Chritmas is over-2014 becons

Yes, I'm pretty pleased too.  It's exhausting to one soooo sick. The stress of it mind-boggling when everyday matters like putting on your shoes, washing your hair, or having a bath saps all energy, let alone 'dealing' with Christmas'.  But I didn't do too badly really. I got involved with DAG:T Christmas Bake-off and enjoyed it even if it took weeks to recover and as the 'recovery' ran into Christmas shopping etc I really haven't yet 'recovered'.

But the Care crib was a GREAT success. and LOADS of food went off to elderly/needy folk. And then to cap it all we persuaded two older folk age 88 and 85, neighbours who live alone to join us for Christmas.  Now THAT was some coup as they had spent 30 years on their own for Christmas. We think they enjoyed it!!

But now looking forward....well today I can barely think...befuddled by tiredness, on antibiotics and a body that slowly yet surely is on a very downhill slope. I wonder how 2014 is going to be more enjoyable as I fight to get a decent wheelchair, decent help and decent care.

I don't want to spend 2014 begging for every little thing I need to make my life endurable. so I will fight a disability rights agenda to my last breath.

I will try to align with s disability rights group.  But there really is none to speak of.  Ireland's disability 'community' is hooked into a charity model as clearly as stuck with super-glue.  That's the way I see it anyway. 

There's only one person I feel any 'fellowship' with (sorry wrong word for a feminist) but you know what I mean.  Suzy Byrne; the only disabled woman I can vent my spleen at who understands my whole anger and my whole 'piss on pity-rights not charity' philosophy. SHE alone, affirms me, comforts me and validates me.  Otherwise I'd surely believe I have not one single fellow traveller in this State of a pitiful country for disabled people.

 'Nothing about us-without us' sort of thing has not permeated the HSE which continues to believe disabled people MUST do as the physio/occupational therapy team see fit!  You are NOT allowed think for yourself, at least not here in Co Wicklow.  If you don't like what they say, if you don't AGREE with what they say, if you argue about what they say you are called a 'serial complainer'.  (ME) or as my twin, who is outrageously designated has having 'unreasonable complainant behaviour' , this apparently part of the 'vexatious complaint procedures' yet they never took this policy through in my sisters case so how can she be deemed so?  We'll let the equality tribunal sort that out!

2014 will be my all out attack against the HSE philosophy here in Co Wicklow that as a disabled person you have no voice.  They clearly and viciously mark you out if you do have a voice and they clearly and viciously 'punish' you for ever saying a bloody word against the service.

Even when a newcomer comes on the scene the old incumbents pass on the negative stereotypes so you just cannot present yourself anew to a new manager who might view things more kindly.  It's barbaric when two managers in a HSE service can demonise disabled people such as to drive them close to suicide.  But this is Co Wicklow if you ask for a better disability service.

I intend to fight these stereotypes, I'm determined the people of Co Wicklow understand Rights not Charity as a philosophy for the care of sick, elderly, disabled people in this country.

That's my resolution for 2014.  As well as losing weight and trying to enjoy myself.

But in a country such as Ireland and a conscience such as mine, as sure as eggs is eggs, I'm heading into a storm of protest in 2014.

“Relentless Cheerleaders For Austerity” | Broadsheet.ie

“Relentless Cheerleaders For Austerity” | Broadsheet.ie

This has to be read.  I now understand why so few of my letters get published and why the huge disability march this year received very little coverage.

We must get a newspaper up and running that is 'centre-left' or even 'left' (properly 'left'  not Gilmore's 'left'!

This country is fast approaching fascism.  With the pressures squarely on the sick, disabled, ill, and elderly...oh an the 'non-productive' young unemployed who are told by state agencies to 'leave the country'.

Are some more worthy of others? The scale of suffering

I wonder is there really a 'scale of suffering'.  If you have this you have 100% care and support, if you have that you have 50% care and support and if you have that, you'll get none!

Well there is actually.  Those with cancer will often be seen as the most worthy of love, care and support...whilst those who have mental health problems...well , no, nothing much at all!  Someone , young with a brain tumour is far more worthy of 'Oh God how dreadful' , if held against someone struggling for years and years with a neuro-degenerative condition, that makes 'Quality of life' miserable.

Of course a big difference is having a loving understanding family and not having a loving understanding family. The former ill person can be hugely helped and supported by LOVE whilst the latter can sink into a mire of depression and anxiety without the love and support a family should/could give.  But not all illnesses have the same cachet in the stakes of 'love' to be offered here!

People's perceptions are shaped by growing up with myths of 'worthy' versus 'not worthy'. From childhood to be blind was seen as a worse fate than to be deaf, yet Helen Keller said something very astute about being deaf and blind...she said 'Blindness cuts you off from THINGS, Deafness cuts you off from PEOPLE'.  For her if she were to be 'cured' of one sense she'd chose was her deafness. She knew her isolation from PEOPLE conversation, relationships, community was what hurt most.   Yet did you know public perceptions about being blind versus being deaf means Blind charities get three times more than deaf organisations in donations.

There are age perceptions too.  Little children's illnesses are perceivably far more worthy of help, love and support than say a 70 year old. Even more so if the child is pretty, smiley and 'adorable'. Photogenic for fund raising. Newspapers love a child-help fund-raiser.

No-one likes this discussion and I won't be popular for this conversation. But when we divide who DESERVES the love and support, then we are on a slippery slope of inhumanity.  When we see some illnesses, some impairments and some individuals - based on age as more deserving than others then the soul and heart has been compromised.

For all are worthy and suffering in all it's guises is a monster that needs the fighting of a love that can beat despair of that monster. 

And no suffering is 'deserved' or 'less' than the other, no age group more worthy than another for Love should shoulder all....irrespective of the differences, or ages.

Staying Sane in Ireland!

Minister Kathleen Lynch  is a Teachta Dála (TD) for the Cork North–Central constituency and is the Minister of State for Disability, Equality and Mental Health.  See those very titles!  Disability AND Equality AND Mental Health!  Here in the Dail she wears the ribbon for Mental Health Awareness...
So she looks the part. 'look I wear the green ribbon of awareness' whilst at the same time I ignore disability and equality.  She has NEVER been shown to be the Minister of equality or Disability or Mental Health.  It goes far beyond wearing a ribbon Minister.  It goes right to the heart of your HSE managers so corrupt of principles they'd sell their souls to the Devil to keep their jobs and big fat salaries.  They would and do answer your inquiries in just the way you want them to!

You might as well say; "just tell me this disabled person is a lying scheming, manipulator who fabricates, embellishes and fails to really understand how much you are doing for them".  so that's just exactly what they write back to you, Minister Lynch, Minister of Disability, Equality and mental Health.

Then she passes her HSE mangers responses to the alleged, 'lying, scheming, 'serial complainers...of the HSE Services' just so they can see that the HSE Manager has reassured Minister Lynch that you, you scheming, lying, manipulative disabled person is so very evil to tell me the HSE manager is not serving your needs.

No matter the manipulative ways the HSE manager garnishes her story in fabrication and injustice or at the very least , fails to 'tell the whole truth and nothing but the truth' . In so doing tarnishes the reputation of that disabled snivelling little shit from Greystones that wrote to you Minister Lynch .

Well Mrs Lynch , Minister for Disability, equality and mental health, this snivelling little disabled shit has a PhD, whose integrity the HSE has before tried to tarnish...and did not succeed.  And I'll be delighted when I can go public on THAT little bit of 'settlement out of court' in due course to the benefit of the snivelling little disabled shit that I am.

I forsee that two snivelling little disabled shitheads in Co Wicklow will, in due course, obtain another PhD, this time in truth, Justice and integrity.  You are duly informed Minister Lynch, and Co Wicklow HSE.

'Piss on pity-Rights not charity'

This week I rang into 'Liveline' an RTE programme hosted by Joe Duffy.  They were interested in what I had to say about 'top-ups' to charity executives and asked if I'd be willing to go on air on Monday, yes, I said OK.  I had to be at home at 1.45 - 3pm , to be 'available'. 

They called me twice that morning to discuss my views before the programme went out.

At the beginning of the programme Joe Duffy's intent was to speak  about the Central Remedial Clinic's CEO getting 'top-ups' to his salary; apparently taken from money raised by ordinary folk who thought it was going to poor crippled children or adults.

I said I was horrified about the top-up's and that was ok, then he listened to two parents who had CHILDREN at the CRC.  They had a good long chat and I was at the end of the phone bucking to get a word in for ADULTS, for the issue of charities plugging the holes of HSE failure to support disabled people. So I 'interjected' to raise these points, mentioning the failure of my sisters and mine powered wheelchairs...  Who provided them he asked, I said the HSE....ah that's not what we are talking about he said.  I remonstrated...what I'm trying to get across here is a) the charities are not doing the great work everyone thinks they are b) and neither is the HSE and frankly why should charities plug the holes anyway. Charities have become 'businesses' and THAT is fundamentally a private, non-state service, paradoxically funded by monies given by ordinary people! Charities exist usually for those people the Government don't want to support such as the elderly, homeless  Drug Addicts, Disabled people etc. We cannot get rid of charities, many do good work, but politically marginalised people should be supported by the state as equal citizens.

I was saying or trying to say why should disabled children and adults have their support needs met by charities.  He didn't like this, was rude and dismissive and moved back to the mother with child at CRC.  Then my phone-line went dead! They cut me off. 

A woman rang back to say thank you and I said 'but you cut me off' 'dead in my tracks'.  Her excuse...to free the lines for other callers.

The ordinary person in the street give generously to charities, especially those involved with sick children, Jack and Jill organisation have been funded by the public to the tune of 50million. Laudable indeed, but very sick kids are emotive, not so elderly or disabled adults.

When it comes to older disabled people...forget it.  The HSE doesn't support me, my nurse whom I called yesterday as I was so unwell wasn't available, and has not yet phoned me.  My GP I phoned twice on last Friday, no return call. I called emergency doc who gave me medication that looked like might not be safe with my present meds so called my GP surgery again on Sat morning, no return call.  Monday a GP called ' I believe you wanted to speak to a doctor', 'Yes I said but you are too late, I took the pills and hoped they wouldn't kill me'.  She said she'd only got the message Monday morning.  OK so...great...I could have been DEAD by the time she called me on Monday!

Charities don't support me either.  I have tried to get support from a charity dealing with Parkinson's (my condition) well a helpline is available but no local support.  I tried the Muscular Dystrophy society (I'm covered by them for my muscle disease) a girl came out , took details I never heard from her again.  They had the gall to email me asking for a Christmas donation! When I complained a man rang me, I couldn't take the call and he never rang back. There is NO organisation in Ireland for my disease, which is so rare I have to be treated in London - though a facebook page is available.

The HSE have not provided me the means to get back to lecturing, or even out of my house,  I have 7 hours a week PA, as I use a wheelchair, this is NOT enough to get me back to work.  I asked the disability social worker to help, he came, took notes, said he'd give it some thought (on how I get back to work) but I never saw him again and he refuses to answer my phone calls or emails.

My powered wheelchair provided by the HSE is so crap my fist trip back from train station so ruined my back (spinal arthritis) I was admitted to hospital the following day.  The hospital bed provided by the HSE is sitting unused in my bedroom for a month now.  First there were no sides to it (I need these to help me turn over') , then the mattress was so thin I felt the slats and motorised mechanism which was too painful to lie on,  Then the motor died, days to get fixed, then a parcel arrived!  Ah good, the sides....no...wrong item...no sides. 

So the issue is NOT the 'top-up's to CEO's, the issues are why should disabled people, citizens of this state have their needs met by rattling buckets and philanthropic cheques from 'do-gooders' or 'feel-gooders'. We are citizens.  Yet adult disabled people, elderly people won't find support they need to live life 'worth living'.  Top-up's to CEO's and Medical personnel is a serious issue but dealing with them won't save a medical service that just does not exist for disabled people.  Charities can't plug the holes and shouldn't , for it's humiliating and degrading to realise that to get what you need you have to beg for it.

And the only thing people do in this country when they are angry is phone up Joe Duffy!  and he is as rude as hell and won't be changing anything ....we need to get onto the streets to protest.  but no....that's not what this population does. years of subservience to Church and state has groomed people into sheep!  They will be shorn , fleeced, but they won't protest.  It's quite sickening.

Ireland's Health Famine and the chosen few.

It's a very cold day out there, but the sun is shining and there is a clear blue sky.  My home help is just gone, wracked with worry for her son-in-law with liver cancer.  It doesn't look good, she admits and we share the unfairness of life.  Yesterday my cousin Lucy called and I was delighted.  No-one bar my twin and neighbour Carol ever cross my door and it gets very lonely these days.  I always had visions that my English friends would 'keep in touch' when I left the UK after 42 years but I don't hear much, well, nothing really, from them at all...at all!  Only one has crossed the ocean to visit.  Again this is a shock to the system.  You can tell I'm not having an especially good day today.  I think because I'm very tired and done my back in again.

I wonder really where society is going in it's moral/ethical visions of 'caring', or if 'caring' is really a bygone ethos, almost 'old-fashioned'.  Here where I live someone on the 'community' forum declared that people HERE would not 'walk-by' the needy and homeless as if this place was somehow the centre of 'caring' in these parts.  it was arrogance, for around about me loneliness is killing the elderly and not so elderly. not so long ago I put a note in all my neighbours doors asking if anyone could walk my dog when they are taking their own dog out.  not one answer. so tell that to the woman who believes people here in my new village would not 'walk by'.

then there are the chosen few in society who get all the love care and attention of whole communities, whole nations.  these are usually children.  very sick children.  I'm the first to cry when I see a very sick child, but the almost hysteria-like campaigns around some high profile little kid, usually dying of some dreadful disease, worries me. I look upon the t-shirts with loved pictures on them, whilst droves of 'communities' go on walks, fun raising, and such-like and wonder how THIS kid, became so famous in his/her suffering.  yes, I do like to see families supported, no doubt about that, but there are adults and elderly really in agonies of suffering and because THEY are adults, not being so cute, they don't get the same support, campaigning for their suffering. no-one rallied when the 90 year old man, my sister's neighbour, was in hospital recently and there were no relatives to visit or take his 88 year old friend to see him.  my ill sister did that.  when he came out of hospital none of his neighbours brought food.  we did.

my community nurse spends most of her time with new born babies.  they get the obligatory visits but the elderly do not. so whilst the local 'famous sick kid' is feted, campaigned about, t-shirts made, events arranged, what about all the other sick disabled, elderly lonely people.?  and what about the politics of such campaigns.

is this a real socialist community all-together effort?  no, this is apolitical.  it is like an event,  staged and fun to do.  it makes people feel good.  'the feel good factor' is not political.  it is a sop to guilt. whilst fighting little kid battle, we can ignore all kids battles with the corrupt and dying infrastructure of our health service.  these campaigns say nothing about the state of this nations poor, neglected sick, elderly disabled population.  private entrepreneurship - fund raising, is charity and charity itself sucks the responsibility away from politicians. we have kids living-living in hospitals because they have tracheostomies and no local care/support for them to live with their families.  we have disabled people with no wheelchairs, older people with no home helps, and the list goes on.

so whilst the 'community' makes one life better or easier for one child there is not the out cry about the poor abysmal medical/social services for the majority of public patients in this country.

but I am a hypocrite, for I'm doing just the thing I hate...fund-raising for a medical need not provided by our heath service.  Who am I then to cast any criticisms on these individualised/popularised/mega hyped 'poor kid needs' campaigns...but isn't this the awfulness of it all.  we are all now out with our begging bowls. we are back on the Dickensian streets of Ireland, famine Ireland, begging for what we need.  in my  case, and my twins; we are 'begging' for good powered wheelchairs'.  charity fund-raising IS begging.  is demeaning and humiliating.  and austerity has got us all, who are sick and disabled rattling the boxes and begging bowls. we have opened a bank account in the ulster bank in bray Co Wicklow, acc number 11281838, sort code: 985375. that's the begging bowl!

but we are 60, 61 on Monday 25th November, not cute kids in distress, but old wrinkles trying to just get out and about.  and whilst my feminist-socialist-Christian leanings abhors the culture of begging , Europe, bondholders, corrupt governments, and troika officials force more and more into a famine of need that may yet surpass the last famine of food.  Archbishop of Dublin only this week said there are hungry children in Ireland, that is famine of food, but there is famine of health too... and the health famine is ignored as high profile 'little kid dying needs treatment' campaigns lets the corrupt government off the hook. 

there are hundreds of sick, disabled and elderly needing 'treatment' they are not getting.  we are in a health famine and no-one seems to notice.

 

A quadriplegic's response to the Tim Bowers story - The Drum (Australian Broadcasting Corporation)

A quadriplegic's response to the Tim Bowers story - The Drum (Australian Broadcasting Corporation)

Why is being openly feminist in the boardroom seen as 'damaging'? | Women in Leadership | Guardian Professional

Why is being openly feminist in the boardroom seen as 'damaging'? | Women in Leadership | Guardian Professional

I am not in the boardroom but I do mix in conservative circles.  YES I am a FEMINIST.  VERY!

Wish I could afford this necklace...at £250, a little bit of a luxury!

Go for it Girls!

strong in my weak places -like him!

double buggy picture removed.

Now there is companionship.  Double mobility scooters for loved ones.  I love it.  I see the manufacturer is in CHINA!   and we think we are progressive?

What does it say?  say to me?  It tells me that all disabled people need a companion.  A 'soul mate'
and 'soul-mates' need not be a married partner.  it can be your neighbour, your friend, your family member.  but we all need someone! especially those living alone.

being disabled, being ill, especially 'becoming disabled/ill' is very difficult.  there are no 'rule books' no templates on how to survive emotionally , physically or spiritually. it is especially difficult to do it alone. I have not yet reached the stage of believing 'life' is crazily wonderful in this state of blighted body. maybe you never do...I don't yet know if it's possible. no-one has told me it is, when support is non-existent and you can't make anyone (HSE) hear!  But there's only one way to do it I guess...

...grasp every minute of life you have.  easier said than done as I sit here wondering how to get my day going. 11am, not dressed, not washed and just wanting to go back to bed...no that is not a solution. one has to 'live'. 

and here is a story designed to make you feel just a little guilty for the inertia, for the sitting around pondering.  a man who is living...a story of sheer guts, determination and strong in the weak places!

I want to be strong in my weak places....like him


http://www.dailymail.co.uk/news/article-2494162/The-doctors-told-let-Simon-die-Instead-tried-baby--ended-twins--The-inspirational-film-maker-refused-accept-death-sentence-Motor-Neurone-Disease.html

Bed bugs and chariots

I was awake at 4 am and finely decided that my night was over at 6am.  you simply don't feel like getting out of bed at 4am! these days I love seeing the skies turn from pitch black to grey to blue (if that's a good day).  I LOVE seeing daylight.  Nights are a nightmare, in pain, writhing for a comfy position, Which invariably is impossible.  daytime means people are around.  You don't feel so alone.

Now I have two beds...one ordinary, bog-standard double.  The other is a hospital bed in my spare room.  Unfortunately hospital bed came out of the ark.  Single, no bed sides (which I need to turn over and also bank pillows against).  The mattress is two inches thick...I ask you!  That's a BUG, a BIG BUG!  How can someone with severe spinal arthritis lie on a two inch rubber mattress where you feel all the motor mechanisms under your bum and back.  Occupational therapist came with a bed side three weeks ago but it didn't fit. so went away. I haven't seen her since and in the last few days she hasn't answered my phone calls.

Now for chariots,  wheelchairs.  Ann and I went to a fab wheelchair expo this week.  Fab wheelchairs...oh so fab..rolls royces rather than the reconstituted buckets the HSE have given us.  I ask you why do sick and disabled people have to suffer in a chariot more flintstone than modern?

Because we cannot afford the approx. 24k to buy two fab chariots, that's approx. 12k each, one for me one for twino.  and the HSE said they can't afford it either.  And no willing charity out there is up and running to provide any wheelchairs for us either! So the orange box on wheels is about as basic as we're going to get. 

We've started an appeal by the way, to get our own...not doing so well as so many in the age of austerity are struggling.   We also need a new van for transportation so the whole thing comes to 50k...an impossible task...


Irish Times August 20 2013   our fundraising account is 11281838  sort code 98-53-75  ulster bank, bray, co Wicklow. cheques payable to Ann Kennedy or Margaret Kennedy

All very much appreciated.

Continue...at the wheelchair expo...

Then I learned that there is a difference between 'indoor-outdoor chariot and outdoor-indoor chariot.  The former is predominantly built for outdoor terrain, but can be used indoor, the latter the other way round, made for indoor use largely. The HSE bucket I have is an INDOOR wheelchair (aka chariot) not even an indoor-outdoor. It's plain INDOOR!  Now why in the name of God would I be given an INDOOR wheelchair when I live on top of a mountain (well nearly) and need to go two miles to the nearest train station? They KNEW I needed to 'get out'. Well the logic is simple.

throw them anything!  What's in store?  Oh yes... Ok we'll give them that!  To heck with the 'assessment'.  As well as this I discovered my wheelchair has no suspension...designed to stop your body jolting over every rut in the road and here am I with severe spinal arthritis.  No wonder I landed in hospital a few weeks ago in the severest of agony.

furthermore my 'tilt facility' is not working on my bucket. that's that 'Lets lean back and rest abit as I wait 4 hours to see the doctor...or three hours on the train. Nor is there a head rest.  so even if I HAD a 'tilt facility' my head would fall off backwards! Not a pretty sight!

so bed bugs and chariots made/produced by the Irish HSE (health service) is designed to entirely make you worse off...thus requiring more medical attention, not less...and this they call 'saving money'.  AAAAHHHHHHHHHHHH you could scream in frustration!

Going in the back door

So, most people do like to enter houses, museums, banks, etc through the FRONT door.  The front door is how you get in .  In days past the tradesmen, seen as lower status either went trough a side door or the back door.  There was a ranking of whom should go through the front door and whom should not! this applied to black people too!

You simply knew your status. it was and remains discriminatory.

As a wheelchair user, particularly in public and on long trips I am utterly sick of the back door entrance for wheelchair users to all sorts of places. :Usually the 'back entrance' is down an alley,  scruffy, unkempt and smelly and nasty.  Corridors unpainted, or dirty, mops, bikes, boxes, piled against the walls.

This weekend I gave a lecture at a conference.  The organisers told me that my taxi would have to take me to the back entrance for access. I said sarcastically "Oh, when did disabled people EVER go through the FRONT door"?   Now I'm not criticising the group who organised this venue.  they had little money for a posh venue and even the front entrance was woeful. But the taxi man could not find the back entrance and when he did the road and pavements were dire.

Having cause to see a solicitor recently in a big Dublin firm the disability access point was...guess...at the back.  but I did not know this.  Until I arrived. the taxi man found it and there was an old outdoor lift. We couldn't use it so taxi man ran inside to get someone whilst I sat in the cold outside.  A man came and said "you didn't tell us you were coming" .  No, I just went to see my solicitor. I'm sick, too, of the inconvenience of planning my every move.

The lift was ghastly, old and rickety.  It 'spoke' of no care, respect or anything remotely welcoming to the disabled person. It was insulting.

The very notion of a 'back door entrance' for disabled people is disrespectful. It is inconvenient, usually adding stress upon stress, first in finding it, then in getting someone to open the door.

It is argued that some buildings are too old to enable wheelchair access through the front. I don't go with this one.  The fact is most places don't want to, as they see it, ruin the façade of the front of the building by putting a ramp or lift there. or its too expensive, so they say.  so what, equality means making your front entrance useable by everyone.  Equal means, all having the same access facilities, the front door!

In future I am going to refuse to go in the back entrance, and I'm going to make every fuss short of being arrested to voice my views. it's time we disabled people realised that we should not be 'grateful' for the scutty alley, the torrid corridors, the wait in the cold until little used back doors are unbolted, opened.

And why should I be polite....if I feel a second class citizen in these arrangements than that's how I feel. I don't like it . It's not 'equality', it's second best.

I'm not settling for back doors and feeling 'grateful' anymore.

‘Troika imposed austerity cuts may damage your health’ – Nessa Childers MEP » Latest News » Nessa Childers MEP - a strong voice for Leinster

‘Troika imposed austerity cuts may damage your health’ – Nessa Childers MEP » Latest News » Nessa Childers MEP - a strong voice for Leinster

This is what I mean by 'this blighted house'.  How are those of us needing intensive health care going to fare?

We will die and no-one will ask the questions...because our death will seem like 'normal' given our illness or disability or age related.

This is the scandal.

Death of a Sister

No...it doesn't get easier...despite the passage of years...16 now.   This day my sister went for her morning swim at Marian's swimming pool Dublin.  At 48 years old, a former International swimmer she still competed in Masters swim meets.  She loved swimming and that morning made everyone in the pool stop to look at the morning sunshine as the sun rose.

I lived in England.  I had a call from my oldest sister that Louise was unwell.  I said "I'll phone her"...I never did.  It just went clean out of my mind and well...I had no idea this was going to be her last day on earth.  'unwell' can mean anything...can't it? It's my saddest regret.

But she grew very unwell as the day passed and a neighbour called an ambulance.  in the local hospital, and believe me it WAS a 'local' hospital, not one of the bigger Dublin hospitals, they could not figure out what the hell was going on.  Her bloods were haywire, she herself was 'haywire'. Thrashing and frightened.  'Don't let me die' she appealed, to her brother-in-law she said in the lift to intensive care, together with Ann , my twin, "Brian, you'll make sure they'll look after me", "yes, Louise, of course"... within the hour...she was dead. Sadly now, so too is my dear Brother-in-law. In both cases.  Nothing could be done.

Louise died of a rare rupture of a rare adrenal tumour. a 'silent' nasty. She did not know she had. In rupturing adrenaline, nor-adrenaline and cortisone flooded her system, speeding up her heart and no way of controlling the huge amounts of these hormones which filled her veins and destroyed her heart and life.

and as she died I was having a meal with a friend, laughing, joking, enjoying myself.  I arrived home to the phone ringing...9pm.  I dashed to get it before it stopped. Louise had 'passed on', said my niece.  I could not understand this, "what, what"....'Louise had died'. In fact I knew the minute before as Ann my twin said "hang on Margaret I'll give you to Katie, someone is coming to speak to us..." then I heard an almighty scream.  Ann, collapsing in anguish.

Since that day, I've missed her, loved her and thought about her.  That sister, who was so misunderstood, so unknowable, so secret in her living. That when she died, I had no idea who she REALLY was. Who were her friends?  What did she do/ who did she love/ who did she hate/  who was Louise.

But never mind...there was one thing I knew, I knew her heart, I knew she loved her parents. I knew she was a wounded soul.  I knew she loved teaching, I knew she loved disabled children....I knew a lot.  But I never talked with her, not really...so now I mourn still, because I never really 'connected', and I miss that.  But I loved her.  I miss her and I wish she was hear still.

And today...I will remember her.  That lost soul...who could not 'connect'... but hurt and tried.

Cyber-bullying & proud to be a disabled woman.

I have never experienced 'cyber-bullies' until this past weekend.  There can only be one 'blessing' out of it!  I now know exactly what teenagers feel when they are 'cyber-bullied'.  It is horrendous.  Largely because a) it's put on an open site where hundreds can read it b) you don't know the cyber bully c) it's usually vile and scurrilous .  So what happened?

Well I thought I was just arranging a fun Christmas 'do' to gather together likeminded folk to create a small energetic group of non-disabled people with disabled people to find a creative way of having an 'inclusive community'. Having experienced great loneliness in Greystones, my new home, and finding getting around difficult due to geography of Greystones and wheelchair use, and potholes and suchlike, I invited county councillors to consider getting around in a wheelchair. We did a 'walk-a-bout' and  the mayor came to see and it was hugely successful. Then we had a meeting and a little fledgling group started. it's exciting...yes, it's exciting.

I was chuffed. But now it's gone sour in Greystones. I decided to have a Christmas Cake Competition, with prizes and then raffling of cakes and other prizes to raise funds for the group 'DAG:T' 'Disability Action Greystones:Together'. So I did well gathering prizes and excitedly posted this on a Greystones facebook forum...but then female DISABLED 'cyber-bully' launched in.

'Just because you are in a wheelchair...' 'sympathy getting prizes from businesses fraudulently..' 'you piss me off', 'I am not defined by my disability...' etc. etc...   Well, to say I was floored is putting it mildly.  I was not well with tonsillitis over weekend, still have it...with temperature.  It really, really crushed me.  I sobbed for days...but that was her intention.

But now I find she isn't the only Greystones 'bully'.  My neighbour said she overheard school mums discussing 'the twins...not as disabled as they make out' (my twin has same disease as I have), this because sometimes we use wheelchairs, sometimes we walk.  so this obviously means we are not genuine 'disabled twins'.  more upset, more sobbing...

in actual fact even my own older sibling says this with venom. she hates my 'up-front-ness'. So ignorance knows no bounds.

I have simply NOT experienced disability bullying at all.  And it's hard to be ill and using a wheelchair without this shit.

so what's it all about?

firstly I think there is confusion over why some people 'part-time' use a wheelchair, and this is not well understood.  the common perception of 'disability' is you either use one or you don't. using one = disability, not using one = not disability. and I think this perception is enhanced by using the wheelchair logo to denote 'disability' when actually that's only one disability. there are many more. including hidden illnesses like I have.

and the wheelchair symbol says you are disabled if you use a wheelchair, thus implying, you are not if you walk...and people love simplicity.  they don't have to think.

So part-time users of wheelchairs are not well understood.  The reality is, I have muscle myopathy, I cannot stand for any length of time, nor walk very far.  I am exhausted most of the time since my disease 'mitochondrial disorder' means the mitochondria which converts food and oxygen into energy for cells to function is dying. we have mitochondria in EVERY cell in the body.  it's like an energy battery and well I don't have the batteries any more. For myself & twin the mito affected are those dealing with brain and muscles.  Some people have mito affected heart and lungs. but actually mitochondrial disease affects every organ in the body...except blood.

So it's not I can't walk, I can, but not for long and some days are worse than others. so yes, you will see me getting out of the car, going into a shop sometimes and sometimes I'm in the wheelchair. sometimes being in a wheelchair is determined by one practical consideration...a taxi that can take a powered wheelchair.  in my area of Greystones there is only two  and a special company easi-cabs (could be called 'fab-cabs'), but this is a very busy company and you have to book in advance.

my disabled cyber-bully obviously doesn't like how 'up-front' I am about my disability. I shouldn't publically discuss it, shouldn't publically 'flaunt it' she might say...well, all I can say to that is, we all deal with our restrictions differently.

I see no shame in saying I am disabled which means I shake (Parkinsonism), I have dystonia and my back and foot and hand twists and twists  into spasmodic , interesting, contortions, my muscles are degenerating ...like muscular dystrophy, indeed myopathy is like muscular dystrophy, I am in pain from severe degeneration of my spine, spinal arthritis, and I am severely deaf. I take LOADS of pills!

I can wet the bed overnight, I miss the loo and flood my legs and bathroom floor, and no I don't like it, but I am NOT ashamed, nor am I willing to say I'm just like everyone else, I'm not. I'm not like my disabled cyber-bully who says nobly 'I don't let disability define me'.  I don't either, but sure as hell I am a disabled woman...and sure as hell...it's bloody difficult.

So sure as hell, I'm excited to work towards disabled people and non-disabled people coming together in Greystones, excited by the small bunch of good Greystones people meeting together, excited about the Christmas fund-raising and excited about the future and my chosen place of retirement...

yes, I am a disabled woman, living in Greystones...my twin is a disabled woman living in Greystones and only we, living with multiple illness and disability have the right to define ourselves.  and to boot...we are PROUD of still surviving, still here, still creating...

Proud to be a disabled woman. and no cyber-bullying, or negative gossip is going to shake me again.

You know why?    Because I am a DISABLED woman!

The Irish Budget robbed the elderly and the young.

The Irish Budget today had me depressed and feelings of 'hopelessness' swept over me.  Not because I'm going to be in the gutter, but the hardships increase like a horrible water torture of drip, drip, drip on your forehead.

To see the cuts on all things to do with the elderly makes me realise how the elderly are really not wanted, valued or nurtured.

35,000 over 70's will have their medical card swiped from them, that card will be given to some rich kid under 5. No doubt about it, in order to fund the under 5's medical card the elderly have been robbed.

Single parents too are hurt.

divorced or separated parents are hurt.

Disabled people and ill people will pay more for their drugs. an extra 1euro per prescription is a lot when you might be taking anything from 5-15 different drugs. so the sicker you are the more expensive it will be.

and if they switch your brand name drug to a 'generic' likelihood is it won't be the same and your health will be robbed.

So 'robbed' is my word for today.

Pensioners over 70 will have their income threshold cut for medical cards

Their telephone allowance is cut so those using alarm systems may be severely impacted.

bereavement grants are gone.

Robbed...

There was no mention at all about the mobility grant equivalent promised to be delivered by October.

So they cut the mobility grant, and the motorised transport grant and there is no replacement.

robbed.

Certainly this government has asked (robbed) the young and the old to shore up this country...without any cuts to the rich who are continually protected.

There is little I can do...and that feeds my hopelessness

With the powerlessness of the past wrought by a Catholic hierarchy intend on making us sheep, the present government's power to make us feel helpless where can we turn?

There will be nothing but misery wrought on the Irish people by intransigent overseas powers and internal maliciousness of Government.

Will any government minister be worried how bills will be paid tomorrow, or whether they should go to bed at 4pm to keep warm and save heating costs to pay for the GP visit, or drugs needed?  No, every government minister, every person in that chamber this afternoon, will go home to a warm house, a good meal, a bottle of sherry, wine or champagne on the table...and they will settle down to the internal warmth that they allegedly 'saved the country' but killed its people.

nice work there.

in praise of my lovely 68 year old home help

One of 'the blighted houses' I speak of at the moment is, of course, this body of mine.  it creaks and groans and tells me oh so clearly it's got the 'blight'. Unlike a potato, I can't be thrown on a pyre to rid the curse.  No, that would no be a good idea!

So instead I have some 'little helpers'.  that is, home help and personal assistants. and a tired blighted body sure needs them.  very much so.

My home help was told if she didn't go on this course then she'd have to fund going on it in her own time.  That would be 4,000e.  "God I said, what sort of course is that".  Oh to help you understand 'the blights', bodies, people's needs, and how to support them through the blight and into the next world". 

Well she didn't actually put it quite that way...it was a course somewhat the opposite end-of-life- course to 'child development', more like 'geriatric development'. what she said was "why do I go on that course when I'm a housekeeper, cleaner".

She developed the theme..."I'm 68, I've been a home help for 30 years I'm a cleaner/housekeeper", and frankly that's all she wanted to be, and equally frankly, that's all I want her to be. But you see she's 68 and they want to create a 'professional' and she knows its a ploy to push her into retirement.

But she sees this as a 'nonsense' as I do. I don't want my home help to be a pseudo-counsellor-cum-geriatrician. I want...no need...her to clean my floors, my toilet, and peel my potato's and bring my bin down to the footpath on Thursdays. And happily that's what SHE wants to do and happily she's brilliant at this, more brilliant then the young 'uns who want a 'profession' in home help. who seem to think 'cleaning' is somehow beneath them and resent it.  This is fostered by the 'development of the home help profession' , which slowly and surely is 'killing off' our cleaners.

Home helps are no longer  'cleaners', they are more like 'tidy-uppers' .  except for my 68 year old...oh and a very good young 'un too, both expert CLEANERS.

'Tidy-uppers' straighten the bed, that does not necessarily mean MAKE the bed, they pick up things from the floor, or bring dirty washing from bedroom or bathroom and shove in washing machine, or stack the dishes in dishwasher.

They cannot (health & safety) move the sofa to brush or hoover underneath or behind.  They cannot move a bed, clean the top edge of the skirting board... the cannot clean the glass door into my kitchen where my dog likes do a  'paint by nose' masterpiece, a great picture of whatever comes out her nose!  the 'cannot clean', is not because of the 'nose stuff' danger but the glass danger.

on no account can a Home help wipe dog wee or poo from the floor, heavens no...health and safety.  but should the need arise she's trained to wipe my bum and clean my toilet.

the crises in our home help service here is that everyone has to feel 'fulfilled' and just  cleaning a sick or disabled woman or mans house seems less 'fulfilling' than going on a fancy course and calling yourself a 'carer'.

I want to scream from my roof top (where the Hitchcock crows gather nightly) "come back home help CLEANER, I love you".

The secret ingredient in food - love

Yesterday was a good day on my first 'step' to riding my 'body' house of FAT!  

A good healthy shop with my PA resulted in a hefty bill at checkout. You wonder then how poor people can really afford to buy healthy, so be healthy!  all very well Jamie Oliver saying it can be done...and showing us good nutritious meals...but the issues of healthy eating is strewn with road blocks.

Energy is required to shop, to prepare a meal, to eat it. And buying the stuff is just the first bit! Luckily last night my PA was with me from 4.15-6.15 so she did all that, except of course the eating!

energy and the will to tackle 'food'  when 'food' is no longer 'nice' or becomes a burden is a terrible struggle. That's why elderly people 'give up'.  And the 'meals on wheels' (MOW) I tell you is far from appetising. I've been there, done that...yuck!  Wonderful caring men and women, and no doubt many elderly people eat it because otherwise they know they'll starve!  But after a while, you just feel that you could not stomach another MOW.

But is it the food, or the lack of that secret ingredient.  its not the same as sitting at a table with friends or relatives digging in to home cooking, love, laughter and companionship.

So when elderly people fade before our eyes is it the food or the lack of love? and even the not so elderly...

There's no doubt about it, 'food' is a conundrum for sick, disabled, elderly people...I suspect largely because it is eaten ALONE!

'Food' was never meant to be so...it can only be 'digested' with love, companionship, and help to prepare it.

It can only do its job when the ingredients are in 'balance'. 

Last night this was the case.  today...not so...I can barely face it.

 

Getting one 'house' in order

There are times one tries to change the world.  Well younger people do, that's what young people should do... but I am no longer young and though I am not fully 'spent', the energy is sapped and snapped and wanting. So what can I change...today!?

There is one 'house' worth working on as from this house all springs; focus, ideas, motivation and possibly enough energy to change things still.

this 'house' is my body.  this rather fatter body than years past needs tackling.  Not for vanity or image or idealised style of femininity.  That has never been a priority. But I have erred, and erred badly ...the 'body house', is THE most important of our resources. we cannot, must not, neglect our bodies.

What we eat, what we do, exercise, and all things 'healthy' are not frivolous pursuits or to be taken for granted.

If the 'body house' fails then all else fails, like a stack of cards built in our childhood as houses, they will topple and fall...flat on the ground. Never to be built up again. That is scary.  I hope I have not left it too late.

At 60 years old, nearly 61 (November) can this wrecked body be revived?  I think so.  And today I start. The journey of a thousand miles begins with a single step!

well I may not be going a thousand miles, nor even one, but a single step seems possible.

Well here I am, in a different blog, doing a different thing. sharing my thoughts and views 'in this blighted house'.  Now what does THAT mean you ask.  Is the 'house' my body, my home, my homeland, my town, my ...well what is, whose HOUSE is it?  It is all of these houses, body, land, family...all of these...

Well a 'house' is generally the bricks and mortar of one's lived in space.  but I use the word more broadly. A 'house' should keep one safe, safe from the elements, safe from the baddies, safe and secure.  Warm and held in an embrace of 'belonging'.

When I came home to Ireland in 2009 after a long sojourn away, I left in 1971, I thought I was 'coming Home'. To my Irish House. To my family 'house', and I brought my house, my body with me to the land of my birth.  I longed all those years to be here.  I always said I'd come 'home'. I would 'come home' and learn about my birthplace, learn about my people, and that also meant, learn about my family. But I also wanted to give, give my love, my skills, my breath and my soul...to this land of my birth.

But my house I find, is blighted. We all know 'blight', especially in this land.  The famine of the potato blight killed millions, starved millions. Decimated large tracts of both land and families.  For pain and suffering was on a scale like no other...and it could have been prevented, but that is a contentious story.

Have I returned to 'a blighted house'?  There are times I say," oh yes, a very blighted house".  Other times I say, "no, this is NOT a blighted house".  And each day is different. The felt 'starvation' is more or less each day. But never completely absent.  Reminders are there...every day.

I find myself wondering how the hunger can be filled, for there is always hunger. How my 'blighted house' can be repaired, or has the modern 'famine' of lack of love, of lack of community, of lack of support for vulnerable people, disabled people, older people, homeless people, unemployed people, prisoners, refugees, travellers,  can this 'blight' be eradicated.

Who can cure the 'blight' in Ireland today?  Is it I? you? Them? others?

On this first entry all I can say...today...is that I recognise the 'blight' and I wish it were not so.

But I 'came home'....was I right, wrong to do so...tell me, was I right or wrong to do so?


and irony of ironies ...as I write this blog...I burned my potatoes...and I am starving...message there eh?