Haven’t been ‘running’ for a while regularly but tried to pick it up again about a week or two ago. Just short, slow, easy runs maybe twice a week for starters. Back to four runs per week from Monday. If you start listening to what researchers say about physical activity and its benefits I think I’d be mad not to keep physically fit.

It’s like reverse smoking: while you’d be mad not to quit smoking knowing about the damage it does, you’d be equally mad not to take up physical exercise knowing about the benefits it brings.

So here I am, waiting for the endorphins to kick in, after my (short!) run, out of breath and sweating like a pig.

The ‘runners high’ has officially been confirmed by the Germans (who else I ask you?), by a Dr Boecker in the University of Bonn, to be precise. According to an article in the New York Times (some time ago), the limbic and prefrontal areas are not just activated when running but also when people are involved in romantic love affairs or, Dr Boeker said, “when you hear music that gives you a chill of euphoria, like Rachmaninoff’s Piano Concerto No. 3.” The greater the euphoria the runners reported, the more endorphins in their brain.

Unfortunately, neither today’s running nor listening to Rachmaninoff’s piano concerto no. 3 have had an effect anywhere similar to that of a romantic love affair.

I’ll keep running.

I like Saturday mornings with Pádraig. We are on our own, we have time, do what needs to be done at a very slow pace, listen to nice music, relax. I’m not a good talker or story teller, and I wish it was different because I think Pádraig would like to listen to good stories, find out what is going on, what I’m doing or thinking. But I like to think that there is communication without words, some kind or connection, unity that does not require talk.

Finally, here is a really funny 7 minute clip about Trump’s Inauguration, seen on YouTube by way more than 1 million people in just a day. Trump’s Inauguration: This Is Really Happening

There is this theory I have: look at things that work, are helpful, and create energy (and leave aside irritating, unhelpful, and paralysing stuff) and spend time with people who push positive change, are ambitious in a good way, are caring, and have high standards (avoiding people who tell you all about what is not possible, try to persuade you to accept the status quo, and have a ‘that-will-do’ attitude) then, bit by bit, life will get better because the good ‘stuff’ and the good ‘people’ will ‘outgrow’ the bad stuff and the bad people.

I think it’s a good approach to life and it helps you stay out of trouble. Focus on the good rather than taking on the bad.

Jesus would probably not have ended up on the cross had he staid out of trouble and had he not taken on the establishment.

On the other hand, would we have heard about his message of love had he not campaigned for what is right and taken on what is wrong, got into trouble?

Are there two approaches? One that keeps you out of trouble and another that lets you end up on the cross?

Do we have to choose between one and the other? Are they mutually exclusive?

Pádraig is doing well, getting a little bit better all the time, loads of exercises, good food, a bit of fresh air, happy carers. I wonder whether this is how life will continue.

“Bitte” is the ‘magic word’ in German.

And we need some magic. While North Korea has ratified the UN Convention of the Rights of People with Disabilities, Ireland has not – remaining the only EU country not to have done so.

“Bitte” is one of these words you cannot translate into English out of context. It’s actually a great German word to learn because it means so many different things that you can use it in almost any context.

It can mean “please” (when you’re asking someone for something), “you’re welcome” (as a response to “thank you”), “here you go” (when you’re handing over an item to another person), “may I help you?” (for example if you are talking to a customer), “pardon?” (when you didn’t hear or didn’t understand something), “you are not serious!”  (when someone does something he shouldn’t be doing), …

But as with every other word, there comes a time when it’s of no use because it doesn’t get you anywhere, when its purpose can’t be achieved.

That’s the time you roll up your sleeves, spit into your hands, neither look left nor right but focus on the task on hand.

This is where I am. At the beginning. Of every day.

Rosenstolz, Du bist am Leben – not one of their most famous songs, but I really like the lyrics and the rhythm that makes me think of spinning around until I get dizzy…

Some decades (!) ago, Pat gave me a present of a CD (remember those tremendously expensive round shiny discs?) of the Brendan Voyage by Shaun Davey with Liam O’Flynn playing the most magical and enchanting pipes, re-counting the voyage of this most enterprising Irish monk who discovered America long before Columbus was even born.

We’re going to walk in the footsteps of St Brendan on our Camino to Santiago! Can you believe it???

Earlier this evening I had a conversation with a gentleman, a new friend, who is helping us to get our walk on the Camino to Santiago organised.

Not sure whether I mentioned this before, but just some weeks ago, the Cathedral of Santiago announced that it will award the “Compostela” to pilgrims who walk the 75 km of the Camino Inglés from A Coruña to Santiago AND the ‘missing’ 25km in their country of origin prior to arriving in Spain, as reported in some Spanish Newspapers.

While we would probably have had problems walking the last 100km with Pádraig in a week on the French Camino, I’d say 75km are doable. In addition, walking 25+ km here in Ireland before we do the longer leg in Spain will give us great practice and opportunity to ‘fix’ what needs to get fixed in relation to equipment. (And we might get a few Irish friend to join us!!!)

Here is where Kerry comes in and the idea our new friend had: It shouldn’t come as a surprise that the good people of Kerry already have a well signposted and supported ‘Kerry Camino‘ in place – where one can “walk in the footsteps of St. Brendan (the Irishman who ‘discovered’ America long before Columbus:) along the Dingle Way through 6,000 years of Irish History along the Wild Atlantic Way”, from Saint John’s Church in Tralee to the Church of Saint James in Dingle – from where many Irish pilgrims departed for A Coruña and on to Santiago de Compostela.

It’s all almost too good to be true (though we will most likely just walk the last 25 km of this way). And there’s a few (!) things that we will have to sort out – like new wheels for Pádraig’s wheelchair, some clothing, dates, routes, accommodation, ….  But nothing we couldn’t fix and then – we’ll be off on the Camino! Who would have thought….?

The new year is in full swing. Schools are back. Swimming Pools are open again. And Pádraig went for another session in the pool with his favourite swimming teachers. It was almost like the old days.

We interrupted Taoiseach Enda Kenny on the 9 o’clock RTÉ News tonight saying nothing for far too long about Brexit and watched last nights programme “We need to talk about Dad” on the RTÉ Player. A few people had asked us today whether we had watched it. I hadn’t. Basically, it’s about Brendan Courtney’s family trying to figure out what to do with their father who had suffered a stroke and had become dependent.

There is so much I’d like to say about this programme. About the ability of their father to speak, to eat, to drink, and to move at least part of his body. About the idea of possibly feeling guilty in the future if they didn’t care sufficiently for their father in the presence. About the ‘busy life’ Brendan and his siblings were leading, apparently preventing them to look after their father. About the mother and wife who said she couldn’t physically lift, move, and wash her husband. About the at times sloppy research and editing of the programme stating at some point that (towards the end) that he couldn’t understand that the State would make 2,300 euro or thereabouts available under the Fair Deal to pay for a nursing home, yet wouldn’t make the same amount available for home care. (Note that earlier in the programme the weekly cost of two nursing homes were quoted as 1,100 and 1,300 or thereabouts. Also note that home care packages delivering, for example, 56 hours per week at 22 euro per hour cost roughly the same as a nursing home – do not require the paper work of the Fair Deal and are paid for by the State.)

Earlier today, I helped a neighbour – he’s in his mid eighties, I think – to collect his wife of roughly the same age from a nursing home to bring her back home – after around three years of her having lived in unacceptable surroundings. He managed to get a home care package for her with carers coming in 4 times a day. Compared to our neighbour’s wife, Brendan’s father is really well. Yet our neighbour would not have it any other way but having his wife back home.

If ever there was a hero. Tonight, our neighbour is my hero. Talk about love. It’s right on our doorstep.

I hadn’t been with Pádraig and his carers at their second half of lunch time service for some time until today. So I don’t know whether this is something that happens every day or whether today was special. They had so much fun doing exercises with him in the wheelchair, trying to get him to move his toes, his feet and his legs. It was really really good. Even to watch. And they all had smiles on their faces!

What a difference that made!

Maurice Marechal, who founded the French satirical weekly ‘Le Canard Enchainé’ in 1916, once said that “my first reaction, when I see something scandalous, is indignation. My second reaction is to laugh. It’s more difficult but more effective”, according to an article in yesterday’s Irish Times by Lara Marlowe – and an article by Eleanor Beardsley WGBH News of 29 December 2016!

I’ve said that to many people: Take what doctors and other health care professionals have told us and other families out of context. Get the stage in the laughter lounge. A room full of slightly (or even heavily) intoxicated people. A white, bright spot light onto the stage. And tell those stories. We’d make a fortune. Up to now, I just thought the whole issue is too serious to laugh about it.

I’m beginning to think: maybe that’s the best way to deal with it!

Imagine.

There’s a man trying to get therapy for his partner and he’s pulled out of a van by the police with his arms twisted behind his back who are removing his partner and him from the only rehabilitation hospital in the country.

There’s a family with an sABI survivor – struggling with the demands of daily life – supporting the setting up of an organisation to organise therapies and a life for survivors of sABI and their families and a doctor says that is a waste of money.

A mother collecting money for her son, a survivor of sABI, and a doctor telling her to save that money and to go and have a good time on the Canaries instead.

An acute hospital ward where you have a nurse telling the husband of a patient, “Look, I’m in a bad mood today. You ask my brother what it is like when I’m in a bad mood. Better stay clear of me”.

There is a brain injured person on an acute ward, with nurses present, who is getting out of bed, tries to stand, moves back and forth like a tree in heavy wind, and eventually goes to the ground – when, far too late, all hell breaks loose.

There is a doctor telling families that secondary injuries and illnesses such as dropped feet are not important – they can be fixed at a later stage, when they could easily be avoided and, in any case, can’t always be fixed and often require an operation.

There is a young man being brought back to Ireland with a sABI to die, never sees a neurologist, looses all his teeth (“he’ll never eat again anyways”), and then, after 20 years starts to get better, starts to talk, starts to eat.

There is a lady fighting for her son’s rights and is being told that they’ll wear her down and that she’ll come back begging for help.

And the list of laughter lounge material goes on and on and on…. and these are only some of the details I’m aware of. And I am not working in health care.

Anyone who would like to contribute more stories?

Honestly. If you didn’t laugh about this, what would you do? Get desperate? Start a revolution? Get onto the Dreamboat? Ignore it? Work the ‘system’? Write to your members of parliament?

I think we should publicly talk about all of these stories and attitudes. Not in a bitter way. Not in a hurt way. Not from the perspective of a victim. But in an engaging, interesting, matter-of-fact, and – if that helps – a ‘funny’ way to engage people.

Not –
Picture yourself in a boat on a river
With tangerine trees and marmalade skies
Somebody calls you, you answer quite slowly
A girl with kaleidoscope eyes

But –
Picture yourself in a bed in a nursing home
With white boring walls and windows blocked up
Nobody calls you, they don’t come to help you
Your left with nowhere to go

You might just be left with: Lucy in the Sky with Diamonds.

Pádraig never stop to amaze me. He knows exactly what is going on around him. He understands what people are saying. He hears us saying things. He follows the news. He watches TV. But we have not managed yet to get him sufficiently involved. Telling us what he thinks about stuff regularly, as a matter of course. Something to work on…

I visited a neighbour today who is in a nursing home and promised myself to stay at home no matter my age or condition. The good news is: she will return home next week because her husband decided she’d be a million times better off if he looked after his wife himself. Then I visited the home of another survivor of a severe Acquired Brain Injury today and his family and am in awe of their love, positivity and determination.

There are many people around us doing heroic works of love every day – often unknown to us. They are my heroes and my saints.

If you live in Ireland you might remember this bit of news reported by the national broadcaster RTÉ and other news outlets on 10 November of last year:

Harris ‘furious’ over HSE bed memo

Minister for Health Simon Harris has said he is “furious” over a HSE memo that said nurses could remove patients from beds “as trespassers” using minimum force in order to free up acute beds for patients who need them.

The Health Service Executive’s National Director of Acute Hospitals, Liam Woods, has apologised for any concern caused by the memo for hospital managers, which was seen by RTÉ News.

The memo was written by the HSE’s legal advisors and issued to Mr Woods on 11 October.

Yesterday, I checked out the Facebook page Amanda Denton’s partner Tommy maintains, called: “The help Amanda Denton get rehabilitation page“. The first post on this page is ‘pinned’, dated 21 July 2016, and reads as follows – apparently reporting an incident the HSE said would never happen:

At the end there is a link to a youtube video documenting the incident.

There was also an article in The Irish Times by Kitty Holland last August reporting on Amanda’s ‘treatment’.

i’ve been told on several occasions by several people to be careful about what I am writing in my blog. In fact, I had to agree not to write about certain things. The reason? – Mostly legal, I suppose. Ireland is a country were people and organisations like to sue each other for libel. And then: you wouldn’t want to upset anybody or fall out with anyone – after all, everybody is trying their best.

I met Tommy and Amanda when Pádraig was in the NRH. I know that there are different perspectives on everything. But tonight, I thought: there comes a time when you become so desperate that ending up in court for libel really becomes the least of your worries.

If you have a look at Tommy’s blog you’ll see that there are hundreds of people around the world sharing this view.

On a completely different note: it’s Pádraig’s big sister’s birthday today and we celebrated this very special day with her, with Pádraig and the rest of the family around a big warm fire, defying the bitterly cold January evening that it is in Dublin tonight. We are not just celebrating her birthday, but also the wonderful and very talented person she has become.