sorry my supporters on my blog page.
i have not been writing much.
we have a situation you see, its pretty dire too.
I have been sick but alas you all know that much.
Alas you also know that i also have another situation and that is with my HSE care provision.
try as i might i cannot change this situation and its beginning to take its toll.
whether this is the intended response due to no response from the HSe i am not sure.
it does seem this way.
this is the trauma they want to create.
the PA's of the 'managers' all say it isnt, but i say it feels like it is!
try being so unwell and sick and disabled and FEEL but also KNOW you are abandoned?
try feel that feeling of isolation.
try thinking around the fact that no one visits, no one rings and no one cares.
try thinking about having no children, no sisters, no nephew and neices, no friends, no parents and no neighbours, you then can realise what it is to be both myself and my twin sister.
why has this actually happened you might say, its not that normal.
well no actually it isnt.
its not that we are abnormal, this isnt the case.
we are though different.
we would be classed as different and alot of it has to do with 'deafness.'
Deafness produces an individual that has a type of communication that is outside what most would understand.
the emphasis on word and language is different and it can all be veru loud and brusque.
underneath you have in fact two people aching for the laughs, just like anyone, the loves just like anyone and the banter just like everyone but it doesnt happen.
people find it tiring to have to repeat themselves mid conversation.
they find it irksome to see the difference that causes them to be cross.
cross because they lack understanding from the perspective of a deafened individual.
ha! i knew this too about my father, who became very deaf when elderly. it drove us all nuts.
he thought everything was absolutely fine!
he got angry at us getting angry.
he couldnt understand why he could not have the tv blaring.
'its not THAT loud' well , er, actually it is.
now thats saying something to twins who only have 30% hearing left.
he never answered when spoken to, walked away when you are speaking to him.
moved off when you were speaking to him.
never responded when you called him to din din, and caused someone to go looking for him.
he never answered the phone and that got left to someone else.
never answered the door, that too got left to someone else.
hardly ever laughed at a joke cos he never heard it in the first place.
never conversed at the dinner table and that was tough when it ended with only parents and deafies like my twin and myself.
it can make for strained relationships.
i guess all were happy when the tv was off, and we sat either asleep in the sitting room or reading a book, peace seemed then to reign, but normal discourse wasnt open to ye when dad was around but dad was old fgs.
so now us twins are deaf and we are alone.
the brusqueness we hated is there.
but not only is my chihuahua a marshmallow so too are my twin and i.
dying to please (the pun intended), and dying for the stroking.
it doesnt exactly come in spades.
ah, now on the other level of hse which was actually the title of this blog.
seek and search as i may i failed again to have an official of the hse return my call.
we remain, us twins with no physio, no wheelchairs, no ot service, no social worker, no psychological support no nuttin'
i spoke to John Hennessy's PA, (you wont get top brass, ever) just like you wont get the president or the thaoseach. she had remembered me from my phone call made months ago, he, John is the director of primary care services in ireland.
so the pa said she would talk to john this guy.
well, have i heard this before, yes.
i am going to keep a notebook of all i contact within the hse on a daily basis and the response i get. on one page i shall put the time, date and who i rang and on the other i shall put the response.
you can bet only the left side of the notebook will be filled.
it will be interesting too to note, who said they would contact and how many people both said this and get a tally of how many people you actually tried to communicate with, in say a month. about something that you needed.
lets set a task then.
i shall try and attempt get some movement for the wheelchair debacle, and i will document that alone and i will get back on here and tell you how it all went.
i have predicted the outcome before i start.
it will be where i start and as i started this.
like, here, as i type.
nothing will move further than this stance i can assure you.
if it does i shall promptly fall down and die, instantly and the HSE would love that.
one less to bother about and one less to provide a wheelchair too.
but this may be the sort of jokey side of things, it isnt that funny at all.
we do not get services, period. and no one really cares.
its also known within the disability services that the media too will not report on anything much to do with disability and especially if it pertains to adults.
they may get the three day wonder with the kiddies, but you can forget it when you contact media.
they aint that interested and they wont even bother returning your phone call either!
my twin tried recently, but she had the phone put down mid sentence.
that was it, out.
gone.
you know we must too be the only country that doesnt protest about injustice of its own people.
there are some areas that people do protest.
sexual abuse is case in point.
people get very aroused over this.
because there is an understanding here when there isnt if you are not disabled.
people also get very excited when disabled or sick children suffer.
but believe me most suffering is pretty much equal.
incomprehension of suffering has been cited in the instances of children suffering, but then children too have a magic set of thinking values.
they do have that to sustain them.
adults see far more mobid feelings around sickness pain and disability.
the wards in childrens hospitals, 'sing'
did anyone ever see a ward for adults 'sing' in the same way.
like murals and nurses all jovial and everyone pulling out all the stops, red noses and angel wings or the best plum pudding on the campus.
nope.
we the adults deal with it, sour and demour we deal with it, grim face we have to be that stoic cos 'ah jesus, fgs' will you forever stop moaning about everything.
well, i would if there was red noses around me making me laugh, or sugar with the medicine.
no sickness is about evened out amongst the age groups believe me.
but you dont do you.
so i didnt win on that but i rarely win on much.
i just dont win.
i want some red noses from the hse too, but they may think i mean bloodied.
they could be right.
there is such a thing as wanting to throttle some of these 'superior beings'.
well, no i dont think they are that. but they do.
so i do want to trottle.
i am waiting to die see, and there isnt much action from the hse to help me die in some kind of decent fashion.
my twin told me today of an individual who has liver cancer.
the hse would fund that over to the uk for treatment abroad but there is a six month waiting list.
he is on the verge of dying now.
so he has gone private and can ill afford this. but you would if its a case of life and death.
he is important to his family of young children.
but the hse dont see a triage system might work in this case, cos they dont think of this.
he is off now in uk and having the tests needed today.
i pray he gets a liver transplant or treatment or whatever. he wont get it here.
a guy in canada had a transplant and was out of the hospital within ten days and having now to report back only regularly yes, but not that regularly. he had the transplant was walking the next day and out almost by the end of a full week and a few days, i couldnt believe it.
i do know this, its a relative of a relative of a relative by a marriage along the way so i know this as fact.
not bloody ireland no.
defo.
Enda, do you read my blogs, so we a 'modern society? ' would you like to say that again, enda, third time lucky, ...'what are we?'....we are a modern society....'what are we?' ....we are a modern society....'what are we, er waiting for?' to be come a modern society.
not in my lifetime alas.
tweedledum and tweeledee we are here.
AWNYAH TODAYSAY Ann living in the Republic of Ireland and it is not a good thing. We have now ratified the EU convention on the rights of people with disabilities, yet we failed in ratifying the optional protocol, allowing us ability to make complaints to the EU under the convention, with little facility to do so in our own country. We go unheard in every sense of the word. This is unjust and leaves us more vulnerable and open to abuses. We are suffering. I am suffering.
Tuesday, December 3, 2013
Monday, November 18, 2013
queuing for beef at the local church and - the cous comes to town!
today was a mixed bag indeed.
an early start on the road to a shoe fitting appointment, to get there at nine to be told i had to wait til 2.30...but wait....there was a cancellation!
my new shoes fought so hard for via a senator John Whelan and Journal.ie are now found to be so disastrous that this second professional told me they are totally unsuitable for my types of disability.
but he said the hardest part was for me.....to fight to get a new pair.
remember i have deformed feet but now i could be waiting for a full year to be sanctioned a pair i can actually wear.
who is to blame over giving me a dreadful pair of brogues fgs?
can i make shoes?
no.
who makes shoes for disabled?
a person trained to make shoes for disabled?
should he/she be employed if two out of three professionals say, 'oopsie, nope, not right them there brogues not right for those there feet!'
if i could cost all this, and i think i will.
cost the hours spent fitting (at least five times).
cost of materials, salaries etc we will find that our request to save health service costs are not due to me, but those that give us this service.
this hasn't been a cost effective way of doing things, and yet i was told by two out of three that the shoes given are inferior and that's why i was made drive over 20miles five times and back to have them sorted, (in the first place).
On another cost saving venture i have to draw your attention to the fact that contrary to the Minister for Health, giving me an OT also over 20miles away is proving even less than beneficial.
she has made two journeys to me.
the first to get to know, ask what my needs are and to get back to me.
my needs were rather simple.
small items needed.
she came back.
small items not felt suitable and i was to sit in a chair rather than lie on the sofa.
but i want to lie on the sofa!
she drove 20miles to tell me that (phone call?)
also no bath seat, she forgot the measuring tape, last time - if she had asked i would have given her one of several.
and no mention of the cushion i lost when my wheelchair went into a wall.
oh, reciting the incident of the wheelchair today at the hospital i was met with an 'oh CHR...T'
I had also text my home help not to come as i would be at the foot clinic.
she came anyway and stuffed a note in the door.
yep.
anyway i wasn't best pleased and went weak at the knees.
why, cos i am sick of the stress of being sick.
the problems just seem to be LIVING.
trying to walk is LIVING.
trying to get things done is LIVING.
but all the time this can amount to phone calls after phone calls, stress of explaining explaining begging and more begging.
crying and more crying.
with no let up from the demands of trying to get the basics of needs met!
then i rang the disab advocate and told her i simply couldn't take anymore, bawling down the phone, sniffling and consumed with despair i whacked on crying' suddenly i noticed that no one was answering back.
my phone had gone dead probably a long while back.
i kinda giggled then at the absurdity of that.
she was saved!
by the wire.
or lack of it.
then i straightened a chair here and a chair there for my cous was a comin'
and i rarely see my cous.
so delighted.
she is the same age as myself and looked so so glamorous, oh wow cous if you read this it was the first thing i noticed.
yep.
healthy as friggin hell.
she wondered after a monologue did i not get tired of all things to do with health.
and i have thought on this too, (see above).
i am tired of all things to do with health.
but intensity to have to deal with it 24/7 you find that the record is on permanent stuck line.
it wont move forward nor back.
its stuck, round and round.
how long since i spoke of art or 'rt or photos or stuff, other.
long.
and then we spoke of the old fashioned typewriters and learning to type before we took up a more acceptable or illustrious occupation.
i roared at the memory of the training colleges.
she described it well on the old banger typewriters, with circular keys on a baby spring like mechanism.
we trained to change type writer ribbon, i bet the young 'uns are wondering what the hell i am talking about.
she then described photocopying in the men's toilet in a certain prestigious institution of ours.
because that where the light was, so one foot in the men's toilet to get the glimmer into where the photo copying machine was after - the lights went out, and they went out at the same hour everyday, so if you went over the time scale, darkness.
now what would you do today if everything went black - on the job?
it doesn't happen.
we can safely say the work conditions were not good but we saved the planet i guess, in our stringent use of electricity.
we were not exactly in the candle era, but close enough.
i remembered a certain firm in London where the metallurgist fell in love with an Irish temp typist. he who would kneel on the floor cutting out interesting pieces from the London papers on exhibitions etc for this woman here fresh from the typing pool before she launched into her fame of working on 'watership down.' the film.
bunny making.
the first telex i sent to south Africa after i learnt how to turn the machine on.
she enjoyed the chaos of that famous still famous Irish institution which had her putting foot in toilets to bring on the lights.
i was actually in a local hospital for the mentally compromised individuals when i got a job at the same place (~Ireland is very small) and the spin of the department i was in caused me to last not longer than two weeks.
chaos is one thing in the head but when it transcends that into the very physicality of a work environment, i could have well gone under entirely.
We both survived. Needless to say.
i recalled to her the day i nearly got run over by a Volkswagen beetle, beige in colour as i ran across the road with my typed papers belonging to the solicitor i typed for from 8.45 until 6.45 every day with an hour for lunch and every second Saturday for the full sum of wait for it...£14 and that's another insanity producing environment, about six inches away from a brown papered wall, pealing at the ceiling and i know for i looked up there often.
that's the office i had to sign a legal document in, at 18 and witness to someone making a Will.
when i asked what i should put down for my job description i was told 'Spinster"
yep, that's a job description in the 70's.
eat your heart out.
it wasn't exactly the good old days.
you have it plush for sure so never complain.
no such things as walk outs if the air conditioning wasn't on.
no such things as walk outs if you are discriminated by gender
nothing.
you stuck it or got out.
i then got thinking of the beef i queued for long after this.
the time i came back from London and my short lived live in the film business.
i was too shy to go to art college to study film.
i was afraid i would break cameras.
i came home to Ireland on the boat, sank into depression and ended in the local asylum.
to this day no one forgets.
cos the word 'psychiatric' is written on every file on me, so you can be a raving lunatic from the age of 18 to death, even if you were never.
and i was never - proven, got an apology for this but we do not have the personnel in Ireland to erase all the files where the word 'psychiatric' is written.
you can KILL someone and be legally entitled to have this fact erased after your prison sentence.
you have to wait til you are 75yrs of age or til your dead to have the word 'psychiatric' erased from an Irish personal file or medical file.
even if you went into that system for loneliness, shyness and terror of your fellow human being because you were just a shy, too young lass who didn't cope well with others, cos you freaked at the little confidence you have.
show me a puppy who whimpers at the noise of a fire cracker.
that's me.
cracker ed.
i deviated here a few paragraphs back.
beef.
well....probably horse, most probably horse.
i queued.
yep.
that's when i lived in an establishment where i had no running hot water and boiled a kettle and filled a basin and washed by the fire for four years.
baths, that was for keeping coal in, if you had one.
i didn't.
i didn't have a bathroom either.
but i queued for the beef (horse) and because a discussion came up on face book as to whether you gave a beggar a copper, was he genuine or fake, i thought of the beef.
we may not need to beg for food in Ireland - yet, but there are reasons why people beg.
whether you give to the beggar.
i would actually do so.
who would make a living from begging.
are you preventing him/her from getting the next rolls Royce if you denied him the price of a coffee?
do you resent that rolls Royce entrepreneur?
well, forget it.
you don't hold out the plastic cup for the coppers to try make enough for a rolls Royce.
a drink of wine, a hostel bed, a blankie or socks yes.
but not to be a millionaire.
i wouldn't be having intellectual crosswords on this one or chess for that matter.
its the state of the nation, education when it comes down to this sort of debate.
Live and let live.
think of the horse meet, the photo copiers in the men's toilets.
lights out at 6pm like it or not.
men kneeling on floors cutting out newspaper clippings out of love.
the local lunatic asylum one side of the road, the glam the other and both did meet.
the car for the people nearly running me down and saving me a life less spent.
and the fruits in the pudding of the stories i begot when nothing else.
not even shoes or wheelchairs.
and we still have the conversation around health ad nauseum.
because we are in dire times.
all of us.
beggars and beggars and beggars all.
an early start on the road to a shoe fitting appointment, to get there at nine to be told i had to wait til 2.30...but wait....there was a cancellation!
my new shoes fought so hard for via a senator John Whelan and Journal.ie are now found to be so disastrous that this second professional told me they are totally unsuitable for my types of disability.
but he said the hardest part was for me.....to fight to get a new pair.
remember i have deformed feet but now i could be waiting for a full year to be sanctioned a pair i can actually wear.
who is to blame over giving me a dreadful pair of brogues fgs?
can i make shoes?
no.
who makes shoes for disabled?
a person trained to make shoes for disabled?
should he/she be employed if two out of three professionals say, 'oopsie, nope, not right them there brogues not right for those there feet!'
if i could cost all this, and i think i will.
cost the hours spent fitting (at least five times).
cost of materials, salaries etc we will find that our request to save health service costs are not due to me, but those that give us this service.
this hasn't been a cost effective way of doing things, and yet i was told by two out of three that the shoes given are inferior and that's why i was made drive over 20miles five times and back to have them sorted, (in the first place).
On another cost saving venture i have to draw your attention to the fact that contrary to the Minister for Health, giving me an OT also over 20miles away is proving even less than beneficial.
she has made two journeys to me.
the first to get to know, ask what my needs are and to get back to me.
my needs were rather simple.
small items needed.
she came back.
small items not felt suitable and i was to sit in a chair rather than lie on the sofa.
but i want to lie on the sofa!
she drove 20miles to tell me that (phone call?)
also no bath seat, she forgot the measuring tape, last time - if she had asked i would have given her one of several.
and no mention of the cushion i lost when my wheelchair went into a wall.
oh, reciting the incident of the wheelchair today at the hospital i was met with an 'oh CHR...T'
I had also text my home help not to come as i would be at the foot clinic.
she came anyway and stuffed a note in the door.
yep.
anyway i wasn't best pleased and went weak at the knees.
why, cos i am sick of the stress of being sick.
the problems just seem to be LIVING.
trying to walk is LIVING.
trying to get things done is LIVING.
but all the time this can amount to phone calls after phone calls, stress of explaining explaining begging and more begging.
crying and more crying.
with no let up from the demands of trying to get the basics of needs met!
then i rang the disab advocate and told her i simply couldn't take anymore, bawling down the phone, sniffling and consumed with despair i whacked on crying' suddenly i noticed that no one was answering back.
my phone had gone dead probably a long while back.
i kinda giggled then at the absurdity of that.
she was saved!
by the wire.
or lack of it.
then i straightened a chair here and a chair there for my cous was a comin'
and i rarely see my cous.
so delighted.
she is the same age as myself and looked so so glamorous, oh wow cous if you read this it was the first thing i noticed.
yep.
healthy as friggin hell.
she wondered after a monologue did i not get tired of all things to do with health.
and i have thought on this too, (see above).
i am tired of all things to do with health.
but intensity to have to deal with it 24/7 you find that the record is on permanent stuck line.
it wont move forward nor back.
its stuck, round and round.
how long since i spoke of art or 'rt or photos or stuff, other.
long.
and then we spoke of the old fashioned typewriters and learning to type before we took up a more acceptable or illustrious occupation.
i roared at the memory of the training colleges.
she described it well on the old banger typewriters, with circular keys on a baby spring like mechanism.
we trained to change type writer ribbon, i bet the young 'uns are wondering what the hell i am talking about.
she then described photocopying in the men's toilet in a certain prestigious institution of ours.
because that where the light was, so one foot in the men's toilet to get the glimmer into where the photo copying machine was after - the lights went out, and they went out at the same hour everyday, so if you went over the time scale, darkness.
now what would you do today if everything went black - on the job?
it doesn't happen.
we can safely say the work conditions were not good but we saved the planet i guess, in our stringent use of electricity.
we were not exactly in the candle era, but close enough.
i remembered a certain firm in London where the metallurgist fell in love with an Irish temp typist. he who would kneel on the floor cutting out interesting pieces from the London papers on exhibitions etc for this woman here fresh from the typing pool before she launched into her fame of working on 'watership down.' the film.
bunny making.
the first telex i sent to south Africa after i learnt how to turn the machine on.
she enjoyed the chaos of that famous still famous Irish institution which had her putting foot in toilets to bring on the lights.
i was actually in a local hospital for the mentally compromised individuals when i got a job at the same place (~Ireland is very small) and the spin of the department i was in caused me to last not longer than two weeks.
chaos is one thing in the head but when it transcends that into the very physicality of a work environment, i could have well gone under entirely.
We both survived. Needless to say.
i recalled to her the day i nearly got run over by a Volkswagen beetle, beige in colour as i ran across the road with my typed papers belonging to the solicitor i typed for from 8.45 until 6.45 every day with an hour for lunch and every second Saturday for the full sum of wait for it...£14 and that's another insanity producing environment, about six inches away from a brown papered wall, pealing at the ceiling and i know for i looked up there often.
that's the office i had to sign a legal document in, at 18 and witness to someone making a Will.
when i asked what i should put down for my job description i was told 'Spinster"
yep, that's a job description in the 70's.
eat your heart out.
it wasn't exactly the good old days.
you have it plush for sure so never complain.
no such things as walk outs if the air conditioning wasn't on.
no such things as walk outs if you are discriminated by gender
nothing.
you stuck it or got out.
i then got thinking of the beef i queued for long after this.
the time i came back from London and my short lived live in the film business.
i was too shy to go to art college to study film.
i was afraid i would break cameras.
i came home to Ireland on the boat, sank into depression and ended in the local asylum.
to this day no one forgets.
cos the word 'psychiatric' is written on every file on me, so you can be a raving lunatic from the age of 18 to death, even if you were never.
and i was never - proven, got an apology for this but we do not have the personnel in Ireland to erase all the files where the word 'psychiatric' is written.
you can KILL someone and be legally entitled to have this fact erased after your prison sentence.
you have to wait til you are 75yrs of age or til your dead to have the word 'psychiatric' erased from an Irish personal file or medical file.
even if you went into that system for loneliness, shyness and terror of your fellow human being because you were just a shy, too young lass who didn't cope well with others, cos you freaked at the little confidence you have.
show me a puppy who whimpers at the noise of a fire cracker.
that's me.
cracker ed.
i deviated here a few paragraphs back.
beef.
well....probably horse, most probably horse.
i queued.
yep.
that's when i lived in an establishment where i had no running hot water and boiled a kettle and filled a basin and washed by the fire for four years.
baths, that was for keeping coal in, if you had one.
i didn't.
i didn't have a bathroom either.
but i queued for the beef (horse) and because a discussion came up on face book as to whether you gave a beggar a copper, was he genuine or fake, i thought of the beef.
we may not need to beg for food in Ireland - yet, but there are reasons why people beg.
whether you give to the beggar.
i would actually do so.
who would make a living from begging.
are you preventing him/her from getting the next rolls Royce if you denied him the price of a coffee?
do you resent that rolls Royce entrepreneur?
well, forget it.
you don't hold out the plastic cup for the coppers to try make enough for a rolls Royce.
a drink of wine, a hostel bed, a blankie or socks yes.
but not to be a millionaire.
i wouldn't be having intellectual crosswords on this one or chess for that matter.
its the state of the nation, education when it comes down to this sort of debate.
Live and let live.
think of the horse meet, the photo copiers in the men's toilets.
lights out at 6pm like it or not.
men kneeling on floors cutting out newspaper clippings out of love.
the local lunatic asylum one side of the road, the glam the other and both did meet.
the car for the people nearly running me down and saving me a life less spent.
and the fruits in the pudding of the stories i begot when nothing else.
not even shoes or wheelchairs.
and we still have the conversation around health ad nauseum.
because we are in dire times.
all of us.
beggars and beggars and beggars all.
Friday, November 15, 2013
remember....lest you forget....
yes i did.
i met the hse official.
remember the one i told you i was about to?
she came.
with nothing.
this was a visit about sofa risers to make it easier for me to get out of a sofa where i spend a good deal lying down.
and about a small chair for inside the bath.
the sofa risers were discussed on her last visit.
she then drove 32 miles back to her office and decided to discuss this with her colleague.
she then came back to me, 32miles and told me the discussion took place and it was decided that as my wrists are quite weak then there was no point helping me out of the sofa as i had nothing with arms and needed to be in a chair!
if you have arthritic knees then, it surely helps a lot to get you in a position to raise further by pressing the body weight against the sofa.
but you cannot do this from so low down.
this had me in disbelief that they could even work this one out and sort of belief it the theory of it all.
so i was to abandon resting up, and sit in a chair.
that's the solution then.
i asked about the bath chair.
well, ah.
she forgot her measuring tape last time and so she was going to measure this this time.
now if we think of the economics of all this.
the round trips of over 50miles a visit and the petrol costs of this, not to mention how many she could be visiting in her own catchment area and not travelling to another would cost for the risers themselves and more besides.
so they do this next.
but this too is not even cost effective, its laughable in its expense due to pettiness and nothing else.
the poor lady then had to hear my despair, cos i just broke down.
the hse has that effect on me.
i asked what hope i had of getting the famous wheelchair if they rejected my wish for risers to the sofa to get me off of it?
we then had a question and answer session about the wheelchair.
i refused an assessment but this was looking very like one.
'no no just wanted to chat to you about this.'
that's an assessment.
i have had five already and this now is a sixth.
she seemed not to be aware that my neurologist had asked the hse to sort the issues of a proper wheelchair for me.
she hadn't seen the letters he had sent.
nor did she seem to understand who he was or what his name was.
she then asked me for permission to speak with my GP to find out more about my conditions.
well that's all in my files going back like and i have been sick for a long time.
the GP is relatively new and i hardly see him so what more can he tell her.
well she wanted to know about my medication.
what has that got to do with it.
was it because i was cracking up and heaving with bawling tears and maybe she wanted to see if i was on anti-depressants and so can call this a nutcase here.
i read her mind instantly and said by the way i am very very depressed but it wont be anti-D's that can cure this. it could be a better service, a kinder hse and a wheelchair.
i asked her to leave because the crying was now uncontrollable and her very presence was reminding me of the hatred i felt for the austerity measures the way they treat you and the poor little grey haired lady bottles on out and left me in a heap.
she to drive back to wicklow over 30 miles away and me to lie down on the sofa.
its no wonder the sick and disabled do not cry out and are heard.
because they have no say, they can effect no change in their lives at the local levels and so they do not bother.
its all at the highest levels now. the gang of four really. the minister for health who has decimated the health service and then the taoiseach and tanaiste and finally the minister with special responsibility for disability.
but after that you cannot get the word in edge ways.
remarking to another after a further discussion on yesterday i told her, sure this is called 'a dictatorship' this isn't democracy at all!
its Haiti all over, its the hated Cuba, its Che Guevara and everyone hated all this.
but no Ireland is lauded as the good little country of Europe.
we are no dictators. we may not be, but someone is and its at a higher level than little Ireland, its at the core of Bonn and not bahola.
i met the hse official.
remember the one i told you i was about to?
she came.
with nothing.
this was a visit about sofa risers to make it easier for me to get out of a sofa where i spend a good deal lying down.
and about a small chair for inside the bath.
the sofa risers were discussed on her last visit.
she then drove 32 miles back to her office and decided to discuss this with her colleague.
she then came back to me, 32miles and told me the discussion took place and it was decided that as my wrists are quite weak then there was no point helping me out of the sofa as i had nothing with arms and needed to be in a chair!
if you have arthritic knees then, it surely helps a lot to get you in a position to raise further by pressing the body weight against the sofa.
but you cannot do this from so low down.
this had me in disbelief that they could even work this one out and sort of belief it the theory of it all.
so i was to abandon resting up, and sit in a chair.
that's the solution then.
i asked about the bath chair.
well, ah.
she forgot her measuring tape last time and so she was going to measure this this time.
now if we think of the economics of all this.
the round trips of over 50miles a visit and the petrol costs of this, not to mention how many she could be visiting in her own catchment area and not travelling to another would cost for the risers themselves and more besides.
I am not impressed
but the hse decides because they are aggrieved with me for winning my bath back when they wanted to reconstruct my own home for their economic cost cutting ideas and failed, they were going to make it less easy for me to ask to see an OT or even visit one.so they do this next.
but this too is not even cost effective, its laughable in its expense due to pettiness and nothing else.
the poor lady then had to hear my despair, cos i just broke down.
the hse has that effect on me.
i asked what hope i had of getting the famous wheelchair if they rejected my wish for risers to the sofa to get me off of it?
we then had a question and answer session about the wheelchair.
i refused an assessment but this was looking very like one.
'no no just wanted to chat to you about this.'
that's an assessment.
i have had five already and this now is a sixth.
she seemed not to be aware that my neurologist had asked the hse to sort the issues of a proper wheelchair for me.
she hadn't seen the letters he had sent.
nor did she seem to understand who he was or what his name was.
she then asked me for permission to speak with my GP to find out more about my conditions.
well that's all in my files going back like and i have been sick for a long time.
the GP is relatively new and i hardly see him so what more can he tell her.
well she wanted to know about my medication.
what has that got to do with it.
was it because i was cracking up and heaving with bawling tears and maybe she wanted to see if i was on anti-depressants and so can call this a nutcase here.
i read her mind instantly and said by the way i am very very depressed but it wont be anti-D's that can cure this. it could be a better service, a kinder hse and a wheelchair.
i asked her to leave because the crying was now uncontrollable and her very presence was reminding me of the hatred i felt for the austerity measures the way they treat you and the poor little grey haired lady bottles on out and left me in a heap.
she to drive back to wicklow over 30 miles away and me to lie down on the sofa.
its no wonder the sick and disabled do not cry out and are heard.
because they have no say, they can effect no change in their lives at the local levels and so they do not bother.
its all at the highest levels now. the gang of four really. the minister for health who has decimated the health service and then the taoiseach and tanaiste and finally the minister with special responsibility for disability.
but after that you cannot get the word in edge ways.
remarking to another after a further discussion on yesterday i told her, sure this is called 'a dictatorship' this isn't democracy at all!
its Haiti all over, its the hated Cuba, its Che Guevara and everyone hated all this.
but no Ireland is lauded as the good little country of Europe.
we are no dictators. we may not be, but someone is and its at a higher level than little Ireland, its at the core of Bonn and not bahola.
Wednesday, November 13, 2013
Running tigers, running wild and meeting the HSE - today!
it was an early start.
i woke long before 6am with extreme pain in my arms, my elbows, wrists and hands.
I let the chihuahuas out for a piddle.
I thought of the day ahead.
All i had to do.
Most of it regarding health and housing.
I am to meet a HSE official.
when my twin spoke at a social work conference as a group of enthusiastic health workers gathered to change the ethos of what it means to be in the Health Care System.
Most of them of course were social workers.
they were kind, intelligent and put it to us straight.
they Socked it.
A lecturer for Liverpool University told us clearly and plainly that there was NO NEED for the austerity measures now taking place.
How he explained it was through statistical analysis of both Ireland, the UK and the EU>
It has to be said, i was convinced.
We do have the money to spend on HEALTH but Europe, possibly Angel Merkel has decided where money should go and how it should get there.
it should go to maybe arms, money deposits and storing it.
but not spending it on Health.
Your health and mine.
so it is too expensive for a powered wheelchair for a sick person.
it is seemingly not.
the money give to health spending is going down all the time.
i have to wonder why?
is it so that after your good explosive healthy young life of economic productivity to your country then you should bail out by government decree of euthanasia and you are no more worth it than a piece of dirt.
the way you die depends on yourself, your family and of course the health service of the day.
it will be by decree and not by personal choice.
you will surely be 'outted' if you get sick or disabled.
you are not worth the money they spend on you.
we are as Hitler had said 'the money eaters.'
We have a growing fascism arising now from the ashes.
as more and more vulnerable and poor people rebel against austerity, start blaming the person in the wheelchair who has got the social housing unit.
the Pakistani who manages to do well in a small local supermarket.
the Filipinos who work our hospital and are resented by the local nurses who understand that they are 'taking our jobs'
all this causing a rising of anger and its all caused by the division of wealth.
when we run a country based on money alone we have a dangerous policy of causing people to forget that they are actually - human.
and to be human is to retain another part of their being.
the soul.
it isn't much use to anyone if a single person accrues money for paying taxes and spending on themselves but then forgets all else.
they too will be unhappy for they too will find that the ingredient most wanted is and wait for it....love.
Love cannot be bought.
but we had been told this since children.
it simply cannot.
we have to unit in a bond with another.
we have also to give and to share.
and we have to use the term in its fullest meaning.
we have to Love enough to care enough to forgive, forget and to embrace.
I was invited to meet a little man born to my adored 'Irish Wheelchair Assoc. helper Magda, whom i adore.
remember too, that when you fall into the heap of despair, illness or tragedy that the only thing, the only ideal that will lift you out of it is another looking you in the eye and making that statement that they will be there for you as long as you need them.
both then receive.
one receives strength to try and regain his or her feet and the other possibly gets all the gains, for they then feel that not only have they helped, but they feel a better human being and can move on and forward with immense sort of joy and pride.
i woke at 6 in pain. for yesterday i dug for Ireland.
belting out pain and anguish on my garden and creating i hope a masterpiece.
i use a mattock i think its called. a big heavy thing.
whacking wood, whacked hardened soil.
whacking and squishing up my lips in effort, still dressed in my jammies and with my wrists and ankles braced up.
it was not that useful to me, all the strapping.
i remained in agony last night, from the neck down.
the arms, the muscles screaming.
the elbows and wrists, screaming.
the palms of my hands hurting and on fire, so much so that i could hardly hold a cup.
i have muscle wasting and very visible muscle wasting.
i should not be whacking anything.
the day i saw how much the muscles had gone down was a shock. taken a year ago, and the muscles have wasted further.
but i was in pain.
thinking of the tiger who came back to meet and embrace those who took him out of a Harold's, holdall i cried.
It was the love you see.
a tiger cannot offer anything to a human in terms of economic improvement, indeed he is dependent and gives no services back to the giver other than, yep, love.
he didn't forget.
you do not forget love.
meeting my newly born great niece, she is beautiful.
I am thinking of my family but most of all the trauma of the years just past i wake thinking of the HSE.
again, yet again it was the HSE.
i woke to the tune of the distaste in my mouth of the hse and the depression of knowing that i meet one of them today.
None by the way have ever been anything but nice to me.
but they have er, budgetary constraints.
the worker on the ground has to deliver me news of how the austerity has made them reign in their services and cause us misery.
it cannot be nice for them.
but certainly as an Irish person i have no where to protest because no one will really listen will they.
i need a powered chair, and a proper one, a good one and a comfortable one.
we have to fight for this my friends and having given back a scooter to try and appease the gods of management who require the evidence of their cost cutting plan i await the return of kindness as my gesture meant one thing only.
i cannot take the HSE and their present tactics any longer.
i need a meeting of minds that i will, be cared for and 'well'
that i will be considered 'human' and 'cared for well.'
Can I be provided for at the end of my life.
not fearing them, hating them and dreaming of them through trauma.
not going to therapy and working through trauma instigated by the hse.
all the trauma i am presently trying to come to terms with in therapy is the trauma of the loss of family and what the HSE has done to me.
both of these are the cause of pain for me.
its the cause of me banging dirt with arms that should not, can not and are unable for hitting the ground with mattocks.
the reason being i am starved of kindness and love.
i am a dislocated individual without another.
A rare visit from a great nephew and niece gives me the space to 'look outside the box' and enjoy an encounter i will remember for a very long time.
there is no one.
no one.
there isn't the person who will pick up the phone and ask how i am.
it never happens.
ever.
tell me please if you read this post how could you live through a life with absolutely no one in it?
well i have.
all of it.
decades of it.
i had for love a dog.
the tiger in my life.
but i am looking for the human tiger.
the one who sees through all of this.
who will come forward and reward another for the ability of the other to offer more than money.
this is my tiger, she gives to me, and she gives to many. She is my love giver and can offer nothing but this to me, the state or to another human being.
i have no money.
but can and would and could offer far more to humanity than money.
Lets say I am behind the bushes in Africa waiting for the tiger to come and find me, recognise me as the person who saved them as a tiny animal in a cage and will come out and greet and meet and pad the face with huge paws.
if you read this and are a HSE official recognise the words i write and what you have done to me.
If you are a government official recognise that its not only me you have injured by your policies of cost cutting, cost savings and austerity measures.
if it is family, recognise that i need you.
The tiger has come out of the woods, found you hiding away, shut away, blind and old, she gives what she can and this is called my friends - LOVE.
if it is friends, and others remember if you are down on your knees in despair, you will know only too well that you would look to the stronger to help you gain strength.
i am down on my knees looking for the stronger to help me gain strength.
i woke long before 6am with extreme pain in my arms, my elbows, wrists and hands.
I let the chihuahuas out for a piddle.
I thought of the day ahead.
All i had to do.
Most of it regarding health and housing.
I am to meet a HSE official.
when my twin spoke at a social work conference as a group of enthusiastic health workers gathered to change the ethos of what it means to be in the Health Care System.
Most of them of course were social workers.
they were kind, intelligent and put it to us straight.
they Socked it.
A lecturer for Liverpool University told us clearly and plainly that there was NO NEED for the austerity measures now taking place.
How he explained it was through statistical analysis of both Ireland, the UK and the EU>
It has to be said, i was convinced.
We do have the money to spend on HEALTH but Europe, possibly Angel Merkel has decided where money should go and how it should get there.
it should go to maybe arms, money deposits and storing it.
but not spending it on Health.
Your health and mine.
so it is too expensive for a powered wheelchair for a sick person.
it is seemingly not.
the money give to health spending is going down all the time.
i have to wonder why?
is it so that after your good explosive healthy young life of economic productivity to your country then you should bail out by government decree of euthanasia and you are no more worth it than a piece of dirt.
the way you die depends on yourself, your family and of course the health service of the day.
it will be by decree and not by personal choice.
you will surely be 'outted' if you get sick or disabled.
you are not worth the money they spend on you.
we are as Hitler had said 'the money eaters.'
We have a growing fascism arising now from the ashes.
as more and more vulnerable and poor people rebel against austerity, start blaming the person in the wheelchair who has got the social housing unit.
the Pakistani who manages to do well in a small local supermarket.
the Filipinos who work our hospital and are resented by the local nurses who understand that they are 'taking our jobs'
all this causing a rising of anger and its all caused by the division of wealth.
when we run a country based on money alone we have a dangerous policy of causing people to forget that they are actually - human.
and to be human is to retain another part of their being.
the soul.
it isn't much use to anyone if a single person accrues money for paying taxes and spending on themselves but then forgets all else.
they too will be unhappy for they too will find that the ingredient most wanted is and wait for it....love.
Love cannot be bought.
but we had been told this since children.
it simply cannot.
we have to unit in a bond with another.we have also to give and to share.
and we have to use the term in its fullest meaning.
we have to Love enough to care enough to forgive, forget and to embrace.
I was invited to meet a little man born to my adored 'Irish Wheelchair Assoc. helper Magda, whom i adore.
remember too, that when you fall into the heap of despair, illness or tragedy that the only thing, the only ideal that will lift you out of it is another looking you in the eye and making that statement that they will be there for you as long as you need them.
both then receive.
one receives strength to try and regain his or her feet and the other possibly gets all the gains, for they then feel that not only have they helped, but they feel a better human being and can move on and forward with immense sort of joy and pride.
i woke at 6 in pain. for yesterday i dug for Ireland.
belting out pain and anguish on my garden and creating i hope a masterpiece.
i use a mattock i think its called. a big heavy thing.
whacking wood, whacked hardened soil.
whacking and squishing up my lips in effort, still dressed in my jammies and with my wrists and ankles braced up.
it was not that useful to me, all the strapping.
i remained in agony last night, from the neck down.
the arms, the muscles screaming.
the elbows and wrists, screaming.
the palms of my hands hurting and on fire, so much so that i could hardly hold a cup.
i have muscle wasting and very visible muscle wasting.i should not be whacking anything.
the day i saw how much the muscles had gone down was a shock. taken a year ago, and the muscles have wasted further.
but i was in pain.
thinking of the tiger who came back to meet and embrace those who took him out of a Harold's, holdall i cried.
It was the love you see.
a tiger cannot offer anything to a human in terms of economic improvement, indeed he is dependent and gives no services back to the giver other than, yep, love.
he didn't forget.
you do not forget love.
meeting my newly born great niece, she is beautiful.I am thinking of my family but most of all the trauma of the years just past i wake thinking of the HSE.
again, yet again it was the HSE.
i woke to the tune of the distaste in my mouth of the hse and the depression of knowing that i meet one of them today.
None by the way have ever been anything but nice to me.
but they have er, budgetary constraints.
the worker on the ground has to deliver me news of how the austerity has made them reign in their services and cause us misery.
it cannot be nice for them.
but certainly as an Irish person i have no where to protest because no one will really listen will they.
i need a powered chair, and a proper one, a good one and a comfortable one.
we have to fight for this my friends and having given back a scooter to try and appease the gods of management who require the evidence of their cost cutting plan i await the return of kindness as my gesture meant one thing only.
i cannot take the HSE and their present tactics any longer.
i need a meeting of minds that i will, be cared for and 'well'
that i will be considered 'human' and 'cared for well.'
Molly
Look into the eyes of a sad horse that is rocking in its stable out of boredom and a need to run free. we do this to beasts that can be manipulated to serve our needs, but this is also the same as that which we do to others, we crucify without the need to.Can I be provided for at the end of my life.
not fearing them, hating them and dreaming of them through trauma.
not going to therapy and working through trauma instigated by the hse.
all the trauma i am presently trying to come to terms with in therapy is the trauma of the loss of family and what the HSE has done to me.
both of these are the cause of pain for me.
its the cause of me banging dirt with arms that should not, can not and are unable for hitting the ground with mattocks.
the reason being i am starved of kindness and love.
i am a dislocated individual without another.
there is no one.
no one.
there isn't the person who will pick up the phone and ask how i am.
it never happens.
ever.
tell me please if you read this post how could you live through a life with absolutely no one in it?
well i have.
all of it.
decades of it.
i had for love a dog.
the tiger in my life.
but i am looking for the human tiger.the one who sees through all of this.
who will come forward and reward another for the ability of the other to offer more than money.
this is my tiger, she gives to me, and she gives to many. She is my love giver and can offer nothing but this to me, the state or to another human being.
i have no money.
but can and would and could offer far more to humanity than money.
Lets say I am behind the bushes in Africa waiting for the tiger to come and find me, recognise me as the person who saved them as a tiny animal in a cage and will come out and greet and meet and pad the face with huge paws.
if you read this and are a HSE official recognise the words i write and what you have done to me.
If you are a government official recognise that its not only me you have injured by your policies of cost cutting, cost savings and austerity measures.
if it is family, recognise that i need you.
I can and will 'lift up' but can you return the gift of caring to your older relative?'
if it is friends, and others remember if you are down on your knees in despair, you will know only too well that you would look to the stronger to help you gain strength.
i am down on my knees looking for the stronger to help me gain strength.
Friday, November 8, 2013
Salsa, Hula Jazzy and JiVE plus troika
it is such a catchy headline eh?
Well jazz around the troika, lets Hula.
do i really know these sort of steps?
No.
whoever figured the names of the next state of art wheelchairs, thought well about all this.
these dances are fast, sexy and fun.
and the appliances who have names of these dances are in fact wheelchairs.
Power...to the people...wheelchairs.
and i mean it.
these are no clapped out whiners, that barely make the tiny slope in a full car park after volunteering to collect for those in wheelchairs receiving PA's.
whine, 'you can do it, c'mon, you can do it.' giggle giggle, but with a bit of fear.
'er, can it.'
and the wheel no fell off, this time.
and the control panel of my twins, no fell off....this time.
knobs, buttons, whirrs and blinks, crash and bang and bailouts.
the wheelchairs.
clapped, out.
so too the country, bailed out to the troika, the banks and the eggits in my country who stood idly by and let it happen.
Yes, i say. Lauded were we who did this magnificent deed.
Oh lauded in the EU federation of nations.
but who will see fall out.
we do, in our clapped machines, the euthanasia that now is even contemplated, and carried out without knowledge across the globe, once decried by civilized nations less than a century ago.
people were hung, shot and imprisoned for the schemes we build monuments for, lest not we forget.
-the gas chambers.
but what is happening now is only a sophisticated version and done by stealth.
we kill off many every year, in every country and no one goes to jail.
we do this because the world does now think that disabled people, old, sick, learning disabled and mentally ill, have any part in a thriving economic drive to produce, money and to have lifestyles that are burning up the atmosphere so fast we wont have a world to even exist in in a couple of centuries.
so we make hell and pay hugely for debt and we kill in the name of 'money eaters, rule not OK.'
How many of you had enough bile, corrupt minds, power, greed and ability to take out 'your own country' that is, the one you lived in, had fun in, created in and produced the next generation in?
did you personally have it in the bank to deal and wheel away the country.
to play Russian roulette to such a degree we lost.
bang bang out.
we are dead.
I do not believe we shall recover.
economically we will get back possibly to where we were when we became independent.
we have struggled this far for nothing, absolutely nothing.
your mother and father worked for nothing.
we burnt the country on the face of their graves.
we sold out.
meanwhile we face crisis in Ireland.
our biggest being in health.
not wealth.
wealth is nothing, has no meaning when you cannot sit up in bed, cannot sleep from pain, cannot walk for a myriad of reasons, cannot travel to offer your gifts to the economic table as in work for the bread on your table.
if you sell a country down the Swanee as we have done, we are all going now to be a bloody sick country.
this is fact and proven.
we have not enough doctors, nurses, clinics, specialities, community care, mental health care (they are the bottom of the heap, heh come get em.). seriously though, we are in effect putting our most vulnerable through hell on earth.
to live a hell on earth.
did the parents of vulnerable people not feel happy once to have a child, happy to feed and educate and happy enough to love that child.
not any more, the powers are thinking fast and hard to rid your child, if it is different, useless and disabled.
NO ONE is different.
people are just people.
we are all different if we look at those closest to us.
who are we to say that a sick person cannot live as well as another?
we all acting the gods now.
who said that because i personally am sick and disabled that i do not deserve life itself.
I do not deserve to be in community.
to enjoy fashion, food, nature, literature, arts and creativity.
to enjoy what i can offer to the whole spectrum of colours that add up to the world of enrichment.
who said i had nothing at all to offer so should not live and will not live and then decide to make the very life i do have one of misery, disadvantage, out in the cold and frightened.
worried about medications, therapies, devices and aids i need, my twin needs and many need.
who bothers enough anyway that we exist?
These questions are very raw but have to be faced.
We have to face these because if we do not, maybe the next generation of artists, will be designing the monument to the terrors of troika, killing vulnerable and sick, all because of money.
A generation will come who will reflect on all this and be horrified that any human being can do this to another.
So lets join the jive.
i mean jive.
did you see the Quickie Jive.
many do not think of the bodily comfort of movement, its so automatic.
do you think of how your back should be supported, how the legs should be placed and when and how to hold the head up and still be able to create the movement into the world.
some have to think of this.
we think Quickie because life is so short.
60yrs is the age we start prepping the funeral, the prayers over the wilted body.
60yr olds start to think of what is best of their lives to live behind, and what is best to burn out.
60yr olds start to think that life now is for living and fun, because there is so little of it left.
60yr olds prepare for that day that they will be forced out of their homes to the boxes and cages we call lyrically the 'home for the elderly.'
In my terms these should be 'the cages for the forgotten, the useless and the ones waiting to die.'
this is not a fashionable subject but also not a fashionable state of affairs.
I personally want to stay active.
but it will mean an ability to move and move well.
pain is a killer to the psyche and the soul.
when you have it you will understand.
but forced pain, as in FORCED pain, because you cannot afford, and others will not provide a simple but expensive devise, which would mean the difference between sitting at home all day and every day to getting out and about and being with the people.
a chair, electrified for living, not for death.
when twins need such an item it is unusual .
it isn't usual for such to happen two individuals at the end of their lives, when they are so close.
because it seems rare that this should happen.
it is rare and we are just that.
but you would think that we are just simply not worth it.
if we were worth it, two years of battle should have provided something better than bangers from hell.
we need better, deserve better but how.
i don't mind saying it.
i am desperate.
i am cynical of living, the world, its ethos and its ability to care.
certainly two years living now in a personal turmoil of dynamic i never imagined would happen at this age.
but we are a kindly nation still.
we all do realise our country is ONE OF the best to live in in at least Europe, because of our humour and ability to care, (er, am i right here)?
WE SEE THIS AS BEGGING, BUT WHAT OPTIONS ARE LEFT IN THE DAYS OF 'TROIKA AND AUSTERITY?'
so we have to hope and pray somehow.
but time is running out for me and my twin.
we have looked at all the options.
we have tried.
but still two years later we are riding the waves in bangers.
to try, to implore a bit better or a bit more.
i now put this on a blog and wonder if it wise, good bad or shall everyone just be as indifferent as we have pretty much experienced in the circles we most closely mingle in.
Well jazz around the troika, lets Hula.
do i really know these sort of steps?
No.
whoever figured the names of the next state of art wheelchairs, thought well about all this.
these dances are fast, sexy and fun.
and the appliances who have names of these dances are in fact wheelchairs.
Power...to the people...wheelchairs.
and i mean it.
these are no clapped out whiners, that barely make the tiny slope in a full car park after volunteering to collect for those in wheelchairs receiving PA's.
whine, 'you can do it, c'mon, you can do it.' giggle giggle, but with a bit of fear.
'er, can it.'
and the wheel no fell off, this time.
and the control panel of my twins, no fell off....this time.
knobs, buttons, whirrs and blinks, crash and bang and bailouts.
the wheelchairs.
clapped, out.
so too the country, bailed out to the troika, the banks and the eggits in my country who stood idly by and let it happen.
Yes, i say. Lauded were we who did this magnificent deed.
Oh lauded in the EU federation of nations.
but who will see fall out.
we do, in our clapped machines, the euthanasia that now is even contemplated, and carried out without knowledge across the globe, once decried by civilized nations less than a century ago.
people were hung, shot and imprisoned for the schemes we build monuments for, lest not we forget.
-the gas chambers.
but what is happening now is only a sophisticated version and done by stealth.
we kill off many every year, in every country and no one goes to jail.
we do this because the world does now think that disabled people, old, sick, learning disabled and mentally ill, have any part in a thriving economic drive to produce, money and to have lifestyles that are burning up the atmosphere so fast we wont have a world to even exist in in a couple of centuries.
so we make hell and pay hugely for debt and we kill in the name of 'money eaters, rule not OK.'
How many of you had enough bile, corrupt minds, power, greed and ability to take out 'your own country' that is, the one you lived in, had fun in, created in and produced the next generation in?
did you personally have it in the bank to deal and wheel away the country.
to play Russian roulette to such a degree we lost.
bang bang out.
we are dead.
I do not believe we shall recover.
economically we will get back possibly to where we were when we became independent.
we have struggled this far for nothing, absolutely nothing.
your mother and father worked for nothing.
we burnt the country on the face of their graves.
we sold out.
meanwhile we face crisis in Ireland.
our biggest being in health.
not wealth.
wealth is nothing, has no meaning when you cannot sit up in bed, cannot sleep from pain, cannot walk for a myriad of reasons, cannot travel to offer your gifts to the economic table as in work for the bread on your table.
if you sell a country down the Swanee as we have done, we are all going now to be a bloody sick country.
this is fact and proven.
we have not enough doctors, nurses, clinics, specialities, community care, mental health care (they are the bottom of the heap, heh come get em.). seriously though, we are in effect putting our most vulnerable through hell on earth.
to live a hell on earth.
did the parents of vulnerable people not feel happy once to have a child, happy to feed and educate and happy enough to love that child.
not any more, the powers are thinking fast and hard to rid your child, if it is different, useless and disabled.
NO ONE is different.
people are just people.
we are all different if we look at those closest to us.
who are we to say that a sick person cannot live as well as another?
we all acting the gods now.
who said that because i personally am sick and disabled that i do not deserve life itself.
I do not deserve to be in community.
to enjoy fashion, food, nature, literature, arts and creativity.
to enjoy what i can offer to the whole spectrum of colours that add up to the world of enrichment.
who said i had nothing at all to offer so should not live and will not live and then decide to make the very life i do have one of misery, disadvantage, out in the cold and frightened.
worried about medications, therapies, devices and aids i need, my twin needs and many need.
who bothers enough anyway that we exist?
These questions are very raw but have to be faced.
We have to face these because if we do not, maybe the next generation of artists, will be designing the monument to the terrors of troika, killing vulnerable and sick, all because of money.
A generation will come who will reflect on all this and be horrified that any human being can do this to another.
So lets join the jive.
i mean jive.
did you see the Quickie Jive.
many do not think of the bodily comfort of movement, its so automatic.
do you think of how your back should be supported, how the legs should be placed and when and how to hold the head up and still be able to create the movement into the world.
some have to think of this.
we think Quickie because life is so short.
60yrs is the age we start prepping the funeral, the prayers over the wilted body.
60yr olds start to think of what is best of their lives to live behind, and what is best to burn out.
60yr olds start to think that life now is for living and fun, because there is so little of it left.
60yr olds prepare for that day that they will be forced out of their homes to the boxes and cages we call lyrically the 'home for the elderly.'
In my terms these should be 'the cages for the forgotten, the useless and the ones waiting to die.'
this is not a fashionable subject but also not a fashionable state of affairs.
I personally want to stay active.
but it will mean an ability to move and move well.
pain is a killer to the psyche and the soul.
when you have it you will understand.
but forced pain, as in FORCED pain, because you cannot afford, and others will not provide a simple but expensive devise, which would mean the difference between sitting at home all day and every day to getting out and about and being with the people.
a chair, electrified for living, not for death.
when twins need such an item it is unusual .
it isn't usual for such to happen two individuals at the end of their lives, when they are so close.
because it seems rare that this should happen.
it is rare and we are just that.
but you would think that we are just simply not worth it.
if we were worth it, two years of battle should have provided something better than bangers from hell.
I DIDN'T AND STILL DO NOT BELIEVE THIS WAS RIGHT. THE FEAR STILL HANGS LIKE A CLOUD
who lose body parts and are failing faster than those who sit on them.
we need better, deserve better but how.
i don't mind saying it.
i am desperate.
i am cynical of living, the world, its ethos and its ability to care.
certainly two years living now in a personal turmoil of dynamic i never imagined would happen at this age.
but we are a kindly nation still.
we all do realise our country is ONE OF the best to live in in at least Europe, because of our humour and ability to care, (er, am i right here)?
WE SEE THIS AS BEGGING, BUT WHAT OPTIONS ARE LEFT IN THE DAYS OF 'TROIKA AND AUSTERITY?'
so we have to hope and pray somehow.
but time is running out for me and my twin.
we have looked at all the options.
we have tried.
but still two years later we are riding the waves in bangers.
to try, to implore a bit better or a bit more.
i now put this on a blog and wonder if it wise, good bad or shall everyone just be as indifferent as we have pretty much experienced in the circles we most closely mingle in.
MOVEMENT AND ACTION IS JUST THAT - MOVEMENT AND ACTION....TO BE PART OF COMMUNITY AND PARTICIPANTS IN THE FUTURE, A LITTLE FOR WHAT IS LEFT BEHIND, AND WHO IS LEFT AFTER WE ARE GONE.
Tuesday, October 22, 2013
How to die well...in Ireland
......Notice.....Notice.....Notice.....after the next five blogs i shall become ......'AnnLive'
this blog will develop from there...please share...
Awnyah will become 'AnnLive'
Now....on more serious matters.
the time ahead is less than the time that has past.
and this is an important message for the young, not so young, the old and the nearly old...and shall i say....the dying.
when you ALL consider this, it doesnt sound too hot a place to be does it?
it is not. but does it have to be BAD?
Does it have to be TERRRIBLE?
does it have to be 'long drawn out 'tooth-pulling' style?
or can it be amazingly quick but enjoyable?
or can it be long and enjoyable?
what sets it all up to be the former and latter.
People....Humans....People....Humans.....TOGETHER.
the day i truly captured the feeling of kindred spirit in loneliness and isolation also entrapment against our will.
As humans, we are intrinsically, a pack animal.
we are a species that survives simply by being in groups and surviving the ups and downs, in groups.
We cannot solve any problem alone.
we cannot survive on our own.
to die well...and we will all have to die...many feel that they are very cynical and begin to hate living, hate life and the people in their lives, for the hurt and pain built up over decades.
true, that can be there in spades.
so too, can a society's ethos of care.
whether we can do this well, together.
society, including the care services, and wait for this biggie 'FAMILY'
we absolutely need both the social services, the care, the human professional touch and we need family who draw on their love, resourcefulness and togetherness in times of need.
but also family do one other thing.
they add the comfort element in our lives.
we read and we hear of the increasingly lonely in society.
we abandon the elderly as if they are lepers.
we abandon the disabled as fake, frauds, and wasters and scroungers.
we abandon the sibling, cousin for crossing the line, once too often.
for being different, for not doing what they ask of us.
when we are finished what we have done, is abandon the humans ..they are all then gone and we are alone...for the first time in our lives....we are facing the biggest challenge of our lives...alone.
dying.
and before dying what can we do as humans.
this shoe that held a foot of a human - has a history....
the people who have to struggle daily with their 'histories' and 'past' and alienation.
the only way we can sort of make sense of any of this is to go out and resolve the issues amongst those that are still alive....before it is too late.
then we find that their is a comfort there to be found in the crevices of hurt and pain.
because there is a big understanding that wasnt there before, but is now.
why challenge anyone more than they have to be?
why add to the challenge of dying by adding abuse, carelessness, noisiness and accusations and also why challenge the joy that may be found in the comfort of family by shutting away, shutting out and walking away from the very ones who need you most?
why not even try to shape up this challenge of dying and dying well...in Ireland?
the family one sunday on the Burma road, minus two siblings and mother
can you draw the family together again...
especially as within the band and strand you now live in no one is under 60!
how do you entice them to see other sides to the picture, reframe and constitute an understanding amongst the living.
so that living well in order to die well means just that.
embracing whats left.
but not to do it all alone and many are and many are doing this more and more.
i said above that we need to draw close because all in our band are over 60yrs.
but in order to draw close you must embrace those whose band age is 6yrs. and thus we have once again youth and elderly together.
Living well in society is to experience youth and the young and to experience their vibrancy.
nothing rubs off as 'feel good factor' as the vibrancy of the young.
the elderly need this.
and so too do the middle age.
Ireland is in a deep depression.
everyone is suffering really badly.
it isnt a time for attack on anyone now.
its time to band together in a bandage.
we need to tape old wounds up.
and live through this well and reasonably happy and comfortably.
this isnt a state of affairs that requires even a copper.
it requires LOVE, or Luv in spades.
whatever way you chose to demonstrate it.
across the way from me is a 87yr old lady and opposite is her boy friend who is 92 and both are single and living alone.
all they have for the comfort in their end days is the telly.
and the phone (they chose to cut that sort of extra funding there for the contact)
they are so lonely.
if you do not know this, go tap on their door and say hello.
instant welcome and starving for the contact.
families live here too and are all around.
but each lives within their own house and in this part down here, people dont mix that well.
there is a reserve.
a lonely bench at Our Lady's Hospice Harold's Cross
Dublin.
but families too may be feeling lonely.
and we are lonely when one thing is absent.
Love, or Luv.
when that is there so is lonliness.
nothing can take that away.
dogs.
telly.
gardening.
decor.
driving.
writing.
artwork.
goodwork.
all work.
some play.
cannot take away lonliness.
only one thing can.
Love.
or
Luv.
and
Family.
I am dying.
before you i am dying.
you may not even know it.
or believe it.
but tis true.
the time i have could be cut tomorrow.
as the good god almighty decides, it is now going to be either quick or slow, but thats silly to even say that.
one way i will be gone soon.
the other way my dying will be a disintegrating slowly, burning down like a flickering candle flame.
Do not say such stupid things as:
Do not say that, you look so well, how on earth can you be thinking of dying.
- i can, because i am!
do not say such stupid things as:
Oh god, she is once in a wheelchair and then walking, she is far less disabled then she makes out to be.
this is such a daft bloody thing to say...
how do you know?
do you know me?
have you had an indepth conversation with me to determine this?
unless you have then shut trap because it ain't so.
there are far more disabilities out there then one which requires the wheelchair.
now your homework for the week or days before we meet again, if ever is this.
google now...'what famous person is living with crohns disease'
also google...'what famous person is living with sjogrens syndrome'
and what famous person is living with fibromyalgia, parkinsonsism (also some with parkinson's disease), also generalised dystonia, and also muscular dystrophy and myopathy.
find out what famous person finds acquired deafness to be like.
and also Dame Judi Dench on her thoughts about having macular degeneration.
why do i give you this homework....because i have all of these in one bundle!!! thats why.
if you can relate to a famous person and what they say about any of these diseases then maybe you can start to relate to your sister and i am the sister.
not only am i a sibling within a family.
i write this blog for all who tap in here.
to make a bit of a difference so some may see that they too are not that alone for there is a person like me out there, maybe that gives some small comfort.
that struggle isnt uniquely your own. its universal.
it may not be starvation, or war but outside these calamities within communities there are major pockets of misery, pain, lonliness and isolation.
being outside starvation and war, there is the possibility for change for the resources are less thrreatening.
Love and Luv being one.
togetherness being another.
family being another
community
people
not...to die alone in ireland...but to live well until then, and then die with Love. Luv.
this blog will develop from there...please share...
Awnyah will become 'AnnLive'
Now....on more serious matters.
the time ahead is less than the time that has past.
and this is an important message for the young, not so young, the old and the nearly old...and shall i say....the dying.
when you ALL consider this, it doesnt sound too hot a place to be does it?
it is not. but does it have to be BAD?
Does it have to be TERRRIBLE?
does it have to be 'long drawn out 'tooth-pulling' style?
or can it be amazingly quick but enjoyable?
or can it be long and enjoyable?
what sets it all up to be the former and latter.
People....Humans....People....Humans.....TOGETHER.
NO ONE CAN DO THIS ALL...ALONE.
IF YOU THINK THAT NO ONE ELSE MATTERS THEN YOU ARE DECEIVING YOURSELVES AND IN A STATE OF DENIAL AND DELUSIONAL.
As humans, we are intrinsically, a pack animal.
we are a species that survives simply by being in groups and surviving the ups and downs, in groups.
We cannot solve any problem alone.
we cannot survive on our own.
to die well...and we will all have to die...many feel that they are very cynical and begin to hate living, hate life and the people in their lives, for the hurt and pain built up over decades.
true, that can be there in spades.
so too, can a society's ethos of care.
whether we can do this well, together.
society, including the care services, and wait for this biggie 'FAMILY'
we absolutely need both the social services, the care, the human professional touch and we need family who draw on their love, resourcefulness and togetherness in times of need.
but also family do one other thing.
they add the comfort element in our lives.
we read and we hear of the increasingly lonely in society.
we abandon the elderly as if they are lepers.
we abandon the disabled as fake, frauds, and wasters and scroungers.
we abandon the sibling, cousin for crossing the line, once too often.
for being different, for not doing what they ask of us.
when we are finished what we have done, is abandon the humans ..they are all then gone and we are alone...for the first time in our lives....we are facing the biggest challenge of our lives...alone.
dying.
and before dying what can we do as humans.
this shoe that held a foot of a human - has a history....
the people who have to struggle daily with their 'histories' and 'past' and alienation.
the only way we can sort of make sense of any of this is to go out and resolve the issues amongst those that are still alive....before it is too late.
then we find that their is a comfort there to be found in the crevices of hurt and pain.
because there is a big understanding that wasnt there before, but is now.
why challenge anyone more than they have to be?
why add to the challenge of dying by adding abuse, carelessness, noisiness and accusations and also why challenge the joy that may be found in the comfort of family by shutting away, shutting out and walking away from the very ones who need you most?
why not even try to shape up this challenge of dying and dying well...in Ireland?
the family one sunday on the Burma road, minus two siblings and mother
can you draw the family together again...
especially as within the band and strand you now live in no one is under 60!
how do you entice them to see other sides to the picture, reframe and constitute an understanding amongst the living.
so that living well in order to die well means just that.
embracing whats left.
but not to do it all alone and many are and many are doing this more and more.
i said above that we need to draw close because all in our band are over 60yrs.
but in order to draw close you must embrace those whose band age is 6yrs. and thus we have once again youth and elderly together.
Living well in society is to experience youth and the young and to experience their vibrancy.
nothing rubs off as 'feel good factor' as the vibrancy of the young.
the elderly need this.
and so too do the middle age.
Ireland is in a deep depression.
everyone is suffering really badly.
it isnt a time for attack on anyone now.
its time to band together in a bandage.
we need to tape old wounds up.
and live through this well and reasonably happy and comfortably.
this isnt a state of affairs that requires even a copper.
it requires LOVE, or Luv in spades.
whatever way you chose to demonstrate it.
across the way from me is a 87yr old lady and opposite is her boy friend who is 92 and both are single and living alone.
all they have for the comfort in their end days is the telly.
and the phone (they chose to cut that sort of extra funding there for the contact)
they are so lonely.
if you do not know this, go tap on their door and say hello.
instant welcome and starving for the contact.
families live here too and are all around.
but each lives within their own house and in this part down here, people dont mix that well.
there is a reserve.
a lonely bench at Our Lady's Hospice Harold's Cross
Dublin.
but families too may be feeling lonely.
and we are lonely when one thing is absent.
Love, or Luv.
when that is there so is lonliness.
nothing can take that away.
dogs.
telly.
gardening.
decor.
driving.
writing.
artwork.
goodwork.
all work.
some play.
cannot take away lonliness.
only one thing can.
Love.
or
Luv.
and
Family.
I am dying.
before you i am dying.
you may not even know it.
or believe it.
but tis true.
the time i have could be cut tomorrow.
as the good god almighty decides, it is now going to be either quick or slow, but thats silly to even say that.
one way i will be gone soon.
the other way my dying will be a disintegrating slowly, burning down like a flickering candle flame.
Do not say such stupid things as:
Do not say that, you look so well, how on earth can you be thinking of dying.
- i can, because i am!
do not say such stupid things as:
Oh god, she is once in a wheelchair and then walking, she is far less disabled then she makes out to be.
this is such a daft bloody thing to say...
how do you know?
do you know me?
have you had an indepth conversation with me to determine this?
unless you have then shut trap because it ain't so.
there are far more disabilities out there then one which requires the wheelchair.
now your homework for the week or days before we meet again, if ever is this.
google now...'what famous person is living with crohns disease'
also google...'what famous person is living with sjogrens syndrome'
and what famous person is living with fibromyalgia, parkinsonsism (also some with parkinson's disease), also generalised dystonia, and also muscular dystrophy and myopathy.
find out what famous person finds acquired deafness to be like.
and also Dame Judi Dench on her thoughts about having macular degeneration.
why do i give you this homework....because i have all of these in one bundle!!! thats why.
if you can relate to a famous person and what they say about any of these diseases then maybe you can start to relate to your sister and i am the sister.
not only am i a sibling within a family.
i write this blog for all who tap in here.
to make a bit of a difference so some may see that they too are not that alone for there is a person like me out there, maybe that gives some small comfort.
that struggle isnt uniquely your own. its universal.
it may not be starvation, or war but outside these calamities within communities there are major pockets of misery, pain, lonliness and isolation.
being outside starvation and war, there is the possibility for change for the resources are less thrreatening.
Love and Luv being one.
togetherness being another.
family being another
community
people
Sunday, October 20, 2013
journey's end with a chronic illness doubled in having an identical twin.
my twin and i are disabled and very unwell.
today i will try and capture what it is like to see a loved one suffer and to try and start a fresh life in a new town so far away from where i had lived.
this has so many strands its even hard to think straight.
where shall i begin with this.
Sunday dinner maybe?
as good a place as any.
Yes, it was my turn to set the table and do the Sunday dinner. I wasn't that great and collected during the week but glad to say a simple meal put together with a lot of love and decorum was well received and we had a pleasant chat.
but tainted there, was 'Loss.'
I saw it today in my twins demeanour.
the saddened eyes and the bit of quietness that i am not that fond of.
SHE lost a lot coming back to Ireland.
I cannot fully comprehend how it must have felt.
Being away for over forty years she had always spoken of 'coming home.'
she wanted this.
to see and smell the sea and to catch up on the family, see the next generation more often and be part of 'family.'
My twin had lived in Hackney, the East End of London UK.
she lived on the fifth floor and 58steps up.
there was no lift.
There she padded out for forty years, tried to get the education that wasn't available here and try to forge a life that certainly in the 70's was not available here.
Tenacity, pain, loneliness and endurance was the order of the day.
the easing away horrible thoughts and the terror that was within, a very young person leaving home at 17yrs, couldn't have been easy and wasn't at all.
No, its not the same as today for when the young do this now, they are of braver stuff and more worldly and confident.
i am sure though because of this maybe more is expected in the 'adult' sense, but most do have an inner core of self value, we didn't.
i could be wrong.
the struggle in London wasn't easy for many here to understand.
i saw it most as i visited most and it was a struggle, different but nonetheless a struggle.
this side of the coin was kept firmly from the preying eyes of those she held dear and didn't want to either upset or couldn't allow see that maybe at times the struggle was too much.
those times existed.
the yearning for home was to yearn to come back with enough reserve to enjoy and explore Ireland and to be healthy enough to capture a true feeling of 'home' and being where she should be, 'home.'
that didn't happen.
she came home, yes with the enthusiasm. but this was quickly quashed.
Ireland was in a chaos equal to that of the 70's.
her twin sister had also moved to a social housing unit from hell.
both moved for the same reason.
both were ill and both were beginning to suffer in a mystifying way.
Again the empathy and sympathy from who we thought might have it to spare, was non existent.
the help never came.
the love never came.
the exhaustion set in.
her return was a tough and steep learning curve.
the dynamic of understanding a twin, for both twins now as near neighbours rather than as once a year sibling 'love-ins,' was baffling for both.
its very different, and we were floored by this unexpectedness.
forthy years was a lifetime to learn how to cope as best we could.
her ways were not mine and for her too, she found grappling with this difference very difficult.
this dynamic saw us at times torn apart in anger and bitterness toward each other.
resentment too and lack of understanding and - severe shock.
we knew one thing though, for all of it, we loved each other very much and that was not what was questioned.
we simply didn't know each other.
but then we didn't also know what was in store in health, in Ireland and in family.
it was such a time of flux.
as we both tried to settle in our new homes things quickly soured and got dangerous.
I was placed badly in a social housing unit that actually put my life in danger.
being shot at would do it i have to say.
i was shot at.
and i had a lot happen that nearly saw me in a mental institution.
i nearly cracked under the stress and strain of isolation in a community of alcoholics. being abused by a cleric when i was vulnerable would cause alarm to me placed within a male enclave, a single woman alone with a disability.
Mags helped me out of that hell when there wasnt one other person who physically offered
no one was making many moves to get me to safety.
so my twin and i had to make this move.
it was ghastly.
before we could come to terms with our personal relationships, we had to bond together fast and quickly to get me out of a situation i simply couldn't stay in.
but the alarm being too, we couldn't live together but needed to be close and we absolutely knew this.
everything was taken, again finance would never stretch for same again.
so where were we to go?
the help for the decision making, the shifting and the organisation was - nil.
instead, as i mentioned at the Sunday dinner we shared today it was dreadful, we now were in HELL.
there wasn't another word that could adequately describe the next few years.
the notion of family to have us 'in sheltered accommodation' was the only notion.
nothing about what we felt we needed or wanted.
it was the easy option.
it was what middle class do...they turn the other way and are, unhelpful.
Sheltered accommodation in the Ireland of today is the same as 'dying cages.'
you are given a bed, a room painted magnolia which you cannot change and you may get your food.
but that's it.
no pets allowed (we both had dogs).
no redecoration, and in some we visited a limited amount of nails in the walls for memento pictures.
this wasn't what we needed or wanted at not yet 60yrs of age.
Margaret wanted or i felt she wanted to be part of Ireland and live in Ireland as equal and as a person with a chance to experience.
not to be put away for convenience.
at times now, my twin does feel maybe she would find it easier.
this isn't the easy way but i do know, it the far more normal way.
it isn't right to coral human beings in stale and empty boxes of sterility with no art and joy or love or tending.
it is no more than a prison and a sentence, a long one.
you chose that and there isn't any going back.
it was bitterly cold as we started to pack up proby
family seemed to resent that i managed to persuade my twin that we could do better than the sheltered accommodation.
i was called all sorts of things and completely 'outted' by family and am still.
even one close relative saying 'i wish you were dead.'
i was stirring trouble of the status quo.
we want you in sheltered accommodation' but i didn't and no i said and no i meant it.
i wasn't being put away.
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Also very tough was leaving the home that my dear sister had and which we jointly inherited but it was too small for two and we couldnt have done it, we knew this, family thought otherwise, we still believe as others do, it was the right thing to do.
we had to move for economic reasons.
we couldn't afford to stay in our birth county.
the hurt and bitterness and upset this caused me was profound.
i had spent 60yrs there and loved every blade of grass in it.
this was the cruel fate of mine and foisted on me by the council and also the lack of ability of the HSE to see that i was safe in my own county.
i have had to suffer that, the alienation from family and a disconnect in my new environment, that i hope to god will change with time.
my twin has had to deal with the shock of illness, disability and family she yearned for and found non existent.
at least in the form she felt was there but discovered wasn't.
so we sat of a Sunday attempting to experience the joy that i put on the table with love and twin enjoyed as best she could, broken isn't a word we would use easily because neither would ever admit to this.
but we are.
we are shattered and profoundly traumatised.
there isn't one good thing that happened when it came to human beings in the past six years.
what a species we are.
the love my twin deserved on coming home was not there. she is devastated.
it has to have been the toughest thing both physically, mentally, psychologically and emotionally to be doing what i did then, a major move away from my county, all because i was shot at and had no option
the way i was treated and how i was regarded has injured both of us profoundly as we love each other with unshaken love and loyalty.
we are traumatised and unwell.
we are now facing a lonely and sadder end than either ever anticipated.
i write this out of love of one individual who had sad eyes today facing me at the dinner table.
if it matters at all, i wish to say i love my twin and it hurts to see how much she is hurting.
If a person reads this and knows me and my twin sister, look upon us as who we are.
incredible.
we did so much to make a compromise but we did it alone.
we had little finance, no family helping us with shifting, encouragement, viewing houses or dealing with estate agents, solicitors, surveyors or other.
we were offered little advice in house hunting by anyone.
we were offered no support at all in our new county and were utterly wiped by the HSE who caused us further harm, unspeakable harm.
we wanted more than this.
we wanted to be embraced with understanding, with family.
we wanted a connectedness now, for we have little time left.
we wanted to experience love, and joy NOW, for we never had it.
we didn't want to be sad or hurt or traumatised.
but there is no getting away from it, we are.
when, i ask, is the tide going to change.
when will someone start the healing process say, lets take, within family.
within family to turn from 'we cannot abide you.'
to 'lets see if it can get better, lets all try.'
i am so willing.
but it takes two for this healing and start off.
but right now it does feel very much like as if my twin and self are on an island within an island.
we are only the two of us. together holding each other with the little strength we have and can muster.
but we want a bit more because this is very very tough indeed.
this is extending that first move toward anyone who knows me or us, all. everyone.
to see us as very very sick, there isn't a doubt there, if you do not see that then you are in denial.
we do need comfort at this point in our lives, not disharmony.
not hatred, distrust, loathing and abandonment.
we have been dealt a very cruel deck of cards.
trying to make light of something that wasn't very funny at all.
it was so so tough, we took everything, simply because not a penny could be spared for buying anything again.
of all, of all who could have done the exact opposite we have been put through the mill, by our own family.
we want the family back, in total, in harmony and with a lot of love on all sides.
the twins.
the conditions we suffer are:
mitochondrial disease
muscle wasting
severe deafness
cataracts
inability to walk far
severe arthritis,
crohns disease
ceoliac disease
primary sjogrens syndrome
lupus
hypothyroidism
deformed feet
dyscalculia
poor vision
brain damage
and personality traits that are clearly and definitely due to such bad hearing from the start that learning was impacted in a negative way.
we had no hearing aids for over twenty five years of our formative years.
this my friends is the educated way of seeing our start.
you cannot do most things well if you have almost total deafness. science and psychology had now determined the importance of hearing in the shaping of personality, social interaction and connecting with others.
especially when facility was not there to compensate for this, as there is nowadays.
personality and deafness are very strongly linked.
there is nothing wrong with either.
we are good, and kind and fun people to be around, if its allowed in a good way. we are deaf though. very.
this, isn't living as we have it now.
mags i hope you are OK, i know you were left home feeling poorly and have headed for bed.
i love you more than words can ever say.
Mum, Dad and Louise are watching over us.
i am only down the road.
take care.
we are OK.
very OK.
gifts for the children of my social housing enclave, the children who will have very few options and chances. I loved them.
in the first flush of enthusiasm My dear twin lights her first every coal fire, in her first ever own home.
we shall survive!
today i will try and capture what it is like to see a loved one suffer and to try and start a fresh life in a new town so far away from where i had lived.
this has so many strands its even hard to think straight.
where shall i begin with this.
Sunday dinner maybe?
as good a place as any.
Yes, it was my turn to set the table and do the Sunday dinner. I wasn't that great and collected during the week but glad to say a simple meal put together with a lot of love and decorum was well received and we had a pleasant chat.
but tainted there, was 'Loss.'
I saw it today in my twins demeanour.
the saddened eyes and the bit of quietness that i am not that fond of.
SHE lost a lot coming back to Ireland.
I cannot fully comprehend how it must have felt.
Being away for over forty years she had always spoken of 'coming home.'
she wanted this.
to see and smell the sea and to catch up on the family, see the next generation more often and be part of 'family.'
My twin had lived in Hackney, the East End of London UK.
she lived on the fifth floor and 58steps up.
there was no lift.
There she padded out for forty years, tried to get the education that wasn't available here and try to forge a life that certainly in the 70's was not available here.
Tenacity, pain, loneliness and endurance was the order of the day.
the easing away horrible thoughts and the terror that was within, a very young person leaving home at 17yrs, couldn't have been easy and wasn't at all.
No, its not the same as today for when the young do this now, they are of braver stuff and more worldly and confident.
i am sure though because of this maybe more is expected in the 'adult' sense, but most do have an inner core of self value, we didn't.
i could be wrong.
the struggle in London wasn't easy for many here to understand.
i saw it most as i visited most and it was a struggle, different but nonetheless a struggle.
this side of the coin was kept firmly from the preying eyes of those she held dear and didn't want to either upset or couldn't allow see that maybe at times the struggle was too much.
those times existed.
the yearning for home was to yearn to come back with enough reserve to enjoy and explore Ireland and to be healthy enough to capture a true feeling of 'home' and being where she should be, 'home.'
that didn't happen.
she came home, yes with the enthusiasm. but this was quickly quashed.
Ireland was in a chaos equal to that of the 70's.
her twin sister had also moved to a social housing unit from hell.
both moved for the same reason.
both were ill and both were beginning to suffer in a mystifying way.
Again the empathy and sympathy from who we thought might have it to spare, was non existent.
the help never came.
the love never came.
the exhaustion set in.
her return was a tough and steep learning curve.
the dynamic of understanding a twin, for both twins now as near neighbours rather than as once a year sibling 'love-ins,' was baffling for both.
its very different, and we were floored by this unexpectedness.
forthy years was a lifetime to learn how to cope as best we could.
her ways were not mine and for her too, she found grappling with this difference very difficult.
this dynamic saw us at times torn apart in anger and bitterness toward each other.
resentment too and lack of understanding and - severe shock.
we knew one thing though, for all of it, we loved each other very much and that was not what was questioned.
we simply didn't know each other.
but then we didn't also know what was in store in health, in Ireland and in family.
it was such a time of flux.
as we both tried to settle in our new homes things quickly soured and got dangerous.
I was placed badly in a social housing unit that actually put my life in danger.
being shot at would do it i have to say.
i was shot at.
and i had a lot happen that nearly saw me in a mental institution.
i nearly cracked under the stress and strain of isolation in a community of alcoholics. being abused by a cleric when i was vulnerable would cause alarm to me placed within a male enclave, a single woman alone with a disability.
Mags helped me out of that hell when there wasnt one other person who physically offered
no one was making many moves to get me to safety.
so my twin and i had to make this move.
it was ghastly.
before we could come to terms with our personal relationships, we had to bond together fast and quickly to get me out of a situation i simply couldn't stay in.
but the alarm being too, we couldn't live together but needed to be close and we absolutely knew this.
everything was taken, again finance would never stretch for same again.
so where were we to go?
the help for the decision making, the shifting and the organisation was - nil.
instead, as i mentioned at the Sunday dinner we shared today it was dreadful, we now were in HELL.
there wasn't another word that could adequately describe the next few years.
the notion of family to have us 'in sheltered accommodation' was the only notion.
nothing about what we felt we needed or wanted.
it was the easy option.
it was what middle class do...they turn the other way and are, unhelpful.
Sheltered accommodation in the Ireland of today is the same as 'dying cages.'
you are given a bed, a room painted magnolia which you cannot change and you may get your food.
but that's it.
no pets allowed (we both had dogs).
no redecoration, and in some we visited a limited amount of nails in the walls for memento pictures.
this wasn't what we needed or wanted at not yet 60yrs of age.
Margaret wanted or i felt she wanted to be part of Ireland and live in Ireland as equal and as a person with a chance to experience.
not to be put away for convenience.
at times now, my twin does feel maybe she would find it easier.
this isn't the easy way but i do know, it the far more normal way.
it isn't right to coral human beings in stale and empty boxes of sterility with no art and joy or love or tending.
it is no more than a prison and a sentence, a long one.
you chose that and there isn't any going back.
it was bitterly cold as we started to pack up probyfamily seemed to resent that i managed to persuade my twin that we could do better than the sheltered accommodation.
i was called all sorts of things and completely 'outted' by family and am still.
even one close relative saying 'i wish you were dead.'
i was stirring trouble of the status quo.
we want you in sheltered accommodation' but i didn't and no i said and no i meant it.
i wasn't being put away.
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Also very tough was leaving the home that my dear sister had and which we jointly inherited but it was too small for two and we couldnt have done it, we knew this, family thought otherwise, we still believe as others do, it was the right thing to do.
we had to move for economic reasons.
we couldn't afford to stay in our birth county.
the hurt and bitterness and upset this caused me was profound.
i had spent 60yrs there and loved every blade of grass in it.
this was the cruel fate of mine and foisted on me by the council and also the lack of ability of the HSE to see that i was safe in my own county.
i have had to suffer that, the alienation from family and a disconnect in my new environment, that i hope to god will change with time.
my twin has had to deal with the shock of illness, disability and family she yearned for and found non existent.
at least in the form she felt was there but discovered wasn't.
so we sat of a Sunday attempting to experience the joy that i put on the table with love and twin enjoyed as best she could, broken isn't a word we would use easily because neither would ever admit to this.
but we are.
we are shattered and profoundly traumatised.
there isn't one good thing that happened when it came to human beings in the past six years.
what a species we are.
the love my twin deserved on coming home was not there. she is devastated.
it has to have been the toughest thing both physically, mentally, psychologically and emotionally to be doing what i did then, a major move away from my county, all because i was shot at and had no option
the way i was treated and how i was regarded has injured both of us profoundly as we love each other with unshaken love and loyalty.
we are traumatised and unwell.
we are now facing a lonely and sadder end than either ever anticipated.
i write this out of love of one individual who had sad eyes today facing me at the dinner table.
if it matters at all, i wish to say i love my twin and it hurts to see how much she is hurting.
If a person reads this and knows me and my twin sister, look upon us as who we are.
incredible.
we did so much to make a compromise but we did it alone.
we had little finance, no family helping us with shifting, encouragement, viewing houses or dealing with estate agents, solicitors, surveyors or other.
we were offered little advice in house hunting by anyone.
we were offered no support at all in our new county and were utterly wiped by the HSE who caused us further harm, unspeakable harm.
we wanted more than this.
we wanted to be embraced with understanding, with family.
we wanted a connectedness now, for we have little time left.
we wanted to experience love, and joy NOW, for we never had it.
we didn't want to be sad or hurt or traumatised.
but there is no getting away from it, we are.
when, i ask, is the tide going to change.
when will someone start the healing process say, lets take, within family.
within family to turn from 'we cannot abide you.'
to 'lets see if it can get better, lets all try.'
i am so willing.
but it takes two for this healing and start off.
but right now it does feel very much like as if my twin and self are on an island within an island.
we are only the two of us. together holding each other with the little strength we have and can muster.
but we want a bit more because this is very very tough indeed.
this is extending that first move toward anyone who knows me or us, all. everyone.
to see us as very very sick, there isn't a doubt there, if you do not see that then you are in denial.
we do need comfort at this point in our lives, not disharmony.
not hatred, distrust, loathing and abandonment.
we have been dealt a very cruel deck of cards.
trying to make light of something that wasn't very funny at all.
it was so so tough, we took everything, simply because not a penny could be spared for buying anything again.
of all, of all who could have done the exact opposite we have been put through the mill, by our own family.
we want the family back, in total, in harmony and with a lot of love on all sides.
the twins.
the conditions we suffer are:
mitochondrial disease
muscle wasting
severe deafness
cataracts
inability to walk far
severe arthritis,
crohns disease
ceoliac disease
primary sjogrens syndrome
lupus
hypothyroidism
deformed feet
dyscalculia
poor vision
brain damage
and personality traits that are clearly and definitely due to such bad hearing from the start that learning was impacted in a negative way.
we had no hearing aids for over twenty five years of our formative years.
this my friends is the educated way of seeing our start.
you cannot do most things well if you have almost total deafness. science and psychology had now determined the importance of hearing in the shaping of personality, social interaction and connecting with others.
especially when facility was not there to compensate for this, as there is nowadays.
personality and deafness are very strongly linked.
there is nothing wrong with either.
we are good, and kind and fun people to be around, if its allowed in a good way. we are deaf though. very.
this, isn't living as we have it now.
mags i hope you are OK, i know you were left home feeling poorly and have headed for bed.
i love you more than words can ever say.
Mum, Dad and Louise are watching over us.
i am only down the road.
take care.
we are OK.
very OK.
we shall survive!
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