Home sweet home

No 8, 2

The right image shows me when so excited to be a home owner and declining in ill health and mobility.

the left sees me sell up, traumatised and exhausted.  all caused by HSE who interfered in every aspect of my being and life, including my home.  MY HOME I bought with inheritance from a sister sadly deceased.

bottom demonstrates I was seriously ill most of the time by now and it was a difficult life.

 

At the age of 72, just about, I have a long history of hall doors.  The unpredictable availability in ownership of one hall door equals - belonging, love, safety and peace but definitely a place you can be yourself and most importantly be free enough to be just who you are and proud enough to be who you are.

 

Who you are is a learning through the decades, cultivating elements snatched from a base even if rocky but which makes understanding of self, easier.  Once you are secure in yourself living a life in home should be unfettered and free.

 

Most of all, you can chose home to suit your needs, if you have cultivated a strong sense of attachment to calm and quiet, you can create space to suit. 

If you love a garden, even a patch of earth is enough to breathe your calm listening to birdsong at dawn and dusk, you can plant to encourage feathers of millions,  you are now the designer of who you want to invite.

 

Sound can be turned up as you chose, you can sing and dance and laugh and chatter in your own good time, in a time and place called home at the hour you chose.

 

Growing older is an important time of transition from ability to being dis-abled in what you have chosen for yourself.  It depends on stability and how rooted you have always been.  Maybe your home is there forever and you can devote your time to further enrichment but first of all the home has to be a constant.  You have to have a base you can relate to in all aspects of being.  We all need security.

 

A psychologist called Abraham Maslow believes in a hierarchy of needs in order for human beings to thrive and the basics of food, water, clothing, shelter and sleep must be met before we can address more complex needs like physical and mental health and these basic needs are prioritized for the homeless.

 

 Maslow claims we all need and crave a purposeful life but usually these cannot be addressed until a person is grounded in the basics.  Security of a home base is the first priority without which nothing would or could be achieved.

 

Today we recognise seven greatest needs to thrive.  To meet a need is to ensure that a human being has the resources to survive, maintain life and most importantly, an internal state of wellbeing. This may be different for everyone, but a need is not a luxury. It is a necessity.

 

I grew up in chaos, I understood lack of safety and lack of confidence of who I was.  Basically, I failed to flourish.  The home was not my choosing.  Children cannot chose.  Life away from this base which was trembling like a constant earthquake I struggled profoundly.  Although I claim that my inability to be part of society was a result of my home environment and deafness, there actually was more to it when I left.  

I am a person who needs a constant and struggling to pay a rent for a roof over my head was causing further instability and nervousness on top of all I already had to contend with.  What a miracle that finally I found a home, a real home.  A good home once I had it I can truly say I got wings and thrived.

 

I did this by constructing a womb for myself.  That place of safety be it beautiful or basic, it really did not matter.  I made my sad place beautiful and it is part of who I am.  I thrive in aesthetic places, it’s all on a level or spirit of being.

At the age of 40yrs I opened the door to No.8 and after that the door of No 21 and then No 2 and finally No 8, yet again.  No 8 1 was not the same as No 8 2.  Why?

Social housing at the age of forty. 

No 8, 1

 It held two rooms, a small corridor, no running hot water.  No bathroom or shower and a basic back door toilet.  I washed with a basin by an open fire.  it was HOME, in every sense of the word.

A view from the sitting room to my beloved Annie's home across the street

The back lane of Desmond Avenue Dun Laoghaire

 

The home of 8, 2 was invaded, deconstructed, manipulated by others against my wishes.  The home ceased to be where I felt safe, secure and grounded.  Turmoil greater than the turmoil of infants was excessive and to a point of no return.  Alas, selling proved my personal downfall.

The turmoil they created for me was greater than the perceived result anticipated by a public body to sort a problem and against the law anyway as no statute or policy covers the right of a public body to demand what a person does to their property if they want to avail of the adaptation grant to their own home.

 

When the value placed on this home was so great I nurtured its value to me by creating a haven. The garden was very large and stupendous.  Coming from a social housing unit in an x-tenement street I was ecstatic.  I am and always will be at one with nature and now I had found a real meaning in my home.

Home again to be reminded is where a person can be themselves, free to express their true selves, a place of unfettered sanctuary but if multiples defile the place not because they had legal rights but had a belief they could trash my psyche and do as they wish to the place I bedded down in my personal choice and funding of a home that was to leave me penniless because I put a roof over my head.

 

Yet the HSE made demands greater than I was prepared to enter and these demands were excessive and illegal.

'We shall have grey tiles here," demanded the HSE OT to the builder I had secured to adapt my home.

"No 'we' will not!, I counter demanded.

"Why?"  said the astonished OT glaring at me, "it will hide the dirt!"

"My dirt."  the idea an OT can design your own home????

My beautiful Bathroom, once shut of HSE and builders - 

no grey.

 

Article 40.5 of the Irish Constitution claims the following:

 

• Proportionality: Courts can only permit bodies such as local authorities to interfere with people’s homes if it is proportionate to do so.

 

• Action is ‘proportionate’ when it is appropriate and no more than necessary to address the problem concerned.  

 

 

The HSE also claim that having an OT appointed during an application for an adaptation grant to your home can advise to the best course of action to take, it has no role to play in planning or mapping our your own private home nor does it have a role to demand you make changes for the future if you do not wish for such changes.  In other words it has no role in coercive control over your property.  There is no law for it.

 

The adaptation grant allows people to improve properties for their disability, it doesn’t define how this should be done, as people’s disability vary.  It may have changed its use from the time I applied but at the time, it never specifically defined what I had to do to the property.

 

The HSE demands were not even proportionate and it is interesting to find that the OT ‘disappeared’ once the grant aid was given, the job done and I had been badly affected by a stroke event.

They even wrote to me and said that the OT had no role in an adaptation grant.  This means saying I needed to tear apart my bathroom, have grey tiles to hide the dirt, trash out the front door to accommodate a wheelchair being taken in and far more besides, was both disproportionate and illegal.

The person making these demands refused to come to the home and assess it.

 

The property was entirely mine and in our constitution was inviolable.

 

 

The text of the Irish Constitution refers to property rights twice; the first reference being in Article 40.3. 2° where, under the heading of 'Personal Rights', it is stated that the State shall protect, as best it may, the property rights of every citizen from unjust attack.

 

Our constitution also protects our rights to be protected against torture, inhumane treatment.

 

Article 8 protects your home.  The definition of home means  a right to enjoy your existing home peacefully.   

 

1.   Everyone has the right to respect for his private and family life, his home and his correspondence.

2.   There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.

 

The HSE offer no grounds whatsoever in their policy where their members can insist a client in public health care  alter the fabric of their home against their wishes and also any adaptation grant has to be consistent with the disability as seen as priority by the client and her consultant, in my case the neurologist.  I was consistent in my aims to see my disability catered for through the life span.

I never believed we could have made a judgement and base an action on that judgement given I had no distinct medical diagnosis so any judgement was a hypothetical reasoning which could have been true or untrue and the facts could not be determined.

 

Would I need a wet-room in the future.  No one could tell and years later I still do not.

 

The HSE OT demanded a wet-room and demanded I widen the frontage to the home to get a wheelchair in.  

 

I did not want to do that as I felt it far more important to feel physically safe from intruders and attack as a rape victim.   I wanted to utilise the side entrance behind which a storage shed was going to be fitted for the wheelchair.

 

I also felt a wet-room was not high priority and a bath used a lot was my way of easing chronic, unrelenting physical pain and also  mobilizing in the home and a good wheelchair entry to the garden vital. Blocking off the side entrance as well was a safety address I needed being a deafened individual.

I felt that opening up the very small property would help my claustrophobia and mobility.

I also needed to redesign the kitchen for a wheelchair user.

The HSE only wanted to look at my washing needs and my wheelchair access and storage.

 

I had actually made a valid argument to all this.  In the course of this adaptation grant I became so depleted my home ceased to be the home I chose, it became an abused structure by the HSE.  It reeked of the ghosts of the HSE coming in repeatedly, where they discussed with builders what they wanted done with me standing helpless beside.  I spent hundreds of thousands on this property. when they left, I began to feel very unsafe, insecure and traumatised. Too traumatised.

 

Home is heartfelt joy and rest.  My home was effectively taken from me.

I remain without a home.  I remain without a basic need met to thrive and live well.

I have effectively been tortured.

 

Despite the fact I sold a perfectly good home and garden to live out my life because I badly needed to run away from this area controlled by the people in the HSE here, I can do little to find peace nor a compensation for what they did to me.

 

It was on a level of torture.  You have to experience it to understand.  Every ounce of my being was consumed by the HSE and no matter how much I, and others, protested we never got justice and we never will.

 

If I have a word of advice to others, especially others who understand things like justice, human rights and personal autonomy, do not mess with the HSE for at the end of the day you have to live a life worthy of who you are.  The HSE are a dysfunctional, useless organisation in its present form and as someone remarked to me only a few days ago – progress is glacial.  I will not live to see progress.

 

There has been none in a decade and that is a long time in anyone’s life.

 

Walk away.  Literally walk away from them.

 

      Diagnosed with severe post traumatic stress disorder and a quality of life in the bottom 20% of the population

                                                                                     2017

on the postraumatic Stress Diagnostic Scale she reports lifelong traumatic stressors (from childhood) but particular three events in the past years which have contributed to such stress.  they are:

1.  being shot at while living close to violent alcoholics in Sallynoggin (an inter-agency placement), which resulted in two suicide attempts before she moved from her community and relocated to Greystones, where she is extremely unhappy.  On this issue she scores at the upper end of the moderate range of post traumatic stress disorder.

2. She has specific painful memories around the awarding of an adaptation grant for her current home, where she felt discriminated against, her personality was pathologies and she had no right of reply to accusations of aggression.  the cost spiralled, her house suffered much damage and she was unhappy with the final result. She was refused an independent risk assessment.  she scores in the moderate range of post traumatic stress disorder on this issue also.

3. she has extremely traumatic memories of her various contacts with the HSE which has 'annihilated my being.'  she has endured ten years of criticism, disbelief, lack of service and struggles to access even basic maintenance of her various illness and disabilities.  she is haunted by past contacts with the HSE and wishes strongly that they should not be a part of her future life.

On the quality of life questionnaire, Ann scores at the 22 percentile (average is 50%).  the only area she achieves greater than 50% is political behaviour as she and Margaret are active in terms of disability and advocacy.  she describes herself as being driven to this activity by the actions of the HSE.

there are many barriers to her improving her lifestyle including communication, pain, lack of services and financial constraint.

overall Ann's quality of life is in the bottom 20% of the population.  she urgently requires a comprehensive package to fund an appropriate style of independent living with capacity to make autonomous decisions of her care needs, which she is well capable.

                     Neuropsychologist Assessment 2017

  

 

 

Free and unfettered - close the door behind you

Be yourself

Be the person you were designed to be.

 

 

BACK to BLOGGING. A Lockdown Essay 2022 - found!  

Taking up where I left off.

 I am putting this up today.  Or have I done so before. well lets see.  Let me know!


 It has been such a long time since I had been able to reconnect with my blog page.

I guess you can say 'its a miracle.'  Can we also say "Miracles do happen?"  I am waiting.

I am locked in the capsule of Covid lockdown never eased in my situation of being medically compromised.  I am in that capsule where others now decide my fate without my say - which is a purposeful construct of autocratic states who believe rights based agenda but not of the person but of themselves.  An institutional response to women, women who say 'no' when they want the answer 'yes.'

I am tired.  the vibrancy has died, it had been killed and I am a sadder person trawling the time that passed and now the time stands still.

Did I learn much in the stillness?  I learnt a great deal.  You are never applauded for taking a high moral ground, whether justified or no.

We all have that right to argue our belief stance in our own medical care, plans, treatment and course.  we are told such things as "partnership in our own care" is a policy of the institution.  There are other well lauded political policies bandied about online and in documents and it is a veneer to the reality, the lived reality.  

You ask for your medical files - they are not supposed to be redacted but they are.  You ask for a review and that can either change nothing or change little and then you have to ask the Ombudsman's office to make the final adjudication and it can take a long time.

You ask for a medical report or results to say, an MRI but you cannot get it, you have to ask your GP and you have to wait until he reviews it and will allow a conversation around it, but you may have to ask for a copy under FOI.

You are asked "why do you want to get your notes under FOI?"

Most should know but they appear to be confused or in disbelief.

They say they have not the time, but its a legal right and you may have to ask three times before someone will capitulate and agree but you may be asked for time, for certain conditions and it can take a long time.

There is a "Rare Diseases Plan" for Ireland, there is a "chronic diseases plan" in Ireland and there is also a "neurological diseases plan" and these are theoretical but in fact they are wonderfully compiled sets of criteria for care.  the problem is, they are paper thin and only serve 'to look good' to the searcher on how Ireland does its planning but don't ask the patient, or the diseased because our lived reality is very far removed from their reality.

they will then look and sound confused when you describe the lack of clothing on these files, the nakedness, the bare bottom facts of life.

They are hurt, they are upset and then this all turns to anger, alas the little boys and girls waving from the side lines, raise the pink bowler hats and claim, "HEY!  MA?  The Emperor is wearing no clothes!"

"Shush child,  they will HEAR you!"  

"But Ma, his little W. is for all to see, do you see IT?"

"Oh Gud, I can't take you anywhere so I can't."  but word is now out and the rebound is the W can be seen by all, especially those considered subservient by experience, age, professionalism and clout.

but the Word IS out, the W is out too for all to see!

You get terribly tired of it all.

you build up a portfolio of hatred not to mention four file cabinets lining a spare room (room wasted in real terms) tabulated, documenting the scurrilous abuse of burocratic power against the woman, the sick woman.

You just get tired and afraid.

so now in Lock down the only question worth answering it seems because holding hope for more has failed and now of vital importance is whether or not you are toileting in a normal fashion, not leaving a trail of brown bowel excreta down the corridor or indeed wetting yourself involuntarily.  

the flourish of presentation saw two women waiting and watching the cul de sac outside, the dogs bark in excitable expectancy and the twins yawn their relentless boredom and some fear, they are here.  Doors are open and two women step out and cleanse their hands with purposeful intent, don the plastic aprons, put on the masks and pick up the clip board and set forth for the hall door.  We have an engagement like none other, that the real reason for being here is whether you widdle badly or whether you have scuffed bedsores on elbows, butt or heels.

"Did you know I had a stroke, nurse?"

"No I did not, when?"

in 2013 and it is 2022 now Nurse.

Its far more important to ask did I want incontinent pads and the decency has gone out the window and lost on them.

These sorts of questions can be asked over the phone, not in the home of women protecting themselves from Covid facing two women who have been in and out of multiple bugs and viruses turning up all widdle intent.

I thought our professional staff were at a premium.

can the nurse who is on desk duty not ask these vital questions rather than sent two others with an overburdened work load?  Having to case the joints of every over 65's asking the important professional questions of problems of widdle and poo, seems of vital importance, these are vital questions.

I sigh.

Christmas and a yo to you too

My mother, before she got married, did volunteering with 'st. john's ambulance brigade, working mostly in Baggot St. Hospital.

Dad and 'Uncle Bob'  two wonderful men, sadly missed at Christmas.

Christmas has never been the best time of year for me.
recently i tried to think back, did i ever enjoy it.
I did!
excitement of waiting for santa, the bottle of milk at the end of the bed and some crackers for the bearded one.
- that is, until i saw my dad come in and sit down, drink and leave.
I did!
when i ran around banging on tin drums with my twin sister, up and down and causing chaos, unit my Mum came in and put her foot down on that.
I did, i say with the lovely little dresses and pink ballet shoes with silk ribbons, the little white cardi and the fuss and pomp with table glistening shiny and best silver polished and placed neatly, candles red and lit, crackers criss cross down the centre and places ear marked for the usual sitters, and the odd stragglers of older sisters x boyfriends, present boyfriends or friends of friends - at a loss for the festive season.
i enjoyed watching my grandma coming in, laden down in a real fur coat of motley proportions and weighty and mangey, we all laughed at that - no one knew where it came from, it suddenly seem to appear late in her life.
my auntie sat beside me.  a petit little lady with a hooked nose with a poorly thought out nickname of 'Polly' but we all loved Polly unreservedly she was kind and gentle and thoughtful.
she wore thick beige stockings, a bit wrinkled, but she was a tiny person.
twice i was sick for christmas, and it was Auntie Polly who bothered to climb the 13 stairs to my nursery and pull a cracker and wish me well or sit and chat.
once even she bought me my first record, an EP with goldilocks and the three bears on one side, and 'donno' on the other.
i was carried into the sitting room to listen, and she held my head and stroked my young face and hair.  She was to me a beautiful woman.

instant reminders of christmas brings flooding back my time with Aunt Polly, and her final days.

Memories as time flooded onwards and older still, i grew to hate it all.
i became overcome in silence.

"You are very quiet down there," my Dad would say from the top of the table, it was a big table from Frescati, Blackrock where he was brought up.

it held a multitude for this yearly feast.
alas if 13 sat down, the youngest was given a small table of her own so as not to make the full circle unlucky.

we all had our designated places for decades.
i sat near Mum and Aunt Polly was to my right.
Louise, long deceased sat nearest Dad.

the meal passed off usually in gentile and calmness, but maybe not so always as the meal ended, it was time for 'who is doing the washing up - this year.'  Louise was on to that quite quickly or my twin sister or i.
i never remember the older ones doing it or even volunteering.

afterwards the drawing room was roasting in a blaze of heat from a tiny coal and peat fire.

The Kennedy clan.
b. row Gerald and Elizabeth, the eldest.
F. row, L to R, Louise, twins (we can't tell each other apart even now) and Jane

Granny got the Masters armchair and Polly got the middle of the sofa with whoever on either side.
Louise lay out front of all and Jane fell asleep.
Mags and i sat on the floor leaning up against large chairs, I usually aimed for my Gran, as she loved to stroke my hair and that was gorgeous and intimate and nice for a seven year old.

talking for a few hours, it could be testy for some and we had a 'storm out' (or two) as the years went by.
a lot of teasing went on, i didnt approve of that.

years on i was glad the ritual was coming to a natural end.  Siblings married, moved out and on.  soon the numbers were much smaller, meaningless and purposeless.

Like Christmas ritual, Sunday was another when Mum was left behind doing the Sunday roast.  Dad took us up Burma Hill, Killiney for a walk

but for tradition it carried on as pastiche of a time when i did enjoy, pre about seven years of age.

Now i am 67yrs old.  i hate it.
My lovely Dad is long gone, my mum, gran and Polly, Uncle bob and the Conans too, with their christmas eve visit all pass on by and forgotten now.
Its not the same.

i remain the youngest of the old class of the generation, waiting now to see if anyone invites me to their table, despite for the full year i may not seen them or received a phone call.
as the spinster, something like Polly, the family joke/scapegoat for funny fun of some kind, i tag along as the tagger for no other reason but, well 'we should really.'

I have bought a lovely outfit, something i have not done in donkey's years.
i bought it to relieve my deep depression of recent months and so lets hope the invite comes.

so far a nephew has enthused about meeting me and doing something of an afternoon when he comes home from London.
So far a wonderful neice has sent a letter to say she is looking forward to meeting up and having a chat, from France, over too for the first time in over a year.

i love these young uns.
i rarely see them, but hope i count to some of them.
so i wil be pleased it soon will be done and dusted for another year.

plenty too to forget of 2019, it was a ghastly year, like none other and most can reasonably guess why.

but not to put the bitter pill out for all to take, i want to wish all a very happy christmas, as some do still enjoy it and it uplifts many and rejuvenates a bonding of family kinship, so we have to remember those who are thicker than water so.
happy christmas from Scrooge, who actually is waiting for the invite and turn into a better human being for at least a day or conversion of some kind, but it couldnt be worse i say either.

So looking forward to meeting up with Katie my favourite Niece.

Taken at a past christmas, i look rather beautiful.  I look forward to meeting John and his new wife Jane soon

I will spare a thought for my next in line sis, Louise, who died too young at 47yrs

The chipboard christmas,  2009 with our meal balancing on a strip of wobbly  board between two stools in social housing

relocated to a ghastly dangerous social housing unit, margaret moves her bed from eight floor boards, limited space between fire grate and chairs, and returned home not long before with serious illness.  We never recovered from this traumatic time

i am back in time for christmas

I am delighted to be back in time for Christmas 2019.

A LOT has happened indeed.

I have been to America - and back!

this is not something i would do normally, i don't travel to shop cheap, travel to view the sights, "nothing no more" sort of thing.

As usual not a lot has changed, but to welcome my discovery of getting back into my actual blog i will share recent images cos its a nice way to ease my readers back.

It is always fun for snoop value if nothing else.
who doesn't want to see images, out of interest.

SO HERE WE GO, OUT OF INTEREST...ENJOY.

Ann and Margaret in Washington DC

Ann puts a pin for Ireland on the Map of those who have attended the Rare Diseases Programme with Catherine my co-ordinator for the time there

Blood Letting but important

Dr Toro, neurologist, Dr Gahl, Director of NIH undiagnosed programme NIH

We are on the way!  I designed t-shirts in the honour of the trip!

when you find an important notice you 'snap' it!

waiting to board the plane, after a scary start as my twin's visa was not accepted, but thankfully it came through in time.
it could have scuppered the whole trip.

Now this is something ELSE entirely!

23rd May my wheelchair did a nasty 'twirl' and broke my leg and my elbow, and i incurred a further crush foot injury - same damn wheelchair at fault.

Not good, already broken leg, already broken elbow, never expected the busted foot.  Braced leg because i would never have managed a cast, dog and margaret gives me some comfort.

the comfort bit, telly and the dog

this should not happen in a 'modern society' on the 'UP'  a bucket/storage bin being used as a toilet with improvisation for a grab rail, taken from the main bathroom

The pain of this left foot was off the wall awful, and it was dreadful as it all could have been avoided, my too large wheelchair went into a door jam when the healthcare provider refused me a temporary smaller wheelchair to use while i recovered from the broken bones

this damn painful foot

damn foot! OUT DAMN FOOT!

I will end of a very light note ok? Or some are love notes, light notes and never to be forgotten notes, amen.

Isn't she beautiful?  My deceased Ana Chi.

A never to be forgotten 'note,' just in case doctors do forget, and have forgotten

You never forget being shot at by an underage child with a gun, given she is an adult now and much changed, i post up.



AND THE BEAUTIFUL!

 

As promised the truly beautiful, my baby dogs as adults and elderly, and my lovely twin sister, scrubbed up outside Dail Eireann a few years ago, with myself on her right.

Them were the days!