Sometimes pictures don’t capture a thousand words. On this occasion, the pictures I took, in fact, did not capture very much of the absolutely incredible atmosphere at all of this evening of Carol Singing and Readings in the Chapel of St Patrick’s College just 15 minutes walk away from our house.

There were four choirs (I hope I didn’t miss any) filling the Chapel with the most beautiful and magic songs, one choir after the other, divided by readings about Christmas. I must say that I was in tears (Oh not again!, I hear you say), but not because I was sad or anything like it. I was in tears because I felt as if all those weights I’m carrying around with me had been lifted. I felt completely relaxed. Physically and mentally. You can’t use a ‘bleeper’ in a Church so I didn’t have a chance to ask Pádraig as it all happened, but I know that he was wide awake and moved and relaxed as I was. After the service, we joined the choirs in the staff room where we got home made biscuits and, of course, minced pies with cream, together with a nice hot cup of tea.

Now, the concert as well as the refreshments afterwards were completely free of charge, nobody was looking for money, not even a ‘voluntary’ donation. This was the essence of what used to be the Christmas spirit.

It was Pádraig’s first ‘late’ evening out and as we were walking back through the dark streets we all felt that we just had spent a night together we’ll remember for a long time to come.

(…)

The time out this evening was the best antidote to what had been an upsetting and not terribly helpful meeting earlier.

Just back from an An Saol Board meeting where we discussed our current work and looked forward to 2017. There is a clear need to “aufmischen”, re-arrange, what is going on in Ireland in relation to persons with severe acquired brain injury. The way they are being treated, the way their needs are being assessed, the way they are being supported, the way equipment is priced.

Maybe this is the next big scandal to come to the surface? Though it shouldn’t be about the scandal, it should all be about how to make things better.

So rather than bringing scandals to the surface, maybe we will be able to kick-start the €1.5m An Saol project, open a gym for disabled people (it’ll better have a pool:), and make equipment to people available under fair and ethical conditions.

One thing I heard about Fidel Castro is that he ordered that no square, no street should be named after him, no foundation or university, no statues or plaques. Fidel was a bit like Nikolaus only that his beard was dark, not white. Whatever you think about the two of them, they both had convictions and they acted according to their convictions.

Pádraig was swimming again today. He is getting so much better, so much more relaxed, it’s a pleasure to see him in the water. And I think he is enjoying it immensely to ‘loose’ his body weight for half an hour, to just float around in the warm water. Kicking his legs a bit, splashing with his hands, let the hair and the head hang down and get wet in the pool.

It’s one of the most exciting things Pádraig has been doing recently. He was able to do it because friends arranged it for him.

Not any of the State’s services. You wonder why not????

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.