Monday, December 24, 2012

berries and bury

well tis christmas, and we drawn to the red berries for the birds on prickly branches, berries for the turkey  of a sauce and berries as in cheery cheery drunken cheer of all that it means,  Christmas.

Christmas, a time to welcome the family. celebrating the joy of birth and rebirth, to offer  christian action, (even if it's this one family dinner) and then my friends retire:
back to the hangover
back to the far flung countries
back to work
and for a lot - back to turmoil, sickness, strife and loneliness and this final 'back' is actually not so 'back' but 'continue'.
The ban has been lifted and i am allowed be present at a family dinner!
Woa, until one time in the following year when i lose favour again and believe me i will..the ban will resume in many ways.

Right now i consider and look back at the year - the year i was deemed a criminal for shouting for help to get a puppy dog off the road, which resulted in the home help walking out and never returning.
Resulting too in the home help provider saying i was too dangerous to allow staff in my home.
Resulting in this Christmas i am left all alone to do my chores, light my fire, build my fire and carry coal buckets for a full two weeks.
the different home help provider has left me high and dry.
Because she is careless.
Another difference i have to face with the identical twin, all because i have asperger syndrome.
THAT IS ALL!
i have asperger, poor communications and i am discriminated against for this presentation. A presentation that gets worse when i am very distressed and tired.
Lets see what else i had to face over the past year -
the adaptation grant - a manager Occupational therapist in the wicklow area has decided in her wisdom i should have a wetroom, this being against my will and unnecessary and i seemingly have no say in this matter and she will not meet with me or speak to me.
The distress of this cause me to postpone the grant process until the very last minute.
A deep trench mark the boundaries of the extension and yet i still have this fight into the new year to retain the bath.
this is still leaving me stressed and worn out with sleepless nights and a christmas fraught.

to know too that the community primary care team run from me as i try to clear my name and because of this my the distress is too vocal.
Try to have my home the way i want it for all the other disabilities, the Disress is noted, i am far too vocal.
So not even the social worker will speak to me!
I am far too vocal and the manager of this area will rather speak to twin about me but not to me.

even thought this vocal distress is borne out of prejudice and injustice as i am treated far worse than twin.  No one ever gave me a chance in this county.
this county has done things to me that i never experienced in my last.
this county is Wicklow, the land of milk and honey, the 'garden of Ireland' many coming in the following year will take trips into the garden and admire all the beauty that is here in abundance.
What they wont see is the very provincialism that is rife within the irish psyche,supposedly  our educated people.
the ones leaving university with a degree in occupational therapy who say the reason why i need a wet room is because i have a neurodegenerative disorder and the reason why twin doesn't is because she has parkinsons!

 we have team care providers withdrawing staff from a sickie, who once had a history of BEING in the psych system but never having a psychiatric illness.  She suffered depression due to social isolation.  No higher form of professional was asked of my 'danger status' and so i am blacklisted forever, as no consultant who could assess me as being dangerous or not was proffered, in the absence of a fair trial, i am blacklisted.
when one is deaf and raises her voice in alarm, it is seen as 'danger' aaaaah, "get my home help worker out of that place!"
to be considered a tyrant is dreadful.
imagine waking daily to understand that the educated nurses, occupational therapist, and all consider you a danger, and you are avoided.
the woman who stayed close to her home and never went out.
the woman who never saw a person ever from day to day and now finally who wants to do this, having arrived in a new home, new country with my my first efforts in freedom has been stymied by this county that in no other words can describe as ' bog irish ignorant'
i have to deal with the emotions of fallout, resulting in further trauma.
i wake knowing that i am unloved by family, neglected by family, avoided by the care team and also having things done to my new home which are violently against my will.
also knowing that a neighbour four doors down has pulled her staff for no good reason.
in all this i am powerless to effect change.
there is nothing i can do if the professionals will not lift phones, meet me even with support, or discuss the way forward.
there is nothing i can do to clear my name or even get a basic care package in for me, which doesn't require a battle like this, being left for christmas without home help cover for a full two weeks, and when i try to ask my PA workers to fill the void, there is nothing i can do when they refuse to answer the phones, a situation that happens when they dont want to be free for work.
This is about as subservient as you can get.
This is about as poor as you can get.

there were times i wanted even yearned to go see the doctor for support, but he resides in a different county and i was too poorly to drive over.
this county found not one doctor agreeing to take me on.
a fact shocking beyond shocking. this not because of my personality presentation for they never even allowed me one consult, but on hearing all that is wrong with me, they wouldnt have me!
when ignored in life how can you have even a good life, how can this equate to quality in the 21st century when the world is awakening and knows such things as autism spectrum disorders, but such modern thinking has not hit  holy ireland.
Ireland with stigma and ignorance leaves ann, without the means to celebrate her first christmas here in her home as the build was delayed as we fought over the bath.
no wheelchair as the ramp has not been put down.
no home help because ann screamed trying to get the twin's dog off the road. Ann with a mobility difficulty and found it impossible to do this without help from home help who was inside.
a christmas knowing that the fight will resume in the new year but right now - i have no home help cover for christmas and the twin does, and i am just as sick.
i despair and am very very depressed.
there is no point in pretending it other.
i will not be able to enjoy christmas, with the weight i have on my psyche of being disliked and avoided in my new county.
where getting help is doubly as difficult as it is for my twin.
and i beg to differ, in saying it should not be so.
when you are sick.

Monday, December 17, 2012

a walk in the Black Forest and bloody twinklies

there is no doubt about it, its a dark place to be - the forest, any forest especially in dead of winter.

when a forest can be the sea shore in december, a bright day in june or an autumn day of living, when its dark its dark and can get very dark indeed.

where was our drowning out of light for us twins today?
it was wet, blustery and mild, a nice trot on the strand in greystones, but a weepy one which required a gentle prod and tap on the back, two sticks stuck in damp sand as useless legs, tried out the stepping.
three dogs happier than two humans.
they ran amok and we watched.

but dampened down were we, with the ongoing struggle of our decline, too early in life and not knowing what is going on.
where is the biopsy piece of your body twin?
its in Kings and needs to get to Queens.
where is your body part Twin, well mine is in Newcastle and now is being tested for common mitro deletion whatever that is.

but maybe we may never find out what is wrong.
but certainly complacency on the part of medics is not helping as twins are stuck in the middle of communication errors and one consultant not making the request for body part and the other thinking the other was taking care of this and no, secretaries are not involved so what do you do then, months later, you give a body part, you pay for having that done and you are now minus any results from testing, thus far.
not the fault of the body part giver.

if they want any more when we are dead and interesting will they get it?
highly unlikely as they have not helped us when alive.
they cannot expect my brain to investigate once i am dead when they make my life an utter misery when alive.
why should i be a body donator when dead because i am rare and could be interesting to science.
NO, my will of leaving it is fast eroding as twins slap sticks in damp sand and weep together.

what else happened today...one got stuck in the toilet twice, a small cubicle with twins in it together, the one sitting on needed damp cloths to brow, a massage of back, a fan of the scarf twin holds in front of her, this because one is about to pass out due to wrong food and crohns and ceoliac, one twin made a major departure from a very strict diet.
this has a cause and effect, biggun.

right world, we are in economic crisis, but does that mean the individual gets lost in misery because of this?
where is thy neighbour in all this and when will thy neighbour ever consider more than self and basically get up off arse and tend to the less able.
I really am angry that we do not do more for each other.
the disability agenda is there, what is known is there, where there are deficiencies we KNOW and darn all done about it.
YOU CAN make a difference but you have to voice and you have to act.
do not expect change without effort.
nothing comes by putting the bum on a soft pillow of sofas and warming by the fire or in the bed under blankets.
nothing is achieved by silence and inertia.
nothing is achieved by making pals with people in high places in order to maintain the status quo.
you have to bark to alert the intruder in disabled peoples' lives.
making enemies for a good reason is better than making pals for no results at all, if the pals be at the top and have an agenda to effect change, then they have to be made aware that those of us who can, will not pander to them but make them work FOR THEM>

i  am not liked terribly much and i am saddened by that.
but what i have tried to do was effect change for the better of my own personal life.
this i did and i lost out on many things in doing so but i did effect change away from gun slinging children.
i was in the centre of a violent community of drinking men, a woman alone and apart.
i needed out.
but it destroyed many things in my life but now i am safe at least.
i am angry here that far too many people sit by and do not act to help the least able.
i am furious that twins in the 21st century are left alone in Ireland, very alone with little support anywhere, this is within the community, closer community and the broader agenda of health in ireland.
neglect is the word.
as one limps by and helps the other as we shall always do.
but i am livid it has to be so hard slap in the middle of middle class ireland.
this is the ethos now of living beings.

Walk by and do not accept the responsibilty for less able.
just walk on by and forget that we are killing souls, wishing our elderly dead and depriving our disabled of equal rights through massive health cuts.
depriving the least able is what Hitler did.
he killed them all off in gass chambers.
is there anything different today i ask, not a lot.
we are starved in body, soul, spirit and freedom and that is what Hitler did, but he did it the fast way.
i am angry

we have absolutely no health care at all...no means of getting around, no physio, no psychological help for one of the twins, no pain management, no real help in the home but lazy home helps who shave off fiveteen minutes and do as little as possible leaving the disabled behind in effectively not much better than when the home helps arrive.
there is no monitoring of this service.

we have nothing but fresh air to live on and spirit, we have that in spades.
and i have no twinkly lights for the christmas tree, there were far more pressing issues to deal with and at the end the pleasure gets left out when time doesnt allow and energy definitely is not there.
we are a weak and sad country all round.

Wednesday, December 12, 2012

budget blah and woolly hats

SO much of this country is simply ...WRONG.

and being in the thick of depression as we are now people are actually beginning to do the 'step over him/her' trot.

Literally, its everyone for him/herself now and the feeling that its there, the feeling OF it, is sensed by everyone.

all are wrapped in envelopes of protection, against the world, yet in the world, for oneself and darn to everyone else in it.

a trash time to get the coppers mentality and a trash time of self pity too of 'i am having it real tough, no one understands how tough it is for me.'\
actually most do understand, but couldn't care less if you are or not.

we are walking away from hurt and pain and suffering of our fellow human beings instead of collectively shoring each other up in this time of need.

here is an example...i visit an elderly neighbour and find him wearing a woolly hat and no heating on...he is aged 97yrs old and recently out of hospital.

who will ever see this man as meaningful or purposeful or necessary now.
I do for one, and i do so cos i feel the suffering of being cold and being worried.

this man is iconic of Ireland ALL of ireland.  COLD.

brain dead and very cold.

and 'the woe is me' syndrome goes further.

i woke today dreading it.
i slept on the sofa until 4am, restless, depressed and physically in pain and mentally out of my brain with worry.

How can i manage on what i am expected to manage on?
You can tell people what you have and what you have not, no one will listen or acknowledge you or your own circumstances, they have their own.

you lie restless knowing there isn't anyone you can turn to, you have become isolated, weary and no amount of suffering will alert others to this fact.  they have their own.

so you don't go to bed.
you scream inside, yearning so badly to be relieved of the depression caused by worry.
you do not want those few hours, if you get them of release in sleep only to wake, realise you are suffering and then burst into tears, knowing a full day is ahead and pretty much as yesterday was and the next day and the next.

there was a film once called 'the glass menagerie'  i watched it as a young person on black and white tv.
it was about a young learning disabled girl who hit behind her four walls and collected crystal ornaments.  when i saw the film i suddenly 'knew her' and never forgot her.
this is why i visit the elderly and have done since aged 18.
there is something in everyone, even if to most is meaningless.

but on a personal level you know too, that you are indeed very much like the elder man and the younger lady.  there is a bit of me there on either end of the age continium.

dont forget who you are.  you are a bit of everyone walking abroad.

but last night and every night i do know and understand the dilemma of worry, an economic and personal financial crash.
you also know about trust and about cheating and about distasteful people who are very real and you never knew they existed.

you know each day will merge one into the other.
that no one will phone to ask how you are or even visit with a cheery smile to chat.
you know this never does happen ever, not regularly and certainly so infrequently we are measuring this in months not days.

never to have the phone ring.
never to have a meal brought to your door in friendship and concern.
never being asked 'is there anything you would like me to do for you.'
never being asked out, for that meal, or stroll on the prom cup of tea.

Never being given much of anything that in whats called once, a christian society would have been most available.  The little things that make the difference, as ringing someone is in the scheme of things, 'little.'

to understand hardship, sickness, disability, lonliness and isolation all wrapped up in one is about the hardest an individual can face on a daily basis.

so remember, hardship is in the 'feeling of it.'
and each person is the sum total of everyone else. So no different.
but what is different, what makes us what we should be, (intelligent beings), is the capacity to feel for another.
right now what i see, is a trotting by carelessly and a stepping over others with contempt, carelessness, lack of charity and lack of concern.

we are losing ourselves to a deep 'SOUL DEATH' and inaction is happening when a gentle touch of care in a small gesture or small gift is enough to lift a vulnerable person to the level of maybe even considering that 'its worth it after all'

dont wrap up your troubles in a small personal envelop, go out and share em, and chat with others and discuss the possibilities of getting out of trouble and sharing ideas for the collective, to get out of trouble, and these are things we can do, and we may have something to offer the other.
we usually do...if only we would SHARE the gifts we are lucky to posess.

sorry for the preachy tone, but the days have been dreary and i believe needlessly so.
most cannot overcome or triumph on their own.
most need a nudge up from others.

Saturday, December 8, 2012

BREAKDOWN...BREAKDOWN...BREAKDOWN....


This is a considered email of a person i know,

 an email sent to every TD she has been in contact over these past few years as a person with severe disabilities.

  
Please see her breakdown of her basic payment through Disability Pension : 

in total 
Payments                           Deductions

Flat    193.50                      Phon:     20.00
Fuel     20                           ESB:      15.00
Laa        7.70

Tot Pmts  221.20               Total Deductions  35.00

Total amount received   186.20  THIS IS WHAT I AM LEFT EACH WEEK TO LIVE ON - not including deductions made now for  the following:

Prescription medications  : 
Lyrica
morphine patch
paracetamol
mepacrine
sulpha quinnine
entocort
eltroxin
macular degeneration meds                                                                  18etooth paste to save teeth as effected by sjogrens syndrome                   17e
rivitril
nexium
fish oils  - brain nourishment                                                                  10e
eye drops  gel
                 drops
creams
ceoliac pasta/cornflakes/breads      eradicated from med list                 25e per week at least (no tax rebate as i do not work)

12 chargeable items now TREBLED in cost leaving a bill per month for myself of - 19e monthly

Cost of my medication per month will now be          18e
                                                                              17e
                                                                              10
                                                                               25
                                                                               19
                                                                      _____________                              89.60 per month in costs.
                                                                               

my weekly pension after deductions at source is now -  186.20  if i divide my med bill in four i will then deduct again from this the sum of 
22.25  leaving me with a basic living fund of 103.95e

this does not include Coal
  -  van insurance - petrol
  -  VHI payment  ( i certainly could not quarentee best practise for crohns surgery to the public health sector with the high incidents of     post-operative infections, my first surgery nearly saw me die in @@@@@ from post op infections, see their latest rating on this matter)!.
 - phone bill.

please explain to me how on earth i am to live on this?

in the last few budgets i saw my basic rate of disabilty pension cut twice and an increase of medication payments.

to consider major items for my disability have already been funded this year 

- repair to my mobility scooter -   500e
- acquiring a Lidl rollator                99e
- spoon and knife                          37e  I refused to pay this - specialised protective clothing in  summer as the sun rays are so damaging to Lupus patients
- specialised wrap around sun glasses to protect eyes from sun, loss of moisture and cornea damage - see conditions above.
- back supports for computer chair.
- hearing aids     E1.500e eachwhat you have done to me has beggared me
                                               threatened my peace of mind
                                               put the fear of god into me for my future
                                               left me cold this winter (there isnt any oil in the tank at present)
                                               i am fearful of best medical practise at the mercy of a very suspect local hospital. 

 I hope you sleep well in your bed tonight after seeing the above detailed outpouring of one sick individual living alone in this state where the European charter for people with disabilities has not been ratified, when all other european states have done so. 

if anyone call inform me how a person can live on this with the cost of living here in Ireland higher than most of the rest of europe and add on taxes, levies, and so on so forth.

this is one individual and there are many many more that this goverment has brought to its knees in utter terror.

this email had received no acknowledgement this morning and i will await with held breath to see if one comes, on second thoughts maybe i should not, for i then would surely die for lack of oxygen.  

Don't you just love politicians especially the ones devoted to being Leftish creative, eg our labour party?
  Labour, you will never get my vote again ever.  If i can help it, neither will people with disabilities ever believe you are on our left side serving us, the ones who depend on good decisions being made on our behalf.

Thursday, November 22, 2012

very few shades of colour in disability

you get simply one colour and it is called - TIRED...does it have its complete complimentary, yes, ALIVE.

and being disabled is just about as dead as you can get, inside.
but not because you are you...
...you can be VERY PROUD of 'you' but you can not be ALLOWED to be proud.

the most we get is wait for it and do not be alarmed...the most we get it...ABUSE.

there are many colours to this one we do know that.
the worst being, your word...that is, YOUR word.
are you believed if you say a reasonable statement in arguement, no.
are you considered sane often?  no.

the professionals can dress in any shirt or dress, they are a collective evil against equality.
they ban together like glue in order to support each other one with the other against...the individual, in this instance, the disabled.

how many disabled people are believed in a case of a health dispute?
if you say 'well, actually she left me without...'
'ah no she didnt, you are imagining that, ' or 'i believe my'  oh yes.

in other words, you are a pathological liar with murderous intent with violent tendencies, when even you raise your voice in distress.

when you raise your voice in distress, its called being 'abusive' in my country.

if you complain and ask for review on the person who wronged you the review gets twisted so badly it ends with, 'this review finds that in order to get...you have to apologise first!'
yes!
so someone may have said or done something to or against you as a disabled person and you put in a complaint, only to find that the review decided that you brought all this on yourself so if you want them there services, apologise and you will get em...

there is one thing i can say about my country ireland, it was born on the back of deceit and we lived and survived by wit alone, decades of it, since cave times, a little island going no where fast had to try to survive in the rise of the powers all around, how they did that was by back handers, sliming, deceit and in modern day, brown envelopes and back handers.
and the collective rounding on others to save face.

do i believe for instance that faith SHOULD BE PLACED with the HSE TO hold enquiries into what happened a young woman denied the right to abortion and so die, no i dont.
in a small part of ireland on the other side of the same country, a disabled person has been so demonised within a snuff of a request for review you would think that person is the devil incarnate.
if you think i say wrong here, you can ask for an eminent person in another country, as we say, an independent witness if i personally say wrong here, that person will say...no.
i have watched the process, and seen how bad it is becoming.
we are what we are, a vicious, conniving, self serving, grovelling little pest of a country who no more has honest peoples' lives in their heart than our friend who is frying down there in hell..that one with the horns and fire.

Tuesday, November 20, 2012

important to record

in the context of world change a person is only as truthful as the records they keep as life moves on...this way the truth is presented fresh at every recounting.
note taking is a guarantor that truth does not become distorted over time..
as long as you are truthful in the first place.

lets watch how note taking can go.....

how many times did the HSE discuss your adaptation grant with you...the circular amongst the professionals being that contact with awww was 17 times.

maybe so but what does awww say...she says, contact was made seventeen times..for what...the first was introduction to the area, followed by broken wheelchair followed by two broken scooters followed by a crashed van and so on and so on, also to try out the powered wheelchairs and to arrange the time of day and the day that all came so it could be done.

that makes 17...did you discuss the adaptation grant?
yes...how and when?
well i met the OT to discuss it.
did you discuss.
sort of.
what happened then...i said what i wished for to help me in the home...
do you think you were heard
no
why
she stayed about ten minutes and said she only ever did bathrooms and kitchens and she had not done them in a long time
out the door and a verbal recount with Dr. Raging Wheels
what has happened with the grant
well...i got it
has anything been done
no
why
 well they only ever did bathrooms so they demand i get a whack of a wet room
do you need it
no
i have other disabilities that could far better be served with this small amount of grant
ah so.
well nothing then
ah so.........er no..........nervous breakdown looming
regarding professional speak one has to be very precise and reasonable.
why do you need a wet room and twin never needed this and had two bathrooms escaping the glance of the OT on the trot
well see, you (that is me) have a neurodegenerative disorder your sister has parkinsons.
i kid you not!
ah yes soooo.
eh then, is parkinsons not a neurodegenerative disorder?
or did the note taking go a bit array and my neuro used the word 'degenerative' and her's
'parkinsons.
note taking accurately is so important but more useful if you tell the truth and have your facts right and actually know what you are talking about

my note taking today consists of
-rang the neurologist
rang the rheumy in London.  i get an answer from them, still waiting for the neurologist.
then i rang the health centre
will we go 'why?' again?
ah yes.
i collapsed;
i got no return call back
nor from the hse whom i also called
i went down to the health centre
they cannot do nothing about being unable to put in place my five hours a week home help/
i am funded with the funding for the under 65's and twin is funded from the fund for the over 65's/
i kid you not!
why
well.....heeeeeheeeee  heeee heee (wait for it)
she has parkinsons and i dont!!!
now if you are still with me and understand note taking and understand the above, please let me know.
i am now off to have the nervous breakdown with my chihuahuas on top of me and a one eyed teddy needing loving.
i am also saving on the electricity bills.......get a chihuahua or two, especially one that is prone to bite...a hse official.

Monday, November 5, 2012

being autistic is no crime


the day i realised i was autistic...today...pain people give me every waking hour i couldnt take it. weeping i wrapped up well and stepped into the garden...i went over to the swingseat, darkness all around, frosty air, stars and stars and stars...where did i go to? I went to a place of utter peace inside...everything was as it should be, the air whisked by, there were twinkles and dreamy all around, no sound bar hush and breeze, no real light of day, no sound of barking dogs or knowledge of a human within sight...i found who i am and always was...not for here amongst the humans, but amongst that of wonder...yesterday a long time friend, my only one really announced to me that she never knew anyone who had such a lust for life and seeing the best in just about everything, despite obvious hardship. i answered 'i love life' but i say here, i do not love human beings, especially those that are around me.
I adore the chihauhaus and the out of doors, these all are living, and its a part of that i belong to...not humans...i suddenly at 59 knew and felt the autistic i have been finally diagnosed with.

Tuesday, October 16, 2012

there isnt much to think about any more

i wondered again today what is the point in it all.

am i right to be defeatist when i really want to stay very attached to life and positivity?

is it actually the real me or is it not?

suddenly i begin to feel very outside of self now.
i have so little joy in my heart right now.

Ireland is turning into a country i rather not even admit belonging to, being a citizen of, and being proud of.

we destroy far more than lift up and is it particularly irish to rip through someone as in pick on a persons foibles, character traits and personality like the bully in the school yard?

it is a sign that my country refuses to grow up.

we wil remain ever the 'paddy whacky' irish.

to see Enda on the cover of Time magazine, all shopped is a bit ludicrous.
world leader eh? our enda?

when he stands up and says we are a 'modern society' what exactly does he mean?

does he mean that by reducing disability pensions, reducing home help hours, reducing Personal assistants, stop funding for special shoes, stop funding for electric wheelchairs, stop funding for special needs school assistance he can make Ireland a tiger again?

He cannot.
when you start a reductionist programme which will wipe us out as in sedate us out or put us away into the nursing homes, reduce us to nervous wrecks at this possibility, reduce us to anxiety beyond which we can endure and have us throw the tantrums of despair that then has others throw their hands up an declare, 'i told you so, she is a right daughter of a bitch!'

and you are reduced to crying under the cover of darkness at how you have been brought so low in your confidence, self esteem and the need to roar like a lion in the face of the impending stampede of the tiger!

so you cannot walk tall anymore, or even walk at all. they have stopped funding for shoes, wheelchairs and only provide you with a victorian adaptive aid, the good old stick but this time not wood but composite steel.
we will have a stick for the blind and a stick for the deaf, a stick for the lame and a stick for everyone in the audience soon.
you wont get much else in the goodie bag anymore.

wracked in pain too causes the tantrums.
your spine is closing over and you are on three different types of pain killers including morphine.
you do not have physiotherapy nor no chance of getting to a specialist in pain relief any way soon.

when your new home help does a sickie on the day before she is supposed to start working in my home, also could cause the tantrum.

Recap on the life of one disabled Irish woman:

no home help
no physiotherapy
no special shoes
no wheelchair (electric)
no visitors
no support for having asperger or ptsd
no relief from stress or anxiety of what will happen me and the twin sister.

plenty of
anxiety
depression
lonliness
pain
despair
boredom
futility
all caused by Enda's modern society and how he is going to make us rich again.
Hi Enda, hello Enda, are you there Enda, will you have a photo of me?
Do i want one of you?
No Enda.
good bye Enda, will you End-a?

Sunday, September 9, 2012

Protesting is Normal









Being a disabled person doesnt mean that political activity is not part of the remit.
Indeed it is more part than not so with a zest and zeal like none other, the pink hatted twins stepped it out, well half and half really.


We desperately tried to manually push a wheelchair with our bodies in it, this isnt easy with a muscle wasting condition.
we then desperately attempted to push a wheelchair with our bodies behind it, step by hot step on a very hot day.
I could not sustain that pace and commondaired a passerby, very obliging, hansome man.

I look back at the times when i was a volunteer with Friends of the Elderly in the 70's.
How i thought the old ladies and men's adoration for us young ones so sweet and endearing, and did so rather patronising the frail beings who gave us the confidence to do what we did.
- i felt all good inside to help.

-I am surre my handsome young felt all good too, but i personally sank an inch deeper in my  wheelchair and felt a little less sure, a little less confident.

This confidence, can be eroded by dependency.
small acts can bring it home in a very embarrassing manner.
the day we hobble out in pink with bowlers, all pink all identical and doubling up as only we can do.  for being disabled for me, means my right hand man/woman is also that as well.
its cringe stuff when depending on others in such a massive way.
In other words, for all the bravado and the reality of the fun which is it, its major cringe and major distressing - denotes -
Disability.

Its a fact of reality that someone has to do the job.
being a person with a disability, that is.
Without us, there wouldnt be a fair bone in anyones body.
Why, because we are seen and people learn a thing or two.

Protesting with disability shows the world, 'Oh Lord, they can do THAT?'  "Oh Lord, yes we can"
Of course we can.

a Protest is good for the soul if it yields results, which the last weekend did.
Its good for everyone's soul for the very reason i mention above.
It is not a matter of cringe pathetic to watch disabled people protest so we get results.
its a matter of personal inability to deal with severe government cuts and what it means to us.
We had to do it, and you cannot put disabled people down.
Nor, can an institution ignore this fact that the disabled, like the poor will always be without.

why in gods name do people once in government begin to feel that you can actually destroy a human being in this manner as if worthless.
the polititian of today or yesterday may well have been the young good looking chappie who did a bit of social awareness when they were green under the gills.

this time the reporting of protest is, we made a punch of effect and had a proposed cut withdrawn.
Independent living or lack thereof withdrawn.
but like an onion there are layers to this thing called provision of care for the vulneralbe

My family rounded on me a day later.  and it was devasting to hear the sort of thing that seemed to be the crime in the act of protesting.

To actually do it, as one of the siblings said, 'looking for attention.

so explained written i end with a steep pull up and put down,  WE are Worth The Protest and most effectively - WE GOT THE RESULT!
as for family - THEY SHALL BE FORGOTTEN FOR NOT APPLYING THE CHRISTIAN MESSAGE ANYWAY.
now, shoes, "Did i hear anyone say something about shoes?"
Add caption shoes

Wednesday, August 29, 2012

Not just a teeny bit of it! RED!

to write once prompted is to speed up a voice and activate RED, upon RAGE and Roar RED.

when a chance to say a word, or two is paralleled with a prompt and paralympics and a debacle as an adaption grant application for a disabled person all come together - on one day, on one page, the story is Hot and getting hotter.

Ann has Rage, once prompted by injustice, decades of it,  Rage is a response to abuse, neglect, abuse, dismissal and now a shell of a home.  In the name of disability grants for the disabled.
We (I) got a grant for adaptions that are not needed in this moment in time.
yet some manager, somewhere, here, i have not met nor even know its gender or medical qualifications.
I have been told a disabled bathroom for a person with paraplegia or quadraplegia is my requirement (i walk, even if badly).  My request for adaptations covered the gammut that are my disability.  The inability to sustain walking when my legs have atrophied, are in pain, coupled with chronic fatigue brought on by neuro-degeneration and many autoimmune diseases.
I have a spanking bathroom whether i like it or not.
i have a ramping of concrete practically encircling my new bungalow costing over E1,000 whether i like it or not.
I have, due to inability to cover the rest of my need, floor space for wheelchair because i have had to biff out a bedroom (planned for in-home care) and this leaves me with a shell, of a usable home for a wheelchair but no storage, no floor covering, no paint inside and out, no bedroom for a carer, a tiny add on extension to give more room around the bed but mostly cos of the massive bathroom that THEY said i needed.

a meeting - red letter day, we had on para day on a photo shoot day-a bloodletting day of curdling proportions.
Tears and no understanding that three men, one professional, one disabled professional and one disabled, all trying to justify a stance that leave the red blooded roarer in the wheelchair in tears as none of the ruddy work that has now been planned completes for me a home that is actually a home for a disabled woman!
we will have a concrete moate, minus the flowers so magnificent the estate i am in think in wonder of the wee little woman who put it there now deceased and a whacking great bathroom and no money left to even put on paint or floor covering.
my red rose day of red roaring ruptured soul and spit and men in trousers dictating and a woman with a clipboard.
oh and i know about the clip board bit.
the one who tells me she doesn't remember what i had spoken about when moving here and applying for an adaption grant and then did it matter anyway because some Manager somewhere had decided before i ever arrived.
Also the Liberation of paras worldwide, in an age of enlightenment sees a paralympics sponsored by an organisation that has been co-opted to lop off 50,000 english disabled persons from any grant or living allowances they were entitled to and made them all go back to work, even if you are on dialysis they can say this, and that one person i know of died within a year of losing all her support grants.
that crowd is floating on the wisdom of newton and coloured umbrellas with singers in prison overalls, co-oped to sing the national anthem to the Queen of all Queens overseeing the overhauling of cuts on an olympian scale who according to the anthem will uphold its laws of the land.
can i cope.
well who cares, who asks and who bothers.
colour - umbrellas, wisdom, newton and aesthetics.
One thing for absolute sure, the message was uplifting, the show was dynamic, better by far the fumes of slavery and the industrial age.
but it is sickening overshadowed by the underworld of heavies in our society who are determined that every disabled person on the planet will have life made just about as hard as they can make it without discrimination, realisation or even asking or inquiring do they mind or do i mind.
I do, mr. umbrella of wisdom, newton and hic or whatever they wonderously discovered recently.
it wasn't humanity and that i do know.
Anyway sorry.  Thats considered a Rant to able bodied minds.
its considered the truth to a disabled body and beautiful mind of an intelligent woman.
 To prove the beautiful bit and what Red can do, remember folks the red rose of tears, on the days that was in it, in the bushes crying at Harold's Cross, Rehab and Hospice after a consultant - (male), had informed me, in no einstein experiment of medical examination that my muscle wasting was due to inactivity and lack of exercise - yep, did he ask me my lifestyle, nope, but he deduced it.
yep, by seeing the mobility scooter by my bedside, for which he clarifies his diagnosis on, again the red rose blood bellied froth of anger at another abuse of power who abused his power by telling me that i am lazy and my muscles had died because of it.
This my friend, despite it been proven, medically, in another country, that i had a condition of muscle wasting that was consistent with disease not laziness.
we have an enlightened age for disability, especially when it rains ...or even if it doesnt, the colours go up anyway.
wise eh, well, just in case.

i will ask my friends who own colour of any hue of place, emotion or other, say it, share it and it will be a better more colourful place by far.

i thank http://www.travelsupermarket.com/c/holidays/capture-the-colour/ for sparking in me a written response that sparked a creative response coupled with imagery on the road rather not travelled today, the red road to the lion of sparkling grey tin of utter ignorance of stuffing.
Not even wanting to be any different either.

Sarah Henderson, Chrissy MacNeill, Margaret Brown, Doreen Kennedy, Keith Hern and Michelle O'Neill, all magnificent photographers, all with either an illness or disability or vulnerability who want to change a world by making a difference through creativity.  Share and copy,
Say it with Flare, say it with colour.  Never fallen, or faded, tis RED by any colour, tis.

I am on the RED letter Roaring day.

Tuesday, August 28, 2012

witty? No, but Oh!



Oh my!  i have not written since June but then i heard from Chrissy O'Neill and then i was spurred...on by...a link.
Yes, she sent me a link so we investigated right and proper, and it was to  http://www.travelsupermarket.com/c/holidays/capture-the-colour/
so really how could i NOT write a blog?
I am here to speak, yes for today i say i have an image.
I think it is nice but then i took it and so i have to remind all that we (I) can be either selective, right or biased.
I possibly am all three to be honest.

Now i look at it i see a small bee buzzing, and bet its out of focus.
it would be.
er, no pun intended.
i was perched on a mobility scooter in a rehab centre for those with chronic illnesses.  I escaped this evening as sun was fading and the light was really wonderful.
To the Roses i go each day here, a Rose garden within a complex of a rehabilitation centre for Rheumatology conditions and also a Hospice.

My escaping was wonderful for i did it daily more than once.
I escaped at Dawn, mid day, middle day, afternoon, middle afternoon and eve.
and sometimes, i cried there.  Sometimes i sat and was all melancholy and quiet.
But mostly i was within a zone of complete and utter peace, smell magic, see beauty, surrounded by calm, leaves, colour, and more so and forever.
I was at one with nature, myself, my being and my many conditions.  To escape pain, escape confrontation of illness, escape encasement within alien environments that only hospitals and peaceful dying rooms can be.
to escape turmoil, as only i know it and knew it then.
the sort of frantic wish to escape and a need to see if beauty can actually do this sort of magic trick of transcending.
It can, and it does.  Look at my white, pure with butter colour touch?
see a small bee, kiss as lightly on the edge of sweetness.
can you hear the buzz?  I can.
Can you smell the dusk approaching?  Oh yes, i can.
What say you of the Peace then within.
Oh, oh. Oh, i can.  that is all that is to say of it.
No more.
I have a glow, a petal glow of fragile safety within a fractured soul.
I have found the capture for me alone, in this world, alone capture for soul and being, a fragrant flower, drawing me to it, the bee and all together gather, shrouded in leaves and shelter, i am here now. At a whiteness of peace to me.
I am ok.
All is ok and for the space i give myself in the rose garden with my camera, i can be alone but aware of wonder.  It is always so. A link together a creative need to stay linked to nature and aesthetics and wonder, to transcend pain, a lot of it.
i invite my friends all photographers to join in this blog, find an image and place within this competition and capture their colours.  GO, Capture the Colour i invite
 Margaret Brown,
 Michele O'Neill
 Doreen Kennedy

Lois Davies and Sarah Henderson to come and see what Ann is saying to you and about what and with what and how....



Friday, June 1, 2012

Ireland will let us die

without a doubt my country will let us die...i speak of my identical twin and myself - two women with a rare condition - Congenital Rubella Syndrome.
Dr. Raging Wheels is my twin.  You will get to know her too - if either of us remain alive in a health system that is simply euthanizing the useless, aka the disabled.
My twin and i - for instance.

We reel from one crisis to another.
we live but a quarter of a mile from each other or less and we cannot even get to each other easily.
we are promised electric wheelchairs which we have tried out.
like carrots teasingly tempting us to sit, we then see em packed away in the white van that brought them to our doors, we now wait on a list.

and so it is with most things.
we reek with conditions, as each of our body parts crumbles due to an invasive virus Rubella which my mum caught when expecting us.
we have not hit 60yrs but I bettya Ireland is sure we wont.
We dont have the wheelchairs but what else do we not have?
we do not have CARE, period.
Little or none and what there is is chaotic, unpredictable and predictably AWFUL.
what is left at 'fallout' end is two exhausted women shocked to the core that any european nation could do this.
Most people in this society rely heavily on the extended family - what if there isnt one, or one that can be or is willing to be caring or even recognise our distress, what then in holy ireland?
if we do not have this extended family we are finally in the custody of the state, which is bankrupt.
Neurology for instance, has cover the lowest in europe.
and my twin and i do not even register on the richter scale even though we are supposedly being cared for in this system.
we have not been jotted or noted in our chart for two full years, that is, no note has been made of us being in that system and yet we have and yet we see and dont see a result.
we see the consultant on no set regular expected consult, we have to hope and wait, and wait and wait that someday it will be decided for us to be seen.
we also do not even know what we have, for the jury is out on that...well...to us it  as no formal diagnosis has been made, again, nothing has been formally documented-nothing being written in our notes.
if we ask, we are considered pesky and persistent and irritants.
We do not easily slot into Post-polio, dystonia, parkinson's, ms or als.  we have some and not the other and none of them but all of them, whatever.
we are dystonic and parki and have a post rubella.
but what is the definitive diagnosis and how are we to be cared for with it?
does one of the twin's come off her parkinson's meds and why is the other hardly been medically controlled of her jigs jerks and dystonia.
we get the botox jab in my neck and twins foot/ankle but is that dystonia due to dystonia or parkinson's.
we both tested positive for parkinson's on a DAT scan which is considered 97/% accurate.
we don't get considered as having it and half the jury is hung or out and we are slashed and drawn in confusion and dispair.
what about the other...the endo who discharged one back to gp, that is the senior reg discharged the twin without even consulting the professor of neurology who referred her to him.
that is 'out on your ear, mate,' without further ado.
 that is, us being sent to the consultant of endocrinology,  (we haven't seen though, due to the rarity of the situation), sent for the expert opinion but in the opinion of the registrar, not yet a consultant one twin has been  shifted back to sender.
Deformed feet with special shoes, well yes, but two years ago funding dried up for them and so i hobble, now one foot has collapsed and i am working with fallen bones.  I also have a short leg but as the shoes went so did the lift, that is all of two years ago.
what about physio, well, yes, i get four blasts every six months.
that is my friends, about half hour at most working on generalised dystonia and then after two hours every six months i am told to get on with it.
any expert nurses around for the following - ceoliac, crohns, sjogrens, raynauds or arthritis?
no, you join these sort of support groups for the support grouppie advice.
that is the sjogrens associations, the raynauds etc.
these are non medical conglomerations of well meaning and charitable organizations who do trojan work, but they cannot interfere with the medical supervision of the various conditions they are trying to support.
we don't have the medical supervision and we have all of these, well i do anyway!
you can get all the advice in hell on these but you need to have the provision, advice without such is useless.
how about deafness and blindness - well none of that is much public health concerned as the public health hearing aids are just about useless for those of us who are touching on only having 35%.
we have a shortage of just about everything.
and just about everything my twin and i have with just about nothing by way of care, family, support, apparatus, funding and access to transport or other.
We will die.
I personally who had the misfortune to be in the psychiatric system will surely die, as i am shunted to the virtual wards as soon as i arrive in A"E anyway.  that is ED to a lot of countries, but here in Ireland these are documented to be seriously dangerous for your health and fatal for psychiatric patients, known to be.
without family to watch over you, no one can call a halt to maladministration of health care for the least able.
how can one person with parkinson's disease who is recovering from radiotherapy help the other who has generalized dystonia once in the psych system who ends in A'E/ED with a crohns blockage, both deaf, both women, both in wheelchairs, both clapped out help one from dying of crohns blockage/peritinitus?  well, we lost one sod in southern ireland whom they left too long and who died, sure i am surely going to be next as he was abled bodied and had two small chizlers, whom he left behind.
we are forgotten in the melee.
who do we want to hear this?
well who will hear?
and who will cry out and not allow Ann and Margaret, the terrible twins to suffer this indignity at the age of only 57yrs.
it is no good making documentaries on a wonderful woman who pulled out all the stops for the atrocious treatment of learning disabled in the west, when now, she is receiving pretty similar and more and more, and watching the same happen her twin, myself.
it is no good plastering my cute wee chihauhuas and self on the front of HealthPlus Irish times, 2010, documenting my story for the curiosity of it all and then abandon lock, stock and barrel, the three day wonder.
and then the bit of curious floss dragged in to the bosom of a caring professional because of curiosity and then told 'ah but you are a spirited lass.' but what next, 'get back to where you belong.'
and soon it will be to Holy Ireland of the dreadful bloody fiscal fiasco who will carve our graves with enthusiasm as they embrace the words of my taoiseach who states 'we are a modern society.' he that says he isn't tolerating what the church has done to its children and vulnerable adults.
well you did, over in the West, remember, and someone found you out, that of the HSE, remember and then remember how you embraced through tv documentaries and Irish Times articles, well no you don't.
cos we are still here, but not the way you think, we are here, jerking and jigging and hospital hopping and chaotic crisis riddled individuals, left in the melee of Holy Ireland and modern etc.
well we are here,
if you read this and care enough to give us your last rolo, as in - DO NOT STAND BY AND LET RARE AND SPIRITED AND WORTHY INDIVIDUALS DIE IN A COUNTRY THAT HAS NEGLECTED US.

Monday, May 7, 2012

we do say but what can we DO!

yes, we do, scream and rant and say coherently of our thoughts and values, in society.
Many want improvements, many want change and most people have difficulties effecting such change.
For myself i feel i do say and my voice is valuable.
but i want it to SAY enough to effect the changes i see as needed.
When you read Irish headlines as in today, that 80% of our disabled kids are not being assessed adequately within the legal time frame what on earth does one feel and then say and follow with DO?
This is a human rights crime my friends.
I have said before, standing up and castigating the church on its human rights violations and claiming my country will not tolerate sexual abuse by clergy because, we are 'a modern society' well Enda, what is modern about neglecting the kids in this way?
or is that, - our modern society, aka modern world?
Methinks the word 'modern' means progressive and regressive.
we have lost souls, through the church abuse and through greed in money.
we do not care, how can i say this and effect change.
can i grab a teenager and train em up to care properly, drag him/her away from the infernal computer, which in my dotage is taking over my life as well (but thats for another days blog), can i open my door and scream about injustice to be considered 'ah that the mad woman again' (another days blog), or do we all endure what 'modern society' is doing to our kids, our pockets and our lives?
I am furious with my government, who are so smug and yet do nothing for the least able.
NOthing.
Our consultants are some of the highest paid in the European zone and treat most patients as if they are a burden not the source of their weekly wage. more so those of us who are disabled and challenged in life, we get it in the throat when sitting in front of one of these human intelligence machines, whose soul went out with the toilet water my friends, because at present i do not see no soul around my parts.
Yes, we have cuts.
do they tell us where?
and why?
so that i too know not to ring a consultant for the overdue appointment that is badly needed.
Not to ring a consultant to ask about rheumatology difficulties.
well i email, out of this country, into another.
and get an answer!
yet cannot get one of my dignified educated elite, whom i am paying, to answer any dialogue i attempt to make in order that I personally have a better quality of life.
to be educated is enough, but to not to use it for good advantage and that of others is wrong.
when PAID, its dreadful to ignore those who need care.
Modern society we are not and Enda, we never were and will never be in my lifetime anyway.
get up and act on words we all feel and know and understand.
Disadvantage stinks, and its messy and horrible.
I am in that place along with others,
we have the voice but not the means to effect change.
those who have the means to do this will you please here this voice as i type from the horizontal.

Saturday, May 5, 2012

Fiscal, Europe, Mental'n all

it is indeed a very difficult world to live in now and a difficult world to make sense of.

it seems that the 'money' element is so prominent in all countries that trying to balance the books means the people get left out.
those that cannot take the strain end up in all the major rivers and waters of Europe right now, the Rhine, Danube and Liffey all drag out the bodies of the despairing.

the moans and groans of utter discontent and the hating of governments across the globe is evident and you cannot get away from that.  Never now.

where are the people though and what are they doing?
(apart from trying to sort economics, personal and global)?
I mean, where is my neighbour, where is my church and where are my family and friends?

This is something i just cannot understand at all.
The reasons are many but yes, i too am caught up in the mess of a personal life.
How much of the mess was my fault is open to debate, as is the world's troubles.
When does the responsibility lie on your shoulders alone?
And should it be lonely and loveless and hard work alone?
Should we not expect the neighbour, the church and the friends and family?
I hear my contempories saying to me that 'well, they are young, all doing their own thing.'
This is the biggest cop out i have ever heard and explains nother about the concepts of moral thinking other than there is no emotional or intellectual thinking going on!
for what can you do with the above sentence?

Yes, to me most nowadays do not care a jot for others in trouble.
We just bail out and bail into our own personal lives and live in a microcosm of narcisstic pursuits and if cars are bashed up, drink taken and women made pregnant its all a 'mistake.'
Never anything other than a 'mistake' not a crime or a moral crime.

we are in difficult times of different moral thinking.
what about those who are over the age of the pole dancing floors and the enthusiastic sex in the flipping broom cupboards of europe.
As we age we matter less and less, but we are still alive.
we dont need the drink and the sex and we couldnt do much with poles.
my example of this is trying to dig a hole for a pea support is about as slippery and impossible as any pole going upward and nowhere.
but i am disconnected from society.

the inability really to engage either with peers and society has made me very sad and very confused as to 'meanings' in life.
for i see here my twin also struggling, no pole, no stakes but a stake in life until we draw our last breath.
we yearn for the small connections of a welcomed visit from the next generation who never seem interested, even if we show wonderful interest and concern.
we yearn for the person to ask at the door would you like to drop by for a cuppa, to maybe respond, 'well i wouldnt be able, but do come in if able, and we can share here.'
what about my wallpaper?
yes, what about my wallpaper?
See, duck egg and gorgeous drawing?
whatabout my Wallpaper coloured duck and grey?
well i adore it, see, but will you see, will you come see?
no, probably not and so i have to sit here with no affirmation and no real follow through of joy in a task hard thought out and needing the human consent on the result.
most people do, so i know i am not alone.
but some are more alone than others.

we struggle to eat with no knife and fork but spoons we cannot hold well at this stage of our neurodegeneration.
we struggle too with exhaustion and despair, for we have that in spades.
society has provided so little help its shocking in extreme.
while the young men go out to recapture the ideal world of wealth and fiscal balance, we struggle with the concept of our lives of decline, alone and then to the grave shortly and away with the fairies to be forgotten really.
the feeling -
that feeling of pointlessness of it all.
the bursting of enthusiasm for small jobs done and yet no one to share it with.\
we have ALL disabled people around the world struggle, all with mental health difficulties are terrorised with social bullying for the rest of their lives.
we have disabled and psychologically challenged traumatised and fearful about the next A&E visit and wonder will it be this time the virtual ward near the laundry will see a corpse or a doctor.

its worrying the way the world is going.
we need the people back, not to fight for the wrongs of the nations but to embrace the needy and the people struggling so badly.
it was done during world wars, so its possible.
anything is possible and so i lie here and wait and hope for the miracle that  of 'possible'
sadder and sadder you become in a tired life.

Wednesday, March 28, 2012

the personality dilemma

when i had typed the post's title i instantly thought, well are you right in stating this?
I was to talk about how prejudice around personality causes many sick persons finding it difficult attending doctors.
When i was referring to 'personality' in this context i was thinking more of 'difference' in the context of society's norms.
Society has a set of givens.  we have the 'extravert' and the 'introvert' but what if we have the 'depressive,' the 'manic' the 'hysteric' the 'sulky' and so on?
When does society say that a person has erred too far over on one side of the divide to be given much attention to?
That is, ignore and move on to one of society's acceptable people.
Not every one fits into the basic standard dress size.
Anyway there are always variations on the theme.
so what makes a person acceptable?
Is it...beauty, wealth, or just plain 'normal' or just plain 'plain.'
Does a person have to be a cardboard cut-out, that is, lack all personality to be acceptable?
Or does a person manage to overcome the difference by being different but wealthy or different and from an influential family?
because certainly if celebs say it all, they get it all, and mostly because they have the wealth to buy them just about everything, even if they are wild, drunken, rude, hysterical and everything other than plain plain.
Walking into a doctor's surgery is not for the faint hearted any day, for anyone.
Some seem to get away with the task better than others.
Many don't have to put up with the rudeness.
i have seen this.
I see it too often.
I also see and have seen how some people do have to put up with rudeness, being left until last in a clinic or being shunted to the 'virtual wards' on the side near the laundry baskets.
i will say which bracket these individuals belong to, they are the individuals who stand out from  the  accepting society's norms.
we have as i say the drunks, but here the POOR drunks.
we have the mentally ill, again the POOR mentally ill.
also those who are Not from high society families or who have the support of family who are high flyers.
if you have been rubbished by the family of origin and do not have them supporting you then well, you are also a complete gonner.
they have documented that to be poor and sick means you die younger and sooner.
That has now taken off a sizeable proportion of the people i happen to know.
so if they die off then i can quake with fear.
but mostly the persons who get it between the eyes of hostility are the persons perceived to be mentally challenged, that is, mentally ill or been in the mental health system.
this is all across the board and in not only holy ireland which is my country but all countries.
but being in Holy Ireland i have seen horrible things done to people here.
try this for size...i know a person who was not treated for physical presentations until psychiatrically assessed..that person was myself.
yes, i sat it out until i was and i was many times and all times found to be mentally sane.
what the sender to the shrinks saw was at varience to what the sender perceived or realised.
they SAW tram track slash marks on this person's body.  they immediately percieved madness.
well they were found to be wrong by the shrinks.
the shrinks had never seen me as mad or having a mental illness.
Tram tracks on flesh is not from madness, but say that to the ill informed.
Tram tracks means many things.  Abuse can cause it, neglect, vulnerabilty and also feeling isolated in crowds or not liking oneself, or not being able to express oneself adequately to be heard sufficiently for things to change.
it never is about madness.
but i have seen also mentally ill persons being so badly treated it beggars belief that medicine is about healing not destroying a human being.
You would rather think it would be more healing to lift up than slam down.
A doctor has the ability to do this in such a differnet way to most.
they are after all , the gods to keep us alive.
we depend on them to do this, keep us alive.
they then are 'God.' and believe me they chose to act it.
making judgements that are divine is their supreme skill but in the hands of humans it amounts to ignorance.
Tell me why anyone should be treated badly just because they are different?
tell me please why these people with difference too, should be less believed about their own feelings and bodies than those who have the money and the beauty and the sanity?
because when a person describes how their body feels, most if not all will say it as it is.
why would anyone say less or more, when they go to a doctor for help?
it is very few who are feigners, very few.
again the gods decide that a person with tram tracks are, and they get shunted to the side.
Every time.
they also get treated badly at every turn in medicine without exception.
there may be an individual doctor who will decide to believe you and i have had one or two, but one or two does not mean absolutely everyone.
we started on this blog about personality, and it is so all embracing, all consuming that it goes to the heart of what being a sophisticated species is.
the way to 'take animals' out is so much more sophisticated than the arrow or the mallet.
you simply treat them with rudeness and shunt them away, also shut them away.
the voiceless many as known particularly in this country when we shut more people away behind bars for being different than any other country in europe combined at the time and we are talking about a period of time, the 50's.
Irish people i feel, are far more prejudicial than most would be led to believe.
i put it down to being too long the under dogs.
i see it now having rebound again, just as we began to show hints of tolerance, i believe we may revert back to the dark ages.
mostly economic decline will see a hardening of attitudes, another 'survival of the fittest' tactic.
at the end of this blog i will say one thing clearly.
I DO NOT want to be the Plain PLAIN>
i do not want to be a shrinking person who has no say on matters, who has to grovel, who has to be 'important' in economics or beauty in order to be treated well.
i want to be myself, which is, DIFFERENT, by virtue of birth.
i have not wealth, status, age, beauty or sex gender on my side.
but i have Spirit, Spunk, Laughter, Hilarity and uniqueness that is particularly my own, and my own style.
does this sort of 'difference' along with my pain, my past, my vulnerability and my inability to withstand abuse mean that i am led to the slaughter each and every time i am found wanting by one person and another, those who are the 'acceptable beautiful people' of our society?
when society can be judged as truly sophisticated, humane and reaching out toward difference, then we can say we are nearer the God of Life than the God of destiny, the doctors.
and i see too many of them - for my sins.

Thursday, March 22, 2012

a dog's life and no denying it

The fire is lit, the small chihuahuas are asleep (they do not count as dogs), i have a cup of tea.
I am jaded.
Many words would express my feelings about life and Ireland.  I think what i have to say and what i feel is pertinent to Ireland, and pertinent to the Irish dynamic that weighs back to the time we had to pit wit against the enemy.
we have enemies for sure and we have lost the pitbull will to face these, so in our insular, comfortable state and cosiness of armchairs we pit the bull against our own kit and kin.
This i say is Irish.  It speaks of ignorance and lack of both emotional intelligence and fairness.
its the shrewd way of getting the exact response which will  make you feel a bit better around your argument, even if the argument isn't a good one.
its the cunning that the Irish is known for, and boy i have received it in spades, that awful, awful feeling that yet again i as an individual have been 'taken out' because, those who can do so, do it.

Here i do not speak that i am any holy saint for i am not.  He who casts the first stone...so before i throw rocks (not from the water feature i am making in a garden), i will say that i have rocks shored up of vices and nastiness that i do have i guess, certainly i am wrong a lot of the time, but jaysus surely i couldn't be wrong all the time?
so hence i say, why the feck has Ann been at the receiving end of so much.

where can i begin to hurl the rocks?
the medics who still leave me in virtual wards before they ever speak to me, why? Cos i have tram track trauma blade marks all the way up both arms and parts of my thighs and belly.
they let me out of hospital too soon, they didn't believe me when i say i was unwell.
my wound burst.
they send me home and say it is all anxiety when i cannot walk (for gods sake, has this happened anywhere but in holy ireland i wanna ask?)
I then do not get treated unless i am assessed by a shrink, yes, i have been left waiting for a shrink to come back from hols before i am treated for physical complaints - how many people have been treated thus?
I have been threatened with ect, nasal gastric tubing and more besides, the first well, they couldn't but they threatened, the second cos i physically released a build up of bile when my crohn's caused a blockage.
and so in that arena i am continuing to suffer and be terrified, will the next A&E visit actually see me die unnecessarily due to my tram-tracks of yesteryear?
and also now, after a bunch of horror years i have been attacked, by children with guns, and told its again all in the mind, even when i have the photo to prove it, ah sure that not a gun!
it was, and remains a gun, it was a gun!
we had men jumping walls to attack me, and i am asked what did i do to make them!
well the corpo spray painted their car parking bays away from them without telling them, and they took it out on me, for the corpo wanted to give me a disabled parking bay, but did i ask for them to do it over their dead bodies or mine.
it was nearly mine and i nearly had the housing unit i was to occupy burnt down before i ever went into it cos if the corpo gave me another persons bay he was going to torch all three units, period.
no nonsense, like.
so out came the guns after that and me being told to get back to where i belonged, well i would have gladly if i had known where that was or is.
we cobble together a way to get me out of danger and the council nor the hse, that is our health service were able to get me out, cos the council wouldn't and the hse couldn't.
i do what i could and did.
i left, with all my stuff piled onto wheelchairs and into disability van and trip after trip i left.
here is the throwing of the stones, and listen lord they are mighty boulders.
the Mammy's family dear Lord.
Irish mammy's family my dear Lord. Lord hear my prayer for sure as god i hope, that i join you shortly as thats the only way out of continuing hell.
my mammy bred the family as most in Ireland.
there was one eggit in each family called the goat.
I was that goat.  so when you want to win an argument and were not winning you shot the goat, not dead like, but you shot it, again and a gain and again - flogging. Irish style.
and i got flogged.
over and over again, flogged.
so flogged that i fought back, badly - see i have many vices and i have declared them to the lord, but at least i cannot lie so i shot them, them feckless greedy, self serving individuals that my mammy produced.
and they know who they are, the one who said she wished i was dead, the person who was in the psych system who never had a penny who trashed her body, she wished that person dead, why, cos i was that goat, Irish style.
then we had the other who said i wasn't coping and needed sheltered accommodation..this is the one who i asked if she would include me in a cook pot from time to time to help me recuperate from surgery and what do i get - i get cooked.
this is the person who felt i had asked a soup bowl too much.
certainly a fish pie too much cos eventually i got delivered a fish pie to be told 'this is a gesture and nothing more' it was, i saw no fish pie more  nor nothing.
she who knows how to dress a salmon, take out the royal albert and couldn't think christian to help her kit and kin, the one the mammy also produced.
that christian and the other who wished i was dead, go to mass of a sunday.
i dont, why, cos i was abused by a wonderful man, a holy roman catholic priest, nothing less nor more, well actually yes, more but thats another chapter by far.
so where am i at right now in time?
just about on the edge of my armchair, wishing to god that i could go to my Dad, who never harmed me the way the rest of my mammy's children did and continue to.
my dad, my good and lovely dad, i want to be with him.
no one else, absolutely.
but the problem with that is...i dont believe in any more than this shite life so i wont see my dad will i?
nor will i see my two sisters and brothers, my first cousins and my nephews and nieces, cos i am so bloody evil, the evil personified that none visit nor text nor tell me anything.
that my international confraternity of internet friends is called putting a person in solitary and making them suffer cos you can do it, so you do it.
and it happens in the Ryan's daughter Ireland and the Field's ireland and my ireland.
its where you shoot the small guy, doesn't matter how you shoot them, but if you want to be right and proven to be, you blame another, and the only way to be right is to do it this way cos they are not doing it the proper christian way.
The right way is to cherish not only themselves but all, and holding the most vulnerable in their hands.
they are blaming them cos they are too fecking selfish and mean to help a person who honestly could have done with the help they had the ability to offer and didn't.
so to my mammy's children, the children of my mammy's brother and the children of my mammy's children, watch your step, some day not for decades but for maybe a decade or a day, you too can be shot at in the most violent way imaginable and when you are you will feel as lost and as lonely and as sad and depressed as i am tonight, with my two wee chihauhaus, one on either side.
on the lonely sofa where i have always been, on the lonely side of life.
and the killer of me will be that.
the loneliness of a person who has felt so betrayed and continually betrayed by the very people she yearned to feel loved by and wanted to love.
how can i and i doubt if there is any love left after what my family have done to me in the past three years.
i was threatened with complete anihilation if i wrote another blog along these lines again.
anihilate then cos it cannot be any worse.
you have done it already.
you all collectively - the doctors, the pills, the clerics who sexually abused and the mammy's children did this to me.
so cast the stones my christian family when you read this blog.
as for the medics and clerics, the medics are so holy they are the untouchables and will remain that way until someone tells them they are daft naked kings all along and the clerics well they are in worse shit for their boss, the real king has the supreme ability to send them all to fry in hell, if you believe that you believe anything.
shit life, and pretty shit people around i say.