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 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 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.

No comments: