Monday, December 22, 2014

Christmas time thoughts 2014

Ann Kennedy

21st December 2014


Christmas time.

Christmas is a funny time of year for me.  It always has been.
I am an identical twin, i was supposed to be born along with the sis on christmas day, but due to Mum being far too large and far too tiny the gynaecologist of the day said he didnt think Mum should suffer further.
He induced us.
She gave birth to two healthy (?) babies.  We were over 6lbs each.
Ann and Margaret british museum, circa 2009.
when i went to UK to see the specialist
Wrapped in cotton wool in 1952 on the 25th November my mum was full of emotions.  Firstly she didnt want girls she wanted boys, and as she told us later in life she felt she was going to produce ‘monsters.’
We feel now maybe she wasn’t half wrong.
Everything seemed normal to all around us as tiny twins.
But seven years on we found we were not.  We were deafened by the viral contact in the womn of German Measles, ‘rubella’ and so we are in fact Congenital Rubella Syndrome Adults.
Rubella isnt well understood now as its been deemed eradicated.

We did not have a good childhood.
Times were difficult, akin to what Ireland is experiencing now but without much technology to lighten the load for my mother.
We also were from a priveledged background and my  mother and father had nothing to show for that, simply because like every age, wealth is such a movable thing.
It went.
Mum and Dad valued education and felt it was the way forward for their children.  We were encouraged to be ‘achievers.’
All six children were individuals, very forthright, strong and feisty.
We were no different in many ways but growing up this took decades to actually surface.
We were deaf without hearing aids all our childhood days and we were far more deaf than ever imagined.
With such deafness its astonishing i ever completed schooling and come away with an honours leaving certificate.
Fast forward, i was a lonely child then and in some ways remain so today.
I spent all my days in school either belting a ball on the hockey pitch or crying in the library, but keeping away from other children was my main aim in life. they terrorified me simply because at the age of 57 i learned i had Asperger Syndrome.
i am outside St Toms' watching people come and go, hated the wards and the heat, over in UK for tests found - chronic muscle myopathy 2008
It shattered me during my journey in life, unknowing all about why i was so unhappy and so different, i loathed myself.  i succumbed to deep depression, binge drinking and chronic years of self loathing and self injury.
Decades spent in and out of mental hospital and no way getting further in life.
I was talented indeed and wrote childrens books, some winning book design awards and two being made into mini slots for children’s tv.   This childrens writing thing  is not unusual for people with Asperger Syndrome.
Also not unusual either,  i was vulnerable and young for my age and naieve.
I was sexually abused as a child and then again by a Marianist Order priest, when i came into contract with the now deceased Larry Hogan the singing layman of the 70’s.
Trapped in terror i amounted to little.

I spent all of my adult life struggling, in and out of psychiatric hospitals. I lived in social housing far away from the wealthy belt of Killiney where i grew up.
I had no friends and closed off from the world i painted in a studio after which i walked miles around the areas where i grew up.  With many a dog in my life i had these as complete and utter companions.
The family was never close . the meal on christmas day in times past was enchanting and glittering.
It was a formal affair of upper middle class standards.  Some part of me lived on that day in awe but in fear.
My christmas therefore is not that particularly happy and drenched with memories for me.

My life was enveloped in fear.
Getting crohns disease and having surgery in 2002 was the turning point.
Thinking i would not get through this i chatted with a psychiatrist at the hospital.
She found me engaging, intelligent and utterly surprised at the medication i was on and also the amount.
When i nearly died from surgery i decided to get a life.
I sold a family heirloom to the National Library of Ireland and received E7,000 for these art journals of my great aunt ginnie.
Furthermore i didnt really understand my aunt and the fact that the National Library had a considerable archive of hers there.
To my astonishment two members of the Library, the director and another brought her whole lifes work to my social housing unit and we poured over the archives all neatly conserved by the Library with tender loving care.

My aunt was single, her name was Jeannie Conan.
I think she came to me at the right time.  Also another famous Conan is a relative, he is of course, Sir Arthur Conan Doyle.

Three years of therapy, followed by an apology for ever being in psychiatry i managed to quit the drugs, quit the self injury and also quit the cigarettes and i can assure you, quite a feat.
The bigger feat being, i fought to join the world, late yes, but surely did.
I experimented with clothes, and found my love of dress and colour, i had always shorn my hair very short but now let it grow and i experimented with my feminine side.
I loved it.
I felt attractive, i felt confident.
There was no going back.

Unfortunately just as my oil painting was coming to a real maturity and i was exhibiting quite a bit, i became very ill indeed.
I forced the medics to have me sent to the UK to find out what was wrong with me, i did considerable researc myself to find a point that i could start on this particular journey as i studied my bloods as if i was a research scientist.  I wouldnt have got this far if i had not done this.
Certain things have been discovered but now after ten years i am closer to knowing than ever before.
I have recently returned from Newcastle UK where i was under the great Prof. Chinnery and met also Dr. Grainne Gorman.
Us twins, yes both of us became ill roughly at the same time  are now wheelchair users.
Circumstances in social housing changed and i was persuaded to ask for rehousing due to my disablility but it turned out a disaster and i was placed in danger.
Being shot at saw myself and my twin spend a very difficult few years sourcing a place to live.
We had to move out of my county of my birth, something asperger people do not cope well with.

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

mags my identical twin exhausted, with my maggie mai, the twin got more than a shock and a bargain when she came home to Ireland.  She is still in shock
When i think of my age and how little i have seen of the world and also of Ireland and yet see how far i have come i struggle with the idea of how to spend my dying days well.

To me its now a case of wanting badly to make up for lost time.
Vicky Park, Hackney London
For someone lost entirely to life, only visiting my twin in Hackney once a year and never leaving dun Laoghaire i have not experienced that much.
My first overseas holiday was this year to finland, following the experts at the Mitochondrial disease conference there, for i was still attempting to find out what was wrong with me, that trip has got me now on the brink of knowing.  My first holiday being at the age of 62, effectively.

But what do i do with no money, very poor health, no friends and an unsupportive family?  I write to Santa.
I would love to see Ireland.   All of it.
I dream of buying a camper van, or similar.
I dream of driving slowly and having a ball in nature for truely nature is what has held me all this time.

I dream of having no more struggles to get the health care needs met and i dream of some joy before i die.
Ah babe, i know you will be close to me in my sickness and poor health
when i got sick duchess was alive and stayed close to me too in my very poor health.  All just never came near me.

I have no proper wheelchair and my van is dying.
I am too, i am dying of a rare, (seemingly it could be rarer than i ever envisaged, after my last exit out of Ireland).
I need to move.
I want to get back to the county of my birth, Dun Laoghaire and feel at peace.
2010 before i left my county we had wonderful snow.  Here i am in the People's Park Dun Laoghaire, chihuahua safe from icy snow on poor little paws!
the Quickie Jive wheelchair
we feel would offer us everything when we decline further and presently.  this is the model we fight for now, for the past three years and more

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

Christmas now is a few days away.
People are dreaming and planning their new year.
I am dreaming of planning a chance for a decade (if god is willing and good) of fun and peace and joy, to experiement with travel and just ‘be’ rather than ‘struggle to be.’
My life has panned out and potted out not well.
But i was always ready for the moment of getting into a world i never understood and never will, i guess.
Nothing really stops  me.
But right now my dreams can never be fulfilled on a disabilty pension and in a world where people are not as caring as say in my mothers time or when i was younger either.

How can i became the princess of the cinderella story, who will never marry a prince or wear that wee slipper?
My dream is to travel chariot style in a camper van.
After all, i learnt to drive at 53years of age and i now drive an adapted van, not many would do that.

I post this off now to one or two places, like stuffing the Santa letter up the chimney to be found in a hundred years.
ana chi asleep!
Or place it in a good spot to be discovered and realisation to begin to happen.
My dream realised.
With my dear twin and my dogs, will someone give me a chance to have one decade out of maybe seven to be happy, free and loving life.

Ok then the chimney i chose is yours.
I await but lets hope not for one hundred years.  Bones do not drive camper vans well, nor does a skull have eyes to see.

Take care.
Ann kennedy

I live here because the sister who gave my mother german measles and gave us rubella viral infection died prematurely and my dad left us her house in dalkey.
She has through death given me a home.
Now i want my parents, my sister and my aunt to rubber stamp my final wish.
Bless them.
Bless my twin, i love you so much.
Please allow a blessing for me this christmas.

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

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