Nothing replaces humanity

It's hard to know how 2015 will be any different to 2014. 'Austerity' in Ireland (republic) and the UK continues to batter the most vulnerable. Right wing governments who feel the only course is to cut, cut, cut....not from the rich or themselves...but the poor and defenceless, wreak havoc.  This depresses me. Admissions to psychiatric care has risen exponentially like never before...where many will get the label 'mentally ill' (not socially oppressed) and may never find a job again! stigma sticks even in this alleged enlightened age. Malnutrition has returned in the child and elderly population not seen since the second world war, food bank's risen by300%...and no end of the road in sight. Suicide of sick and disabled people increases as the UK 'sanction's' those with difficulties and cuts welfare. The never ending stream of 'unfairness' eats my soul alive. I feel powerless to change it.

My own disability fight continues. a fight to get a clear diagnosis  No-one realises the stress of 'not knowing' WHY my body fails. People tell me it's not 'important' to have the diagnosis...but it is. It Is. myself and twin are now deemed to have a very rare genetic disorder. very rare...RARE. huh? is this helpful. no .  dealing with a rare disorder not even written about, known about, seen before, might seem scientifically exciting. to us twins it's a nightmare. Why , because Irish health services are not that sophisticated...they just don't understand. they operate on a diagnosis they know, not RARE!  RARE, for THEM, means 'made up by the client' and they treat you that way. it's hell.
Me in Queens Sq, London, UK February 2014 having tests.

Ann, my twin, being tested in Newcastle Royal Infirmary Dec 2014 UK.

 

We struggle still, to get basic services and a decent powered wheelchair. and next my twin's van, which transports us is 'dying' and we just DON'T have 30,000k to buy a new one. What will we do...don't know!

So folk between the uncertain world of 'Austerity' and our own uncertain health...what can 2015 realistically bring? We now in hopeful vein DO have a small campaigning team here in Greystones willing to raise funds for our wheelchairs...the van? ...that's another story...The people of Greystones rallied and this is truly fantastic.

I have ideas to make changes. but the last few years have laid me very low. I miss my friends in the UK. I miss Hackney. I miss my work. The sunrises, birds, sea are all glorious...but NOTHING replaces humanity. PEOPLE are the true soul foods. I need more ...

What do you want? well it's complex!

Christmas is upon us and children are being asked; "what do you want for Christmas?"  ah it's a great question until the answer proves that's going to be difficult or impossible and the wailing and weeping can be heard from here to the North Pole. These human elfs can be surely marvellous little things but ...well life throws barriers in the unexpected places!  not well understood by elves of the human kind.

I'm not an elf, but I WAS asked by a cousin who reads my facebook page "what do you want?" this apropos the HSE services. for her, never been of need of HSE services, the mystery is why, if we've got new orthopaedic shoes, other services, what MORE do we want. My simple answer was a 'decent wheelchair'. Ann and I looked at each other and laughed as it was the first thing out of our mouth. A 'Powered Wheelchair'. but not just any old bucket.

But you see people don't really understand why we need a powered wheelchair when we walk. Seeking a judge for our DAG;T Christmas Cake competition my PA (personal assistant) left me outside a café and I went in to ask the woman would she be judge - yes. success. then she arrived at competition, I was in wheelchair and she declared she didn't recognise me as I was ....er....I helped her out "walking" . "yes", said rather embarrassingly.

This happened again as a woman arrived carrying a raffle prize to my door and I in good cheer, walked and opened door. She looked at me as if I'd just had a miracle cure...but I saw you...."yes", I rescued her, "well, it all depends on the day". 

so "what do you want?" is difficult for many to understand...why does someone who WALKS need a Powered wheelchair? and furthermore, having a home help and a PA is seen as luxury by all non-disabled people. Total generosity by the HSE so why ask for MORE.  Are you not being too 'greedy'. The sub-text is that I should be grateful. grateful for the demeaning, humiliating process that is 'care' from the HSE. Why should I be 'Grateful'?

These are people who simply cannot 'get it' about illness and disability. when you look apparently well, go to the door on your feet, hop into a shop, on your feet...all equates:  "nothing wrong with her". stemming from this is a belief that we are trying to get 'something for nothing'.

Some see us as 'scrounging' off the state and if we have something 'free' we should stop asking for MORE , even if we still haven't the one Item that in fact, creates EQUALITY. The POWERED wheelchair.

well I can't really, today, explain the complexities of a situation where one day/hour/morning/afternoon I look 'normal' (=standing) and another day/hour/morning/afternoon  look NOT NORMAL (=wheelchair). But I'll try....

Here is the reality:

1. I have Mitochondrial disease (a disease that 'kills' the energy cells(mitochondrion) in the whole of our bodies) I am 24/7 longing to lie down and just sleep. this is not just 'being tired'. it is being one step close to narcolepsy!
2. I have Parkinson's
3. I have muscle myopathy (like muscular dystrophy) My muscles are dying.
4. I have spinal arthritis and severe damage = severe pain (morphine needed)
5. I am hypothyroid (also creates fatigue)

so the next time someone says "you're looking well" or "what do you want?" I'll try to be patient...but there comes a point where I would just Love not have to be explaining why sometimes I am walking and sometimes I'm not. love that someone, no EVERYONE, would understand the complexities of illness/disability.

Sometimes when I'm NOT in wheelchair the only reason is I have no way to travel or I find it difficult to use given the circumstances.

The why's & wherefores' of wheelchair use is not just a simple understanding she either does or doesn't.

It's a complex - she may, may not, does, doesn't, sometimes, most-times, off, on, yes, no....and a lot is determined by environment, support, circumstances: good day/bad day.

no, it's not simple.

I stand, I walk, I use a wheelchair.