well with change.'
she gets verbally abusive under stress'

and Yes, i agree, i do not deal well with change, and under stress i shout.
I have asperger syndrome and thats why this comes about.
'we are very concerned about the effects on her physical health and mental wellbeing.'
tosh.
'she has expressed suicidal ideation'
well what have you done about it or ever done about it.
i do not deal well with stress.

so far the HSE has heard many times i feel suicidal due to stress of being unheard, no services, horrendous name calling and yet they do not see ever that the lack of action, bad action and profound stress is constantly edging a person towards suicide.
they do nothing to prevent moving me from a safe psychological state to a very unsafe one in both counties and they do it REPEATEDLY.

so when they had said on more than one occassion 'i am very concerned for her mental wellbeing...\
do you believe them?
no.
and they should be concerned,
but they are not.
because if they were they would make sure their actions followed those words, something that actually is always investigated in a case of suicide.

when someone who is vulnerable commits suicide and are heavily involved with the HSE there is uproar in the media.
they say, 'we shall investigate so this will never happen again.'
if the HSE do investigate after such a death so that it never happens again, why is it happening again and again and again?

why are they bringing their clients to the brink of suicide and not preventing such an occurance, especially when they are 'very concerned about the mental wellbeing of so and so.'

because they are not very concerned about so and so.
if they were they would make sure that person is safe from harm. psychological harm, and personal safety by swiftly putting to right what is very wrong and causing a spiralling downward effect on a persons psyche.

does anyone see what i am getting at?
its bizarre

they are so USED to behaving the way they do, they either feel it will all blow over and everyone will be fine or they say, if it doesnt and we have (a suicide) we will put out a 'very concerned' notice to the media that this has happened and will 'investigate.'
the HSE seems to ride every storm.
but one things for sure their mistakes cannot be hidden forever.

they are making mistakes.
they are playing with peoples lives.
they are damaging peoples lives and wellbeing.
they have damaged mine.
they have made not one iota of amends to the damage they have done to me.  NOt one.

they have litigations ongoing the length and breath of Ireland.
everyone knows this.
the HSE still think they are a fine ship.

well one person doesn't, I don't.
because less than an hours reading of personal files has me aghast, but then every time i read those files i am in disbelief.

we have a dangerous national service here.

Speaking on Irish Health Systems, my new approach, for a new year

hello everyone.
firstly i am on the cusp of reaching the grand number of hits of 13,000.  I thank you to consider it worthwhile to hear what i have to say.

We have a new year, its good to see the end of 2014, as you know it wasn't good for either my twin sister and myself.
i hope this year will bring exciting changes in every way.  both of us wish for this and need it.
we are not young and we are very sick.
we deserve that break that will bring us to the realm where most can attain at the end of their life, a bit of peace and happiness.

well the title of this blog is just that, my new approach.
we know from my writings that i have found one system a particularly damaging system within the Ireland ways.
it is of course our health system, with its Public and Private divide.
the Private system has not changed or deviated in many ways since the setting up of the Private system, indeed the only thing that has happened, its getting far too expensive to buy into a policy and plan now, harder than ever.
Market driven, not at all, greed, my friends.

the Public system has been decimated.
we experience this and know it.

but the System is what i wish to look at this new year.
i want people to understand it from a birds eye perspective, the client.
the patient, the sickie, the vulnerable, the hurt, damaged and left.
thats the real view of this system, and its of course mostly in the Public system where the dynamic i speak of exists.

I want not to attack people, but a 'system' and a 'dynamic' that has reached a point of no return and an evilness now in our midst.
People on the ground are trying very hard indeed, and most are very well meaning and work very hard indeed.
but again its the system i speak of.

I will try and do this form of enlightnment for everyone, so that there is clarity and no ambiguity of what i mean by systems' failures.


I look at it from my view, a sick person's view, who is open to hurt, damage and abuse, by 'the system.'
in order to put anything right, most must know what is wrong.
many times i feel the Irish don't understand what is wrong because they have not reached the point of needing a health care system and therefore they are blind to it, and there are other ways they do not know.
they are not allowed to know.
they are not informed, and this is a distinct directive of again, the same 'system' and media plays a huge role too.

the people who are hurt as well are silenced.   So much damage has been done to the psyche of the sick that they will go into a hole and refuse to say another word, because the dynamic of this 'mafia type' system is to blame the sickie in every way leaving the sickie with no back up as in confirmation.  There is no accountability or fairness in this practise of health care in ireland today.  It happens that a sickie who protests is deprived of better services than ones who are more easier to manage, that is those who shut up and say nothing.  Many would say 'ah no they are not that bad.'  Actually, they are!

One example at the start of the year is enough and it goes very much like this:
we have managers in each area and these are called Primary Health care Managers.
They are drafted from the professions, but rarely meet the client on the ground, and rarely meet a lot of their own workers either.
They are there to divide out the pot of funding.

we have the workers on the ground who actually do see the sick person, in our case living in the community these are the community care teams.

practicianers within Primary and Community Care are drawn mainly now from part timers and job sharers and people who come back to work after an absense.  there are also those who have been there for absolute decades.
When systems stagnate over decades no change takes place, and a belief that a practise works pretty much sticks.
Job sharing and part time work is good for many areas of work relationships, not good in health were expertise is not experienced through time.
Therefore there is a disjointed system already.
We also have far too few workers as well so the clients are not known as people and with souls, just alot of sick on a conveyor belt needing a bit of something now and again.  Only a few are known in depth, leaving many vulnerable people left out altogether, because they do not speak up and get lost and suffer silently.

As a sick patient/client and community person, living in the community i am supposed to have equal rights as others in the community.
we have laws, quite a few have been built up and  the biggest is the 'idea' of 'the social model' and the 'client is at the centre of her/his own care' therefore you would think with new thoughts, ideas and actual policies dating back a fair while now for it to be a fully integrated ideal, things should be changing for the better.

Nothing could be further from the truth.
They are getting far worse.

One sick person makes a complaint against a Manager, for argument sake.
This complaint has to be investigated.
The complaint's officers are other professionals from the same organisation as the person complained about.
the complaints officer investigates.
It is extraordinary, every time it is weird and wonderful, weird and creepily ineffective, bizarre and economic with the truth, a complete white wash.  Aimed to be.
The complaints officers chose who they will speak to about the complaint.

they rarely chose everyone connected with the complaint and rarely speak to named people you yourself wish to have interviewed as part of the process of complaint.

they interview the immediate group of the HSE officialdom around the person being complained about.
The complaints officers are NOT outside the HSE, in fact many are within the same AREA geographically as the HSE official being complained about.
They can even be just a tier above that person, so effectively they are investigating their own colleagues.
This is the first rule of thumb in the basic structure of the HSE - shore each other up, say nothing against your colleague and do not get found out.
After that, the reports written are lop-sided, brilliantly drafted and brilliantly convincing.

The one thing that is not seen in all of this complaint process is the truth.
this gets buried, because its not a complaints process at all.
it 'plays' as a complaints process.
it is in-house working around a complaint then its to the legal team for overseeing so that the final report can be sent out as kosher enough to send out.
The let down is enormous.
you KNOW the complaint is valid, you know you have been wronged but you also know, with this type of complaints process it can go nowhere.

You cannot have an official of the same organisation in the same area investigate a complaint against a colleague who sometimes can be even a friend.
tis daft!

Many do not understand this!
The process that is there to uphold best practise, is only best practise of deception so that no bad practise is ever revealed to the 'outside world.'

Lets say a detective seargent shot a person in his own catchment area, is it right that his superintendent investigates and makes the decision of who is right and what happened and then exhonerate the gun slinger?
This is what is happening in the HSE in Ireland, our health service exec.

The one law that must be upheld in the HSE - do not get found out.
i will teach you in almost ten easy steps how they do this.

The complaints process is only one.
Lets say you complain about the investigation outcome which is highly flawed, inaccurate and one sided.  It can go no further because there is no where to take this to.
You can go to the Ombudsman but many do not but yu can then try and effect change by lobbying your local area or your constituent TD holding parlimentary office not so much to get them to say your complaint is valid but to request they see if the impasse which brought about the complaint in the first place can be resolved.

When its about a denied service, this is investigated by a member of the politician team and they write and ask the HSE whats this all about.
Well the HSE has a shining answer, probably put to a legal team before answering, but its wonderfully scripted writing.  Believe me they would do well in Hollywood so they would, the imagination is extraordinary.
Your complaint, but also your personality is brought into question in all manner of ways therefore most will then back off, and it dies, dead.
On the spot.  you are like a squatted fly.  That is intentional, they have this down to a fine Art.

Herein lies a problem within the HSE.
Its about the biggest.
The lack of accountability within the organisation is astounding and the litigation fees alone are staggering leaving even less money in the coffers meant for helping the sick and frail.

The need, the overriding need of the HSE is to protect the HSE.
Strange thing though.
We all know its rotten.
its been spoken about in the government chambers as being 'not fit for purpose' and must be 'disbanded.'  Its out of control and too big.
YET the same people making this statement then go about and employ ten per cent more MANAGERS!  Its this layer that are the lynch pin of corruption and an unworkable group in the whole organisation!

i think for day one of 2015 i will leave you this to digest.
Remember folks, no names have been offered here and none implied.

What i am saying is 'this is the experience of many i know now who have been wounded by the HSE, damaged by the HSE and hurt by the HSE.'
It is experience explained in order to stop the damage for this damage is, er damaging for a sick person.

It has to stop.
When it cannot be stopped apparently as it is in its present form, someone has to demand it stop and you can only do this by making it known, so that the wool is not pulled over people's eyes.
So far the wool is shaggy and thick.
Not many can see the deviousness within the HSE or believe you, that is why it will be so hard to break down.

A vast amount spent on hiding the truth, its hard to let it out, and get it out.

it only comes out by those who are at the receiving end, not by the organisation itself.
It gets out too by good people who also are willing to get it out there.
There are actually many within the HSE who hate the way it is all going but are afraid.
They can be called whistleblowers, and they now are protected species. We the sickies are not and are not protected in any way whatsoever. We are open both to further abuse and denied services and victimised, we will be hurt by saying the truth.  This i HAVE experienced.
Its a worry for me, that this is so because i need services.
But i also have a heart and soul in justice.
I want the plate cleaned up and licked of mess and evilness at the core of this state's Health Service Executive.
You can work professionally without destroying those you are employed to work FOR, the sick!

You can be a good professional or be a bad one.

Right now there is an imbalance, there are far too many generals and corrupt and horrible people at the top.
there are far too few who are willing to say 'the emperor has no clothes.'
does anyone know what happened that boy who said this?
He was in the end believed.
I say, 'the emperor has no clothes' now i have to get you to see why i say this.

HAPPY NEW YEAR!

awnyah todaysay: Ireland, water charges, being sick and being in th...

awnyah todaysay: Ireland, water charges, being sick and being in th...: a few days after christmas, i can squarely say it wasnt much of a festive season for my twin sister and myself. we are in Ireland. the cou...

Ireland, water charges, being sick and being in the EU - disability opinion

a few days after christmas, i can squarely say it wasnt much of a festive season for my twin sister and myself.
we are in Ireland.
the country is in crisis with an odd agenda of a small country being completely taken over by the powerful in Europe.
i wish to see us OUT of the EU and go the way of the scandinavian countries and also Iceland.

this is a view held by many and i believe the Irish are rising against what we now see is a tyranny on our small state.
we are but small and yet we think as if we are mighty, we are not.  we will remain small by virtue of our position as a small island on the perifery of europe.
we have great talent, good ideas and fanstastic work force but we do not seem to flourish when on the land, we seem to do that once forced away from all we had known.
every single generation now has known emigration on a large scale.
ireland continues to have little to offer its young and educated.
this is the problem.

but on a personal level and it has to be personal for i am not in the main a polictical analysist, i see with my eyes, i feel with my soul and i endure it too as a disabled woman getting older, and doing so alone with my twin doing the same.
we are 'degenerating' aged 62yrs of age.
there are no supports for us.

the family in ireland as society is breaking down is also scattered, fractured and lost.
to us.
but many families now face the same.
many families do not support their own in time of need and some do not because they cannot afford to, cannot spare the emotional/psychological space because they had grown up in a dynamic of individualism and do not want to hear such words as 'sickness,' disability nor policies on disability, equality and disability and fairness nor do they want to hear that there is no effective public health service here.

we are told, if we go to a family gathering, do not talk on health matters.
i say inside 'well its still there, even if we do not talk about it, we still  need help, still sick and never will we be getting better.'

the way ireland is going makes the vast majority of its people very frightened indeed of the future.
we have a large aging population, no health services, and now they speak of cutting the pensions, but if they do that i may as well just die.
would it be better to put me up against a wall and shoot me?
Why do they say they want to cut the state pension when our own government ministers and president earn more then the leaders of vast states, even our leader earns touching what President Obama does, we have a country of five million and he is on THAT wage and with all its pomp and glory too!
why not start where the money is?
why are they decimating the old, the vulnerable, the sick and those alone without support.
why do they do this and they have always done this.
france put up frames on benches to stop the homeless sleeping there.
they give or wanted to give yellow triangles for them.
we wanted to make these sort of portocabin makeshift homes on the skirts of dublin.
shove em anywhere but dont let the affluent or the middle class have to think on 'social concience' and the least well off.
in america its now a crime to feed the homeless and where is that lovely old ninety year old arrested for doing just this now?
anyone know?
the roma have been routed from a site in france.
the travellers from a site in the UK.

we claim, that is the world claims that these people, all these unfortunate people are 'wasters' and 'no good' forgetting that society is based on professional classes and these are the higher paid jobs so without the sick and the elderly and the homeless we would have none of the following jobs:
doctors
priests/ religious
therapists.
OT's
Physiotherapists.
researchers
economists
law reform.
equality law
all these sorts of careers which in their high paid capacity not only works for the poor, but benefits directly from the poor in the course of helping the poor.
this my friend is what society and collective concience is about.
to say in a blanket statement 'just hide them' or 'get rid of them' is denying where wealth is generated and experience gained and research into disease and aging helps so much in real terms in the long run and we can do all that we do, far better with the help of the professional classes.
many will improve quality of life.
many will have better health and care services and the list is endless.

in ireland for instance we are fast becoming a nation where no one wants to be doctors in.
this is our fault for falling to the burocrats in europe who say we have to stem the cost of our health care system, but what we did then was created no health system with a dire shortage of doctors and expertise.
my twin and i have personally been sent to the UK twice this year under government funding as rare disease individuals, being twins we can be useful in this regard.
but we are going to be sending more and more will be leaving, just to get help which we actually could provide if we allowed change to happen.

another act of complete stupidity was retaining the HSE in its present format and engaging 10% more managers to manage the health service.
well we know well its this class that cannot manage the services in the first place.
i give you a salutary tale where the HSE bought with funds from the exchequer a christmas tree for the grand sum of 2,500 euros and its now sits outside Limerick hospital and twinkles away.
this is a lotta money in Ireland which is so bereft of funds that people are going without proper wheelchairs.

they are giving out ones that are eleven years old and crash its clients into stone walls, because wheels fall off and the client bombs bang into a wall on her way to a neurologist.
the wheels were put on by the wrong bolts.
so between christmas trees and no medical services, we cannot function as a healthy nation.

we need to function!
equality allows all to offer their skills to the table.
one senior social worker, who has spoken in brussels is still a vibrant woman but because she has no transport and the transport grants have been stopped over two years ago, her skill, her training, her lecturing at the universities and other has come to a halt.
she is a wheelchair user. she doesnt drive.
therefore Ireland are losing a very talented, skilled doctor of philosophy who trained up its own social workers in the HSE when she was a well woman.

this sort of crass treatment and denial of her gifts is outrageous but what more for Ireland its an utter waste.
not to mention her sister who has her own skills to offer but right now too bloody depressed and too engaged fighting for very basics to live as a disabled woman, seemingly having the same rights as everyone else, but in fact doesnt.

this is called actually the class divide.
the Greek now have risen up, i hope Ireland does too, i hope we do it peacefully, cleanly and in my lifetime.
i hope the diaspora will support this irish rising, for we are on our knees.
i want out of Europe where strong forces are crushing us and crushing the individual here.
i want a small nation to act like a small nation and be satisfied we can do well with what we have now.
we cannot even hope to be anything other then a TINY country.
many countries still have  never heard of us.
we are small.
i am ok about that.
i love ireland but not what is happening it right now.
i hate seen the struggle and depression in the vulnerable classes.
i hate it.
i would have thought by now Ireland would have been self sufficient, and caring nation for its own, its taking too long to get there.
but certainly i believe if we are outside the EU we can make a better go of it.

Last post HSE letter 2014; Last post HSE 2013 the same.....

it is the last post before christmas, or nearly.
today i received a letter from the HSe.
it was pretty much in the same vein as in 2013 when the last post produced a vicious letter from them.
i also got one on the first post of 2014 and i just wonder will i get one first post 2015.

i really do have issues around 'sensitivity' of the HSE and how they deal with sick people in Ireland.

this is not about health.
absolutely not about health at all.

I do understand that the HSe are capable of snooping into my blogs, in fact this is a directive of the HSE, do snoop and see what i am saying.

the callous disregard for patients, sick, disabled and elderly in Ireland is staggering, all from our Health Service Executive.

in other words the letter today told me to basically 'stuff my complaints against them, they have all been dealt with.'

i say, well in an investigative manner who dealt with them and who did they interview?

here is how it really works, an investigator can be the manager from the same area and same team manager of the same area and the same area managers i am complaining about.

so this is if you go onto their website the ability of the Irish to have Your say and complain is democratic right for us, but in fact you can have Your say, and then they will tell you 'stick it up your arse.'

for me, as a person wounded, hurt, traumatised in life and by sickness and disability i have an immense amount of common sense, intelligence, spirit and character. I will say to the HSE, when any of you get sick be prepared, you will be treated pretty much the same as you have treated me, especially if you need extreme care as an x-nurse who worked amongst you for over thirty years has and has been denied a medication to keep her alive.  I do not refer to myself here, but another case placed in the media and common domain.

you are the most wonderful bunch of crooks and callous individuals i think i have even clapped eyes on, and i have only met this type in the caring, loving HSE, the awful awful system present in the wonderful saintly and scholarly shitty little country called Ireland.

what i also say to the HSe, many know you for what you are, its a game to you but serious for us.
we need you but you turn the other way with the budget concerns in one hand and the lawyers in the other.
but health is not one of the things you care a jot about.
I hope i live to see the day the HSE is disbanded, that the Irish, the good Irish will stand up and say 'enough is enough.' we deserve a good health care system for our citizens.

for those wounded, hurt and harmed and abused by the Health Service Executive, i have begun a solidarity page on Facebook called 'victims of the HSE.'
it will soon become a private page because its sensitive, and people there deserve that.
go on and join if you have a reason to, i am waiting to galvanise the troops, and help us help each other get through our lives in a vulnerable state but with strength and courage when we have to deal with our caring public health care representatives of the Irish State, free so they say from oppression, like hell we are free from oppression.

for the good in the state, a happy christmas and gather your wits about you for a gallumping new year, gather calm, peace, and rest for the rest is needed for the battles ahead, if you are a decent person in this state, stand up to the evils in it.

Christmas time thoughts 2014

Ann Kennedy

21st December 2014

US!

Christmas time.

Christmas is a funny time of year for me.  It always has been.

I am an identical twin, i was supposed to be born along with the sis on christmas day, but due to Mum being far too large and far too tiny the gynaecologist of the day said he didnt think Mum should suffer further.

He induced us.

She gave birth to two healthy (?) babies.  We were over 6lbs each.

Ann and Margaret british museum, circa 2009.
when i went to UK to see the specialist

Wrapped in cotton wool in 1952 on the 25th November my mum was full of emotions.  Firstly she didnt want girls she wanted boys, and as she told us later in life she felt she was going to produce ‘monsters.’

We feel now maybe she wasn’t half wrong.

Everything seemed normal to all around us as tiny twins.

But seven years on we found we were not.  We were deafened by the viral contact in the womn of German Measles, ‘rubella’ and so we are in fact Congenital Rubella Syndrome Adults.

Rubella isnt well understood now as its been deemed eradicated.

We did not have a good childhood.

Times were difficult, akin to what Ireland is experiencing now but without much technology to lighten the load for my mother.

We also were from a priveledged background and my  mother and father had nothing to show for that, simply because like every age, wealth is such a movable thing.

It went.

Mum and Dad valued education and felt it was the way forward for their children.  We were encouraged to be ‘achievers.’

All six children were individuals, very forthright, strong and feisty.

We were no different in many ways but growing up this took decades to actually surface.

We were deaf without hearing aids all our childhood days and we were far more deaf than ever imagined.

With such deafness its astonishing i ever completed schooling and come away with an honours leaving certificate.

Fast forward, i was a lonely child then and in some ways remain so today.

I spent all my days in school either belting a ball on the hockey pitch or crying in the library, but keeping away from other children was my main aim in life. they terrorified me simply because at the age of 57 i learned i had Asperger Syndrome.

i am outside St Toms' watching people come and go, hated the wards and the heat, over in UK for tests found - chronic muscle myopathy 2008

It shattered me during my journey in life, unknowing all about why i was so unhappy and so different, i loathed myself.  i succumbed to deep depression, binge drinking and chronic years of self loathing and self injury.

Decades spent in and out of mental hospital and no way getting further in life.

I was talented indeed and wrote childrens books, some winning book design awards and two being made into mini slots for children’s tv.   This childrens writing thing  is not unusual for people with Asperger Syndrome.

Also not unusual either,  i was vulnerable and young for my age and naieve.

I was sexually abused as a child and then again by a Marianist Order priest, when i came into contract with the now deceased Larry Hogan the singing layman of the 70’s.

Trapped in terror i amounted to little.

I spent all of my adult life struggling, in and out of psychiatric hospitals. I lived in social housing far away from the wealthy belt of Killiney where i grew up.

I had no friends and closed off from the world i painted in a studio after which i walked miles around the areas where i grew up.  With many a dog in my life i had these as complete and utter companions.

The family was never close . the meal on christmas day in times past was enchanting and glittering.

It was a formal affair of upper middle class standards.  Some part of me lived on that day in awe but in fear.

My christmas therefore is not that particularly happy and drenched with memories for me.

My life was enveloped in fear.

Getting crohns disease and having surgery in 2002 was the turning point.

Thinking i would not get through this i chatted with a psychiatrist at the hospital.

She found me engaging, intelligent and utterly surprised at the medication i was on and also the amount.

When i nearly died from surgery i decided to get a life.

I sold a family heirloom to the National Library of Ireland and received E7,000 for these art journals of my great aunt ginnie.

Furthermore i didnt really understand my aunt and the fact that the National Library had a considerable archive of hers there.

To my astonishment two members of the Library, the director and another brought her whole lifes work to my social housing unit and we poured over the archives all neatly conserved by the Library with tender loving care.

My aunt was single, her name was Jeannie Conan.

I think she came to me at the right time.  Also another famous Conan is a relative, he is of course, Sir Arthur Conan Doyle.

Three years of therapy, followed by an apology for ever being in psychiatry i managed to quit the drugs, quit the self injury and also quit the cigarettes and i can assure you, quite a feat.

The bigger feat being, i fought to join the world, late yes, but surely did.

I experimented with clothes, and found my love of dress and colour, i had always shorn my hair very short but now let it grow and i experimented with my feminine side.

I loved it.

I felt attractive, i felt confident.

There was no going back.

Unfortunately just as my oil painting was coming to a real maturity and i was exhibiting quite a bit, i became very ill indeed.

I forced the medics to have me sent to the UK to find out what was wrong with me, i did considerable researc myself to find a point that i could start on this particular journey as i studied my bloods as if i was a research scientist.  I wouldnt have got this far if i had not done this.

Certain things have been discovered but now after ten years i am closer to knowing than ever before.

I have recently returned from Newcastle UK where i was under the great Prof. Chinnery and met also Dr. Grainne Gorman.

Us twins, yes both of us became ill roughly at the same time  are now wheelchair users.

Circumstances in social housing changed and i was persuaded to ask for rehousing due to my disablility but it turned out a disaster and i was placed in danger.

Being shot at saw myself and my twin spend a very difficult few years sourcing a place to live.

We had to move out of my county of my birth, something asperger people do not cope well with.

The HSE Wicklow has not been good to me at all, this is documented and can be verified.

We struggle here.

mags my identical twin exhausted, with my maggie mai, the twin got more than a shock and a bargain when she came home to Ireland.  She is still in shock

When i think of my age and how little i have seen of the world and also of Ireland and yet see how far i have come i struggle with the idea of how to spend my dying days well.

To me its now a case of wanting badly to make up for lost time.

Vicky Park, Hackney London

For someone lost entirely to life, only visiting my twin in Hackney once a year and never leaving dun Laoghaire i have not experienced that much.

My first overseas holiday was this year to finland, following the experts at the Mitochondrial disease conference there, for i was still attempting to find out what was wrong with me, that trip has got me now on the brink of knowing.  My first holiday being at the age of 62, effectively.

But what do i do with no money, very poor health, no friends and an unsupportive family?  I write to Santa.

I would love to see Ireland.   All of it.

I dream of buying a camper van, or similar.

I dream of driving slowly and having a ball in nature for truely nature is what has held me all this time.

I dream of having no more struggles to get the health care needs met and i dream of some joy before i die.

Ah babe, i know you will be close to me in my sickness and poor health

when i got sick duchess was alive and stayed close to me too in my very poor health.  All just never came near me.

I have no proper wheelchair and my van is dying.

I am too, i am dying of a rare, (seemingly it could be rarer than i ever envisaged, after my last exit out of Ireland).

I need to move.

I want to get back to the county of my birth, Dun Laoghaire and feel at peace.

2010 before i left my county we had wonderful snow.  Here i am in the People's Park Dun Laoghaire, chihuahua safe from icy snow on poor little paws!

the Quickie Jive wheelchair
we feel would offer us everything when we decline further and presently.  this is the model we fight for now, for the past three years and more

To me my end days should be fun.

Camper van.

A bungalow near my twin slap in Dun Laoghaire where i should be, not here in Wicklow which i do not know and know no one and havent settled well at all.

Christmas now is a few days away.

People are dreaming and planning their new year.

I am dreaming of planning a chance for a decade (if god is willing and good) of fun and peace and joy, to experiement with travel and just ‘be’ rather than ‘struggle to be.’

My life has panned out and potted out not well.

But i was always ready for the moment of getting into a world i never understood and never will, i guess.

Nothing really stops  me.

But right now my dreams can never be fulfilled on a disabilty pension and in a world where people are not as caring as say in my mothers time or when i was younger either.

How can i became the princess of the cinderella story, who will never marry a prince or wear that wee slipper?

My dream is to travel chariot style in a camper van.

After all, i learnt to drive at 53years of age and i now drive an adapted van, not many would do that.

I post this off now to one or two places, like stuffing the Santa letter up the chimney to be found in a hundred years.

ana chi asleep!

Or place it in a good spot to be discovered and realisation to begin to happen.

My dream realised.

With my dear twin and my dogs, will someone give me a chance to have one decade out of maybe seven to be happy, free and loving life.

Ok then the chimney i chose is yours.

I await but lets hope not for one hundred years.  Bones do not drive camper vans well, nor does a skull have eyes to see.

Take care.

Ann kennedy

I live here because the sister who gave my mother german measles and gave us rubella viral infection died prematurely and my dad left us her house in dalkey.

She has through death given me a home.

Now i want my parents, my sister and my aunt to rubber stamp my final wish.

Bless them.

Bless my twin, i love you so much.

Please allow a blessing for me this christmas.

If santa gets wifi where he is, he can find me on my blog cos it looks like he is either about to read, has read or will not read.  HA.  He can sleigh along and leave his pressie via the comment box or PM.