Gordic

Tuesday is swimming day. Not today. On the way back from a meeting, I got stuck in Christmas traffic and by the time I made it home there was no point in going. It was too late. Three people had been waiting for me. Pádraig was ready to go. I should have left that meeting earlier or, even better, I should not have organised it at all. We’ll be going tomorrow.

There is no generosity, there is no “Mitgefühl”, no compassion or sympathy, when you leave someone waiting. It was up to me to make this work. Everybody else was ready. I just had to show up at the right time. How easy can it get?

What I am doing is complicated, or, maybe, I’m just making it complicated. I want to make many things happen all at the same time. Too many perhaps.

In my mind it’s the Gordic Knot syndrome that is complicating stuf. It’s waiting to be cut.

 

IndependenceDay

Pádraig went out for a brilliant Christmas lunch time break to the Omni, one of Ireland’s first big shopping centres, so old that it had to undergo a very substantial refurbishment not too long ago and is now back to what it was when it opened, about three decades ago – only twice the size.

It was the first time that he had ever been out with someone for lunch. He was in good hands, with two of his professional team who had come up with the idea and had selected the venue. It was a perfect two hours for him, not only because Pádraig got completely pampered but also because he must have felt so happy (and probably relieved) to experience that he doesn’t need us to be with him all the time and that he can have a life outside the home and without us.

That is a big first and a big step towards independence. (A big thank you to “Santa’s Helpers” who made this possible.)

Vlad

He had brought his four brothers, his sister, his wife, his daughter, his mother, his father, and his grandfather. We had paid for two tickets and got one free for Pádraig. It was the 10th anniversary Christmas with Vladimir concert in the National Concert Hall. It was a bit heavy on the family thing, and it was close to the original man from Vienna, Andre Rieu, but the music was good (that is, if you like this kind of music).

They really tried hard to make it sound Viennese, don’t they?

Pádraig enjoyed the concert, although he said it wasn’t that much better than the free concert at lunch time in St Patrick’s College on Wednesdays. I think, he was winding me up.

Update

For the first time, An Saol had organised an update meeting on its day centre project. We had invited the families who we thought would be interested and there was even one we had never met before previously.

At the same time we had a Christmas get together with great cakes and biscuits as well as tea and coffee.

Für an afternoon, there was a sense of something finally about to happen. Something good.

A lot of work, a lot of patience, a lot of everybody pulling their shoulder against the wheel.

TwistLock

The way to really make an impact, to change the world, and get rich in the process, is to come up with a great idea, to patent it and then just sit down, relax and wait for the money to roll in. And the world to change because of your great idea.

Wrong.

There are many examples, from the 45o screw to great medicines to container standardisation, that prove: real change only happens when people share their ideas and make them freely available.

A recent ‘back story’ from the NYT is a perfect example of this:

Invented in the mid-1950s by Keith Tantlinger, the twist lock, a simple device, made it possible to stack cargo containers aboard ships and securely attach them to truck trailers and rail cars.

Twist locks are placed into the corner fittings of shipping containers, which can then be locked to others by turning a metal handle. They’re simple to operate and extremely secure.
To be useful, containers had to be standardized, and others had developed rival ways of stacking them. But after Mr. Tantlinger persuaded his former employer to release the patent royalty free, it was adopted as an international standard.
These standardized stackable containers quickly replaced the manual loading and unloading of cargo and the cost of transport plummeted, ushering in the current era of global trade.

This is not what you learn in college or business school: you have to share your knowledge with others, openly and freely, if you really want your ideas to take off.

Pádraig has started to move in quite impressive ways on his floor exercise matt during his physio sessions. What is worrying me a little is that he seems to continue with these movements when he is in his chair. There is probably nothing to worry about. He is discovering muscles he had all but forgotten about and is trying to coordinate them. For whatever reason he is doing it, he says that nothing is hurting him. Hopefully, this is just a phase that he will get over with once he has learned iiiiid

Fashion

Cambridge Analytica, the British not-so-popular-anymore voter-polling firm, used fashion tastes to identify right-wing voters, according to a founder turned whistle-blower and a recent report in The New York Times. “Easy”, I hear you saying. Pin-striped suits, tweet jackets, top hats, Diamond Forever Classic or Ginza Tanaka handbags, are not the stuff of left-wing revoluzzers.

But, as Aesop once said, appearances are often deceptive

What might look dangerous. could be a ‘small fish’. Big problems can turn out to be just smokescreens. Tiny problems can quickly become matters of life and death.

 

Climate

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…

Café

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.

Sliding

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.

Trauma

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.