It’s good to have a sister who remembers. ‘Namenstag’, your Saint’s Day, is not a great deal in Ireland (neither are birthdays, as you know, once you pass your 21st:) so  I was happy to get that phone call from home with best wishes. In the past, mmhhh… the very distant past I must say, it was a brilliant day. As this is the day before St Nikolaus – he who fills your boots with sweets if you leave them outside your door on the night to the 6th – there were two consecutive days with loads of sweets and presents; those were the days when sweets were still special). And all just a few weeks before Christmas. It was always such a magic time.

There were concerts, Christmas biscuit baking, special masses with candles and Advent songs, it was cold, dark, and snowy outside and everybody slowed done from what, in hindsight, was a pretty ‘slow’ life anyways.

Advent is all about the ‘arrival’ (is that why they brought out the movie recently?), the arrival of the saviour, the arrival of the light that follows darkness, the arrival of a new beginning, of hope, of a new dawn. It’s about what keeps me going. The reason for never giving up. The time of the dreamboaters who know that anything is possible. The knowledge that once I get through difficult days, there’ll be another day offering me a new beginning. It’s a very ancient belief going back to pre-Christian times, a belief in the ups and downs, a belief that things don’t end but always emerge on the other side again, renewed.

Got a note today that two pieces of equipment we ordered for Pádraig are on their way – both will make a big difference for his upper body and general cardiovascular system, in addition to everything else from his lungs to his heart and inner organs. No idea where all of this is going to go but it’s almost time for another extension… 🙂

Pádraig had a busy day today with two therapists helping him with his communications and physical fitness and control.

No word from the Department of Health or the HSE yet – but it shouldn’t take much longer until the Minister of Health will sign off the HSE’s service plan for the next year which is when we will find out what happened to our An Saol Project proposal!

Maybe it’s because today is the 2nd Sunday of Advent, maybe it’s because I’ve listened to too much Udo Lindenberg earlier, maybe there is some other explanation or maybe there ain’t any. I’m feeling melancholy, like wanting to have time out, not away, not on my own, just less noise for a moment, acknowledge what’s going on. Feels like as if we’d have to put some kind of quiet room on the Dreamboat. For days like these.

On weekends, I spend more time with Pádraig than during the week. There are (almost) no carers here, there is no time table. I enjoy the sense of drifting through the day with him. If I could I’d open the doors and the windows, put big bundles of incense in all the corners of the house and the garden, put on really relaxing music, switch on the fountains in the garden, and explore with Pádraig our senses.

As I said, today I didn’t get much further than listening to Udo live at the Hotel Kempinski (aka Atlantic) with Pádraig – and assuming that his taste in music hasn’t changed dramatically in recent times, he must have prayed very hard for that CD to finish soon, while I was singing along with the songs that accompanied me growing up, songs I couldn’t and can’t share with anyone since I started my second life abroad, songs that make me feel as if I’ll never grow up, never want to grow up.

Sadly, I haven’t got much of a choice here. Reason to feel melancholy, at times. Until tomorrow. Until ‘real life’ and purpose call again.

Our living room still smells of the incense we burnt there yesterday. Looks like the friendship and love and easy going spirit will stay with at least for some time:)

We were watching a film about the making of the new J.K. Rowling movie Fantastic Beasts and where to find them on TV today introduced by Warwick Davis, of Starwars, Hitchhiker’s Guide to the Universe, and, of course, Harry Potter fame (he played Prof Filius Flitwick).

Throughout the documentary, he several times asked the question: What is it that made the Harry Potter series so appealing? He asked J. K. Rowling, fans, and actors.

Most of the people he asked gave one of two answers: Harry Potter makes you feel that anything, anything is possible; and: no matter how different you are you should and can be yourself.

Two basic messages that make living your life that bit easier. The third one, I would have added, is: there is nothing like having really good friends – before you going into and when you’re coming out of The Wild.

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.