when it starts getting nasty and bitter

the disappointment of it all at 60yrs of age causes me to write this blog tonight.

it wouldn\t have taken much to step up to them steps and say the friendly word 'hello.'

it didn't happen.

I saw one white haired person consider the situation with the brother who is also white haired but they just moved on and away, the deliberation was not long and it was perceived by us as the basic snub and obviously so.

one cheery face looked up with a gigantic wave and an effort was made to meet with us.

unfortunately the meal was over and we were out the door when we hit upon the only walker of the three who stayed to say that important 'hello' that important greeting, if only for that and nothing else.

we detected it was only that.
we tried to encourage engagement of a kind to come visit our new homes, it wasn't received that enthusiastically for the rhetoric of 'oh our stay is well mapped out by others.'
(nothing is written in stone). we feel.

we felt so lost so we did.
knowingly lost amongst those who we had considered one of 'us.'

we were and realised we are not one of them.

we are and we do understand this well...the flotsam.  the bits that no one really wants to be hung around with.
Or hung around their necks either.
the ones that are profoundly disturbing to be around.
i believe for one reason only we are disturbing to be around. we say it as it is and we have always done this.
it isn't much liked and i guess most wouldn't tolerate it for long either.

what we cannot cope with is the denial that we are kin.
the denial we are sick and disabled and its genetic and they have actually much to fear for the offspring of the rest of the decades ahead, when we are long gone.
what has 'got us' will 'get them!'  but they fail to see the enormity of it or the impact it presently has on us and could and will have on the next generation.

We are intrinsically linked.
We cannot be that forgotten even if they wished or wanted.
we will be remembered for the genetics bit if nothing else.

today i composed my funeral list and this isn't morbid or creepy.
what would be creepy would be the weeps and the nodding of heads on wrinkly necks and the younger generation standing by not really caring that much of a toss.
i would be sickened and turn and tap the inside of the casket.  knock, knock but i hear you all out there.
'ah she had a tough life all the same.'
'yes, she did.'
'she was her own worst enemy'
Ah she was.
but she was SO talented and creative.
yes she was.
Poor woman.
Its awful really when you think of it, how it all ended for her?
It is you know, you would never believe it would you.
she was difficult.
without a doubt she was, do you remember...ah i do, i remember that, and how we tried to help her then...

i am now suffering the restless legs i experienced when alive.
i am crashing around in the dark there and yearning to get out and about and trash the fecking lot who are going to place this coffin in the ground and bless themselves, toss some dirt on top of me and fling some plucked layby flowers onto the lid, the one with the brass cross.

yes, i see it all.
but it wont happen for the list will be made and i don't want them doing any such thing near any such casket and the hypocrisy of believing anything they ever did amounted to the 'much needed help' they whisper about and nod them wrinkly necks and the flap of the hens and cockerels.

i think i will be burnt.
fried, and cast out...which is only proper.
yep.

I felt very low today.
so did the twin sister.
it isnt much liked that we plan a fundraiser for the new van and the new wheelchairs, cos of course we show them up for what they are.
mean and grasping and fecking selfish.

If we put out there an account name and address so that we can get about together and try and enjoy our lives we are seen then as showing them up in some kind of fashion.

we would be showing them up in some kind of fashion.
they help us not a jot but could do and could shine with all if they partook and behaved half decently and rattled the few boxes and said 'hey we helping the two of them crips out there, who need the van and the chairs even to do the basics.
you do get kudos for shaking boxes, carrying the flag of the crips and claiming them as one of your own, not blaming them for that position in life.

everyone loves a person who can shine above the rest and show they care.
but all really that kind of stuff is lost on my lot.
they think that too is beneath them.
they never shaked a box anywhere, but might do if it brought even more notice to themselves.

in this instance its called honor glorified, the relatives are taking notice of the least able amongst them and there would be the words, 'fair do's' to them you know'
everyone loves this and everyone benefits, everyone feels the glow of the connectiveness of purpose.
but if, if you are mean and small minded you think of the embarrassment of how part of kit and kin could do such a thing.

to be sure the name will be writ in the bank tomorra.
and the bill board half paid for already where i shall post the bill.
the one which says Ann needs a van..help if you can...sort of thing.

blast the one who think this is going to effect 'image' going to bring about 'shame and embarrassment' that we, of all the family should do such a thing.

but do it we must. we are not doing it to save the money we have in some bank account.
there isnt any in any bank account.
the very reason we are doing this.

we NEED the help of a suitable van and two suitable wheelchairs, not ones where the wheels fall off and leave one sister embedded in the wall on the way to the neurologist.

and that is why more will walk on by i guess within this incredibly law abiding family of ours.

i am not picking on anyone in particular, which is a good thing.
but what i felt today of the disconnect has made me react in a fashion that is true.  If i am not in, then why should i be so loyal fgs?
what holds me there in that place of reverence for my own, if they disown?

so we were crushed with disappointment that our kindred spirits were just that, ghosts and spirits, of maybe time past.
i am sure glad that day is over, this day is over.

I am not ashamed of disability and not ashamed of stating thats its far too hard to live with it, when your own are not that supportive at all at all.
so unsupportive they walk by and dont even think twice much about doing so.
walk on i say.
if we evoke such a response, maybe that is the better option.
we felt crushed though, as if left on the side lines with our chips and dead fish.
take care, the knocks will be heard from dark casket boxes if anyone puts me in them things.
i wont be afraid to wake half of you up.