I took loads of pictures and met some old friends   – but I’m too tired to write all this down. Pádraig was fine in Hamburg today. Can’t wait to see him tomorrow.

More details and pictures  tomorrow with a bit more time.

Good night!

I think we just got our first readers in Central and South America! It is really mind-blowing what the internet and the web have done. Here I am sitting in a dark and very quiet kitchen in Dublin, writing about Pádraig in Hamburg, and people reading about it almost immediately all over the world. I remember (oh, stop, Papa!) when I was in South America (here it goes again…) I had to book calls to let my parents know how I was (and so what???).

Anyhow. Pádraig’s OT got really excited today, and so did Pat and I. The OT gave him some simple sums, 2*4=8, 3+8=4, …. and asked Pádraig whether they were correct. And Pádraig indicated ‘yes’ (like for the first sum) and ‘no’ (like for the second). Sure, they weren’t very complicated, but, hey, here is someone with a ‘low level of consciousness’ doing sums!!! How cool is that?

The building work is progressing well: blocks and bricks should all be finished within the next few days. The roof comes next. You can recognise the wall of Pádraig’s new rooms.

Met with a few different people today to discuss An Saol, even looked at an office. Will work on action plan, organise meeting for the week of 14 September, and then start doing. With your help!

Today’s German Music Tip
BAP, Du kanns zaubere. Den Typ, den kriegst wirklich nicht mehr hin… Das es jetzt oder nie mit uns zwei passiert… For me, it’s the best love song ever. 33 years old.
What’s hot
Sums
What’s cold
Ignorance
The German word/phrase/verse of the day
Ich mag Wolfgang. (Varoufakis about Schäuble in Der Spiegel)

An  Saol  Living your life with a severe acquired brain injury

25 years ago, we were the happiest family in the world.

It was a freewheelin’ feeling’, things were just right.

25 months ago, we had all arrived on Cape Cod.

It was then that we embarked on our Odyssee, with Pádraig at the helm.

Right from the beginning, we were never alone. The crew actually grew over time, and it is still growing.

When we thought, we had lost our boat and were about to sink, his friends started to swim around the entire coast of Ireland, they were true heroes full of energy, enthusiasm, and solidarity. They were carrying our hopes. They met at huge concerts, table quizzes, special events, cake sales and races. They built a Dreamboat that is now carrying all of us along when we are tired and about to drown. They wrote, recited, and recorded poems and songs for Pádraig, we are all singing at the top of our voices as well as in our minds and in our hearts to fight the sirens.

The Odyssee is continuing but we are looking at the last legs of this journey that will bring Pádraig back home to where we started almost two years ago.

Today, Pádraig and his OT had another brilliant day together. She could not believe how well he managed to move individual fingers. – That is what is needed, a contagious enthusiasm that carries everybody along. A belief and an energy where standards don’t matter because standards are just accepted average, text book stuff. What Pádraig has achieved and is doing is way beyond that.

Tuesdays have been travel days for the past few weeks. In the pre-Ryanair age – though who remembers that, honestly? – I would have felt like a jet-setter. There would have been sufficient legroom, some nice drinks, and the most exquisite food, served by stewardesses who would have done their utmost to make this a  real pleasant experience.

Today, flights are more like bus trips in South America: squashed, hot, overcrowded, and affordable. Travelling through the night and arriving when everybody else has been asleep for hours.

It’s a special day.

25 months to the day since Pádraig was struck by Mr Couto’s van.

One month for each year of his life.

And you’ll say, tomorrow will be another day, not doubt. Better, I hope. Don’t be sad and if you are, don’t show it.

There are days like these. For me, it wasn’t a good day. It’ll pass like all days. That’s the good thing, even about bad days. They’ll all pass.

For Pádraig, I think it wasn’t too bad a day. He is beginning to warm up to his new speech therapist (or is it the other way round?) – they seem to be getting on much better with each other. During his physio, we tried out the Vojta table again which is working out really well. Having a firm base, rather than working on the bed, which is quite soft, make a huge difference, both for Pádraig, and for the person working with him. Pádraig’s physio is teaching me some exercises to do with Pádraig – and it is really ‘with’, it’s like doing them together.

25 months. One month for each of his year of his life.

Today’s German Music Tip
KC Rebell feat. Summer Cem, ► AUGENBLICK ◄. A bit on the violent side for my taste, but there you are… 
What’s hot
Stories
What’s cold
Silence
The German word/phrase/verse of the day
Das hat alles seine Ordnung so.

An  Saol  Live your Life , An Saol eile

Imagine there was as much outrage about the treatment of old people in our society as there is about the abuse of young children. After all, both are dependent and often equally helpless.

Imagine there was as much outrage about the treatment, about the abuse of persons with severe acquired brain injury. Because leaving someone lying in a bed without the appropriate care, without badly needed therapies, allowing them to acquire additional injuries, is abuse.

It was a woman on RTÉ this morning who made the first point about old people. The second point follows on logically, doesn’t it?

You already know that we did not make it to Tating this weekend. There were weather warnings being published every other hour. So today, we went again for a walk around the block. Only on the other side of the street.

I had seen the shop before but had never been close enough to actually see the exhibits in the store window. It’s a shop selling ‘fun t-shirts’.

So here are some funny Germans t-shirts.

Ich bin dick. Du bist hässlich. Ich kann abnehmen. Was machst Du?

Bei der Arbeit gebe ich immer 100%…

Das war’s

Wenn man keine Ahnung hat, einfach mal die Fresse halten

It’s difficult to translate jokes, if not impossible, and won’t try it here. My two favourites were the one about being overweight (Ich bin dick. Du bist hässlich. Ich kann abnehmen. Was machst du?) and the one about know-alls (Wenn man keine Ahnung hat, einfach mal die Fresse halten). They both made me laugh, for different reasons.

It’s good to have a routine. It re-assures, it’s predictable. That’s why I like it. But where is the fun in that? So, next time, I’ll walk a different way again, and if it’s just on the other side of the street. Who knows, I might discover more fun things.

This afternoon Pádraig did what we had been doing every year, except for the last two years: we watched the really exciting, beautiful final of the Tour de France. A nice, relaxing end of a good day.

Lastly, and I almost forgot to mention it, today is Mick Jagger’s 72nd birthday (check out Wild Horses)  and the second anniversary of J. J. Cale’s fatal plane accident (check out this long and brilliant video recording with Leon Russel)

Today’s German Music Tip
Max Mutzke, Welt hinter Glas. This song was posted just over a month ago. Though it didn’t become an instant hit, the Germans commenting on it think it’s an “Ohrwurm”. It’s not bad, neither the typical, unbearable, mainstream German Schlager, nor rap.
What’s hot
Wild Horses
What’s cold
No music
The German word/phrase/verse of the day
Selten so gelacht!

An  Saol  Live your Life , An Saol eile

In Germany, there is one way of doing things. A right way. And a wrong way. There are loads of laws and regulations, contracts, signs, warnings, police, bureaucrats, and little green and red men in traffic lights to help you find out what is right and what is wrong. That’s why life in Germany is so easy. And that’s why the country is so well off.

That is also why I screwed the handle of our pot back on the right way, the way it was when we got it. It was easy. And pretty obvious the way the handle had to go on.

Unfortunately, the handle always became loose again after a day or two, no matter how hard I tried.

Then, just a few days ago, Pádraig’s helper, who is from Poland and who has thick glasses, decided to do some good. He organised himself a screwdriver and screwed the handle back on to the pot.

Only that he did it upside down..

I was going to talk to him about this – I like things being done properly. The way they are supposed to be done. And there is only one way of doing things right, which is easy in the case of handles to be screwed on to a pot – unless you have thick glasses,  I thought.

Then I noticed that, for a few days now, the handle didn’t get loose anymore. Upside Down works!

I’ll leave it up to you to get the lesson….

Last night, Pádraig had a few uninvited visitors: almost a dozen wasps had somehow ‘invaded’ his room. Pat managed to get most of them during the night and I got the remainder in the morning. Really strange, this wasp business. Pádraig himself was well today. He continued to make sounds when he wanted to – for example when his uncle from America rang. He’s also doing really well with his three meals a day.

We had planned to go up to Tating either today or tomorrow, just for the day and with Pádraig, but the weather is incredible with loads of wind and more rain, as well as thunder. So we took a walk around the block instead…

Today’s German Music Tip
Deichkind, So`ne Musik. Wirklich – so’ne Musik!!!
What’s hot
Up
What’s cold
Down
The German word/phrase/verse of the day
Na hörnsema, wenn das jeeda machen wüade – wokämenwadahinn?

An  Saol  Live your Life , An Saol eile

Well, talk about stuff happening.

Last night, Pat had a bad night, because it was her turn with Pádraig and, no matter what she tried, he didn’t sleep and, “worse”, he didn’t keep quiet. I put “worse” within quotes because Pádraig making all those sounds on one hand prevented Pat from having a quiet night’s sleep; on the other hand, well on the other hand, we would give a kingdom if Pádraig started to use his voice again.

That’s what he did today. He is, clearly, becoming more aware of his voice, and he is learning how to use it.

Then, and we “blame” his OT for this one, he is now clearly helping when we put a cup into his hand and support him bringing it up to his mouth. Even better, because he is bringing the cup up to his mouth himself, he is more aware that liquid is about to enter his mouth, which in turn makes it much easier for him to swallow.

If proof was needed that therapy is more than just an expensive largely useless maintenance programme, here is (yet another) proof to the contrary.

Here is to progress!

Dreamboaters never give up because they know that even little signs are signs of things to come as long as you believe in your own strength!

Today’s German Music Tip
Roland Kaiser, Warum hast du nicht nein gesagt (feat. Maite Kelly). In case you ever wondered why rap is so popular in Germany, listen to this more ‘traditional’ German “Schlager”. Oh mein Gott! They are blaming each other for not having said ‘no’ to you-know-what.
What’s hot
Voice
What’s cold
Silence
The German word/phrase/verse of the day
I thought, a “Bild” says more than a thousand words. Here is the first of a few pictures from Germany’s worst, but most widely read newspaper, the “Bild-Zeitung” on what is “typisch Deutsch”

An  Saol  Live your Life , An Saol eile

Pat came across a few really witty designs in a Spanish newspaper. Luckily, I found them on the web because by the time I wanted to take a picture of that paper, it had magically disappeared.

I haven’t followed closely Spanish politics in recent times but from the little I know there are very significant changes on the way. ‘Podemos’ does not just mean ‘yes, we can’, it also became the name of a new party. And they have come up with a very smart way to promote ‘revolution’ – with love at the centre (I had to look twice before I saw it).

Thursdays in Dublin are getting-up-early-days. Ryanair leaves Dublin for Bremen at 6.10am. Today, however, it was pure luxury. A good friend had offered to give me a lift up to the airport, so I did not have to worry about getting busses. So much more relaxed, less stressful!

Pádraig just had home made spaghetti with home made pesto. Although he seemed to be as tired as I feel, I finished a full portion – not a huge portion, but a good portion. And he enjoyed it. His day has been pretty full: physio and speech therapy, MOTOMed, and a long walk in the park.. Looks like an early night for all of us tonight.

In Dublin, I went through the Irish Times of the last weekend. There was a long report there about a young man who had been awarded around 10m euro on top of approximately 5m euro he had received earlier in a case of medical negligence that left him with a severe acquired brain injury. 15 million euro. That is what the court decided and the parties agreed will be necessary to look after this man for the rest of his life. Also were told to listen to today’s Brendan O’Connor Show. He discussed the lack of funding with the mother of someone who had suffered a brain injury at birth. Well worth listening to.

The monthly cost of a nursing home plus an hour or two of therapy a week for their sons and daughters is around 8,000 euro, or less than 100,000 euro a year, for the families we know, a cost that is in most cases paid for by the HSE. If that young man in his thirties (if I remember correctly) lived another 40 years, lets say, his total cost for the nursing home would be 40 x 100k, or 4 million euro.

That is about a *quarter* of what the court felt was necessary to look after someone with a severe acquired brain injury in its opinion, an opinion backed up by many expert reports! How can that be? – Also, unlike many health professionals in charge of our health system, the court did not feel that this amount (that will have to be recovered from either the tax payers of by insurance companies recovering this money via our policies) represented a bad return on investment and should therefore not be ‘wasted’ on a hopeless case.

I wonder whether anyone sees the sad, terrible irony in this judgement when comparing its outcome to the ‘normal’ limited and inadequate treatment of persons with brain injuries in nursing homes?

Another week is almost over. Block-laying should have started today! It’s all downhill from here onwards – in the German, freewheeling way of looking at the world:)

Today’s German Music Tip
Matthias Schweighöfer, Fliegen. A song about making anything possible.
What’s hot
Yes, we can. Courts acknowledging the need of persons with severe ABI.
What’s cold
Lack of therapy
The German word/phrase/verse of the day
Wenn Unrecht zu Recht wird, wird Widerstand zur Pflicht. (Berthold Brecht)

An  Saol  Live your Life , An Saol eile

There is a scholarly article about the implied non-reader. Yes. No mistake. It is not about the ‘implied reader’ which is an old hat, really, but, indeed, about the ‘implied non-reader’. In essence, the article is about the craze to publish in the academic world, even if you haven’t really anything new to say. Anyway, no academic publishes anymore because they have anything important to say, but because they need to collect brownie point, nowadays called h-index or impact factor. So they publish and then make sure they get cited. The focus has shifted from the content, to strategies to grow your h-index.

When I started to write this blog, I wrote for the implied ‘non-reader’. I didn’t really think anyone would read this. Then when I realised that there were actually people reading it, I got a bit nervous and self-consious. Your writing is better when writing for the implied non-reader because you just write for yourself the way you feel and the way you see life and the world. Once you start writing to the implied reader, you start worrying about other people, what they think and what they feel, and you start not writing certain things because they are private or could be offensive, or even libel.

Patrick today had another session with his new speech therapist and it almost seemed like if he had decided not to cooperate. As if they didn’t get on with each other. As if they didn’t connect. We’ll give it another go and the re-consider. Out in the park Pat discovered that a good Innocent smoothie is still a favourite – no bother even drinking it out of the bottle!

Progress with the building work has been slow last week. When you look at the picture your first thought might be that they put up the block, but in the wrong place and without any cement. The thing is that they did not start yet laying the block. That will happen tomorrow. It’ll be finished in 2-3 days. Next will be the roof. And it’ll be downhill from there!

Today’s German Music Tip
Gregor Meyle, Keine Ist Wie Du. This is what you could call ‘schmalzig’, but I kind of like it, what Joan Baez called ‘nostalgic’ in Diamonds and Rust.
What’s hot
Blocks
What’s cold
Looking back
The German word/phrase/verse of the day
Volle Pulle!

An  Saol  Live your Life , An Saol eile

I promised myself a German tour before the end of the summer. Before returning home. Home. Connecting with previous lives. Saying good-bye to it. Not forever, maybe, but for the foreseeable future, most likely.

Today it was Cologne, the first ‘stop’ and just for a few hours, between the time my train arrived and the time the only affordable Ryanair flight out of Germany to Dublin today was going to leave. You could be in different minds, I guess, about whether doing something like this makes sense at all. Sometimes we all do things that don’t make sense. But feel good and feel right.

Back in Cologne, for a few hours, I went back almost 35 years in my life. Studying. Kinda. Without a bother in the world. Carefree.

Just arrived back home. Earlier than I’d thought because I got a really nice surprise lift from one of our daughters. Almost couldn’t get into the house because of all the blocks waiting to become the walls of Pádraig’s new rooms. So great to see them!

On the plane I talked to a German woman who is coming over to Ireland for a week’s holidays. She is a Biodancer instructor. She told me about her work and the effects of biodancing, how biodancing can be used to express yourself, to communicate, to experience others in dancing. She said that physical contact, touch, is so important for our well-being.

Whether you believe in coincidences or not, I think there was a very valuable lesson here for Pádraig and for us when caring for Pádraig. The important of touch and physical contact for his physical and mental well-being.

When I left this morning, Pádraig had just woken up and was getting ready for the day. He had a good day, with his usual meals and the walk in the park. There is almost a sense of routine, or normality.

Today’s German Music Tip
GENETIKK, Wünsch dir was. Das Leben ist kein Wunschkonzert. Du musst dran glauben und dann erfüllt sich was. Super Rap on a Mission.
What’s hot
Timetravel
What’s cold
Being stuck in time
The German word/phrase/verse of the day
Hasse keinen Frisör deme das erzählen kann?

An  Saol  Live your Life , An Saol eile