Pádraig had one of the nicest pre-Christmas afternoons today. Three friends came over for a visit. We had the fire lit and talked about life, movies, books, travels, music and all sorts of other things. There was even the occasional silent moment. And plenty of laughter. Eating chocolate and biscuits, trying out the different types of incense one of his friends had brought from Nepal. It was relaxed, caring, interesting, warm, loving company. Nothing that needed to be done, nothing to worry about, no pressure, no complaints – about anything.

The absolute alternative. To the ‘systems’ we are dealing with every day. To the ‘news’ we are listening to. The ‘scandals’ we are reading about. The ‘disasters’ and ‘dangers’ that are apparently threatening our lives.

Tonight, I’m asking myself what really matters, what really affects Pádraig, us, all of us, more: living life in the company of our friends; or living life pushing ourselves to achieve more, better, faster – while worrying about all that stuff over which we have no influence whatsoever. As I’m writing this I’m thinking – this really is just a rhetorical question, one for which I already know the answer. Wouldn’t you agree? – But…, why is it so easy to forget that answer, that alternative, so often when we’re making choices?

12 people meeting in a room discussing a patient just one (maybe two) of them had seen in three months since their last meeting, never mind had treated. Would you have a name for such a meeting?

Today I went to a demonstration in front of the Dail highlighting the fact that Ireland is now the only country that had not signed the UN Convention on the Rights of People with Disabilities. There were about half a dozen of people in wheelchairs, and a dozen people standing, with loads of cameras and reporters taking pictures. About twenty people in total. Would you have a name for such a demonstration?

A member of parliament, Róisín Shortall, TD, asked the Minister of Health about the fate of the An Saol Project proposal handed in to him and the HSE, and received a very general, standard answer. Would you have a name for such an answer?

Would you have a name for a society in which such things are ‘normal’?

I had almost forgotten about one of the most amazing things that Pádraig did recently, just some weeks ago. When I had lifted something I shouldn’t have lifted, and in a way I shouldn’t have lifted it, I had hurt my back. It took me a few days to get over it and another few to get back to normal. – One of the things I learned over the past years is that persons with an acquired brain injury (probably everybody) should be transferred by hand, not in a hoist, if at all possible. So I learned how to do this with Pádraig and now that he can help, it’s pretty easy and straight forward. But, during those few days that I had problems with my back I did not do the transfers. – When all was back in order, we asked Pádraig if it was ok for him if I did the transfer again.

And guess what? He said ‘no’. At first we thought that he didn’t like me doing it and preferred the hoist. But then we asked him whether he preferred the hoist because he was worried about my back, and he said ‘yes’.

That was not the only time he showed incredible empathy – more than has been shown to him at times by the health system. When Pat had a procedure done on one of her legs last week and we asked him did he want to go for a walk with us over the weekend, he said ‘no’. Again, first we thought he just preferred not to go out. But then we proposed to him that I would push his chair, not Pat, and he was delighted to go out and catch a breath of fresh air.

/He/ was worried about /us/.

And today, in one of our 3-monthly or so meetings with the HSE, involving a dozen people of which only one had seen and worked with Pádraig over the past months, they proposed to assess whether Pádraig is in a position to take decisions.

Seriously, guys…

What a busy day this was! Builders, therapist, meeting a family member of someone with an acquired brain injury looking for help (and offering help for An Saol), a long phone call with a potential partner for An Saol, and then, for the second time, a trip down to the swimming pool with Pádraig! On the way he received a great shoutout from a good friend on Raidio na Life who then followed up with an interview of another good friend who had just returned from a long stay in Nepal!

The highlight of the day was, without a doubt, the swim with Pádraig! And this time, the phone was ready to take some pictures of the man himself floating and kicking his legs.

So there you are! Isn’t that absolutely utterly incredible? Dreamboater afloat!

It’s a lonely place for Ireland to be in. Also quite an embarrassing place to be in. While we are, according to our Taoiseach (or Prime Minister) a great little country to do business in – we don’t even want the taxes, with interest, corporations based here have been told by the EU to pay to our Revenue – but, we are not so great when it comes to disability rights.

This coming Thursday, there will be a demonstration at Leinster House, in front of the Dail, the Irish Parliament, from 13:00 to 13:40, to highlight the fact that Ireland has not yet ratified the UN Convention on the Rights of Persons with Disabilities – making it the only country in the EU not to have done so. And despite the Government having promised to do so before the end of the year. The Government are with Johnny Logan, one of Ireland’s greatest sons, singing, as he did at the Eurovision in The Hague in 1980: What’s another year!

Leinster House, Dublin, 13:00-13:40

Though the lyrics make it more a song we would sing, stoically (and a bit sadly) – never listened to the lyrics as I did today.

I’ve been waiting such a long time, reaching out for you – but you’re not near. What’s another year? – What’s another year for someone who’s lost everything that he owns? What’s another year for someone who’s getting used to being alone? I’ve been praying such a long time, it’s the only way to hide the fear. What’s another year?

So, what’s another year? – It’s another year of a broken promise, a commitment not met. Because other things were more important. Listening to the radio these days makes me angry. There is one storm after the other in this big tea cup. They’re all pretty inconsequential, in my mind  – while actions that really do make a difference are rare and, when they happen, often not reported by our headline seeking media because they don’t “sell”. And then we wonder why people are dis-engaging, watch reality TV shows, and forget how to think and analyse independently, voting for crazy things and crazier people.

There was a brilliant moment today, too. One of Pádraig’s carers had brought him chocolate from their holidays and as he put a piece into his mouth that was about to fall he made sure with his index finger to catch it and put it were it should go. Pure enjoyment. And a first – proofs that you can do anything, as long as there is an important purpose.

On some days, I just write because it’s so obvious what I need to write about that I don’t even have to think. On those days, something has happened that I just need to get rid off by typing it into this laptop that shares it with whoever wants to read it as soon as I hit the publish button. I don’t even think about who might be interested in reading this stuff because for me, it’s like an act of liberation.

Today is different.

There is the first of Advent. Being a German at heart, I went into Lidl and bought my four candles.

For the first time, each candle was of a different length – well, it’s because the one we lit today will burn over four weeks, the one we’ll light next Sunday over just 3 weeks and so on… What first looked like a mistake, makes perfect German sense! I also baked a cake, one my mother always did. All in an attempt to create a bit of this German Advent atmosphere in the middle of Drumcondra. While I was doing all this, two friends of Pádraig’s called in for a visit, and so did a neighbour bringing in an apple tart made with her neighbour’s apples. Pádraig enjoyed the banter, was really interested in some quirky news  – apparently Tom Cruise, an accomplished member of the Church of Scientology, can now fly but won’t do it -, and loved the whole atmosphere of anticipation of things to come. And things will come!

Then there is the really very funny story of someone getting my name (slightly) wrong and putting together an even funnier picture.

A German ‘Braveheart’ dressed up as a Scot fighting in Ireland… Could it get any better? On a more serious side: the HSE are finalising their service plan for 2017 these days. I just hope for their own sake that they included the An Saol Project. Because if they didn’t Braveheart’s fight for Scotland’s freedom was a piece of (Apple-) cake compared to the storm that will come over them.

Today, the discussion about whether Fidel Castro was or was not one of the giants of international politics, someone who took away Cuba from the US Mafia and gambling bosses and gave it back to its people – or a ruthless dictator killing hundreds of his fellow citizens.

What is true, no matter in which way you look at it: there are no homeless people and there are not people on hospital trolleys waiting to be treated in Cuba. And I don’t think they would just abandon survivors of severe Acquired Brain Injuries, rather than helping all they could to all survivors to have a life, travel on the Dreamboat.

No carers since yesterday at lunch time until Monday morning. ‘My better half’ had a small procedure, was in hospital yesterday and is resting today. So I spent the days with Pádraig. It’s a privilege. No interruptions. Nothing to be explained to anybody. Time is ours, it’s on our side. A visit called in, one of Pádraig’s friends I’d first met in Cape Cod Hospital.

It’s been a demanding day or two and I’m tired, but in a good way.

Tomorrow will be the first Sunday of Advent – we’ll be looking forward to the end of ‘darkness’, to the day that night will turn into day. Just four short weeks away. Wonderful.

It was one of those days, one of those moments I’ll never forget. One of those incidents I won’t want to talk about. One of those that really struck right into my heart. Yet it passed as the most normal thing in the world, no attention given, by anyone, it just came and went. And made, and makes, me cry, hurt so much, beyond comprehension.

A friend of Pádraig’s had left the new CD by IMLÉ, which they had launched recently. It’s really absolute brilliant music. I played the CD for one of Pádraig’s carers this morning. When “Pádraig” came up, the song Marcus had written for Pádraig, I got my laptop, went to YouTube and showed the video and song to the carer.

At the beginning of the video is this picture of Pádraig. When the carer saw the picture he asked: “Who is that”?

Would you believe it? It’s exactly one month to Christmas today, and just a few days to the first Sunday of Advent. And by accident, not by design, Christmas arrived early today for Pádraig when our HSE community therapist and the company the HSE had contracted delivered his new Comfort Chair!

Watching Pádraig enjoying his new chair, I was thinking that it might be used even if he isn’t in it. It really is so cosy, a bit bulky, a bit wheelchair-like looking, but you can’t have everything, all the time:) It’s just brilliant. Looking at the ‘bigger’ picture, I thought that Pádraig’s room is getting a bit small for all the equipment he is using… It would make so much sense to have facilities where he could get together with others using similar equipment, sharing it with them, getting a bit of banter going, enjoying each other’s company.

Just another reason to get the An Saol project on the road!

So you think you know what a ‘deadline’ is? So did I. But I double-checked today when I saw this van.

Historically, it is “a line drawn around a prison beyond which prisoners were liable to be shot”. Hhhmmmm. Today, most of us would understand it as “a date or time before which something must be done” though. But what on earth is a “Deadline Courier”? Historically. Today. To me this is some marketeer’s mind gone bananas.

Deadlines are not inspiring. They have a feel of “time running out”, or “the end is near”. They also have a connotation of finality. It’s similar to something expiring. Once a deadline has passed, there’s no going back. Systems like deadlines because they put people under pressure to deliver. Or at least they create the illusion.

In my mind, deadlines are like plans. They always make me think of the old jewish joke about God laughing when he sees man making plans. And anyway, if something is important, it’s worth waiting for or working towards it – always with as much dedication as possible, but not pressurised, not threatened.

Yet systems put deadlines even on sick people. Like three months in the National Rehabilitation Hospital and you’re out. You’re expired and categorised as a no-hoper if you’re not recovering after one of those enforced, completely farcical deadlines.

Pádraig and I went to St Patrick’s College (now part of the ‘University of Enterprise’, aka Dublin City University) and joined one of their weekly lunch time concerts. It was such a pleasure to listen to these young really talented musicians, all 45 of them, playing trad and contemporary music for just about 45 minutes. It was a real treat. The walk through the park crossing the little river and passing young kids playing in the play ground. Getting into the College. Sitting amongst young, bright, beautiful, enthusiastic students. Seeing and hearing them perform their own versions of great pieces of music. Sitting down beside the river on the way back. Talking with Pádraig, Wondering what the sea gulls were doing in the middle of the city, miles away from the coast. No pressure, nothing to do, no deadline.

PS: A former student sent me a link to a very funny video. It’s a skit on Apple (or on the people buying Apple products?). It’s in Spanish with English subtitles. The curious thing is that the subtitles have nothing got to do with the original words, just with the ‘action’. I thought it was getting better as I was watching it, it took me some time to get into the whole thing. At the end I was just laughing… and there is nothing better you could do than having a good auld laugh. Right?