To Know or not to Know - that is the question

this is really really personal......
.........very shortly after years..........we, the twins, that is Awynah and her other, Raging Wheels, will either be told or be given information that could be devastating or revealing...it could pave the way for treatment, cure, care provision and lessen the confusion.
Years of it.
Or.....worse, we will be lift in a holy god of a limbo...we will never know other than surmise that our demise has been due to Congenital Rubella Syndrome.

If this is the case, in holy Ireland, what will become of us?
a very very good question to which there are no answers and this for sure will be devastating, as there is no treatment, no cure, no care providing and it will cause SPIN.

We will not be confused.  We will be annihilated so badly in psyche that we will be confined to the inevitable...we will be...waiting to die, in an uncompromising country taking cues from the NHS to pathway us the HSE way.
It won't be pretty.

My twin the Doctor is now on a plane and will be meeting a great doctor of international repute, namely Professor Michael Hanna of Queens Square London.
both of us have had slivers of body parts peeked at under microscopes, blood drawn and pondered, needles piercing and also circling machine which hum and drum around the cranium as its shot with radium, all for the purpose of finding the Whys.
Why can we not walk.
Why do we have generalised dystonia and why do we have a degenerative process involving the brain?
why does one have crohns disease and sjogrens syndrome and the other cancer, treated, but also raging infections to which no one can determine the cause.
Why do both have a shot thyroid, broken limbs as in wasting muscles and painful joints and bombed with morphine and Lyrica.
Why are we going blind and deafness is worse to such a degree that only a sliver of that is left intact and the rest is on the glass somewhere but not in the inner ear for sure.
we are slowly being taken out and asunder and in the meantime we have the unpredictability of the medical confraternity as it literally 'choses' who to care for, in this modern world of sophistication and all things, 'scientific'
Lets not pretend where the world is heading my friends.
we are heading into a shortened lifespan, years as perceived imbeciles and a blast of youth and young men and women, after that its downhill rapidly so by 50 the path is drawn, you are down it one way or the other.
the family will decide along with the state.
you retire, you hand everything over lock stock and barrel to the next generation, you go halfway housing and pathway outtings.
you are sheltered away in the sheltered accommodation and you are here 'for the best', ask though 'whose best is that!?
yours or mine?
Your son or daughter will quickly determine your fate and there will be no going back, my friend.
The one in charge will be an under 40 who will corral you into which ever way he/she wishes to put you, so that she/he may have that blast that is instant, intense, exciting and absorbing.
then he/she will get something!
the lurgy.
he/she will be like me, frightened, waiting, alone and hopeless.
Feel that loneliness and the fear.
Feel the helplessness in lack of choices, lack of services, and lack of family.
FEEL it now, for if you do FEEL it can you feel it so much that you say, Awnyah, what do you think you are saying?  do you realize that you have told us the next generation that we will be heartless and gutless, and inhumane and selfish to do this to our own?
Yes, Awnyah is saying that far too quickly the choices of the young is to put away the old, to decide on vast and gross ways of elimination as does the state in its lack of now, hippocratic oath.  None have to recite this you know, and so it leaves medicine wide open to abuse.
my dear twin sister, with the wooden spoons and doctorate, already demoralized by an inept health system, and myself, who never had a good image of the health system to start with, waiting and wondering, will health systems rise to the bait and give us a better understanding and a better type of end
No one can actually put off the inevitable, but others do decide, actually, how good the end will be and how it will be spend and where.
it isnt Dr. Raging Wheels nor is it Awnyah, who says this today.