Sunday, October 20, 2013

journey's end with a chronic illness doubled in having an identical twin.

my twin and i are disabled and very unwell.

today i will try and capture what it is like to see a loved one suffer and to try and start a fresh life in a new town so far away from where i had lived.

this has so many strands its even hard to think straight.
where shall i begin with this.
Sunday dinner maybe?

as good a place as any.

Yes, it was my turn to set the table and do the Sunday dinner.  I wasn't that great and collected during the week but glad to say a simple meal put together with a lot of love and decorum was well received and we had a pleasant chat.

but tainted there, was 'Loss.'
I saw it today in my twins demeanour.
the saddened eyes and the bit of quietness that i am not that fond of.
SHE lost a lot coming back to Ireland.

I cannot fully comprehend how it must have felt.
Being away for over forty years she had always spoken of 'coming home.'
she wanted this.
to see and smell the sea and to catch up on the family, see the next generation more often and be part of 'family.'

My twin had lived in Hackney, the East End of London UK.
she lived on the fifth floor and 58steps up.
there was no lift.
There she padded out for forty years, tried to get the education that wasn't available here and try to forge a life that certainly in the 70's was not available here.
Tenacity, pain, loneliness and endurance was the order of the day.
the easing away horrible thoughts and the terror that was within, a very young person leaving home at 17yrs, couldn't have been easy and wasn't at all.
No, its not the same as today for when the young do this now, they are of braver stuff and more worldly and confident.
i am sure though because of this maybe more is expected in the 'adult' sense, but most do have an inner core of self value, we didn't.

i could be wrong.

the struggle in London wasn't easy for many here to understand.
i saw it most as i visited most and it was a struggle, different but nonetheless a struggle.

this side of the coin was kept firmly from the preying eyes of those she held dear and didn't want to either upset or couldn't allow see that maybe at times the struggle was too much.
those times existed.

the yearning for home was to yearn to come back with enough reserve to enjoy and explore Ireland and to be healthy enough to capture a true feeling of 'home' and being where she should be, 'home.'

that didn't happen.

she came home, yes with the enthusiasm. but this was quickly quashed.
Ireland was in a chaos equal to that of the 70's.
her twin sister had also moved to a social housing unit from hell.

both moved for the same reason.
both were ill and both were beginning to suffer in a mystifying way.

Again the empathy and sympathy from who we thought might have it to spare, was non existent.
the help never came.
the love never came.
the exhaustion set in.

her return was a tough and steep learning curve.

the dynamic of understanding a twin, for both twins now as near neighbours rather than as once a year sibling 'love-ins,' was baffling for both.
its very different, and we were floored by this unexpectedness.
forthy years was a lifetime to learn how to cope as best we could.
her ways were not mine and for her too, she found grappling with this difference very difficult.

this dynamic saw us at times torn apart in anger and bitterness toward each other.
resentment too and lack of understanding and - severe shock.
we knew one thing though, for all of it, we loved each other very much and that was not what was questioned.
we simply didn't know each other.

but then we didn't also know what was in store in health, in Ireland and in family.

it was such a time of flux.
as we both tried to settle in our new homes things quickly soured and got dangerous.
I was placed badly in a social housing unit that actually put my life in danger.
being shot at would do it i have to say.
i was shot at.
and i had a lot happen that nearly saw me in a mental institution.
i nearly cracked under the stress and strain of isolation in a community of alcoholics. being abused by a cleric when i was vulnerable would cause alarm to me placed within a male enclave, a single woman alone with a disability.

Mags helped me out of that hell when there wasnt one other person who physically offered
no one was making many moves to get me to safety.
so my twin and i had to make this move.

it was ghastly.
before we could come to terms with our personal relationships, we had to bond together fast and quickly to get me out of a situation i simply couldn't stay in.
but the alarm being too, we couldn't live together but needed to be close and we absolutely knew this.

everything was taken, again finance would never stretch for same again.
so where were we to go?
the help for the decision making, the shifting and the organisation was - nil.

instead, as i mentioned at the Sunday dinner we shared today it was dreadful, we now were in HELL.
there wasn't another word that could adequately describe the next few years.

the notion of family to have us 'in sheltered accommodation' was the only notion.
nothing about what we felt we needed or wanted.
it was the easy option.
it was what middle class do...they turn the other way and are, unhelpful.

Sheltered accommodation in the Ireland of today is the same as 'dying cages.'
you are given a bed, a room painted magnolia which you cannot change and you may get your food.
but that's it.
no pets allowed (we both had dogs).
no redecoration, and in some we visited a limited amount of nails in the walls for memento pictures.
this wasn't what we needed or wanted at not yet 60yrs of age.

Margaret wanted or i felt she wanted to be part of Ireland and live in Ireland as equal and as a person with a chance to experience.
not to be put away for convenience.

at times now, my twin does feel maybe she would find it easier.
this isn't the easy way but i do know, it the far more normal way.
it isn't right to coral human beings in stale and empty boxes of sterility with no art and joy or love or tending.
it is no more than a prison and a sentence, a long one.
you chose that and there isn't any going back.
it was bitterly cold as we started to pack up proby
family seemed to resent that i managed to persuade my twin that we could do better than the sheltered accommodation.
i was called all sorts of things and completely 'outted' by family and am still.
even one close relative saying 'i wish you were dead.'
i was stirring trouble of the status quo.
we want you in sheltered accommodation' but i didn't and no i said and no i meant it.
i wasn't being put away.

Also very tough was leaving the home that my dear sister had and which we jointly inherited but it was too small for two and we couldnt have done it, we knew this, family thought otherwise, we still believe as others do, it was the right thing to do.
we had to move for economic reasons.
we couldn't afford to stay in our birth county.
the hurt and bitterness and upset this caused me was profound.
i had spent 60yrs there and loved every blade of grass in it.
this was the cruel fate of mine and foisted on me by the council and also the lack of ability of the HSE to see that i was safe in my own county.

i have had to suffer that, the alienation from family and a disconnect in my new environment, that i hope to god will change with time.

my twin has had to deal with the shock of illness, disability and family she yearned for and found non existent.
at least in the form she felt was there but discovered wasn't.

so we sat of a Sunday attempting to experience the joy that i put on the table with love and twin enjoyed as best she could, broken isn't a word we would use easily because neither would ever admit to this.
but we are.
we are shattered and profoundly traumatised.

there isn't one good thing that happened when it came to human beings in the past six years.
what a species we are.
the love my twin deserved on coming home was not there.  she is devastated.

it has to have been the toughest thing both physically, mentally, psychologically and emotionally to be doing what i did then, a major move away from my county, all because i was shot at and had no option
the way i was treated and how i was regarded has injured both of us profoundly as we love each other with unshaken love and loyalty.

we are traumatised and unwell.
we are now facing a lonely and sadder end than either ever anticipated.

i write this out of love of one individual who had sad eyes today facing me at the dinner table.

if it matters at all, i wish to say i love my twin and it hurts to see how much she is hurting.

If a person reads this and knows me and my twin sister, look upon us as who we are.
we did so much to make a compromise but we did it alone.
we had little finance, no family helping us with shifting, encouragement, viewing houses or dealing with estate agents, solicitors, surveyors or other.
we were offered little advice in house hunting by anyone.
we were offered no support at all in our new county and were utterly wiped by the HSE who caused us further harm, unspeakable harm.

we wanted more than this.
we wanted to be embraced with understanding, with family.
we wanted a connectedness now, for we have little time left.
we wanted to experience love, and joy NOW, for we never had it.
we didn't want to be sad or hurt or traumatised.
but there is no getting away from it, we are.

when, i ask, is the tide going to change.
when will someone start the healing process say, lets take, within family.
within family to turn from 'we cannot abide you.'
to 'lets see if it can get better, lets all try.'
i am so willing.
but it takes two for this healing and start off.

but right now it does feel very much like as if my twin and self are on an island within an island.
we are only the two of us. together holding each other with the little strength we have and can muster.
but we want a bit more because this is very very tough indeed.

this is extending that first move toward anyone who knows me or us, all.  everyone.

to see us as very very sick, there isn't a doubt there, if you do not see that then you are in denial.
we do need comfort at this point in our lives, not disharmony.
not hatred, distrust, loathing and abandonment.

we have been dealt a very cruel deck of cards.
trying to make light of something that wasn't very funny at all.
it was so so tough, we took everything, simply because not a penny could be spared for buying anything again.
of all, of all who could have done the exact opposite we have been put through the mill, by our own family.

we want the family back, in total, in harmony and with a lot of love on all sides.

the twins.
the conditions we suffer are:
mitochondrial disease
muscle wasting
severe deafness
inability to walk far
severe arthritis,
crohns disease
ceoliac disease
primary sjogrens syndrome
deformed feet
poor vision
brain damage
and personality traits that are clearly and definitely due to such bad hearing from the start that learning was impacted in a negative way.
we had no hearing aids for over twenty five years of our formative years.
this my friends is the educated way of seeing our start.
you cannot do most things well if you have almost total deafness.  science and psychology had now determined the importance of hearing in the shaping of personality, social interaction and connecting with others.

especially when facility was not there to compensate for this, as there is nowadays.

personality and deafness are very strongly linked.
there is nothing wrong with either.

we are good, and kind and fun people to be around, if its allowed in a good way.  we are deaf though.  very.

this, isn't living as we have it now.

mags i hope you are OK, i know you were left home feeling poorly and have headed for bed.
i love you more than words can ever say.
Mum, Dad and Louise are watching over us.
i am only down the road.
take care.
we are OK.
very OK.

 gifts for the children of my social housing enclave, the children who will have very few options and chances.  I loved them.

 in the first flush of enthusiasm My dear twin lights her first every coal fire, in her first ever own home.

we shall survive!

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