Changing the language of distress in healthcare.

I was TRAINED    I was TRAINED  to understand, recognise, support people who displayed a range of emotions.  I was TRAINED to care about those who were displaying

Despair
Anger
Pain
Hurt
Aggression
Depression
Sadness
Bereavement
Fear
Loss
Bitterness
Regret
Guilt
Loneliness
Hopelessness
Suicidal ideation
Behaviour consistent with autism, Aspergers, learning disability and many  neurological disorders.

Yes, I was TRAINED, in nursery nursing, nursing, counselling, social work, even in catechesis, how to 'be with' someone needing me in any one of my many professional roles.

But aside from this...my humanity, that core inside of me, became infused with a sense of CARE FOR OTHERS by my own loss, experience of hurt, pain, abuse and isolation.  I knew the depths and so I did not WANT others to feel those depths. I knew the horror of that place, those places. Rather than back off,  or not get involved, or blame, or shame I plunged in...often where others feared to tread.

The result....I think I saved lives. But also I grew in humanity , care and love for others.

I'm not saying all this in a self-congratulatory way. I'm saying this as a person who fails to Understand  how anyone can hurt another, especially professionals.

Daily in the last ten years I've struggled to UNDERSTAND the annihilation of me and my twin by a supposed 'highly skilled professional' service -the HSE .

How one word....in the list above has come to be the total perception of myself and twin by HSE professionals.   The HSE is pernicious in it's use of this word.
It drops it into every exchange, every correspondence, every new person who comes on the scene.

That word is 'aggressive/aggression'.

Raise your voice on the telephone in sheer exasperation , stress or hurt and you are 'being aggressive'.
Raise your voice in a meeting and you are 'being aggressive'.

It's accusatory, it blames, it stops discussion, it stops relationship, it stops care. HSE professionals use it  prolifically to justify inaction. To justify stigmatising clients, to justify no service.

 As a nurse and social worker I NEVER saw 'aggression'. I just never did! If there was anger, shouting, raised voices ( and I seriously can't remember much! ) I knew instinctively to ask...WHY? What's going on here? What's BEHIND this?

I knew it would be pain and suffering.
I knew it would be from their lived experience of loss, poverty, illness, abuse, disability.
I asked myself - had I caused it. ( I was more likely to blame myself than my clients/ patients) .

The HSE see neither pain or suffering. They posit themselves as blameless highly skilled professionals with troublesome , awful clients who are not grateful and demand too much! They behave in complete martyrdom . 'Poor me' to have to deal with this 'awful client'.

The HSE never asks the right questions , and refuse to see the genesis of the alleged 'aggression' because they'd have to face the fact...they were causing such distress. So rather than see 'distress', suffering , pain, ( which would make them feel pain and guilt) they reject. They blame.

The HSE

are not blameless
Not professional
Not trained
Nor caring.
H
Because they do not understand suffering, illness, disability, loss. Because their expectation of needing to be valued, needing clients gratitude...allows no room for SEEING those clients are suffering from THEIR ACTIONS.

 they cannot allow themselves to admit the 'caring' shortcomings.
 They therefore blame the client and call them aggressive.

This is the language of  'austerity Ireland' , this is the language of a dysfunctional institution that claims to care and support.

This is the language of disability 'eugenics'.
'Awful clients' must be annihilated.

I am NOT an 'awful' client. Nor is my twin. We are adults hell bent on creating a 'life worth living'.
We are not going to be subjected to poor, abusive alleged 'care' by the HSE .
We WILL fight injustice of the way the Irish state annihilates ill and disabled people.

The HSE as 'agents of the state' are doing the states bidding. If we don't fight....we are ALL lost.

Every single disabled, ill, elderly person must fight . It is not 'aggression', it is survival.

I refuse, REFUSE, to be annihilated.

If I need to 'raise my voice' , I will.

I will do it loudly, persistently, daily if necessary.

No-one will dis-respect me or my twin. Or other disabled, sick or elderly person.

Crippledom

Ah yes, I'm getting used to 'crippledom'!  It's mighty interesting on one level whilst infuriating on another.

Tootling along in the wheelchair you often get 'the look' as Ann and I call it. The 'look' is meant to convey compassion, pity, and care but somehow comes out all wrong and only looks like cringeworthy patronising shite!  The 'look'  can be hilarious as Ann and I have graded them from 1-10 according to minor to major horror looks. We'll turn to each other and say..." Did you see 'the look' there?"

" yeh"

"4"

"I'd say 6 "

So it goes in hilarity. Or sometimes we see 'the look' together, turn to each other and at the same time say " the look" and roar with laughter.

Then it's the freebies.  The coins left behind in the coffee machine " here you have them" , subtext
" you poor cripple you" .  Or the newspaper, " no need to pay"....or the free bag pack in the supermarket because the person just will not accept your donation. "Ah no, don't bother".

Then the apologies..." Oh I'm so sorry" as they turn around and discover you are behind them. "What for? You could say but that might embarrass them. " oh sorry" is said about 10 times as you go around a busy supermarket. You feel like saying, " look mate, I" m behind you, I don't mind being behind you, don't jump as if I've got more right to a free corridor in the supermarket. I don't. I'll have to wait" .

Then the charity. " I'll pay" ( no you friggin won't)  er..." No it's alright I'll pay" , " no, please I'd be happy to pay" ( and I'd be friggin unhappy to let you) .." Ok,thank you" . Anything to get out of the situation quickly. Or the " you go ahead" in a Q I'm in . Why? I can Q just  like you.


Then the help. Well you know I don't mind the helpers. I welcome help. I like the door being held open, I like the biscuits on the top shelf being given to me, I like you running to the station person to get the ramp. Yes. I like help.  Of course it's best pre-fixed with " can I help?"

Then how about the people who judge your degree of illness/disability and pronounce your true disability/non-disability as if they really do know better than the tests results, the consultants or yourself. Self appointed judges ...yep they gotta be right. Sigh....wearyesque , why bother explaining, these people are so sure as sure is, you won't ever educate them.

Last but not least ...then the jokers.  The shouting from the top deck of an open top bus to two cripples going side by side down the foothpath...." Who is winning the race? ". " keep the speed limits" , " love the hat" ....gee, do I know you? No, I don't ....intrusion in my space is seen as ok. Ah SHURE we're having a laugh....yeh, SHURE !  A laugh. Have a laugh.


Have a laugh

Crippledom is interesting...

The 'gift' of a GOOD physiotherapist

Some of us are fated to have need of a GOOD physiotherapist.

Riddled with osteoarthritis and contorted by Dystonia (a neurological disease causing muscle spasm with twisting of limbs and lower back) my need is ultra-great. Pain is a constant companion. With arthritic crumbling neck, lower spine, hips and knees I know my need for physiotherapy.

The body is a wonderful thing ... for example, if in pain, muscles try to protect and they do so by going into spasm (this is not the spasm of Dystonia, which is quite different, though similar) and if muscles could speak they would say; " I'll go into spasm here and hold this joint tight so Margaret won't feel the pain of bone grinding on bone (arthritis)" . So my lovely muscles trying to prevent more joint damage of 'bone on bone' creates MORE pain by going into spasm. if I were to chat to my muscles I'd say "hey mate , you are NOT helping me here".

So it was I crawled to my GP in the most dire, excruciating RED hip pain ever.

x-rays ordered and a week later results. "Yep, your hip is now 'bone on bone, with bony spurs'. Jeeze, I thought, hip replacement, that's gonna take months if not years to get done. How can I endure this pain much longer? The GP up's my morphine dose and refers me to Orthopaedic Consultant.

Yesterday I went to the physiotherapist. Not the HSE ones that give you a sheet of paper with diagrams of how to do exercises on it. But a HSE physiotherapy manager who actually DOES physio. I mean he knows spasm. He knows muscles. he knows hands on.

To advise you all....very rarely these days do HSE physiotherapists do hands on, manipulative physiotherapy. Why? because it takes a good half hour to hour of intense physical work they have either no time for, don't want to do or cannot do because they are allocating only 10 minutes per patient to save money.  There are not enough physiotherapists. Personally I sometimes think it sheer laziness.

The HSE explanation for pictures versus 'hands on' is a nice exercise in preventing cognitive dissonance. That feeling that you are a complete fraud. So to prevent your guilt you accept as truth... "There is no evidence that hands on physiotherapy is any more effective than exercise".

Bullshit.

The 'hands on' is absolutely mandatory if you have dystonic spasm or muscle spasm from skeletal 'safeguarding'. Spasm hurts. Spasms are knots of knotty, hard, scrunched up muscles. No amount of 'exercise' gets scrunched up spasm-ed muscles 'un-scrunched'. In fact all that happens is the spasms become fixed and even more scrunched up muscles results.

How do I know? because I friggin KNOW!

I had marched into my physiotherapist and announced; "you are NOT touching my hip" in bolshie 64 year old figgin agony mode. But this gentle Muslim man, married with two children and a goatee beard, living in Ireland, has golden hands. "lie down on your tummy". He smiled benignly.

Ah Achmed, you put me through your 'hands on' wringer last night. I screamed at you; "too hard", I then tried a different tack and plaintively squeaked "I don't think I like this very much",
to which he laughed and....continued....and continued.

Arriving home I realised...no pain. No pain at all.  I mean ...NO FRIGGIN PAIN....nada, nothing, nothing. (well I tell a lie, a little bit but not the searing, burning, stabbing, awful pain I had for the last three weeks).

you know what. I think it was not my hip, but a slipped disc in lower spine. I know I have several bulging discs there. I think...he must have realigned my lower spine a bit.

whatever he did...I love him.

"You should be grateful" - Society's annihilation of irish older crips

In America the disability community are fighting a 14 year old disabled girls wish to kill herself. They argue her medical care and lack of support is forcing her to make this decision.

They argue governments love euthanasia laws as it allows them to coerce disabled people to get off the health and welfare books! Meanwhile the 'normal' typicals ( non-disabled people) rally around the 14 year old declaring her beautiful, courageous, wonderful...for making this decision. They throw her a mega party as their farewell to her. even though same teenager expressed she was isolated, lonely, had no friends, because she was disabled, Before her declared wish to die. They all come out of the woodwork to admire her death-wish. One more useless life to feed, they celebrate!

Here in Ireland, I feel suicidal, my twin feels suicidal, not due to our illness, or disability but due to loneliness, abandonment by the family, the community and government services, or lack of them....which force us into extremes of distress, difficulties, and penury. We do not live a life...we merely exist, in deepest depression caused by HSE lack of care and support. HSE abuse.

No-one really cares . We are 63 years old...not WORTH Saving, rallying around, fighting for. We are deemed complainers for even ASKING for more support. Our right to object to annihilation by state is seen as ungrateful. We should be grateful crips. Gratitude should ooze out of our pores.,gratitude for home help hours, a new wheelchair and a few PA HOURS. it doesn't matter it's not enough given our disease Or disabilIty. Doesn't matter we had to squeeze meagre help out of the HSE ( irish health service) , that it took 5 years of abject suffering in the old second hand power wheelchairs given by the HSE. Doesn't matter the HSE did everything in it's power to NOT Give us the wheelchairs we needed. Doesnt matter the abuse and denigration heaped upon us by an abusive primary care management of the HSE.

tokenistic service IS what we should be grateful for. We should have been grateful for any damned wheelchair, even if it crippled us, caused severe pain, and nearly killed us. It doesn't matter that we are still in medical and care crises., it doesn't matter. We are age. 63 , not worth it! How dare you even ask, journalists ignore The ungrateful complaining sick disabled person. Only the acceptable crip is honoured.

And when we express the human rights dimension we are called whingers. No-one comes out to fight disabled, sick or elderly HUMAN RIGHTS. TD's profess support but do nothing. Local CC's don't answer emails. Journalists ignore. Consultants DON'T prioritise. Even more, neglect. 

But we don't only fight the HSE for ourselves, we fight for ALL sick, older, disabled person in Ireland. Discarded by the state as 'useless eaters'! ( Hilter's justification for killing disabled people).

The sickening irish scene of apathy and dis- interest in the suffering, older, disabled, sick person is staggering. If we did commit suicide the state, family, community would NOT BE BLAMED. sure even the killer who killed his wife and children were not blamed!

So the state, 'killers' of sick, old, disabled people would be let off scot free. Our suicide would be entirely our fault!  I can visualise the HSE sighing with relief. " thank god the Kennedy twins are gone" 

"You should be grateful" - Society's annihilation of irish older crips

In America the disability community are fighting a 14 year old disabled girls wish to kill herself. They argue her medical care and lack of support is forcing her to make this decision.

They argue governments love euthanasia laws as it allows them to coerce disabled people to get off the health and welfare books! Meanwhile the 'normal' typicals ( non-disabled people) rally around the 14 year old declaring her beautiful, courageous, wonderful...for making this decision. They throw her a mega party as their farewell to her. even though same teenager expressed she was isolated, lonely, had no friends, because she was disabled, Before her declared wish to die. They all come out of the woodwork to admire her death-wish. One more useless life to feed, they celebrate!

Here in Ireland, I feel suicidal, my twin feels suicidal, not due to our illness, or disability but due to loneliness, abandonment by the family, the community and government services, or lack of them....which force us into extremes of distress, difficulties, and penury. We do not live a life...we merely exist, in deepest depression caused by HSE lack of care and support. HSE abuse.

No-one really cares . We are 63 years old...not WORTH Saving, rallying around, fighting for. We are deemed complainers for even ASKING for more support. Our right to object to annihilation by state is seen as ungrateful. We should be grateful crips. Gratitude should ooze out of our pores.,gratitude for home help hours, a new wheelchair and a few PA HOURS. it doesn't matter it's not enough given our disease Or disabilIty. Doesn't matter we had to squeeze meagre help out of the HSE ( irish health service) , that it took 5 years of abject suffering in the old second hand power wheelchairs given by the HSE. Doesn't matter the HSE did everything in it's power to NOT Give us the wheelchairs we needed. Doesnt matter the abuse and denigration heaped upon us by an abusive primary care management of the HSE.

tokenistic service IS what we should be grateful for. We should have been grateful for any damned wheelchair, even if it crippled us, caused severe pain, and nearly killed us. It doesn't matter that we are still in medical and care crises., it doesn't matter. We are age. 63 , not worth it! How dare you even ask, journalists ignore The ungrateful complaining sick disabled person. Only the acceptable crip is honoured.

And when we express the human rights dimension we are called whingers. No-one comes out to fight disabled, sick or elderly HUMAN RIGHTS. TD's profess support but do nothing. Local CC's don't answer emails. Journalists ignore. Consultants DON'T prioritise. Even more, neglect. 

But we don't only fight the HSE for ourselves, we fight for ALL sick, older, disabled person in Ireland. Discarded by the state as 'useless eaters'! ( Hilter's justification for killing disabled people).

The sickening irish scene of apathy and dis- interest in the suffering, older, disabled, sick person is staggering. If we did commit suicide the state, family, community would NOT BE BLAMED. sure even the killer who killed his wife and children were not blamed!

So the state, 'killers' of sick, old, disabled people would be let off scot free. Our suicide would be entirely our fault!  I can visualise the HSE sighing with relief. " thank god the Kennedy twins are gone" 

Coming Home to Ireland

The Irish Times do a column on Irish people who return to live in Ireland. I've never attempted to get my 'returning home' experience published. Why? I just know they wouldn't publish. Why? because it would criticise a much protected institution.  Or rather, I'll rephrase that, they like clear cases of wrongdoing, preferably proven by recognised groups who make the inquiries, investigate or otherwise have clout of law.

They would be afraid of little 'ol me, criticising the institution called The HSE.  They'd worry about such things as defamation. Though the HSE is not averse to defaming me.

Its seen as 'not the done thing' to complain much in Ireland. A culture I find amazing in its 'backwardness'. I think the Irish Catholic Culture of accepting what happens, not going against 'authority' together with sheep-like Irish tendencies mitigate against Justice. But very Irish...very 'Catholic'.

There is of course something in the Irish psyche towards 'incestuous non-sexual behaviour'.  I mean by that; "you scratch my back, I'll scratch yours". "I'll cover up for you, if you cover up for me". Brown envelopes. Cover-up...lies. and if the institution needs to protect itself, then no patient is safe.
Any means to defend oneself is justifiable in the HSE institution.  any means at all...even lies, or the lesser, 'economy of the truth', equally pernicious.

That's my experience of 'returning home'.

As a sick, disabled older woman...Ireland is a death trap. Particularly if you have a rare disease, no family, few friends, are single and you hate injustice.

For fragility alongside rage is a disaster to health care. The rage of injustice can overwhelm the fragile self. So what is left is a sense of futility leading to depression. When the HSE reframes the patients rage as "aggression" rather than 'righteous' , the patient is abandoned. But fragility does not cope with abandonment well. And the fragile soul who cannot, cannot compromise on Justice is in an impossible position.

So when the fragile soul realises they are health abandoned, health neglected, health abused, where does she go? There is no-where. When the sick, disabled person is neither treated, cared for or supported, there is nothing....a void of terrible pain that feeds the rage that the HSE exploit. So manipulative HSE use the patients rage to justify no care and as rage increases so does abandonment....and then no-one cares.

and the 'Charities' who are deemed the saviours of distressed souls, compromise on support because 'in hock' to the HSE they fear the HSE wrath also. and the Government who give the Charities their grants fail to act for that would implicate THEM in propping up the abusive HSE institution. So you see, its all incestuously entwined....the poor ol sick , disabled person is bottom of a ladder they cannot ever climb.

There is NO health Justice. No health service for the poor, the public,  None. and those who complain... campaign, refuse to play the game are dumped in the HSE rubbish bin ...there to rot.

and everyone breathes a sigh of relief...they've 'dealt' with her.

That's my experience of 'returning HOME'.

To an incestuous country, To a country that has abandoned the sick, the old, disabled person. (and poor, homeless, and others)...where CARE left the psyche of the health institution years ago.

I didn't know this before I came home. I thought Ireland was that lovely island of generosity and fun. It is, to an extent, but there are conditions... don't ask for help.  You MUST be self sufficient, well, young and productive. All else...don't apply.

You are no longer an Irish citizen.

Mitochondrial disease

There is nothing in Ireland for those who have mito. We are trying to change this!


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