Coming Home To Ireland

For 42 years I lived away from Ireland. I left in 1972 as many young Irish girls did...to go nursing in Great Ormond Street Children's Hospital. I had wanted to be a children's nurse - THERE - only there, since I was age 12. It was my deepest hearts dream.

I got there, but it was bittersweet as my deafness and family 'baggage' caught up with me. I had a very tough time from age 18 to about 30. Repairing Irish damage. But repair I did, success followed. not as a nurse, but as a social worker, trying to protect disabled children from abuse. Alongside supporting adults sexually abused and exploited as children or as adults, by Christian clergy. And proudly my life's work, which was short, 20 years, was hugely valuable to many suffering people.

 

Then as if blighted, illness befell me and quickly....no more work...a devastating blow as age 50+ high achiever, just getting going, just completed a doctorate. Slow to start, early to be stopped. The frustration knew no bounds.

Ann Kennedy (left) & Margaret Kennedy; twins with mitochondrial disease

 

I made a decision to 'come home' to Ireland.  Years of getting on the night 'mail boat' from Dun Laoghaire, and later flights from the airport,  taught me the hardship of emigration. The pain of waving to your twin and your father, the only two who really missed me. The only two who ever said "goodbye", or "welcome home". I saw their heartbreak.  Both wanted me home.  Dad was forever asking; "when are you coming home?"  Was now the time?  Dad was gone, dead...Ann, my twin, wanted me home.  I saw that I had no work to do in the UK and thought I'd come home to know Ireland, to stay in the land of my birth.  To be HOME when ill and suffering.  I had always missed Ireland. green is our blood.

There's no doubt about it...the Irish love Ireland...or they love the idea that is Ireland. that leprechaun mystery place.  the worldwide sentimentality of Ireland appeals.  The capitals of the world turn green every St Patrick's day. every capital goes green for ...US.  Why?  sentimentality. a wish for the fairies, the craic, the Irish.  We seem to 'have' something.  something we GIVE to other countries.  Yes, we do GIVE.  I gave to Britain. I thought I might come home and GIVE something to Ireland.

But Ireland rejected me.  Why?  because I was sick, disabled, needy.  I had been ill in the UK, Parkinson's disease was diagnosed. I got brilliant care. I was well supported by the NHS. The public service.  I was a patient of a top neurology department in London. Then I came home...because my heart was here.  After all my 'goodbyes' I wanted to be HERE. I didn't know that Ireland's public health care was non-existent. I didn't know.

But my heart was breaking in my ill health. I needed to 'come home'. I thought my comfort would be here.

I wanted to know Ireland. Be part of Ireland. get to know my nephews and nieces, their children.  I had a dream of family. I had a dream of fun and laughter with a new generation. I feared being alone in London and I thought I would not be alone here. After-all this was my country, they were my family. It would be good. Wouldn't it?

It was not to be. The HSE is not the NHS that's for sure.  the mentality of care is not 'holy' Ireland, far from it.  I learned in the last 6 years that the HSE is far from 'saints and scholars'.  I've never met such cruel people as I have in the HSE.  I'm still trying to absorb whether the cruelty is malicious or ignorance...I cannot figure it out. at all. Or is it political. The politics of Nazi euthanasia by stealth so begun in Germany in the 1920's and 30's with the belief we sick and disabled people are "useless eaters". or could it be (trying to put my caring slant on this) that HSE staff are overwhelmed by the lack of money to do what their hearts desire - to care, but cannot, they blame us for their frustration. its called scapegoating.  We, who seem to 'ask for too much' which they cannot provide, hurt them. They hurt us in return. How dare these sick and disabled "useless eaters" ask for anything, let alone more! How dare they make us feel impotent. How dare this government put us in this position. At the end of the day its not politicians that are blamed, its us, the sick and disabled person. Everyone seems unhappy.

No-one but sick and disabled people themselves see this pernicious undercurrent in the worldwide health care systems, increasingly so, as the world embraces economic priorities over public care.

But, naively, I thought IRELAND would be different.  Little did I know Ireland would be maliciously worse. Is this from our 'Holy' upbringing. That perverted Christianity that was NOT of Jesus. Where scapegoating of all oppressed groups was rife. Where poor boys were sent to industrial schools, poor girls were sent to Magdalene laundries, where pregnant girls were mercilessly treated as scum whilst the boys who made them pregnant scuttled away on the boat, or stayed protected. It was the girls fault. always is. and where the clergy routinely sexually abused and brutalised the boys and the girls...and got away with it. Is THIS what we learned?  Is THIS where the Irish brutality was born? now seen in the inheritance of collective cruelty towards the homeless, sick, disabled and poor.

So how 'worse' is it.  It's bad.  I came home to a non-existent health care system. Now diagnosed with a very rare disease, both twin and I are largely wheelchair users. We have Mitochondrial Disease. Which involves the degeneration of our energy 'organelles' which in turn destroys our muscles, brain, heart, lungs, bowels...you name it...mito kills. We have Parkinsonism, Muscle Myopathy, metabolic disorder, Dystonia, Auto-immune disease, we are ill, disabled. Being a 'rare' in Ireland means being alone. Despite the 'Rare Diseases plan' document, there is NO RARE DISEASE PLAN!

Mito patients in Ireland have no services , no consultant who knows what they are enduring. No care that is holistic, co-ordinated, unified or safe.

We are afraid. Because no-one knows what Mito is. Let alone knows how to treat us.

This is beyond scary, this is a nightmare. And because there is no understanding the HSE treat us as if we are 'making it up'. They don't believe it. But is this a way to avoid the care we need? By deliberately 'not understanding' they can deliberately deny.

I still await a powered wheelchair that meets my need. I still await special shoes. I still await physiotherapy, I still await ....almost everything...that could make life worth living. But the HSE are well skilled in denying. They just know how to do it. They know how to deny, but at the same time say they are providing. Their skill at doing this knows no bounds. They just have the skill to say they are proving when they are not. boy, can they write a good - devious - letter!  It is the Irish way.

I do not understand the Irish HSE. I've never seen this deviousness before. In all my years of nursing, social work and lecturing in the UK I've never experienced this deviousness. NEVER.

Its positively toxic. An undercurrent of evil that no-one wants to speak about. Whilst we turn a blind eye, sick and disabled public patients take the pain of it. We are being targeted as scapegoats for a sick and evil health system. Do we see the parades of protest? No. Nothing. Nothing at all.

As for 'family' , what of the young generation? I hardly see them. I know I don't 'register' on their 'caring' mind. I know that. I am an older, not that important Auntie, great Auntie. The fact I cannot go to see them because I'm ill, disabled...makes no impact. They still don't come to see me. Christmas presents lie in my spare room, for a nephew, his wife and children...still ...Where are the younger generation that could uphold my spirits?  well, they are not.....here. Its very sad.

The Ireland I thought I was coming home to is just....not here.