Tuesday, March 18, 2014

when shock decides the value of LIfe

its between TWO of US and we don't fully understand how we got there/here and how we get out, alive or DEAD!

Can i image living like this for the last decade of my life?
Do i need it, do i want it and do i actually deserve it.

No.  I am in a London Hospital trying to find out why i am so Rare

tell me this as well....
why should two individuals in so much pain be neglected in such a manner to have to infuse their lives with the Pain of SHOCK now and every day ahead until the day we die?

We look at one such individual, my twin sister.
she spoke at the UN.
She had a TV documentary made about her.
she won the Emma Humphries Memorial Prize for outstanding contribution to women in the UK.

where is she now?
she is sitting watching the TV on the top of a small hill in a small village.
she is disabled, sick and very alone.

tell me do you think this right?
Did she mean to end this way?
No she didn't.
why did she?

I tell you why...because when you are sick and disabled the CULTURE now is to blame us (yes i am in the same rocky boat) for the ills of the world and for the Pain of financial loss within society.
this is not what has happened.
My twin paid her taxes, albeit she began working very late and she has her reasons for this.
she was true to her calling 'to do good, if i can, and when i can' and she did just that.
she didn't gamble on the stock market or do insider dealings, defraud or sell us to the highest bidder.
she worked hard, steadily improving lives of vulnerable women and children.
now she watches telly on the top of the hill.
she hears from very few people.
she gets out even less.
she doesn't drive.

she hasn't a reliable wheelchair.
she is alone and she has been left.
Mary Raftery god bless her, wrote a piece before she died at how the Irish doesn't even see a person named Margaret and Mary lauded her in the Irish times for getting the Emma Humphries Memorial prize.
but the silence of our nation to those who have received due honour for good works is deafening.

she has done alot for others isn't it time someone did something for her, give back to her a modicum of what she gave of her self to others? My dear twin sister, lying in a London hospital trying to find out why she too is so Rare.  the despair of not understanding or knowing any reasons.

and why should I, who was abused, in psychiatry for all the wrong reasons, be near her and see this and feel this pain too.
why should i be penniless now because i wasn't fortunate to have the education, the ability to move away from Ireland and then i was dumped unceremoniously into the hands of psychiatry because i too was vulnerable and scared and had a reason to be.

why should two individuals who did actually work for others be left in such a mess at the end of their lives?

we are in shock.
we are in pain, both physically and mentally.
we are very alone.

we are only 61 and in real terms most do not have to face this so early and certainly some do not face disability or pain or illness at all.
they may face old age, i feel that and more.

the singing ambulance man tries to cheer us up when he finds us in the corridor, London hospital recently

my fate and it is fate will mean that i will have to try and so will my twin have to attempt to find the way to deal with a spare decade of decline.  if i see it now for say the past few weeks, i would hate to believe it will be like this.

waking and sleeping seeing no one, not doing a lot and being too unwell anyway to do much at all.
imagine being so jaded tired that you cannot turn over physically in the bed.
imagine being so tired you weep and tears fall knowing you have to be the one to get off the sofa and go make a meal.
imagine being so tired knowing that there isn't a lot you can actually DO to bring your eyes back in focus when they go out of focus due to exhaustion.

Pain, real physical pain makes it impossible for me to sleep, my body is an alien thing, turning me into a twisted heap, trying to get comfortable and never being able 

to you cannot do anything with extreme fatigue and we are this way because of Mito Disease.

we are this way because our energy mito cells are dying.

so when an energy filled life and style ends do you just forget that individual, leave her to die alone on the top of a hill despite all that this individual has given to society.
and do you allow it happen.
because as i see it, you are allowing this happen to your own.
your very own.

 I will sing to you and so he does before i go to the theatre for a small op to take muscle from my thigh, a quest to find out the reasons why so ill and so so tired all the time....but he may sings but only he does for either of us

1 comment:

Anonymous said...

I'm sorry you feel like that, Awnyah. I can only imagine what you're going through right now. I have never been as unwell as you and your twin. All I know is, I will be as devastated as you are if I were to be in your situation. Still, I am glad that you are surrounded by people, like the singing ambulance man, who is always there to cheer you up. I'm thankful that he accompanies you when you're down. Don't worry. Everything will fall into their right places. Keep your head up! :)

Patricia Briggs @ Source Brokerage, Inc.