I don’t really spend much time on Facebook. Maybe, it’s because I don’t fully understand how it works and what I can do with it. This morning, though, I clicked on an icon I had not clicked on before. It opened an overview of what my 281 friends had been up to over the past day or so (at least this is what I think it was showing…). – By the way, one of our daughters told me that 281 friends is a pathetic number.

Anyhow, one of my friends apparently was on a visit to London and posted the picture of a fox. He couldn’t believe that this wild animal had made it into the middle of one of the busiest cities in the world. Interesting. But – so what?

The brilliant bit came in a comment by a friend of that friend who lives in London (not sure whether the two friends had met in London for a pint, though it didn’t look like it, because if they had, he wouldn’t have had to post that comment on Facebook).

Anyhow, the comment was:

They (the foxes) are everywhere in London. The countryside is full of rabbits. This is because foxes have discovered that rabbits run faster than bins.

We always knew that foxes were really smart, but this is the ultimate confirmation.

There must be a lesson in this kind of “thinking outside the bin”. Why running after the things you know are really hard to catch, when the things you’re looking for are readily available if you just looked for them somewhere else?

I was thinking how this fox-intelligence could be applied to the situation we find ourselves in… I had a few ideas. What do you think, any ideas yourself?

It was a really quiet day today. For a change. There were no meetings, no-one calling the house, no post- and delivery men ringing at the door, no appointments. I think Pádraig enjoyed that too.

Last night, Pádraig’s famous friend, the bass voice of the RTÉ Philharmonic Choir,  who during the week had performed what must have been one of the most difficult pieces of choral music, written by Stravinsky, came over for a visit. It was a lovely night. Tonight’s Boston to Brewster fundraising and awareness cycle got postponed to next Sunday. I used the time to have a really long conversation with a mother whose child was brain damaged at birth. What this family went through in the past years is extraordinary. Their daughter beat all odds, not only survived, but developed into a girl with tons of personality into the family that not just deeply cares for her but is including her as a ‘just’ another member of the family: life as ‘normal’ as possible under the circumstances.

Solutions to problems, ways to deal with extremely difficult situations, are often closer than you think. No need to chase rabbits in the country, far away.

For some stupid reason, I stayed up last night when everybody else in the house had gone to bed and Pádraig was asleep, and started to watch City of Angels on Pádraig’s big telly. It’s a kind of remake of one of Germany’s best directors, Wim Wenders, film Der Himmel über Berlin (Wings of Desire).

When I tuned in, Seth (Nicolas Cage) was watching Maggie Rice (Meg Ryan) frantically trying to save a man’s life during surgery. Seth was invisible to Maggie because he was the angel sent to escort the man on the operating table into another world. When the man dies, Maggie cannot believe it. She had done everything right. In a strange way she feels that something or someone else was involved here, some other ‘force’ because, in her opinion, the man shouldn’t have died. I switched off in the early hours of today before the film finished, just after Seth’s love for Maggie made him jump from an ultra-high tower in order to join the humans and, above all, Maggie – loosing his ‘immortality’ and special powers in the process.

The scene in the operating theatre made me think of one of my favourite concepts, the  condition psychologist Ellen Langer first identified as the ‘illusion of control‘. It’s what our society today is made of. Everything needs to be measured and planned, nothing is supposed to be left to chance. Metrics are believed to help you achieve your goals, whether that is losing weight, increasing profit margins, or finding the right partner on a dating website (not that I would really know anything about stuff like that:). Et metiri potest, ergo est.

When Pádraig went on one of his big trips, to Mexico and Central America, he just went. I couldn’t believe it. He just went. There was no plan, no maps, no guidebooks, no scheduled itinerary. He just went. When I asked him how on earth he could do that, was he not afraid of missing one of the big ‘Sehenswürdigkeiten’ and tourist attractions, his reply was that he would meet loads of people on that trip who would make sure he wouldn’t miss a thing. In fact, he would find places so cool they wouldn’t be even listed in guide books.

He had recognised that trips, as much as life, cannot be planned. In contrast, I was suffering from the symptoms of this psychological condition knows as illusion of control. The beauty of not planning and not measuring is that we can do what we want to do at that moment in time, the likelihood being that we’ll do it really well, because we are so motivated; we’re not restricted by the straightjacket of pre-set goals but let us excite by our creativity; we’re not competing against anybody but appreciate the work of others; we’re kind to others and enjoy life to the fullest in great company.

Pádraig could have taught me about exploration, kindness, imagination, creativity, and living the life. Had I ever listened a bit closer when I was busy filing reports and checking metrics.

Maybe something, someone made me switch on the telly at midnight so that I would watch the angel jumping from that tower to be close to the one he loved, to be human.

Tonight was to be film night. Actually, first we were to listen to Ireland’s National Broadcaster transmitting live from the National Concert Hall in Dublin, Stravinsky, featuring the great bass (or baritone?) Seosamh.

We listened to Seosamh singing Stravinsky. I must confess – it’s pretty challenging and not precisely charts-type music. Great credit to Seosamh and his friends in the RTÉ Philharmonic Choir!

In the end, the film night did not happen. But I have great plans. Friday night: movie night. Friday, 19 Feb, 7pm: Fitzcarraldo (Klaus Kinsky: “My Daddy was Irish”) on the big screen. All invited. Fitzcarraldo it story of Brian Sweeney Fitzgerald, an extremely determined man who intends to build an opera house in the middle of a jungle, starring Klaus Kinski and Claudia Cardinale, runtime:2 hours, 38 minutes – like a good marathon:) Fitzcarraldo was one of the original Dreamboaters! It’s a great movie.

We had two physios from the community here today, working with Pádraig, full of energy and great ideas! And Pádraig was doing amazing things: lifting and stretching his foot, his legs, his fingers. All such great and positive developments.

Had a long conversation with a German rehab specialist today getting together a plan to change rehab for sABI in Ireland. – I get the feeling it’s all coming together, far too slow , but it’s coming together. It is.

There’s PAs coming and going. There is the postman at the door. There is a therapist and a diet specialist giving advice. There is the phone ringing. There are friends (old and new) visiting. And there is Pádraig in the midst of all this.

Today he did maths: division, multiplication, subtraction, addition. And, this is another FIRST, he recognised a word! Pat wrote a word on a sheet of paper, read out a number of words, and asked him which of the words she read out matched the one on the paper. Pádraig used the switch to ‘bleep’ at the correct word. Isn’t that amazing? How Pádraig is coming up with new things all the time?

Another FIRST happened this morning when his PAs said ‘good morning’ to him and he clearly responded using his voice.

A group of old and new friends came for a visit today to meet Pádraig. They will be organising a fundraising event as part of a Smurfit Business School project which is absolutely great.

Not bedtime yet, but I’m so tired it’s hard to believe. How busy can a day get when you’re not even ‘working’?

If you are following the Irish news, you will have heard about an appalling case of alleged abuse, involving 47 children who passed through a foster home in the Southeast of the country. Worse, children were left in that foster home after the alleged abuse became known to the authorities.

Why is this a really important case for Pádraig and for everybody with a severe Acquired Brain Injury (sABI)? — I’ll come back to that later. First a bit of background.

This morning, on RTÉ Radio One, Colm O’Gorman, the Executive Director of Amnesty International Ireland, was interviewed about the recent alleged abuse case of a young woman, Grace, who had been left with a foster family by the HSE for many years, even after alleged abuse had been reported. — Amnesty International has an interest in this case because they consider it a very serious abuse of human rights when people who do not have a voice to speak for themselves, who cannot defend themselves, who cannot serve as witnesses in a court room, who are (in the ‘big’ scheme of things) not really important — are abused, and are left in the environment where that abuse takes place , even *after* the abuse becomes knows.

Here is a bit of background to that interview.

According to the Irish Examiner, “The Health Service Executive (HSE) has for the first time admitted significant failings in cases of “savage” rape and physical abuse of disabled children in a foster home in the South-East, seven years after allegations were first raised.” The Examiner also lists a number of reports compiled covering these cases of serious abuse and of whom none (!) has been published.

According to RTÉ News, “Taoiseach Enda Kenny has told the Dáil “words don’t exist to adequately address the depth and volume of revulsion” felt over allegations of abuse in a foster home in the southeast.”

The Irish Times reports that Labour Senator Máiría Cahill said she had spent the past 18 months urging people to speak about their abuse so they could get help, but also to break the cycle of abuse. She said the most disturbing fact in the case was that Grace, who had been left as a child in the home for 12 years after a decision was made not to refer new cases there, was physically unable to speak about her abuse. “The HSE had a duty to protect her and it failed her miserably,” she said. The lessons about abuse by powerful institutions, the systemic and horrific abuse of children “appear not to have been learned. That is appalling and disgraceful.”

Colm O’Gorman was asked on RTÉ this morning several times, why, he believes, nothing had been done about the abuse and the abusers, protecting Grace and others in that foster home, when the allegations had been well documented for many years.

His answer was: it’s simple. The interest of the children and young adults in that home were not sufficiently important to the people who had a duty of care for them; not important enough to risk litigation from that foster home; not important enough to merit all the potential problems, issues, and hustle that an intervention might have caused. When it was considered whether the case should be reported to the police, the child, who was not able to verbally communicate, was deemed not to be viable witnesses in a court of justice – so the case was not brought to the police and to court. – Just stop here. Read it again. And think about it for a minute.

Back to my initial question. Why is this important for Pádraig and other survivors of sABI? – The cases are certainly different.

However, this case is important for us because many are, like the children and young adults in this foster home, in the care of someone else; they are (mainly) voiceless and unable to communicate (at least and in most cases in the eyes and ears of their carers); they cannot defend themselves; they are completely and absolutely dependent; they wouldn’t make ‘good’ witnesses in a courtroom; when there are serious complaints about their care, these complaints are often not followed up on or dismissed outright; worse, parents are afraid to speak out because they fear the consequences for their children if they do (and we have seen cases where this fear seemed to be justified); they are (often, though not always; by many health care professionals, though not all) deemed to be ‘hopeless’ cases, not warranting the ‘investment’ they require in terms of care, equipment, and therapy; in fact, money spent on them has been described as being spent ‘unwisely’ or a ‘waste’.

Now — the case of the 47 children in this foster home, and especially the case of Grace, is being described as a blatant violation of human rights not only because of the alleged abuse, but because their interests, their human dignity, their right to be ‘heard’ and to be respected as human beings were ignored, just because they just weren’t ‘important’ enough — then the case of survivors of sABI who are just being ‘maintained’ in nursing homes, requiring (in the words of a health official) just hydration, sedation, and nourishment, is also a clear violation of human rights.

Not just in my view, but in the view of the UN Convention of the Rights of Persons with Disabilities (CRPD) which, although Ireland has not ratified it as one of just three EU countries, has been ratified by the EU and should be therefore binding for Ireland. The ratifying States agreed to:

promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Would you agree?

I had completely forgotten how important it is to tell Pádraig the date and the day. Every day. Worse, I had completely forgotten what date and what day it was. Time is just a continuum and days don’t seem to have an identity.

Yet, this is exactly what is needed. Otherwise, days blend into a haze of nothingness.

You need to feel and see the seasons. Plan and prepare for important days. Expect certain days with excitement. Mark days.

There is still a great deal of work to be done before Pádraig and his PAs will feel completely confident and at ease with each other. It’s all very intense and time consuming and trying.

My plan to work or rest in the afternoon is only partially working. At least at the moment. There are so many things that need to be done, bills to be paid, emails to be answered, phone calls to be made. There are still boxes full of stuff we brought back from Hamburg, heaps of stuff we didn’t ‘manage’ over the past 2 years that need to be organised that it feel intimidating. Should I just through the stuff out?

A friend in the USA contacted a friend who lives on Cape Cod and is a convinced cyclist. When he hear about our plan to cycle from Boston to the Cape, his first reaction was that this was gong to be quite dangerous without proper escorts and support. – At least we’ll have some time to get everything into place for June.

Today is Tuesday, 02 February!

Inniu (an chéad lá de mhí na Feabhra) Lá Fhéile Bríde. The first day of February, the first day of spring. The first day of a new beginning. The first St Bridget’s day that Pádraig is home home in three years.

Tonight, I met one of the most inspirational people I’ve met in a long time. He is a someone who knows more and has reflected more than anyone else I’ve met about what it is like living with a disability. There is such a clarity in what he is saying. And everything is, like all great things, blatantly obvious the moment he describes them – but only then. About the new life following a severe injury, about your old friend from before the injury, about a truly person-focussed approach, about working with PAs – most of all: about living a life. – He promised to stay with us. To meet Pádraig. To share some of his insights with him and with us.

The Boston cycle is taking shape. We had our first planning meeting yesterday and will have another one at 5pm in our house this coming Sunday. Please let me know if you want to help with the preparations and, possibly, join the Boston to Cape Cod cycle or even a parallel ever in Dublin, please let me know!

First Sunday with a PA coming to help us and Pádraig. Very different from other Sundays which were just laid back and easy going. When people come to your house it makes you do things you otherwise wouldn’t be doing — which is probably ok, especially during the week, but weekends are different. We’ll see how things go. Loads of things going through my head, time passing, getting older, focusing on priorities, things that are important. Things many people do on their birthdays (mine is still a few weeks away:).

Two of Pádraig’s friends were here tonight and we started to plan some major action for the awareness and fundraising cycles coming up later in the year. Some great ideas and enthusiasm. This will be big: 27 June, 10am, Brewster, MA — connecting with a cycle in Dublin!

This is what I saw today in a shop:

Isn’t that incredible? Even considering that headline writers tend to exaggerate things slightly to get people to buy their papers…

And then I bought the Sunday Business Post, to read the article they have only as a ‘teaser’ on their public website:

If you remember – I mentioned a week or so ago that Ireland was spending the same amount per capita on health as Sweden (in 2014) and no much less than Germany.

The figures produces by the Irish Central Statistics Office refer to health spending in relation to its gross national income and show that Ireland will spend more on health (proportionally) than any other EU country or any other rich country with the exception of the USA.

Put this in a context where the HSE is requiring parents of sABI survivors to fundraise for items and services the HSE should be providing but don’t — because of a lack of funding. Effectively meaning that we should start fundraising for the HSE.

Something somewhere is fundamentally wrong. Wouldn’t you agree? — Do you want to be part of the solution?

It’s almost midnight and I’m listening to Tears in Heaven by Mr Slowhand Eric Clapton. Should be asleep and resting. Or dancing in Saturday night fever. To say that life is upside down and slightly disorienting is no news. Though every so often I think it’s going beyond my threshold. Just before it does, there is a twist that avoids the fall.

Tomorrow some friends of Pádraig and myself will meet up to see if we can come up with a few ideas about he first of the two US Fund- and Awareness Raising cycles, the one on the Cape. There are a few friends around Boston and the Cape who have already expressed an interest to help out, raising the profile of the cycle. And there are a few people who said they might come along. – Last time Pat and I were on the Cape, the Chief of Police and the Town Administrator both said they were enthusiastic cyclists, maybe they will join the cycle too? I would like to put a marker on the spot of the accident to highlight how dangerous this stretch of the road is for cyclists.

This is the first weekend we have carers in the house. They give the days structure, and I’m not sure how much structure I want during the weekend. Pádraig is getting back to ‘normal’, eating really well and even drinking. I think I mentioned our milkman is back delivering milk and cream to our house, as he has been doing since the kids were born. I think Pat once mentioned that his father delivered the milk with a horse and cart. Anyways – today I made myself a big mug of banana milk. For some ‘stupid’ reason I thought, let’s see if Pádraig likes this. Less than five minutes later he had finished the whole huge mug of my (!) banana milk. I thought that if he keeps going like this he soon won’t need the PEG anymore.

In Ireland: Legal Alien
You know the 1987 song about the Englishman in New York (by Sting) with the line “I’m an alien, I’m a legal alien in New York”. Well, I’m a legal Alien in Ireland. And, unlike Sting, I have an Alien ID Card to proof it. It was issued by the Irish authorities when I first arrived in Ireland in the eighties and decided to go ligit. Luckily, I did not hand in my passport with my application, unlike a German friend of mine who never saw it again. – Nobody thought that any of this was in any way strange:)

The end of a long week, with Pádraig’s PA’s starting (there’s about half a dozen of them), more meetings, a visit to St. Vincent’s Hospital to get his PEG changed (thankfully just a day visit), and visits by various therapists today: a dietitian, and three physios. And not only that, Pádraig got appointments for the next two weeks, once a week. It’s pretty low frequency, but it was a really good surprise to hear that he will have a weekly visit by the community physios. The other good news was that his standing bed has been approved (by the third HSE fund approached:), and a MOTOMed will arrive here on 11 February, without an arm trainer initially, but we’ll be working on this:) Turns out that Dublin North (!) is a bit more advanced on the dietitian front than Dublin South (!), no longer using the ‘old’ thickener for drinks and food which changed the colour of the drink (especially water) and also changed consistency in a relatively short period of time (especially with hot/warm drinks).

Overall a fairly intense, very very busy, but moving in the right direction, with some pleasant surprises.

In case you were wondering – while Pádraig got a Euro Million lotto ticket from one of his relatives, he is, very unfortunately, *not* the Irish winner of this week’s jackpot. If you know the winner out there, ask him/her to get in touch!!!