Tonight, we went to the DCU library where the Norwegian Ambassador to Ireland opened the exhibition “On thin Ice”. It’s about the effects of climate change on the polar ice.

It’s a classic: all of ua knowing what is right and what is wrong, but nobody really acting on it. And we all go down.

Earlier on today, we went to St Pat’s College for their Wednesday lunch time concert. It’s a really treat to be able to do this.

Tiered as tired can be. Trying to have an early night…

This coming Saturday, the An Saol Café will be back for a Christmas get together and an update on the An Saol Project. It’ll happen in the usual place, Odin’s Wood, the HSE Day Centre in Finglas. If you have time to join us, please come along, bring some seasonal (or any other:) biscuits or cakes or sweets and we’ll supply the coffee/tea and a bit of festive spirit.

Tuesday is swimming day. It’s supposed to be really relaxing, but the drivers of the adjoining school’s wheelchair busses manage to wind me up every Tuesday by telling me that we cannot park in the wheelchair and bus parking lots. They just don’t see that it’s as important for Pádraig to get into the pool as it is for the CRC kids to get out of the school and back home. I struggle to stay calm and relaxed and just continue doing what we’re doing. There are occasions where people will not agree for whatever reason. The good thing is that all this hassle disappears when we are in the water and Pádraig is doing his magic. The lesson: take it easy and breathe in, breathe out. And smile.

We were worried. Pádraig is sliding down and slouching in his chair to a point where he almost slides out of his chair altogether. He stretches out his legs and lifts up his pelvis and off he goes.

Today, I discovered that there is, most likely and most of the time, nothing to worry about. He has just discovered that he can use his new found abilities to move to his advantage when he would, otherwise, just sit in his chair for hours, stationary.

How do I know?

Because today he showed me that he cannot just slide down in his chair. He can also slide up.

Isn’t that amazing? There is nothing to worry about. Pádraig is just discovering all the new stuff he can do and applies them to where he sees fit. Doesn’t always make sense to me, at least not at first sight, doesn’t always make life easier for me, e.g. when we’re out somewhere and he decides to ‘move’ himself in the chair, with my heart rapidly moving up my throat for fear that he might slide out of his chair, but this is him discovering and applying his abilities. For good reason. After all, who on earth could ‘stand’ sitting in a chair for long periods without any movement. It would drive me and you bananas and neither me nor you would probably able to ‘sit it out’. And nor does Pádraig.

Only that now, he has the option to move. And slide.

There are birds singing long before the break of dawn. And there are cygnets on the Royal Canal. And in Poland, a strange coalition of three countries stopped the acceptance on a key scientific report on climate change. We went out for a walk this evening along the Canal and couldn’t believe how mild it was. It’s confusing, not just for us, but for mother nature and all of her children.

I started to read a book and then switched over to its audio version, having listened to a talk by its author, Bessel van der Kolk. There is also a relatively short interview with Bessel on youtube, in which he summerises his work.

Traumatised people tend to get very isolated, locked up in their own misery and then find the company of other people who have suffered just as they do and then they get an identity of “we are sufferers” and then their lives get stuck. 

The most important thing is that we discovered that trauma changes the brain. You see the world differently and you live in a different body. A great challenge of trauma treatment is how to help people to feel fully alive and to detoxify themselves from the impact of the trauma. Trauma is lived out in heartbreaking, gut-wrenching experiences.When you’re traumatised you feel these awful sensations of dread, helplessness, disgust and horror in your body. – Our research has shown that yoga is more successful than any drug when dealing with trauma.

It’s the first time that I thought about Pádraig’s accident and its impact on him and on myself in the context of a trauma. I kind of know and to an extend understand the impact it had on myself. Although my knowledge and understanding is most likely not great. But I have no idea and can only imagine the impact it must have had on Pádraig. The trauma of his accident has left him literally speechless and most likely full of dread, helplessness, disgust and horror, as Bessel says.

Who is helping him to deal with this? Who is helping him to get a handle on it, to understand it better, and to overcome it – if that was ever possible?

Never, over the past five year, have I ever heart anybody mentioning the existence of trauma in relation to him or myself (or his family and friends). Never mind the necessity of treatment, the necessity to find a strategy to deal with the trauma.

One of his closest friends, the one who arrived at the hospital first, the one they asked first for organ donations, spends a lot of his time in Nepal practising yoga.

We never realise how much force it requires to walk until we accidentally hit a pole or a wall.

(I discovered reddit and its r/Showerthoughts community discussing wisdoms like this.)

I have experienced this literally. And I have felt it in my stomach. When it turned.

There is so much in my life that I have taken for granted. I didn’t think about twice because it was part of my every day life, nothing special. I have hit a few poles and got knocked down in my time.

It would be nice if I could say that I got up and moved on.

Pádraig’s 2018 Christmas CD is coming together nicely. Please keep the suggestions coming!

Also, please keep next Saturday, 15 December, free if you are interested in joining us for a Christmas get together in Odin’s wood. Details to follow!

“Shooting the unicorns” is a strategy, apparently well known in game theory. It was invented by the Spanish Conquistador Hernán Cortés, who attacked Mexico with a small army in 1519. Cortés ordered his men to burn their ships to make sure that they would not retreat when they were going to face a counterattack by a much larger Aztec army. He wanted to leave his men with no alternative but victory.

Ellen Barry, the New York Times’ new London-based chief international correspondent recently wrote about this advising Theresa May to say, “Dear Brexiteers, your ships are burning, they are gone’” in order to make them not just understand bu to feel and realise that there was no alternative to the deal her Government had negotiated with the EU.

Never thought about it that way before. But Pádraig has been living a life that was thrust upon him with, literally, an unstoppable force, and at that very moment, the driver of that van shot his unicorn, and his ships were destroyed and burnt to the ground. Except for the Dreamboat. Except for his will and knowledge that he could do what no one expected him to do. There is no way back. But. There is a long, wide, open, bright shiny river right ahead of him. And that’s where he’s heading.

Here is song no. 5 for Pádraig’s 2018 Christmas CD: Safe and Sound by Capital Cities.

You could be my luck
Even if the sky is falling down
I know that we’ll be safe and sound
We’re safe and sound

What an inspiring great song! Please keep them coming!

The Carol Service this afternoon was magic. So was the visit to Trinity College. And the Chapel.

Whatever they did, they managed to create an atmosphere that was out of this world. More precisely: out of our world. The organ, the choir, the songs and the readings, not called ‘readings’ but “lessons”. One of the three ministers (I’d call them ‘priests’) was methodist and he invited everybody to be methodist for the evening, join the choir and sing with them as loud and as best as possible. In case you’re not in or from Ireland: singing is not something ordinarily done in a Catholic church here.

Anyhow: it was a great start to the magic of Christmas and a big, big ‘thank you’ to the staff in TCD’s alumni office who could not have been more helpful. It was a difficult visit for me and I can just imaging how this must have felt for Pádraig. But I think it’s good to face the past head on, not to put it aside or to ignore it. But to make it part of the present, and part of new and magic memories.

“Very different sound“, says Fiadh. And he is, of course, right. This band, Niteworks, from the Isle of Skye, is truly exceptional. And their song, Air Fàir an Là, is only brilliant. No. 4 on the 2018 Christmas CD for Pádraig. It was also great to be reminded of this year’s Féile na Gealaí festival in Rath Chairn that Pádraig went to for an afternoon. Looking forward to going back in 2019! And maybe for longer than just a few hours!

Please keep the songs coming!!!

Here is something quite groundbreaking. Another First. You’ll remember that we discovered recently that Pádraig has no problem reading by showing him the first half of a sentence and giving him four options to finish it, with just one option being right (and me wondering why it was us coming up with the idea, instead of a ‘professional’…).

Over the last couple of days, we took it a step further and got Pádraig to check his email.

Ok, he is a bit behind and hasn’t really caught up with his mails. Like five years behind. But, he has a good excuse, right?

So he started to get in touch with his old ‘alma mater’ and their alumni association to see whether they could get him a ticket to their Christmas carols tomorrow. Of course, they could and they were extremely kind and helpful about it too. Makes sense to start using email again.

Typing is very slow and requires a lot of help. There are no miracles. So there won’t be any independent long email-writing for some time to come, I’d say, but so what? Let’s keep this short and to the point for a while until he’ll get used to it again.

Today we went to the second last student lunch time concert in St Patrick’s College Drumcondra. It was fantastic with an incredible mix of music from medieval dances to CSNY and Abba. My favourite song was Grow Old with Me by Tom Odell, a song I had never heard before by a singer whose name I didn’t know (unlike the nearly 26m viewers of the video on youtube). The version by the students was better though… as it happens he is exactly Pádraig’s age.

PS: Today was my ‘Namenstag’, my Saints Day, something that was almost as big as my birthday when I was growing up. Neither Namenstag nor birthdays are as big in Ireland as they were (are) then and there. Some even wondering whether there ever was or whether there is a Saint Reinhard:) ‘Not in this house anyway’:))

Here is no. 3: Como esperando Abril by Silvio Rodriguez, a song announcing spring, with it brighter days, hope and better times to come. – Let me know which songs touched you in 2018 (or any other time) and why. I’ll collect the titles for Pádraig’s 2018 Christmas CD.

There are moments when I hear echoes of a different life, a different reality, a different time, of what was normality. There are moments when I feel how tired I really am. That’s when I realise what different perspectives, different life circumstances can do to you, making you believe that what you experience is what is reality, objective reality. It’s when I realise that it is anything but. I am frightened when I experience these moments, when I feel that I am living a life in a permanent state of emergency. And for the time being, there ain’t anything I can do about it.

I know I should, like everybody else, have regular sleep, eat healthy and regularly and not too late in the day, make sure to exercise, drink loads of water, have time for myself. I am sure all or some of these things will by on my list of New Year resolutions. I also know that, for whatever strange reasons, I will, if at all, only partially succeed in realising any of these resolutions.

Another great day in the swimming pool with a fantastic helper. It must be one of Pádraig’s favourite days. I have to think, sometimes, of another song I heard for the first time in 1980 in Salamanca. It has a line saying “¡Oh, no eres tú mi cantar no puedo cantar, ni quiero a este Jesús del madero sino al que anduvo en la mar!” – I don’t want to sing to the Jesus on the cross but to the one who walked across the sea.

Please send on more songs. Don’t leave Pádraig stuck having to put up with “my” songs!

Come on! Join the project to prepare a CD as Pádraig’s Christmas present with songs proposed by you, his friends, songs that meant something to you in 2018, songs that he (and I) might have missed because we’re not getting out enough… AND, let us know WHY you’re proposing it! – If you’re not the type who is out there discovering new stuff, send me a link to your most favourite song, an old reliable!

Share your songs in the comment section (just to have them all in one place …and I’ll let you know the songs that made the CD! (They will all make it.)

Here’s no. 1 on the list from Brenda:

Music is so powerful, so this is a wonderful project you’re taking on. I’m too old to be “hip,” but I heard this song (“Go Left” by Radiant Children) this year, and it just lit me up, so I’m sharing this with you and Padraig. Maybe one or both of you will like it! https://www.youtube.com/watch?v=ZUaCRQ8NFtE

Well, I think: nobody listening to this kind of music is too old. Just saying…

And here is no. 2, a fantastic song from the boys from Athy, Picture This, with This Christmas. 

“I hope that you find love
And all you’re dreaming of
This Christmas
And I hope that you find peace
And your mind is at ease
This Christmas, this Christmas”

Today, we went to the launch of Dublin City University’s Ability Project supporting people with disabilities to get back into the work place. The President of DCU was there, Finian McGrath (Minister for Disability), the CEO of St Michael’s House, and Joanne O’Riordan, the young woman from Cork who, some years ago, managed to get a speaking slot at the UN General Assembly, in her wheelchair and all. She made the point that her parents had to fight to get the right support for her since the day she was born. She said she like fighting as long as it helped those coming after her. She also said that we didn’t need more experts using big words but people on the ground who really cared. – There we have something in common.

As it happens, today is the 2018 International Day of Persons with Disabilities – IDPD a day, of which António Guterres, UN Secretary-General, said: “On this International Day, let us reaffirm our commitment to work together for a better world that is inclusive, equitable and sustainable for everyone, where the rights of people with disabilities are fully realized.”

This years theme for the IDPC is: “Empowering persons with disabilities and ensuring inclusiveness and equality”. 

The UN connects the IDPC with the 2030 Agenda for Sustainable Development. I really love this quote:

The 2030 Agenda, pledging to “leave no one behind,” is an ambitious plan of action of the international community towards a peaceful and prosperous world, where dignity of an individual person and equality among all is applied as the fundamental principle, cutting across the three pillars of the work of the United Nations: Development, Human Rights and Peace and Security. It is critical to ensure, in this regard, the full and equal participation of persons with disabilities in all spheres of society and create enabling environments by, for and with persons with disabilities.

The abandonment of young (and older) persons with a severe acquired brain injury (sABI): 60-80% misdiagnosis in cases of persons in a permanent vegetative state, ‘maintenance’ programmes for people with severe acquired brain injuries in nursing homes until they eventually die, a complete lack of a rehabilitation programmes in the community, a neurological rehabilitation strategy that is now seven years old and has not a chance of ever being implemented…

… leaves all those with a sABI behind.

I rest my case.